1. Introduction

Good infection prevention and control (IPC) measures are essential to ensure that adults who are living in their own homes and whose care and support needs are met service providers and visited at by adult social care (ASC) staff, receive safe and effective care. It must be embedded into everyday practice, with the same high standards applied by all staff.

This chapter outlines the different areas in which action must be taken to keep adults and staff safe.

2. Processes

2.2 Training and information

All relevant ASC staff should complete IPC training as part of their induction and regular update training should also be provided. Additional training may be required in response to an incident or particular circumstances, such as the covid pandemic.

2.3 Audit

ASC should ensure there is a robust audit process to ensure that all necessary IPC processes are adhered to. This should include a review of care and support practices to ensure that principles and guidance covered in training are being fully implemented.

It will be the responsibility of the ASC IPC lead to ensure that any corrective actions identified as a result of an audit are implemented within the agreed timescales.

3. Infection Prevention and Control Risk Assessments

Staff should ensure that risk assessments in relation to IPC risks for adults who receive care and support at home, are carried out:

• during the first contact with the adult; and
• reviewed at agreed intervals or sooner if changes occur.

The risk assessment should be recorded and should identify any steps required to eliminate, reduce or control risks from infection.

Where required, and together with health practitioners, the IPC lead should monitor the risks of infection to determine whether further steps are needed to reduce or control infection.

3.1 Infection risk assessment

Assessing a person’s risk of catching or spreading an infection and providing them with information about infection is essential for the adult’s safety.

Where there is a medical history or risk of infection, this should be included in their assessment, care and support plan and review of the plan. The assessment should determine whether any extra IPC precautions are needed, such as whether staff need to wear additional personal protective equipment (PPE). It should include all factors which may mean the person is at higher risk of catching or spreading infection including:

• symptoms:
  • history of current diarrhoea or vomiting;
  • unexplained rash;
  • fever or temperature;
  • respiratory symptoms, such as coughing or sneezing;
• contact:
  • previous infection with a multi-drug resistant pathogen (where known);
  • recent travel outside the UK where there are known risks of infection;
  • contact with people with a known infection;
• person risk factors:
  • vaccination status which will assist assessment of their susceptibility to infection and allow protective actions to be taken when necessary;
  • wounds or breaks in the skin;
  • invasive devices such as urinary catheters;
  • conditions or medicines that weaken the immune system;
• environmental risk factors, such as poor ventilation in the home (Infection Prevention and Control: Resource for Adult Social Care (Department of Health and Social Care).

4. Reducing the Risk of Spreading Infection

4.1 Actions

Staff who are suspected or have contracted an infectious disease should be placed on sick leave and contact / visit their GP or other medical services for assessment and treatment as necessary.

Specialist health and safety advice may also be required to provide further guidance. ASC staff should work with health professionals, the adult and their family in order to provide continuing care and support to the adult and reduce the risk of further spread of infection.

Staff should wear any additional PPE as required.

4.2 Control principles

There are a number of control principles for care staff as outlined in Infection Prevention and Control: Resource for Adult Social Care (Department of Health and Social Care):

‘Reducing the hazard

Public health measures such as vaccination, testing and isolation help to reduce the risk of infection. Vaccination against respiratory illnesses such as flu and COVID-19 is an important measure in reducing the risk of severe disease. Measures such as not coming to work when ill, advising people to isolate while infectious and recognising and reporting infections promptly, all help to prevent infections spreading at work.

Changing what we do

When faced with a particular risk, such as an outbreak, we may need to change what we do. This might include reducing communal activities, limiting visiting, or adding disinfection into a more frequent cleaning schedule, for example.

Changing where we work

We may not be able to change where we work but the work environment can be made as safe as possible. For example, by improving ventilation, ensuring fixtures and fittings are in good repair and can be easily cleaned and following water safety guidelines, we reduce opportunities for pathogens to survive in the environment.

Changing how we work

Changing the way we organise work can reduce risk. Examples include reducing the number of people in a space at any one time and minimising the movement of staff between different settings. Administrative controls such as risk assessments, training, audit, and providing clear signage and instructions also help to reduce the risk of infection at work.’

4.3 Standard infection control precautions

See Infection Prevention and Control: Resource for Adult Social Care, Preventing Infection section (Department of Health and Social Care) for a full current list of infection control precautions.

5. Responding to Infections

5.1 Medical intervention

At the first sign of any transmissible illness, the adult’s relatives should be informed. With the adult’s permission (or their carer if the adult does not have the mental capacity to consent – see Mental Capacity chapter), their GP should be contacted and a visit requested.

Where the illness is more urgent the ambulance service should be contacted and visit the adult to conduct an assessment. If it is suspected that hospital or Accident and Emergency admission will be necessary, the hospital should first be contacted for advice, as it may not be advisable to take an adult with an infectious illness to an area where there are other people.

The adult’s GP should arrange any relevant testing required for diagnosis, treatment and management of the illness. Staff should ensure that the adult receives any treatment as prescribed by the doctor.

5.2 Obtaining advice

ASC staff or the manager should obtain advice from relevant health practitioners whenever required.

6. Cleaning

6.1 Cleaning

See also Infection Prevention and Control: Resource for Adult Social Care, Preventing Infection section (Department of Health and Social Care)

When working with adults in their own homes, levels of tidiness and cleanliness will vary, but staff should always adhere to the same principles of IPC whatever the circumstances in which they are working.

Where there is equipment in the adult’s home for use during the provision of care and support, for example hoists, beds and commodes, they should be cleaned and disinfected as required.

Staff should ensure there is adequate and suitable hand washing facilities and anti-microbial hand washes where required. This may include being issued with pocket sized bottles to use if there are no adequate facilities in the adult’s home.

7. Information

7.1 Information to adults and their visitors

Information on the general principles of infection prevention and control should be available to all adults, their relatives, friends and any other visitors to the adult’s home. This is particularly important if an adult as a medical history of, or is at risk of, infection. This should include:

• general principles on the prevention and control of infection;
• supporting adults’ awareness and involvement in relation to IPC;
• the role of adults (where appropriate), carers, relatives and advocates in IPC;
• the importance of hand hygiene measures;
• reporting any concerns about hygiene or cleanliness;
• providing explanations of incidents / outbreaks.

Where staff have any concerns, they should report them to their manager. The manager may need to consult a specialist IPC adviser, the outcome of which should be shared with the adult’s and their family as appropriate.

8. Relevant Information

Infection Prevention and Control: Resource for Adult Social Care (Department of Health and Social Care)

1. Working with Adults who cannot make Decisions themselves

When working with an adult who lacks mental capacity, it is important to be clear about who the decision maker is.

When practitioners are supporting an adult who lacks the mental capacity to make decisions regarding health and welfare or property and finance, it is important to find out if there is a ‘lasting power of attorney’ (LPA) or ‘deputyship’ in place. The Office of the Public Guardian (OPG) can provide information on whether a person has an LPA, enduring power of attorney or court appointed deputy (see Find Someone’s Attorney, Deputy or Guardian).

An LPA is a legal document that enables a donor (that is the person who wants to have the LPA) to select an attorney (the person the donor has chosen) to act on their behalf in relation to two types of decisions:

1. health and welfare and / or;
2. property and finance.

A donor can have a number of attorneys and replacement attorneys (these are attorneys who will step into the role of attorney if the current named attorney/s can no longer act). When there are a number of attorneys, the donor needs to choose if they will act ‘jointly’ (which means all attorneys need to make a decision together), or ‘jointly and severally’ (which means attorneys can make decisions together or separately) for specific decisions.

For health and welfare matters, the donor must lack the mental capacity to make the decision in question before the attorney/s can take over this role (this can be different for property and finance (see Section 1.1). The reason someone may lack mental capacity is usually either because of a lifelong disability that affects their cognition, such as a severe learning disability or a progressive condition such as dementia. However, it is important to remember that just because someone has an impairment of, or a disturbance in the functioning of the mind or brain it does not automatically mean that they cannot make a decision. A mental capacity assessment will need to be carried out to evidence why the person cannot make a particular decision. The mental capacity assessment will look at the person’s diagnosis, how they present and how this is impacting them (causative nexus). (See Mental Capacity and Code of Practice chapter.)

There are two options for LPAs: property and finance or health and welfare. The donor can apply for both or just one.

1.1 Property and finance

Property and finance cover matters such as selling a property, paying bills, withdrawing money, paying care fees, accessing bank accounts and investments, pensions and benefits.

When a person has mental capacity, they can legally appoint someone as their attorney with LPA for property and finance. A difference between property and finance and health and welfare LPAs is that for property and welfare, the donor can select that they are happy for the attorney to act on their behalf even while they have the mental capacity. Alternatively, the donor can set up the LPA so that the attorney can only act on their behalf if they lack mental capacity. The donor also has the option to set instructions on what the attorney can and cannot do. This means it is important that practitioners check the specific details in the LPA document whenever they are working with someone who has an LPA.

1.2 Health and welfare

Health and welfare covers, for example, decisions around medical care, care needs, moving into a care home or staying at home and how support needs will be met (see also Lasting Power of Attorney: Acting as an Attorney: Health and Welfare Attorneys (gov.uk).

Health and welfare LPAs only become valid when the donor lacks mental capacity to make the specific decision for themself. When completing the application, the donor has the option of selecting if they also want the person they appoint as attorney to make decisions about life-sustaining treatment on their behalf. It is important to remember that life-sustaining treatment can also cover things such as antibiotics due to having pneumonia or being put on a ventilator.

When healthcare or social care staff are involved in preparing a care plan for someone who has appointed a health and welfare attorney, they must first assess whether the donor has the mental capacity to agree to the care plan or parts of it. If the donor lacks mental capacity, practitioners must consult the attorney and seek their agreement to the care plan. They will also need to consult the attorney when considering what action is in the person’s best interests.

In practice, if the person is paying for their own care, there may be more choice about, for example, the choice of a care home than if the local authority or NHS is paying. If the local authority or trust is paying, the person choosing the home should still have a choice of care home. However, the list will be limited to the homes that the local authority or trust will fund. In either situation, the legal decision-maker is the attorney acting in accordance with the LPA.

2. What Happens when an Adult Lacks Mental Capacity – Can Someone be Appointed to act as their LPA?

No, at the time of applying for LPA the donor must have mental capacity. If an adult lacks the mental capacity for this decision, the person wanting to act on their behalf would need to apply for a deputyship. Deputyship is put in place by the Court of Protection; the person wanting to be the deputy has to make the application to the court.

The application to the Court will include a mental capacity assessment (which will be completed by a medical professional or a social worker) to evidence that the person lacks the mental capacity to make decisions as to how to manage their property and finances or health and welfare. The Court will decide if the applicant can act on the person’s behalf. There are a few differences between deputyship and LPA, for example with health and welfare, the life-sustaining treatment option is not applied to deputies. This is due to this being such a significant decision the courts believe that this should be made following consultation with all those involved.

3. How to Check if there is a Valid LPA in Place

The Office of the Public Guardian (OPG) holds the records of all registered and valid LPAs (this includes enduring power of attorney and deputyship).

If someone says they have LPA for property and finance and / or health and welfare, the practitioner must ask the attorney to provide the original document which has the OPG reference number. The information is in page 1 in Section 1: The donor; the registration date and reference number are at the bottom marked for ‘OPG office use only’.

If the paperwork is not available, the OPG can carry out a check to see if there is a valid the LPA. This can take some time, therefore if an urgent response is required (for example as part of a safeguarding enquiry), this can be requested online using a template. The OPG normally responds within 48 hours to urgent requests.

Alternatively, the donor or attorney named on the LPA can provide an LPA access code. Practitioners can use the code online to:

• view a summary of an LPA;
• check whether an LPA is valid;
• check who the attorneys are on an LPA.

See View a Lasting Power of Attorney

4. Other Types of Legal Authority that can Support the Adults when making certain Decisions

There are a number of other types of legal authority that can support adults when making particular decisions. These are:

• enduring power of attorney: this was in place before LPA was introduced in 2007. It only covered finance and property. Enduring power of attorney could only be registered when a person lacks mental capacity. This is no longer appointed and there are not many remaining in place;
• advance decision: this can only be used to refuse medical treatment. To be valid the person must be 18 or over, have the mental capacity to have made an advance decision, which is witnessed, and signed (and therefore is legally binding). Practitioners may come across advance decisions for finances and property; these should not be ignored but instead would need to be considered under ‘wishes and feelings’ (which is a formal term used as part of best interests decisions). See also Advance Care Planning chapter);
• best placed professional: if none of the above are in place, the most relevant professional becomes the decision maker for the specific decision in question, for example medical decisions would be the responsible doctor; care and support needs it would be the social worker; for managing finances it would be the social worker;
• Court of Protection: At times the decision may be made by the Court of Protection. This includes when a decision is in dispute, or it is an ‘excluded decision’, which a practitioner has no legal authority over, such as if the person lacking mental capacity wants to get married (see Mental Capacity Code of Practice chapter).

4.1 Other important considerations

Advance statement: This contains the person’s wishes and feelings for example how they want to be cared for, where they want to live etc. It is not legally binding, but the person’s views need to be considered and the decision will be heavily weighted by this.

Next of kin: The person’s next of kin has no legal decision-making authority to make decisions about the person. They would need to have LPA or a deputyship in place. However, practitioners still need to take into consideration their wishes and feelings.

5. Consulting with Others

The attorney has a duty to make decisions subject to the provisions of the Mental Capacity Act (MCA) 2005 (as amended) (including acting in accordance with the principles in section 1 of the MCA and the provisions relating to acting in the donor’s best interests in section 4 of the MCA) and to any specific conditions or restrictions imposed by the LPA.

When deciding what is in the donor’s best interests, attorneys should consider the donor’s past and present wishes and feelings, beliefs and values. Where practical and appropriate, they should also consult with:

• anyone involved in caring for the donor;
• close relatives and anyone else with an interest in their welfare;
• other attorneys appointed by the donor.

An attorney can only consent to or refuse life-sustaining treatment on behalf of the donor if, when making the LPA, the donor has specifically stated in the LPA document that they want the attorney to have this authority. As with all decisions, an attorney must act in the donor’s best interests when making decisions about such treatment. This will involve applying the best interests checklist and consulting with carers, family members and others interested in the donor’s welfare. In particular, the attorney must not be motivated in any way by the desire to bring about the donor’s death.  Anyone who has concerns that the attorney is not acting in the donor’s best interests can apply to the Court of Protection for a decision (see Best Interests chapter).

6. What if the LPA or Deputy Refuses to make the Decision?

Attorneys have a duty not to delegate their decision-making responsibilities to others and must carry out their duties personally, unless authorised by the donor to delegate specific decision-making responsibilities. The attorney may seek professional or expert advice (for example, investment advice from a financial adviser or advice on medical treatment from a doctor). But they cannot, as a general rule, allow someone else to make a decision that they have been appointed to make, unless this has been specifically authorised by the donor in the LPA.

In certain circumstances, attorneys may have limited powers to delegate (for example, through necessity or unforeseen circumstances, or for specific tasks which the donor would not have expected the attorney to attend to personally). But attorneys cannot usually delegate any decisions that rely on their discretion.

Where an attorney refuses to comply with their responsibilities, application may need to be made to the Court of Protection for a decision to be made.

7. What if there are Concerns about the Attorney / Deputy?

At times practitioners may have concerns with the LPA or deputy that is in place. This can include things such as the appointed person not acting in the person’s best interests, suspected financial abuse by the appointed person, the appointed person selling the individual’s property when this is not in their best interests, etc. If a practitioner has any concerns about an LPA or deputyship that is in place, it may be appropriate to first work with the attorney to come to a resolution, for example via mediation. However, the practitioner should contact their local safeguarding adults team if they are concerned the attorney is financially abusing or has harmed the donor. Where there are potential criminal offences, the police should be informed. The practitioner will also need to contact the OPG. The OPG can apply to the Court of Protection to remove an attorney if there are concerns about their behaviour.

8. Ending a Lasting Power of Attorney / Deputyship

The donor can end the LPA at any point as long as they have the mental capacity to make such a decision. The attorneys themselves can also remove themselves from the role. The attorney will be asked to return any legal documents to the OPG.

The attorney’s role will also be ended if the donor passes away, the attorney passes away or loses mental capacity and a replacement attorney was not named, or the donor did not state that they must act jointly if the donor’s marriage to the attorney ends and if the attorney of property and finance becomes bankrupt.

With some LPAs there may be a named replacement attorney who would be able to pick up this role if the current attorney is unable to act anymore.

9. Case Examples

9.1 Case example for an adult who self-funds their care and support

Mary has dementia and has been cared for at home with a package of care funded by the family. However, there have been several incidents that have led to Mary assaulting her husband meaning her needs can no longer be met at home. The husband holds an LPA for Property and Financial Affairs and Health and Welfare. The husband has requested a Care Act assessment and following a financial assessment, Mary has been assessed as self-funding her care. The husband has spoken to the social worker who has advised that a care home would be most suitable for Mary. The husband spoke to the GP and the district nurse about this decision as he wanted to seek their views. The social worker advised the husband that it was his decision to choose the care home and provided some information on care homes that were potentially suitable to meet his wife’s needs. As Mary was self-funding her care and LPA was in place, the decision maker was her husband. Her husband informed the social worker that his wife loved living in the countryside, and it would be important to her that the care home be somewhere quiet, with not too many residents, and had lots of space for his wife to wander the grounds.

The MCA is underpinned by five key principles. In line with these, the LPA or deputy must consult with others who are relevant to the decision being made and must act in the person’s best interests. In the example above, Mary’s husband has consulted with relevant professionals and has followed Mary’s views and wishes when it comes to finding a suitable placement for her.

If in this example, the local authority was funding the care and support, the person choosing the home on Mary’s behalf (her husband) should still have a choice of care home, but the choice will be limited to the homes that the local authority will fund. In either situation, the legal decision-maker remains the attorney (Mary’s husband) acting in accordance with the LPA.

9.2 Case example for an adult who needs medical treatment

Tom has a severe learning disability and has been admitted to hospital due to having eating and drinking difficulties. After further investigations, the consultant has recommended that Tom requires a PEG (percutaneous endoscopic gastrostomy). Tom’s parents try to refuse this treatment stating they have an LPA ‘for everything’ and that they want Tom to be able to eat ‘normally’ and not via a tube. However, upon the social worker submitting an urgent request with the OPG, the OPG confirm that Tom’s parents have LPA for property and finance only. Therefore, the decision maker will be the consultant.

If there is no LPA / deputy in place, the relevant practitioner is the decision maker, depending on the decision that needs to be made.

However, in such cases just because family are not the decision maker does not mean they do not have a voice. With any decision, the family’s views are important and hold weight towards the decision. If a unanimous decision cannot be reached, a court application may be required to make the decision.

9.3 Case example for an adult who is Continuing Health Care funded

Helen is fully health-funded and is currently in a nursing home that is closing down. The Continuing Health Care (CHC) nurse has checked their system which states there is no LPA / deputy in place. However, there is also no evidence of how this was checked. The CHC nurse ensures that they complete a check with the OPG who confirms there is no LPA / deputy in place. The nurse saves this email confirmation to the person’s record. The CHC nurse is the decision maker regarding the move to a new placement, they ensure they speak to all involved in the person’s care to gain their views including family. All interested parties agree one of the placements is in Helen’s best interests to move to.

With CHC cases it is important to make sure they are funding 100% of the care, if a split funding agreement is in place, then the local authority is the decision maker.

10. Useful Information

Best Interests Decision-Making for Adults who Lack Capacity: A Toolkit for Doctors Working in England and Wales (BMA) 

Find out if Someone has a Registered Attorney or Deputy (Office of the Public Guardian) 

LPAs – the Duties on the Certificate Provider (Mental Capacity Law and Policy) 

Mental Capacity Code of Practice (Office of the Public Guardian) 

Urgent Enquiries: Check if Someone has an Attorney or Deputy (Office of the Public Guardian) 

View Lasting Power of Attorney (gov.uk) 

Using a Lasting Power of Attorney (gov.uk) 

1. Introduction

When a person who does not have mental capacity does not have someone suitable to act on their behalf, such as a family member, friend or professional adviser, the Court of Protection (CoP) may appoint an independent person– called a deputy – to act on their behalf (see Mental Capacity Act and Code of Practice chapter).

For adults using the local authority’s Adult Social Care (ASC) services in these circumstances, the officer authorised to act as a corporate financial and property affairs deputy (the corporate deputy) is the ASC Director.

The corporate deputy’s duties and responsibilities are in turn delegated to the Client Affairs team (see Section 5.2, Corporate Deputyship). The team is supervised by the Office of the Public Guardian (OPG), which oversees all deputies appointed by the CoP. When required, the Client Affairs team can also apply to manage Department for Work and Pensions (DWP) arrangements for an adult, as appointees.

This chapter outlines the role of the Client Affairs team when acting on behalf of an adult to manage their financial and property affairs.

2. Eligibility

To be eligible for support from the Client Affairs team, the following criteria should be met:

• the adult has been assessed by the local authority as having care and support needs;
• they do not have any suitable family, friends and associates or professionals who can support them with managing their finances;
• they lack the mental capacity to manage their financial affairs;
• they have less than an amount specified by the Client Affairs team. If they have more than this amount, the team will consider whether they will manage the adult’s affairs;
• the adult does not already have an appointee or lasting power of attorney (LPA) which was made before they became unable to manage their finances; or
• the existing appointee, LPA or deputy has been removed by the DWP / OPG or is otherwise giving up their role.

3. Referrals to the Client Affairs Team

Referrals to the team can be made internally by social care or health staff employed by the local authority. The OPG can also ask the team to act as deputy, to replace a current deputy or attorney.

In order to accept a referral, the following information needs to be up to date and sent to the team:

• all financial and other required details;
• a mental capacity assessment, which confirms the adult lacks capacity to make specific decisions about their property and financial affairs;
• confirmation the referral is in the adult’s best interests;
• confirmation that there is no other suitable person who is willing / suitable to manage the adult’s property and financial affairs.

Online banking facilities are used to manage bank accounts.

4. Applications for Authority where there is no other Suitable Person

Where an adult is in receipt of state benefits / pension, the Client Affairs team should apply to the DWP for authority to be their DWP appointee. They can then receive welfare benefit payments on behalf of the adult and manage their living expenses.

Applications can also be made to the CoP for a property and financial affairs deputyship order.

Where an adult has capital and / or private income in addition to state benefits, the Clients Affairs team should apply for both appointeeship and deputyship.

It may be necessary to request an interim order if there are urgent issues that need action before a final order can be made. Examples include a need to restrict access to the adult’s bank account when there are concerns of financial abuse, or a social housing tenancy needs to end and the property cleared, as the adult has already moved into permanent residential care.

Instead of applying for a deputyship order, a panel deputy can be nominated by the CoP to manage the adult’s affairs. This may be necessary when, for example:

• property and financial affairs are complicated; and / or
• there are legal complexities (for example divorce proceedings).

In such circumstances, the Client Affairs team should make the request to the CoP.

5. Authority to Act

The Client Affairs team cannot start managing an adult’s affairs until DWP appointeeship has been granted, or the CoP interim or final deputyship order has been confirmed.

Once authority has been granted, the team should:

• inform all the relevant parties (for example banks and care homes) that it now has authority to act on the adult’s behalf; and
• act only within the limits of the DWP appointeeship or the deputyship order.

5.1 Duties of an appointee

Where the Client Affairs team is granted appointeeship from DWP on behalf of the adult, it should:

• use money received in their best interests;
• claim benefits and sign DWP forms;
• collect and receive benefits, state pensions and allowances;
• make appropriate payments;
• make sure the adult receives their personal allowance;
• make sure bills or payments are invoiced correctly and due before making payment from their account;
• make sure the adult receives the maximum amount of benefits they are entitled to;
• hold low levels of capital in the adult’s current account and help them to budget / spend this amount.

An appointee cannot:

• receive any other type of income, other than those listed above;
• deal with any debt including debt companies / agencies, except to DWP or the local authority;
• invest or manage bank accounts for any capital level held, however low.

5.2 Corporate deputyship

Corporate deputyship applies when a person has:

• an occupational pension;
• other income not received from the DWP;
• stocks and shares;
• property;
• savings in a bank account.

5.2.1 Duties of a deputy

As a deputy under the MCA Code of Practice, the Client Affairs team:

• apply standards of care and skill (this is called a duty of care);
• not take financial advantage of the adult’s situation (fiduciary duty);
• not delegate any duties to any other party unless authorised to do so;
• act in good faith;
• abide by information sharing agreements and data sharing legislation (see Case Records and Information Sharing and Data Protection chapters);
• insure the adult against liability to third parties caused by the deputy’s negligence;
• comply with the directions of the CoP.

Property and affairs deputies must also:

• keep accounts;
• keep the adult’s money and property separate from their own finances.

6. Supporting the Adult’s Involvement

The Client Affairs team should always respect the adult’s wishes when managing their finances and possessions and include them in decision making, wherever possible.

The Client Affairs team must abide by the principles and practice as outlined in the MCA (see Mental Capacity Act and Code of Practice chapter). All financial decisions made on the adult’s behalf must be made in their best interests and involve them, wherever possible (see Best Interests chapter). The team should manage the adult’s finances and assets in a way that is in their best interests, including decisions regarding:

• budgeting;
• decisions regarding use and maintenance of their property;
• investments;
• maximising their income.

When involving the adult in decision-making, as far as possible staff should give the information to them in a format they can understand or make sure that they have any support they need to communicate.

As a deputy, the Client Affairs team should act in the best interests of the adult and within the terms of the CoP order. If it needs to make a decision which is not covered by the order, it should apply to the CoP.

The team must also consider financial support for activities or items that will improve or enhance the adult’s quality of life.

7. Financial and Property Affairs

7.1 Financial affairs

The Client Affairs team must manage the adult’s financial and property affairs in accordance with:

• the requirements of the OPG; and
• the local authority’s accounting instructions and other financial policies and control procedures, including best value requirements.

Adults who can receive and manage their own personal spending money should be supported by the Client Affairs team to do so, with as few restrictions as possible.

Care homes or other third parties, who receive personal spending money on behalf of an adult who lacks mental capacity, must account for how the money was spent and provide evidence of such when required.

Online transactions are the usual method of managing financial matters; cash payments are discouraged and will be strictly controlled and monitored.

The Client Affairs team should not act as a guarantor.

7.2 Property affairs

The Client Affairs team should consult with the adult as appropriate, and other relevant persons, in decisions about changes of accommodation. It should also manage insurance, utility and council tax arrangements, tenancies, property sales and other related matters.

The team should take reasonable action to make sure the adult’s property does not suffer damage or loss when, for example:

• they have been admitted to hospital or a care home; and
• property protection arrangements have not already been made by the social care or health practitioner who made the referral concerning the adult to the team.

The Client Affairs team should arrange for a property to be cleared when:

• it has been confirmed that the adult cannot return home;
• the CoP has issued an order authorising clearance of the property; and
• it is in the adult’s best interests (that is, it is in their best interests to end a tenancy or sell a property).

The Client Affairs team will arrange to sell or otherwise dispose of the adult’s property when:

• it has been confirmed that they cannot return home;
• the adult has been confirmed as owner of the property and other owners / anyone with a beneficial interest in it have agree to the sale / disposal;
• the CoP has issued an order authorising the sale / disposal, and
• it is in the person’s best interests.

8. Responsibilities for a Deceased Person’s Estate

If the adult who lacks mental capacity is named as an executor of a deceased person’s Will or under the rules of intestacy is an entitled relative and there is no other person willing / suitable to administer the estate, the Client Affairs team will:

• seek the authority of the CoP to apply for a grant of representation on the adult’s behalf, and
• if granted, instruct a solicitor to administer the deceased person’s estate.

9. Ending Responsibility

The Client Affairs team should remain responsible for managing the adult’s affairs until:

• another person is appointed to manage their property and financial affairs;
• the adult regains mental capacity; or
• the adult dies, when the executor or administrator of their estate becomes responsible for managing their affairs.

When an adult dies, the Client Affairs team should:

• provide the executor / administrator with information about the adult’s property and financial affairs; or
• make a referral to the Treasury Solicitor’s Department / Bona Vacantia where there is no one to administer their estate.

All relevant information should be completed on the adult’s record before closure.

10. Fees charged by the Client Affairs team

The local authority will not charge adults for the service of the Client Affairs team when their capital is under an amount specified by the team. At the point their capital level reaches that amount, the team should apply for deputyship for the person.

The CoP publishes information about the level of fees local authorities can otherwise charge adults for managing their affairs. Fees charged by the Client Affairs team cannot exceed the fixed rates permitted by the CoP.

Charges generally relate to:

• setting up the service for the adult;
• annual fees;
• annual reports;
• maintenance and property support;
• travel costs for visiting the adult and /or their home.

There may be additional services that the Client Affairs team can charge for, but this is only with the agreement of the CoP.

When the person dies, the local authority can charge an amount to settle the person’s affairs and close the case.

The lead officer of the Client Affairs team can decide to change or waive fees in particular circumstances, for example if the person cannot afford them.

11. Monitoring and Reporting

The Client Affairs team should review each adult’s circumstances annually.

The activities of the Client Affairs team in managing the adult’s affairs should be subjected to both internal and external monitoring, including:

• monitoring and review systems;
• the local authority financial audit procedures;
• supervision and assessment by the OPG.

The Client Affairs team must provide an annual report to the OPG about each adult whose affairs they manage, as per its reporting requirements.

12. Dissatisfaction / Complaints

Adults, or a representative, who are dissatisfied with service or decision they receive from the Client Affairs team or feel they have been treated unfairly, can make a complaint to the local authority Adult Social Care complaints office (see Complaints chapter).

Adults, or a representative, may also be directed to the Office of the Public Guardian at any time if they have concerns.

13. Further Reading

13.1 Relevant chapters

Money Management

13.2 Relevant information

Court of Protection (gov.uk)

Office of the Public Guardian (gov.uk)

1. Introduction

Shared lives is a regulated form of social care where an adult (aged 16+ in England) with care and support needs moves in with a registered shared lives carer and lives with them as part of their household in a family environment. It provides an alternative to supported living or residential care.

Shared lives is delivered locally through registered shared lives schemes which recruit shared lives carers and match them with adults who need support.

Shared lives schemes are run or commissioned by local authority adult social care services.

Shared lives carers may or may not provide the regulated activity of personal care.

Shared lives carers are approved and trained for that role by a shared lives scheme which is registered with Care Quality Commission (CQC). It is the scheme that is regulated, not the individual carers or their accommodation. The carers’ home are private premises, not ‘regulated premises’ and so are not subject to inspection by the CQC.

Health and safety checks should be carried out on the accommodation, along with risk assessments as appropriate before an adult is placed.

2. Types of Provision

There are different types of support available for adults in shared lives, dependent on need, circumstance, preference, and availability.

Live in: the adult supported moves in with their shared lives carer and lives as part of their family. The shared lives carers provide accommodation which the adult supported ‘rents’ from the carer (this is covered in the shared lives licence agreement). The adult will have their own key to the home.

Day support: the shared lives carer and the adult being supported could spend time at the carer’s house, developing independent living skills such as cooking and activities of daily living, or doing things in the community together such as shopping or day trips.

Short breaks / respite: where the adult has overnight stays (for anything from one night to a few weeks) at the shared lives carer’s home, perhaps while their parent / family carer or live-in shared lives carer has a break from their caring role. This short break could also be to support an adult when they leave hospital, before they are able to manage to return to their own home.

Day support and short breaks can also be an option for an adult to get used to spending time with a shared lives carer, where live-in support may be in consideration as an option for the future, such as for an adult with a learning disability who lives with ageing parents.

3. Shared Lives Agreements

Agreements setting out the details of the shared lives arrangement will be signed by all relevant parties. This may include the following.

3.1 Shared Lives carer agreement

This is an agreement about the role of the carer, between the shared lives scheme and the carer.  It may include:

• the self-employed status of the shared lives carer;
• the obligations of the scheme and the carer;
• payment arrangements;
• insurance requirements;
• termination of the arrangement;
• data protection and confidentiality.

3.2 Arrangement agreement

This agreement lays out the terms and conditions, responsibilities and expectations of everyone involved in a shared lives arrangement. It may include:

• the type of shared lives arrangement (live-in, short break or day support);
• house rules for the shared lives carer’s home;
• the care and support that a shared lives carer will be providing;
• any responsibilities and expectations for the shared lives carer, the adult being supported, the shared lives scheme and the local authority to meet.

3.3 Licence agreement

A licence agreement is only required for live-in shared lives arrangements. This is a written agreement between the shared lives scheme, the shared lives carer and the adult being supported, and should be signed together with the shared lives arrangement agreement and the shared lives carer’s agreement. It may include:

• how the adult wishes to be supported;
• house ‘rules’ such as ensuring the privacy of the adult supported, preparing meals, and keeping bedrooms and shared areas of the home tidy.

Shared lives carers must sign the shared lives carers agreement, the arrangement agreement and the licence agreement to say they understand their role and the role of the scheme.

Adults being supported should, if required, be provided with assistance to read and understand all parts of the relevant agreements.

4. Recruitment, Assessment and Approval and Training of Shared Lives Carers

Shared lives schemes may set their own criteria for carers, which are likely to include carers:

• are at least 18 years-old;
• have a spare bedroom and enough space for another adult to live (if providing live in support);
• are full-time residents in the UK or have leave to remain;
• are able to give the time to support another adult.

Each shared lives schemes will have its own process for recruitment, assessment and training of shared lives carers. The process is likely to include:

• application form;
• home visits by a shared lives worker;
• meeting other local shared lives carers and adults supported by shared lives;
• completion of an assessment including:
  • finding out why they want to become a carer;
  • learning about the applicant’s household and daily life;
  • assessing their suitability to become a shared lives carer, for example knowledge, skills and current or previous work experience;
  • a full health and safety assessment of the prospective carer’s home, and approval from the applicant’s landlord / mortgage provider;
  • Disclosure and Barring Service (DBS) check (see Disclosure and Barring chapter);
  • personal and /or professional references;
  • a report from their GP.

Once the assessment is completed, an assessment report will be presented to an independent shared lives panel.

The panel provides independent scrutiny and a quality assurance process to the scheme in relation to assessments for new shared lives carers, as well as the ongoing approval and de-approval of existing shared lives carers.

If the applicant is approved as a shared lives carer, the panel will specify the terms of approval, that is the type of placement the carer is approved to offer and how many adults they are approved to support.

Initial and refresher training will be provided relevant to the carer’s terms of approval. This is likely to include safeguarding adults, first aid, medication management, food safety, infection control, information governance, positive behaviour support and moving and handling, as well as additional training as required to enable them to meet the needs of the adult they will be supporting.

Foster carers who wish to continue caring for the young person living with them will have to complete the approval process to become a shared lives carer.

5. Referral

The shared lives service is available to anyone over the age of 18, who has been assessed under the Care Act 2014 with a care and support needs assessment and needs support to live in the community (see Assessment chapter).

Referrals are usually made by social workers or health care professionals, directly to the shared lives scheme, in agreement with the adult or their family member/s. Many schemes welcome an informal discussion about the potential referral.

Each shared lives scheme will have its own referral form.  Requirements are likely to include:

• Care Act assessment (see also Assessment chapter);
• care and support plan (see Care and Support Planning chapter);
• other relevant documentation such as mental capacity assessment ( see Mental Capacity Act and Code of Practice chapter) or risk assessment (Risk Management Processes chapter);
• information on funding for the shared lives arrangement.

The shared lives scheme should provide information on:

• how referrals are managed;
• next steps and timescales following receipt of a referral;
• how the scheme will meet with and get to know the adult being referred;
• what happens if a scheme is unable to accept a referral or does not have any suitable shared lives carers available;
• whether the scheme accepts emergency / urgent referrals and, if so, how these are dealt with;
• how data is stored and used.

6. Matching and Introductions

6.1 Matching

A shared lives scheme matches an adult in need of support with a suitable approved shared lives carer.  Adults will be supported to make an informed decision on being supported by shared lives and the carer who will provide their support. Adults will be involved in choosing and meeting their shared lives carer.

Considerations when matching a shared lives carer with an adult being supported include:

• the wishes and feeling of the adult being supported;
• any risk assessment / risk management plan;
• the skills, knowledge, and experience of the shared lives carer/s;
• personal interests of the carer and the adult being supported;
• the location of the home of the shared lives carer/s;
• the facilities and accommodation the shared lives carer(s) can offer the adult;
• any cultural and / or religions considerations.

6.2 Introductions

Introductory visits may be arranged to enable the adult being supported and the potential carer to get to know one another, and to allow them to make a well-informed decision on whether the arrangement could be a suitable one.

6.3 Information sharing during the matching process

Shared lives carers should be provided with sufficient information during the matching process to enable them to make an informed choice about potential risks to themselves and others in their household. This includes any risks identified following a risk assessment and any risk management plan.

This right of the potential shared lives carer to information should be balanced against the interests of the adult seeking support and should be in line with principles of confidentiality and data protection. The information disclosed must be accurate, relevant and proportionate, with no more information being disclosed than is necessary.

For more information see Case Records and Information Sharing and Data Protection chapters.

Information about the adult being supported should only be made available with their permission (or, as appropriate, the permission of their family members / advocate).  They should be made aware that withholding relevant information may hinder their application.

7. Emergency Shared Lives Arrangements

Referrals made in emergency situations may lack information about the care and support needs and personal circumstances of the adult being supported and may provide insufficient time for a detailed matching and introductions process.

Shared lives schemes which accept emergency arrangements must have a clear and consistent approach to how emergency referrals, matching and introductions will be managed. For instance, sufficient information must be available regarding any identified risks and how these will be managed.

8. Risk Assessment

See Risk Management Processes

Before a shared lives arrangement commences, the shared lives scheme should complete an up-to-date risk assessment/s. This should include clear recommendations about ways in which any identified risks can be minimised. The risk assessment should take account of the adult’s needs, temperament and history (including any history of previous allegations of abuse).

The risk assessment is not a one-off event; there should be continuous review of risk throughout the shared lives arrangement. The shared lives scheme should ensure that the shared lives carers have the training, skills and knowledge necessary to identify any new risk factor as it arises, and to understand when to respond to that identified risk themselves and when to seek guidance from the shared lives scheme.

9. Support, Monitoring and Reviews

9.1 Support

The shared lives scheme will provide ongoing support for shared lives carers, to make sure they have the resources, skills, and knowledge to fulfil their responsibilities and meet the needs of the adults they are supporting.

Support provided by schemes for shared lives carers is likely to include:

• induction and refresher training;
• access to support from the shared lives scheme, including out of hours support arrangements;
• regular telephone calls and monitoring visits from their named shared lives worker and the social worker for the adult they are supporting;
• regular reviews of the adult’s support plan and shared lives arrangement agreement;
• the provision of a shared lives carer’s handbook containing essential information about the aims and objectives and operation of the service and reference documents including copies of relevant guidance and procedures;
• regular breaks for shared lives carers who are providing long-term accommodation and support for an adult;
• facilitating peer support between shared lives carers.

9.2 Monitoring and review

Shared lives schemes need to ensure that shared lives carers continue to meet the needs of the adults they are supporting.

Schemes will carry out a full review of carers’ work and approval status at least once a year (more often if necessary) which includes a learning and development plan for the coming year.

The annual review of a shared lives carer by the scheme will cover:

• the shared lives carer’s work with each adult they have been supporting;
• feedback from the adult supported, their family or representative, their social worker and other relevant professionals;
• an overview of the shared lives carer’s achievements during the year;
• any outstanding objectives or actions from the previous year;
• a review of the records they have been keeping;
• evidence of any continuous personal development as well as their learning and development needs for the coming year;
• their accommodation and updating of any risk assessments;
• their current health, lifestyle, and family circumstances.

Additional reviews will be carried out:

• at the end of the shared lives carers’ probationary period;
• if any serious complaints or concerns have been expressed about the working practices or conduct of the shared lives carers;
• if an allegation of abuse or neglect has been made against them and upheld after investigation;
• if their health or family circumstances have changed significantly.

If the review of the shared lives carers indicates that there may be reasons to change or end their approval, the review report will be presented to the shared lives panel for a recommendation, which will inform a decision by the registered manager or other senior manager. The shared lives carers will be given information about their right to appeal against the decision and how to do this.

10. Funding and Finance

The shared lives arrangement may be funded by the local authority, NHS or self-funded by the adult needing support. The cost of the shared lives arrangement will usually be determined by the banding (support) level that the adult would come under within the scheme. If the adult is self-funding, they will need to understand the full cost of the shared lives arrangement and agree to fund this themselves.

This funding goes through the shared lives scheme, who then pay the shared lives carers a fixed fee for the care and support they provide.

Shared lives carers who provide live-in arrangements are also paid a rental element, usually from the benefits received by the adult being supported.

Shared lives carers are classed as self-employed.

Shared lives carers who offer live-in, respite, day support or a combination of these shared lives arrangements are entitled to Qualifying Care Relief for income tax purposes. If carers’ shared lives income in a tax year is less than the qualifying amount, they don’t have to make any class 4 national insurance contributions or pay any income tax on shared lives income.

See Qualifying Care Relief for Carers (Self Assessment helpsheet HS236) (HMRC)

Shared lives carers must keep records of finances for the adult supported and present them when requested.

11. Medication

Adults should be supported to take their own medicines when they want to and if it is safe to do so. Shared lives schemes should work with adults and their shared lives carers to develop a self-management plan for medicines. This plan must consider the risks, values and benefits.

Shared lives carers may administer or support an adult to take their medicines. They must keep records in line with the Overview: Managing Medicines for Adults Receiving Social Care in the Community (NICE). This includes details of all support for prescribed and over the counter medicines, such as:

• reminding an adult to take their medicine;
• giving the adult their medicine;
• recording whether the adult has taken or declined their medicine.

Adults have the right to refuse to take a medicine if they have the mental capacity to make that decision.

Shared lives schemes should ensure that carers have suitable training to support an adult to manage and store their medicines safely and effectively, and that they know how to raise concerns about medicines and to report medicines incidents. See Reporting medicine related incidents (Care Quality Commission).

Shared lives carers do not need a separate medicines fridge or a controlled drug cupboard. Adults should be supported to store medicines in a way that meets their individual needs and the manufacturer’s requirements. Unwanted or waste medicines can be returned to a community pharmacy for safe disposal.

12. Personal Care

Some adults will require support from their shared lives carer to meet their personal care needs. This may include support with aspects of daily living such as washing, using the toilet, dressing, oral care, eating and drinking. Shared lives carers must receive information and training to enable them to provide personal care safely and sensitively. Support for personal care provided by the carer must be in accordance with the adult’s support plan and any risk assessments. The support plan will be regularly reviewed as part of the shared lives arrangement and will wherever possible be agreed with the adult being supported.

13. Mobility Aids and Equipment

When an adult is referred to shared lives, their care and support plan will set out (where relevant) information on assistance with mobility and any equipment or aids they need. Shared lives carers must be provided with training on any equipment, a risk assessment must be undertaken and a risk management plan be completed.

Equipment must be regularly inspected and maintained in accordance with the manufacturer’s instruction. The use of aids and equipment will be kept under review as part of the adult’s support plan and reassessments arranged when necessary.

14. Safeguarding and Allegations

The registered shared lives scheme must arrange for shared lives carers to receive initial and ongoing safeguarding training, and ensure that they know how to access the local multi-agency safeguarding adults procedures.

Shared lives carers must report any safeguarding concerns to the shared lives scheme as soon as possible.  If a crime is suspected, the police must be informed. The immediate safety of an adult supported by shared lives should be ensured.

The shared lives scheme is responsible for ensuring that all safeguarding complaints and allegations are dealt with in accordance with the multi-agency safeguarding procedures.

See also Knowsley Safeguarding Adults Procedures.

The shared lives scheme is also responsible for informing the CQC of all allegations of abuse or neglect. See Notifications (Care Quality Commission).

The shared lives scheme should keep the adult being supported and / or their advocate informed of the progress of any safeguarding investigation and should provide support to the carer throughout the investigation.

15. Transitions

See also Transition to Adult Care and Support chapter

Shared lives can support people from age 16 onwards.

For young people in foster care who wish to remain living with their foster carer past the age of 18, the young person should be assessed as having eligible care and support needs to be funded as an adult, and that it is in their best interest to remain living with the foster carer. If the young person does not meet the eligibility criteria for adult social care, then a staying put arrangement could be offered.

Young people who are moving to shared lives from children’s homes may face a greater transition to those cared for in foster homes, as this will be a new model of living. It is important to ensure that all young people are involved in  decision-making and planning to ensure a smooth transition, but it is especially important for young people who are unfamiliar with shared living in a family home environment.

16. Record Keeping and Information Sharing

Shared lives carers will be given training about record keeping and the importance of confidentiality.

16.1 Record keeping

For more information see Case Records and Information Sharing and Data Protection.

Shared lives carers and adults being supported will be provided with copies of relevant information such as the adult’s support plan and shared lives carer agreement / arrangement agreement / licence agreement.

The carers will also record significant events during the arrangement, such as:

• the dates of visits and conversations with their shared lives worker and any decisions or actions taken as a result;
• any accidents or serious illnesses or other adverse events affecting the adult;
• any concerns or complaints about the services the adult receives or about their health and wellbeing, and actions taken.

Where possible the carers will involve the adult being supported and / or their representative in what is being recorded.

16.2 Information sharing

In order to provide coordinated support, the shared lives scheme may co-ordinate with other agencies. This may involve sharing and receiving relevant information.

The adult’s confidentiality will be respected, and personal information will only be shared with their agreement or if it is necessary to provide safe care or to  prevent harm to the adult or to others.

For more information see Section 6.3, Information sharing during the matching process.

17. Further Reading

17.1 Relevant chapters

Case Records and Information Sharing

Data Protection

Knowsley Safeguarding Adults Procedure

17.2 Relevant information

Shared Lives resources for social workers (SCIE)

Resources for Social Care Practitioners: Referring to Shared Lives (Shared Lives Plus)

Managing Medicines in Shared Lives schemes (Care Quality Commission)

Managing Medicines for People Receiving Social Care in the Community (NICE)

Launch: Growing Shared Lives – a Toolkit for Commissioners, Directors and Heads of Service (Shared Lives Plus)

Training Briefs for Social Care Practitioners (Shared Lives Plus)

1. Introduction

Staff must only prepare witness statements for court on behalf of the local authority by whom they are employed (except in certain circumstances) and only when requested to do so by the legal services department, who acts on behalf of the local authority.

A solicitor from the legal services department accepts instructions from the social worker as their client. A barrister may need to be briefed by the instructing solicitor when a complex matter is before the court or where a hearing may take several days.

The circumstances when a member of staff may be asked to provide a witness statement on behalf of the local authority will usually be made in relation to adults who lack mental capacity. These may include but are not limited to:

• applications brought by the local authority in the Court of Protection section 16 Mental Capacity Act 2005 for the making of a court order or the appointment of a deputy to make decisions on an adult’s behalf in relation to the adult’s personal welfare;
• appeals issued against a decision to authorise a deprivation of liberty  of an adult detained in a hospital or care home under s21A of the Mental Capacity Act 2005;
• third party or private applications. There may also be other situations when staff may be asked by a third party (either by an individual or a partner agency) to provide a report or a witness statement. Any such documentation could result in the worker being asked to attend court. In such circumstances, they should inform their team manager, who should then seek advice from the legal services department.

Staff should remember that the local authority is a statutory body and its constitution sets out who is authorised to act in performing its functions and how staff must conduct themselves as local authority employees (Code of Conduct for Employees). Whilst this applies whenever employees are acting on behalf of or representing the local authority, it should be particularly remembered in matters relating to the court. Failure to comply with court directions in the Court of Protection can lead to cost orders being made against the local authority.

Please note: If a direct request for court documentation, especially by way of a direction in a court order, is received from any person other than a solicitor in the legal services department, you should inform your team manager, who should immediately contact legal services for advice.

2. Examples of Requests Within or External to the Local Authority

Some of the circumstances when a statement may be requested by another service within the local authority, another statutory agency or a third party are outlined below. Please note this list is not exhaustive.

2.1 Office of the Public Guardian

In cases of financial abuse, where the local authority may have completed a safeguarding investigation under section 42 Care Act 2014, the Office of the Public Guardian (OPG) can bring proceedings in the Court of Protection to remove an attorney. It may request that the local authority files a witness statement to support the application. Advice should be provided on the formatting and contents of any such statement. The local authority may assist with the application, but legal advice should be sought before responding to any requests from the OPG.

2.2 Coroner

When a coroner is involved in the case of a deceased person, they may approach adult social care for information.

The coroner’s office can informally request information about the involvement of adult social care in relation to a deceased person, such as safeguarding reports or a chronology of the local authority’s involvement with the deceased person. A coroner may request the worker to attend any coroner’s hearing when the cause of death needs to be ascertained and there are public liability issues for the public bodies to address to family members, connected persons and others.

The coroner can also formally request that a witness statement is provided by a member of staff who was involved with the provision of services or support to the deceased person. The member of staff may be required to attend the Inquest to give evidence in person. In complex and protracted coronial matters, it is advisable for legal services to assist with witness preparation.

2.3 Children’s social care

Children’s services can ask a member of adult social care staff who is working with a parent to provide a report in relation to safeguarding or child protection proceedings in accordance with the Children Act 1989 and the Public Law Outline (PLO). The local authority is required to prepare or obtain all its multi-agency partner assessments and reports on the family prior to the issue of any court proceedings.

The report must be signed and dated and bear a ‘Statement of Truth’ at the end of the report which should confirm that the matters contained within the report are true to the best of the member of staff’s knowledge and belief.

If care proceedings are issued and the local authority has filed a copy of the member of staff’s report as part of its evidence, they may be called to give evidence in relation to that report. Children services are often involved when the adult has been a looked after child who moves on to an adults and young person’s team for example. Ordinary residence often becomes a difficult issue when the adult moves from one local authority to another (see Ordinary Residence chapter). Ordinary residence matters are not normally determined by a court but by the Secretary of State.

Please note: staff should not provide a witness statement on behalf of a parent or have any contact with the solicitor representing the parent to avoid any accusation of bias or conflict of interest. All communication with the parents’ solicitors should be done through or in the presence of the local authority solicitor.

2.4 Housing

Proceedings to repossess property or end a tenancy are civil proceedings brought in the County Court by a landlord and are determined under housing legislation. Staff may be asked by the defendant or by the social housing landlord to submit a witness statement. Advice from legal services should always be sought first.

2.5 Social Work England investigations

If Social Work England (SWE) contact staff for a witness statement in relation to investigations about an individual on the SWE register, the member of staff should first speak to their team or service manager and the principal social worker.

2.6 Criminal proceedings

The police may want to interview staff if they are a witness to a crime concerning an adult who receives care and support services or if they have knowledge about a crime based on their involvement with them. The member of staff may be required to provide a witness statement and to attend to give evidence in person if the matter proceeds to court. If a request is made by the police for case records relating to an adult who uses services, this should be referred to the legal services department.

2.7 Forced marriage protection order applications

The police may request a witness statement from a member of staff working with a person who has, or is at risk of, a forced marriage to support an application for a forced marriage protection order. Many such applications are urgent, as  immediate action is required to prevent the person at risk of being removed from the UK jurisdiction. It is advisable to seek assistance from the local police Public Protection Unit or the Foreign and Commonwealth Office.

2.8 Education, Health and Care Plan Tribunal hearings

In such instances, staff should speak to their team or service manager and ask for the name of the Education Officer who is responsible for the matter. These officers prepare Education, Health and Care Plan (EHCP) for the Special Educational Needs and Disability Tribunal (SENDIST) hearings. There is often a social care part in the EHCP that may require the worker to complete Sections B and F of the ECHP, so the tribunal can decide on placement.

3. Instructing Legal Services

3.1 Legislation

Decisions that need to be taken could be under the following legislation:

• Care Act 2014 (including safeguarding);
• Mental Capacity Act 2005 (including Deprivation of Liberty Safeguards); or
• Mental Health Act 1983.

Most often they relate to:

• whether a person is eligible to receive adult care and support services (see Eligibility chapter);
• whether a person lacks mental capacity (see Mental Capacity and Code of Practice chapter);
• a person’s best interests (see Best Interests chapter);
• safeguarding decisions (see Adult Safeguarding chapter);
• whether an application to the Court of Protection should be made;
• depriving a person of their liberty (see Mental Capacity Act Deprivation of Liberty Safeguards chapter);
• whether there is a breach of a person’s human rights, such as the right to private and family life (see Equality, Diversity and Human Rights chapter);
• personal budgets (see Personal Budgets chapter);
• direct payments (see Direct Payments chapter);
• ordinary residence (see Ordinary Residence chapter).

3.2 Requesting legal services

A request for legal services support should always be made when:

• an application is going to be made to the High Court, for example inherent jurisdiction applications;
• a health and welfare application is going to be made to the Court of Protection. A checklist of documents should be made so the witness statement when presented to the court will have appropriate exhibits for judicial consideration so a gateway order can be issued;
• a witness statement is being provided in response to a deprivation of liberty safeguard (DoLS) challenge under section 21A Mental Capacity Act 2005. The local authority should disclose standard authorisations under the gateway order and witness statements should be filed after the first hearing. Staff should follow bullet points in the directions order to complete the witness statement;
• another person or organisation has made an application to court or a letter has been received saying another person is going to make an application to court. The court will decide whether local authority should be made a party in any proceedings;
• a report or paper is being prepared that requires legal comments.

A request should also be made for property and financial affairs applications to the Court of Protection when this application is not to be managed by a dedicated deputyship service within the local authority. A family member will often privately instruct a firm of local solicitors to make the same application.

3.3 Supported decision making

In such cases as listed above, advice from legal services is useful to support decision making including in the following situations:

• where the decision will likely have a significant impact on the person receiving services or their carer;
• when the legislation, codes of practice or other available guidance is unclear on what decision should be made in a particular set of circumstances;
• where the risk of complaint or legal challenge is significant;
• when the decision that needs to be made is complex;
• when there are a number of options available should be thoroughly explored and investigated.

3.4 Complaints and investigations

Whilst legal advice should not be routinely requested in complaints and other investigations, advice from legal services can be particularly useful in complex complaints or investigations when:

• statutory processes and duties are being challenged; and
• there are legal implications for the outcome of the complaint or investigation. Please note a complaint should not be decided when the same subject is part of legal proceeding, until the court hearing is concluded.

4. The Role of Legal Services in Court Hearings

It is the role of legal services to co-ordinate and manage the following:

• the application process;
• the response to a challenge to a deprivation of liberty authorisation under section 21A Mental Capacity Act 2005 or any application when the local authority has party status;
• any correspondence sent to or received from the court;
• how and when evidence is provided, including how it is organised and submitted;
• how other staff and agencies are involved in the process.

Legal services should also:

• help develop adult social work staff understanding of court processes;
• support staff to assess the quality of the evidence they provide, which may include amending the social worker’s witness statement for court purposes;
• advise about completing the required forms correctly; and
• support staff giving evidence in person and prepare them for cross-examination.

 5. Practice Guidance

5.1 How staff can support legal services

Staff should always:

• inform legal services of any changes in a case where they are already involved and provide the solicitor with regular and updated instructions;
• complete witness statements and submit evidence before the specified deadline;
• provide up to date information when asked;
• review statements and sign and date them when requested, as otherwise they cannot be submitted to the court;
• attend court hearings in good time before the commencement of the hearing unless advised otherwise.

5.2 Writing a good report

Tips include:

• plan – consider using bullet points or headings;
• write first draft – it should not just be a summary of facts but include analysis;
• write a summary – this may include a recommendation to the court;
• say what you mean clearly and concisely;
• edit – eliminating repetition and irrelevant information;
• check – ask a manager or a colleague to check the accuracy of the report.

Avoid:

• irrelevant, inappropriate information;
• meaningless phrases;
• illogical conclusions.

See How to write a good report (Community Care) and Court reports: three key tips for writing clearly (Community Care).

5.3 Top tips for giving evidence in court

• communicate effectively and clearly, in a strong tone of voice;
• direct your answers to the decision maker;
• seek assistance of the decision maker;
• assume nothing, be very thorough and ensure you are familiar with the contents of your own statement and the exhibits;
• be ready for cross-examination techniques – your answer should not go outside the scope of the question put to you;
• do not go outside the facts or your area of expertise;
• take your time to answer the questions. Do not be afraid to seek clarification from the questioner about what you are being asked to comment on.

See Top tips for giving evidence in court (Community Care)

1. Introduction

There are a many different factors that contribute to a person living in poverty. Broadly these can be described as a) personal – their individual situation of employment, opportunities, life circumstances etc and b) universal – these are factors that affect everyone such as the costs of food, fuel, heating and lighting etc.

This chapter outlines the main issues regarding poverty, how it affects people, how it can additionally affect people with care and support needs and specialist organisations that can provide support.

2. What is Poverty?

The Joseph Rowntree Trust (JRF) is the leading UK charity which aims to end poverty. It defines poverty simply as being when someone’s resources are well below their minimum needs.

However, it says there is not just one definition of poverty and that it is a complicated problem that needs a range of measures to tell us about the different features of poverty (see What is Poverty?). There are two main ways of measuring poverty – absolute and relative poverty.

2.1 Absolute poverty

Absolute poverty is when the income of a household is below a certain level. This is when it is not possible for an adult or family to meet the basic needs of life which include food, shelter / accommodation, safe drinking water, education, healthcare for example. Absolute poverty compares households based on a set income level. This level varies from country to country, depending on the particular nation’s overall economic conditions.

2.2 Relative poverty

Relative poverty is when a household receives 50% less than the average income for a household. Therefore, they do have some money coming in, but it is not enough money to afford anything above the basic needs of life. This type of poverty changes depending on the economic growth of the country.

Relative poverty is also called ‘relative deprivation’, because people in this category are not living in total poverty. They cannot, however, afford the same standard of living as everyone else in the country. It can be for example TV, internet, clean clothes and a safe home (a healthy environment, free from abuse or neglect).

Relative poverty can also be permanent; people can be ‘trapped’ in a low relative income. Since long-term poverty has an impact on economic and social conditions, persistent poverty is an important concept to remember. For more information see Relative vs Absolute Poverty (Habitat for Humanity) .

3. What are the Causes of Poverty in the UK?

The causes of poverty are issues that either reduce a person’s financial resources and / or increases their needs and the cost of meeting those needs. Life events and moments of change – such as getting ill, suffering bereavement, losing a job or a relationship breaking down – are common triggers for poverty.

JRF states that some of the causes of poverty in the UK today are:

• unemployment and low-paid jobs which have little prospect of getting better paid and are insecure (or a lack of jobs): many areas in the country have a lot of these jobs or do not have enough well-paid jobs. Low pay and unemployment can also lead to not being able to save or have a pension;
• low levels of skills or education: young people and adults who do not have the right skills or qualifications can find it difficult to get a job, especially one with security, prospects and decent pay;
• the benefit system: the level of welfare benefits for some people – who are either already in work (which is low paid), looking for work or unable to work because of health or care issues – is not enough to avoid poverty, when combined with other resources and high costs. The benefit system is often confusing and hard to engage with, leading to errors and delays. The system can also make it difficult for a person to move into work or increase their working hours (for more information see Benefits A-Z, Community Care Inform);
• high costs: the high cost of housing and essential goods and services (for example gas, electricity, water, Council Tax, telephone or broadband) creates poverty. Some people face particularly high costs because of where they live, because they have increased needs (for example, personal care for disabled people) or because they are paying a ‘poverty premium’ – where people in poverty pay more for the same goods and services;
• discrimination: people can be discriminated against because of their class, gender, ethnicity, disability, age, sexuality, religion or parental status or even because of poverty itself. This can prevent them from getting out of poverty and can restrict access to services;
• relationship issues: a child who, for whatever reason, does not receive warm and supportive parenting can be at higher risk of poverty when they are older, because of the impact on their development, education and social and emotional skills. Family relationships breaking down can also result in poverty;
• abuse, trauma or chaotic lives: for some people, problematic or chaotic use of drugs and / or alcohol can make poverty worse and longer. Neglect or abuse in adult life can also cause poverty, as the impact on mental health can lead to unemployment, low earnings and links to homelessness and substance misuse. Being in prison and having a criminal record can also make poverty worse, by making it harder to get a job and its impact on relationships with family and friends;
• disability and ill health: these are the main causes of poverty. Disabled adults and families with a disabled child are disproportionately represented in groups which are experiencing poverty.

In recent years, worldwide factors have pushed up prices, further impacting on the number of people in poverty and worsening levels of poverty.

4. What are the Consequences of Poverty in the UK?

JRF state that some of the consequences of poverty include:

• ‘health problems;
• housing problems;
• being a victim or perpetrator of crime;
• drug or alcohol problems;
• lower educational achievement;
• poverty itself – poverty in childhood increases the risk of unemployment and low pay in adulthood, and lower savings in later life;
• homelessness;
• teenage parenthood;
• relationship and family problems;
• biological effects – poverty early in a child’s life can have a harmful effect on their brain development.’

In addition, people may:

• be less able, or unable, to afford:
  • clothing;
  • vital home treatments such as oxygen and dialysis machines due to electricity costs;
  • leisure or sports activities;
  • transport (this is particularly an issue for people who live in the countryside and also may result in people not being able to attend social care, hospital and other important appointments);
  • broadband – further limiting their opportunities for finding work or saving money;
  • attend employment / training;
• need to go to food banks;
• need to borrow money either from family or friends, official (banks or credit unions), or unofficial sources such as loan sharks which can result in threats, intimidation and their possessions seized if they cannot afford to repay them;
• have to pay for goods and services on high interest credit;
• resort to crime or sex work to get money to pay bills.

In turn this can lead to increased stress, anxiety and mental health problems.

This guidance is specifically referring to adults. But where there are children living in families suffering from poverty, there are additional issues. See Child Poverty (JRF).

5. How Poverty Affects People with Care and Support Needs

‘60 per cent of those who died from Covid-19 in the first year of the pandemic were disabled. The health inequalities disabled people already faced were made worse by the pandemic and a decade of austerity …. Disabled people are more likely to live in poverty, have less access to education and employment, and experience poorer ratings of personal wellbeing compared with non-disabled people.’ (The Kings Fund)

With these quotes from The Kings Fund in mind, people with care and support needs may be particularly vulnerable to poverty because:

• they may be less able to work or work in lower paid jobs, due to ill health or having a disability;
• if their health issues have been long term, this may have impacted on their education and training opportunities, which may have resulted in them never being able to get decent paid jobs, or any job;
• their health needs or disability may result in having to:
  • pay for care and support services, such as home carers;
  • regularly buy equipment or supplies;
  • needing adaptations to their house as a result of mobility and other issues;
  • having to move home, if it becomes unsuitable for them as a result of their needs;
  • have the heating and / or lighting on more often;
  • relying on local food shops which may be more expensive / have less choice;
  • buy food for specialist diets;
  • use their own car or pay for taxis if they cannot walk or use public transport due to health issues.

In addition, their carers may also be living in poverty, because:

• they are not able to work / work full time because they need to look after their family member with care and support needs;
• the household income is reduced because of having to pay for the issues highlighted here.

6. Poverty and Safeguarding

Living in poverty can increase the likelihood of an adult experiencing or being at risk of abuse and / or neglect. There may be safeguarding incidents committed – accidentally or deliberately – by people close to the adult who are struggling as a result of living in poverty. These people include:

• spouses or other family members;
• neighbours or friends;
• carers – paid or unpaid;
• other professionals.

People with care and support needs who are living in poverty are more likely to experience the following types of abuse:

• physical abuse;
• domestic abuse;
• sexual abuse;
• psychological abuse;
• financial or material abuse;
• modern slavery;
• discriminatory abuse;
• organisational abuse;
• neglect and acts of omission.

See also Adult Safeguarding chapter

6.1 Self-neglect

In addition, incidences of self-neglect are likely to rise as a result of more people living in poverty due to the reason outlined in Section 5, How Poverty Affects People with Care and Support Needs. Chronic illness and disability increase the risk of self-neglect, both of which are associated with poverty.

See Self-Neglect (SCIE)

6.2 Taking action where there are safeguarding concerns

Where there are concerns that a person with care and support needs is experiencing or at risk of abuse or neglect, whether as a result of poverty or not, staff should follow Safeguarding Procedures for Responding in Individual Cases chapter and Knowsley Safeguarding Adults Board Procedures.

7. Supporting People who are Living in Poverty

7.1 Practical help

People with care and support needs may need support with specific areas of their lives that are contributing towards them living in poverty.

There are some areas where practical help and advice is available. Whilst social work staff may have knowledge about appropriate interventions for people living in poverty, there are also specialist agencies that can also help. These include:

• employment or education advice: specialist agencies can provide support and advice to people with care and support needs, based on their individual needs and wishes, to help them get into work or education, although it should be acknowledged that this may not be possible for everyone;
• benefits advice: specialist services can work with people, and their carers to make sure that both are receiving all the benefits they are entitled to and can support them to apply for new benefits, such as carers allowance, personal independence payment (PIP) and attendance allowance. Advisers can also support people who feel their benefits have been unfairly ended or refused. People who are ill and / or disabled are more likely to be missing out on receiving the correct level of financial support from the benefit system. The benefits system is very complex and can be overwhelming, so people will often gain from having expert advice;
• medical and associated professions: where people are receiving care and treatment for specific health issues from doctors, nurses, occupational therapists or physiotherapists for example, they should be supported to make sure that they attend all their appointments and any obstacles, such as transport problems or a clash of appointment times are addressed well in advance to avoid stress for the person or the likelihood of them missing an appointment. If they do miss an appointment, they should be supported to contact the professional to explain what happened and to rebook it, rather than risk being removed from the service. Ensuring people receive the best possible health care can help improve their life circumstances with the goal of being less susceptible to poverty;
• care and support services: where a person is living at home and receiving care and support services, they should be supported by staff to ensure that services from providers run according to the care and support plan, are timely and if any issues arise the person, and their carer, are supported in addressing them. A financial assessment should be conducted to make sure that people are not asked to pay more for services than they can afford (see also Financial Information and Advice chapter);
• equipment, supplies and adaptations: where someone requires equipment, supplies or adaptations to the home as a result of their care and support needs, staff should make sure that they are referred to an occupational therapist, physiotherapist or other service as appropriate, to be assessed and provided with the equipment they need rather than have to pay for it themselves. This includes technology enabled care;
• moving home: if a person has to move home as a result of their changing care and support needs, or for any other reason, staff should make sure that they are given all the available assistance and financial support to enable this to happen. The local authority housing department should be contacted to see if the person is eligible for any financial support for their move and refurbishment of the new accommodation. In certain circumstances, including when a person is fleeing violence or a property needs work because of a person’s disability, housing benefit can be paid on two properties (see Shelter for more information);
• utility bills: if the person is struggling to pay their gas, electricity and water bills, staff should support them to contact the relevant company to come to an arrangement about the overdue amounts. This also applies to internet companies, which may be essential for people with care and support needs living at home. If a company is not willing to agree a repayment plan, an adult with care and support needs who receives benefits can ask for payments to be taken directly from their benefits to pay essential bills and contribute to repayment of accumulated debt. Most gas / electric, water and broadband providers have special tariffs to support ill and disabled adults who have a low income. Debt counselling and budgeting support is also available from local and national agencies (see Section 7.2, Local and national organisations);
• leisure and sport: leisure and sport can be essential for mental and physical health. Where people with care and support needs are able and want to take part, staff should help them source free activities, including through social prescribing services, and / or grants to enable them to take part. Local organisations can be key in offering events and activities;
• specialist diets: where someone with care and support needs requires a specialist diet, staff should support them to speak to their GP or dietician to see what support is available, such as prescriptions, to reduce the cost of buying specialist foods;
• prescriptions, dental care, eye tests: people on low incomes may be able to get free prescriptions, dental treatment eye tests and help with other NHS costs, see Get Help with NHS Prescriptions and Health Costs (gov.uk);
• transport: a person with care and support needs who is living in poverty may not be able to afford bus or taxi fares or able to afford to run their own car. Staff should support them to find out what financial support is available for them. This will be dependent on their particular needs but will be particularly important for those who cannot walk far or whose mental health affects their ability to travel. The mobility component of the personal independence payment (PIP) can support people with transport costs, blue badge and local travel passes – see What is Personal Independence Payment (PIP)? Turn2Us.

7.2 Local and national organisations

Poverty can be a very complex and challenging issue for staff who do not have a lot of knowledge and experience in this area. There may be local organisations who specialise in issues of poverty, including food banks, who can work with people with care and support needs. Staff can put the person, or their carer, in touch with these organisations or otherwise take advice on an anonymous basis about specific aspects of supporting someone in poverty. Local community or service directories will contain the contact details for such key organisations.

Information about support available in Knowsley can be found at:

• Cost of Living Support (Knowsley Council)
• Cost of Living Support (Knowsley News)

There are also a number of national organisations whose aim is to support people living in poverty. They have lots of information and advice for people. Again, staff can give their details to adults or their carers, or contact them directly for general advice. They include:

• • Advice Finder (Advice UK) 
  • Maximising Income (Child Poverty Action Group) 
  • Get Help with the Cost of Living (Citizens Advice Bureau)
  • Debt and Money (Citizens Advice Bureau)
  • Disability Rights UK Resources 
  • Financial Help if you’re Disabled (gov.uk) 

8. Further Reading

8.1 Relevant information

Joseph Rowntree Charitable Trust

The Trussell Trust

Cost of Living Crisis (Mencap Easy Read)

1. Introduction

As people get older, they may have problems with loss of memory. Whilst it is normal for memory to be affected by a number of different factors including age stress, tiredness, menopause and certain illnesses and medications, there could be underlying medical reasons for these memory issues – such as dementia – that require investigation and treatment

The following statistics relate to dementia in the UK:

• there are currently an estimated 1,000,000 people living with dementia;
• the number of people with dementia is predicted to rise to, 1.4m by 2040;
• one in 14 people over 65 have dementia. This rises to one in 6 people for those aged over 80;
• women are more likely than men to develop dementia in their lifetimes, partly due to the fact that women live longer than men;
• the financial cost is £42 billion each year. (Alzheimers Society;  Dementia Statistics Hub).

2. What is Dementia?

Dementia is a common condition which is more likely to develop with age and usually occurs in people over the age of 65.

It is a syndrome (which is a group of related symptoms) associated with an ongoing decline of brain function. It affects:

• memory loss;
• thinking speed;
• mental agility;
• language;
• understanding;
• judgement.

An adult with dementia may experience different mental changes. This can include losing empathy with other people, hearing or seeing things that are not real (auditory or visual hallucinations), becoming up and down in their mood (being less emotionally stable), not having any interest in things and losing interest in past activities. Social situations may become more difficult as their personality changes.

Where there are concerns that an adult with dementia no longer has mental capacity, safeguards should be put in place to ensure decisions are made in their best interests (see also Mental Capacity and Code of Practice chapter).

The speed at which a person’s symptoms get worse and the way their condition develops depends on the cause of the dementia, as well as their overall health. This means that the symptoms, the rate of progress and experience of dementia are different for each person. There is currently no cure for dementia. However, there are treatments for dementia, including medication, that can help with managing symptoms.

An adult who is experiencing a number of the symptoms related to dementia may find it difficult to continue being independent and may need help from family or friends, including help to make decisions.

If a person – or their family or friends – is worried that they may be developing dementia, they should see their GP.  Following investigations, early diagnosis can help people get the right treatment, care and support and help those close to them to prepare, access support for themselves and plan ahead. With treatment, care and support many adults can lead active and fulfilled lives.

3. Different Types of Dementia

3.1 Alzheimer’s disease

Alzheimer’s disease is the most common cause of dementia, it causes changes to the chemistry and structure of the brain which results in brain cells dying. Common symptoms of Alzheimer’s disease and other forms of dementia include:

• memory loss – especially problems with memory for recent events, such as forgetting messages, remembering routes or names, and asking questions repetitively;
• increasing difficulty with everyday tasks and activities;
• becoming confused in places they do not know / do not know well;
• having difficulty finding the right words;
• having difficulty with numbers and / or paying in shops, particularly with cash;
• changes in their personality and mood;
• feeling depressed.

Early symptoms of dementia (sometimes called cognitive impairment) are often mild and may get worse very gradually. This means that some people – and their family and friends – do not notice them or take them seriously for quite a while.

3.2 Vascular dementia

Vascular dementia is caused when the oxygen supply to the brain fails and brain cells die as a result. This can either happen suddenly such as after a stroke, or over time as a result of a number of small strokes. Symptoms can start quite suddenly and quickly get worse, although they can also develop gradually over many months or years.

People with vascular dementia may also experience stroke-like symptoms, including weakness or paralysis on one side of their body.

3.3 Dementia with Lewy bodies

This form of dementia is caused by tiny round structures that develop inside nerve cells in the brain, which leads to a deterioration of brain tissue. Dementia with Lewy bodies has many of the symptoms of Alzheimer’s disease, but people with the condition also usually experience:

• periods of being awake or drowsy, or fluctuating levels of confusion;
• seeing things that are not there (visual hallucinations);
• becoming slower in their way they move.

3.4 Frontotemporal dementia

In this type of dementia, damage usually occurs in the front part of the brain, so an adult’s personality and behaviour are more affected to start with than their memory. An adult with this type of dementia may become less sensitive to other people’s emotions, perhaps seeming cold and insensitive. They may also behave in a way that is out of character for them, such as making inappropriate comments. Some adults also experience language problems, which may result in them not speaking, speaking less than usual or having problems finding the right words.

4. Symptoms in Later Stage Dementia

As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages of their life, the affected adults is unlikely to be able to care for themselves and will require constant care and attention.

• Memory symptoms: adults may not recognise close family and friends, remember where they live, know where they are and find it impossible to understand simple bits of information or carry out basic tasks or follow instructions.
• Communication problems: adults may have increasing difficulty speaking and may eventually not be able to speak at all.
• Mobility problems: adults may become less mobile, eventually becoming unable to walk and may be mostly in a bed and / or a chair.
• Incontinence: urinary incontinence is common (wetting), and some people will also experience faecal (bowel) incontinence.
• Eating, appetite and weight: losing their appetite and having difficulties eating or swallowing are common. This may lead to choking, and an increased risk of chest infections. People with these problems may lose weight as well.

As well as issues of mental capacity, care should be taken to make sure the adult’s human rights are not breached if they lack capacity to consent to care and treatment (see Mental Capacity and Code of Practice and Mental Capacity Act Deprivation of Liberty chapters).

5. Adults with Care and Support Needs

Getting a dementia diagnosis is a frightening time and receiving the right treatment and care and support early, when a person first shows symptoms, are some of the key points in the Care Act 2014 (see Promoting Wellbeing and Preventing, Reducing and Delaying Needs chapters).

Whilst an adult with an early diagnosis of dementia may not initially require care and support services, they will inevitably do so as the disease progresses (see Assessment chapter). Their carers may also require assessment and a support plan (see Assessment, Section 6, Carers’ Assessment).

When the time comes that they do need care and support services, some adults with dementia will be self-funders, that is they or a family member, for example, will pay for their care. They may not then want an assessment carried out by the local authority.

Where an adult is assessed by the local authority, a care and support plan should be developed with them, to make sure that they are able to state what their needs are and what they want to happen wherever possible, as well as those of their carer (see Care and Support Planning chapter).

6. Carers

Dementia is a very distressing illness for the person’s family and friends, as well as the person themselves. They often see the personality and abilities of their loved one change so much, sometimes to the point of being unrecognisable to how they were before. For couples who have been together a long time, for example, it is very upsetting when their partner or spouse no longer recognises them, or the person physically or verbally abuses them.

When adults with dementia are being looked after at home by family or friends, it is very important that they receive all the multi-agency support needed to be able to best care for them for as long as they are able. This should include an assessment by the local authority if they wish, and the development of a support plan for the carer to put in place to support them to continue caring for their loved one, if this is what they wish to do. This may include home visits from care workers to help with care and support needs, day centre placements, short breaks in residential homes or having someone live in at home whilst they go on holiday.

Carers may feel a range of emotions, including not wanting their loved one to go into long-term care, when in reality they are struggling to cope looking after them at home. A review of the carer’s support plan should include discussions about the longer term future for the adult and their carer, Staff should sensitively discuss with them what may happen, and any preferences they may have, if there comes a time when they can no longer care for the adult.

Both the adult’s care and support plan and the carer’s support plan should include plans for what should happen if the carer cannot care for the adult on either a short term (illness for example) or permanent basis, including planning for what may happen in an emergency situation.

7. Making Advance Decisions

People can make some decisions in advance to make sure their wishes and views are respected should they lose mental capacity in the future, as a result of dementia for example. This includes decisions about their health care treatment and authorising lasting power of attorney in relation to their health and welfare and / or property and financial affairs. See Advance Care Planning chapter.

8. Safeguarding Adults with Dementia

As outlined above, common symptoms for adults with dementia include memory loss, disorientation, confusion, communication difficulties, behavioural issues, low mood and cognitive impairment. One or more of these factors can put an adult at risk of suffering, or experiencing, abuse or neglect.

They are vulnerable to abuse or neglect because:

• dementia can affect a person’s ability to communicate or can make them confused, so they maybe unable to tell anyone what is happening to them;
• they may not be able to manage their own financial affairs, and if an unsuitable person takes this over for them, it gives them opportunity to steal the adult’s money or other possessions;
• they can be susceptible to psychological or physical abuse because carers cannot cope – either on a temporary or long term basis – and for example become angry, shout, care for them roughly or are otherwise unkind;
• they can be targeted by abusers who take advantage of their condition and know they may be unable to refuse them or they may give in to people who bossy or overbearing and who ignore their wishes;
• the adult may forget that the abuse has happened and not tell anyone.

As the condition progresses and the adult gets worse, their ability to self-protect will lessen.

Where there are safeguarding concerns, the Knowsley Safeguarding Adults Board procedures should be followed

9. Training and Supervision

Training should be available for all staff working directly with adults with dementia, but also to other frontline staff to ensure they have an awareness and understanding of the issues that are important for both adults and their carers when managing the person’s symptoms.

This is particularly important considering the expected rise in the number of people who will be affected by dementia over the next 10 years.

Staff supervision sessions need to recognise the difficulties that working with adults with dementia can present for staff, who are involved in supporting both them and their carer. The symptoms of dementia can result in behaviour that is difficult to manage in an effort to offer care and support to adults and carers, whilst also being emotionally distressing for the individual member of staff.

Support for these issues needs to be available for staff through supervision, as well as external sources of specialised support where required.

10. Further Reading

10.1 Relevant chapters

Mental Capacity and Code of Practice

Mental Capacity Act Deprivation of Liberty

10.2 Relevant information

Dementia: assessment, management and support for people living with dementia and their carers (NICE)

1. What is Frailty?

The term frailty or ‘being frail’ is often used to describe older people.

People who are frail often have reduced muscle strength and so get more tired easily (fatigue). They may find it much harder to recover from health issues such as a urinary tract infection or leg ulcers.

Frailty describes a person’s overall stamina and how this relates to their chance of recovering quickly from health problems. Approximately 10% of people aged over 65 live are frail. In those aged 85 and over, this increases to 25-50% (Age UK).

People living with frailty may or may not have other major health conditions. Being frail can be seen as a fairly ‘minor’ health problem, but in reality it can have a severe and long term impact on someone’s physical and mental health and wellbeing.

2. Frailty and General Health

There are a number of health conditions that are associated with being frail. Where staff from different organisations are working together with a person, their carers and family, the overall aim should be that the person’s frailty does not result in poorer health outcomes for them (see the Promoting Wellbeing and Preventing, Delaying or Reducing Needs chapters). It is important that a well-planned, joined-up care package is in place, to prevent problems arising in the first place and provide a rapid, specialist response if their situation changes.

Where frailty is a concern, the following should be assessed and monitored on an ongoing basis as part of the person’s care and support plan (see Assessment and Care and Support Planning chapters):

• general health;
• malnutrition and dehydration;
• bladder and bowel problems;
• dementia;
• delirium (confusion);
• mental health.

2.1 General health

As people age their health needs change, but there are practical steps people can take at any age to improve their health and reduce their risk of frailty.

All aspects of a person’s health should be addressed as part of their general health needs. These include:

• looking after their eyes;
• looking after their mouth and teeth;
• keeping active;
• getting the right medicines;
• getting vaccinations;
• preventing falls;
• looking after their hearing;
• eating and drinking well;
• looking after their bladder and bowels;
• keeping mentally healthy;
• keeping their brain active.

There are other issues that can affect a person’s general health, including:

• keeping warm;
• making sure their home environment is safe;
• preparing for winter as well as for heatwaves;
• caring and looking after themselves.

Information about all of these issues can be found in A Practical Guide to Healthy Ageing (NHS and Age UK). 

2.2 Malnutrition and dehydration

Having a balanced diet and sufficient (non-alcoholic) fluids are essential to keep well. This is particularly important for someone living with frailty.

Malnutrition affects approximately 1 in 10 older people and is a risk factor for becoming frail. It is a serious condition where a person’s diet does not have the right amount of nutrients. This could be due to not getting enough nutrients (undernutrition) or getting more than is needed (overnutrition). Both these factors can contribute to health conditions. Nutrients are important to maintain physical health and promote healing after injury or illness.

People who are malnourished are more likely to visit their GP, have hospital admissions and take longer to recover from illness or operations. If an older person loses weight, whilst it could be due to health conditions, it may also be a result of being malnourished.

Older people are also more at risk of dehydration, where the body loses more fluid than it is taking in. Symptoms of dehydration include:

• feeling thirsty;
• having dark yellow and strong-smelling urine;
• feeling dizzy or lightheaded;
• feeling tired;
• having a dry mouth, lips and eyes;
• not passing much urine – fewer than four times a day.

Dehydration is one of the most common reasons why an older person is admitted to hospital. It is also associated with increased risk of urinary tract infections, falls and pressure ulcers.

If it is suspected that a person who is frail is malnourished or dehydrated, with their permission (or their relevant person) their GP should be informed as soon as possible.

If the person is likely to become malnourished or dehydrated, ensuring sufficient intake of nutrition and fluids should be included in their care and support plan including working with the person to ensure they have food and drink that they like and can tolerate.

2.3 Falls

Falls can be common in older people and can result in serious health issues. Once someone has experienced a fall, particularly if it has resulted in a significant injury, it can be a main cause of loss of independence and even eventually going into long-term care. After a person has had a fall, the fear of falling again can result in a loss of confidence and self-esteem which can lead to them becoming increasingly inactive, this in turn leads to a loss of strength and a greater risk of further falls.

Working with someone to prevent them falling or from having further falls can include a number of simple practical measures such as:

• making simple changes to their home;
• ensuring they have the right medication;
• ensuring they have the right prescription glasses; and
• doing regular exercises to improve their strength and balance.

See Falls – Prevention (NHS)

2.4 Bladder and bowel problems

Urinary and bowel incontinence and constipation are very common, particularly in older people. However, embarrassment and stigma about these issues mean people often delay seeking help and support. These conditions in older people are often poorly managed and can cause them a lot of distress. Not enough of an appropriate diet and fluids can also impact on a person’s bowel and urinary problems.

If there are concerns that a person who is frail is suffering incontinence or constipation, they – or their relevant person – should be supported to speak to their GP.

For further information about these issues, visit the websites below:

Urinary Incontinence (NHS)

Bowel Incontinence (NHS)

Constipation (NHS)

2.5 Dementia

More than 850,000 in the UK are estimated to be living with dementia. People who are living with frailty and who also have dementia are at increased risk of poor health as a result of not being able to care for themselves adequately, particularly if they are living alone.

See Working with People with Dementia chapter and Knowsley’s Dementia Friendly Strategy

2.6 Delirium

Delirium is an episode of acute confusion. It can often be mistaken for dementia, but it is preventable and treatable. Older people are more at risk of developing delirium and it can be quite common (particularly for those who have cognitive impairment, severe illness or have broken their hip or have a urinary tract infection for example).

Older people with delirium may have longer stays in hospital, have an increased risk of complications such as falls, accidents or pressure ulcers and be more likely to be admitted into long-term care.

For further information please see these websites:

Sudden Confusion (Delirium) (NHS) 

Delirium (Sudden Confusion) (Dementia UK)

2.7 Mental health problems

Mental health problems such as depression and anxiety can be quite common for older people, and can have a major impact on their quality of life. Mental health problems in older adults may not be reported and so often go undetected and are therefore under-treated.

Where an adult who is living with frailty is suspected of having mental ill health issues, they may be supported to speak to their GP or other relevant agencies.

See also Your Mind Matters (Age UK)

3. Related Issues

3.1 Loneliness and social isolation

Many elderly people suffer from loneliness in England. This can have a serious effect on their mental and physical health and wellbeing.

Loneliness and social isolation can have additional negative impact on someone who is already living with frailty. There are different ways that loneliness can be addressed, depending on the needs, wishes and interests of the person. Discussions should take place with them to see what local services they may be interested in to support them to feel less lonely and isolated.

For further information see Loneliness (Age UK)

3.2 Physical activity

The benefits of physical activity for older adults is well evidenced, with multiple health benefits including promoting general health, improving cognitive function, lowering the risk of falls and reducing the likelihood of developing some long-term conditions and diseases.

Depending on the needs, wishes, interests and physical ability of the person living with frailty, there will be different options and organisations for them if they want to get involved in activities in their local area.

See also Being Active as You get Older (Age UK)

3.3 Safeguarding

People who are frail may experience, or be at risk of, abuse or neglect. This may be a result of their frailty or in combination with other mental or physical health conditions. They may be directly targeted by perpetrators who perceive them to be vulnerable or suffer unintentional abuse. Abuse may be committed by people they know such as family, friends or carers or by strangers.

People living with frailty may experience health and social care services that are not suited to their individual needs. They can also be vulnerable to receiving poor quality healthcare and services. In such circumstances they or their relevant person should be supported to make a complaint, as appropriate, to ensure that they receive the care and support to which they are entitled. This may need to involve the local authority and / or the Care Quality Commission if there are safeguarding concerns related to a service provider.

For further information see Safeguarding Procedures for Responding in Individual Cases chapter

3.4 Supporting people at the end of life

Advanced care planning is key to ensuring a person who is frail receives good, personalised care at the end of their life. People should be encouraged to have proactive discussions about their wishes for care at the end of life as early as possible and their wishes recorded. These discussions should include advance decisions to refuse treatment and do not attempt resuscitation decisions.

See Making Advance Decisions chapter and End of Life Care chapter.

4. Living with Frailty

People living with frailty can be supported to live as full a life as they wish and are able, although this may mean they need to adapt how they live their life and find new ways to manage daily tasks and activities. This may apply to their family and friends too.

If someone is living with frailty, it does not mean they lack mental capacity (see Mental Capacity and Code of Practice chapter) or cannot lead a full and independent life. Just because a person is frail does not mean that they cannot make decisions about their daily life or wider issues such as finances and where they live for example. They may need some practical support to put those decisions into practice however, where they may have physical difficulties for example in achieving those goals.

Frailty can deeply challenge a person’s sense of themselves as well as change how they are perceived and treated by others, including health and social care professionals. Ensuring they receive person centred care and their wishes and desires are listened to and acted upon wherever possible therefore, is key to their sense of self-esteem and ongoing enjoyment of life (see Personalisation chapter).

5. Further Reading

5.1 Relevant chapters

Preventing, Reducing or Delaying Needs

Assessment

5.2 Relevant information

Frailty in older people (Age UK)

Frailty and the NHS Long Term Plan (Age UK)

1. Introduction

Autistic adults may have been diagnosed as a child, or when they are older. Some may not have been diagnosed at all; this may be because they do not realise they are autistic, have not wanted support or have not felt able to speak to anyone about it.

Many people learn to cope with autism in their own way, although this may not be easy. They may be married or living with a partner, have families and successful careers. Others may be socially isolated, especially if they find it difficult to spend time with family or make friends.

This chapter is a summary of some of the main issues that staff need to consider when working with autistic adults, to help ensure their needs and wishes are identified and taken into account and adjustments are made as required so they can participate fully in decision making. It also provides additional references and website links.

2. What is Autism?

Autism affects how people communicate and interact with the world. The cause of autism is unknown, or if in fact if there is a definite cause. More than one in 100 people are autistic, and there are around 700,000 autistic adults and children in the UK (National Autistic Society). Whilst people from all nationalities, cultural, religious and social groups can be autistic, more males are diagnosed than females, but this may be a result of under-diagnosis in women and girls.

Autism is not an illness or disease; it cannot be ‘cured’. It is a life-long condition, and some people feel that being autistic is an important part of their identity. Autism may not be visible and therefore can be easily missed (see Working with Adults with Hidden Disabilities chapter).

All autistic people can learn and develop. Getting the right type of support and understanding, makes a huge difference to autistic people.

3. The Autism Spectrum

See also What is Autism (National Autistic Society)

Autism is a spectrum condition; there is a wide variation in the type and severity of symptoms that people can experience. All autistic people are affected in different ways. ‘Autism spectrum disorder’ (ASD), or more simply autism, is the commonly used term.

Autistic people may:

• find it hard to communicate and interact with other people;
• find it hard to understand how other people think or feel, and find it how to say how they feel themselves;
• find it hard to make friends or preferring to be on their own;
• seem blunt, rude or not interested in others without meaning to;
• be highly focused on interests or hobbies;
• find things like be over or under sensitive to smells, light, sound, taste, textures or touch, finding them stressful or uncomfortable;
• get very anxious or upset which can lead to meltdowns or shutdowns;
• take longer to understand information;
• do or think the same things over and over and feel very anxious if their routine changes. resulting in repetitive and restrictive behaviour.

Autism is not a learning disability, and autistic people can have any level of intelligence. However, autistic people may have other conditions (see Section 4, Related Conditions), which will mean they need different levels of support.

4. Related Conditions

Other conditions that can also affect autistic adults include:

• Attention deficit hyperactivity disorder (ADHD);
• dyslexia and dyspraxia;
• problems sleeping (insomnia);
• mental health problems;
• learning disabilities;
• epilepsy;
• problems with joints and other parts of the body, including:
  • flexible or painful joints;
  • skin that stretches or bruises easily;
  • diarrhoea or constipation.

For more information on these conditions see Other Conditions that affect Autistic People (NHS)

5. Assessment and Diagnosis

If a person thinks they may be autistic and wants to speak to someone about it, they should make an appointment to see their GP. If you think an adult you are supporting may be autistic, the National Autistic Society has advice on how to discuss this with them (see Broaching the subject, National Autistic Society).

They may be referred to a specialist for an autism assessment (see What happens during an Autism Assessment, NHS).

An autism diagnosis can be a daunting time, and may come as a shock, but for others it is a relief to find out why they think, feel and act the way they do.

Autism is not a medical condition that can be treated or cured, but following assessment, autistic people can access appropriate support and interventions, and adjustments can be made to help them stay well and have a good quality of life.

See also Newly Diagnosed: Things to Help (NHS)

Assessments and care and support plans should be reviewed and revised if it is felt that a person’s condition, or related conditions, are either deteriorating or improving. In addition, under the Equality Act 2010, services should make changes to the way they are delivered to ensure they are accessible to autistic people and people with other disabilities. The changes are called ‘reasonable adjustments’. Autistic people should always be asked if they require reasonable adjustments, and details of these should be clearly recorded and referred to each time the person accesses the service. Reasonable adjustments should be reviewed to ensure they continue to reflect a person’s circumstances.

6. Working with Autistic Adults

Autistic people can live a full life; it does not have to stop anyone having a good life. Like everyone else, autistic people have some things they are good at as well as things they find more of a challenge. A strengths-based assessment (see Section 5, Assessment and Diagnosis) should reveal these and be included in the person’s care and support plan, alongside any agreed ‘reasonable adjustments’ to the way services will be delivered.

Everyone is different, but there are some common characteristics that staff should consider when communicating and working with an autistic person. It is important avoid making assumptions about an autistic person’s experiences or needs, every autistic person is unique and will have a specific set of strengths and needs.  Ask the person what you can do to make the process easier for them and listen to and implement their suggestions where possible.

• Personalisation: Make sure the person is at the heat of all decision making, work with them to identify their unique abilities and challenges, and then work alongside them to achieve their (self) identified needs.
• Communication: Staff should remember that the person may find it difficult to communicate and interact with other people. Staff should understand that what the person says and how they say it may well be a feature of their condition. They should give the person time to communicate and be calm and considered in their communication with them. Ask about their communication needs / preferences.
• Understanding: The adult may find it difficult to understand how other people think or feel, therefore staff should remember that they may not be deliberately unfeeling or uncaring, but they are not able consider other people in the way that others do.
• Suitable Environment: Staff should ensure that any meeting or intervention with an autistic person does not take place in a noisy and over-stimulating environment. If they meet the person outside the workplace, they should find out from them what type of place they like to go, that is manageable for them and does not cause them additional stress.
• Anxiety: Autistic people can get anxious or stressed about unfamiliar situations and social events. Staff should take this into consideration when working with someone and plan interventions or meetings accordingly.
• Presenting information: Some autistic people may take longer to understand information that is presented to them. Staff should give them additional time to process information and provide it in easy read formats or give other assistance where required. They should also check with the person that they have understood what is being communicated, both at the time and also check their understanding again at later dates.
• Take time: Some autistic people may do or think the same things over and over again. Staff should bear this in mind when working with an autistic person and build additional time into their meetings and visits so that the person does not feel pressured to be quicker than is comfortable for them. Attempts to rush them may result in them feeling stressed which in turn may negatively impact on other behaviours. Multiple visits may be required.
• Training:Training is important, as it helps to ensure that staff have the right skills and knowledge to be able to provide safe, compassionate, and informed care to autistic people. The Health and Care Act 2022 introduced a requirement for regulated service providers to ensure that their staff receive training on learning disability and autism which is appropriate to their role. The Oliver McGowan Mandatory Training on Learning Disability and Autism is the government’s preferred and recommended training for staff to undertake. The training is delivered in two parts: Tier 1 is for people who require general awareness of the support autistic people and people with a learning disability may need, and Tier 2 is for people who provide care and support to autistic people or people with a learning disability. Both tiers begin with an e-learning session. Employers are responsible for ensuring their staff have the appropriate training for their role, and will advise staff on whether they should complete Tier 1 or Tier 2.

7. Further Information

7.1 National organisations and sources

National organisations that provide detailed or further information include:

• National Autistic Society;
• Ambitious about Autism; 
• Easy Read Information and Videos (NHS). 

Social media pages dedicated to issues affecting autistic people include

Facebook:

• National Autistic Society
• Ambitious about Autism
• Actually Autistic for autistic adults

X (formerly Twitter):

• National Autistic Society 
• Ambitious about Autism
• Autistica

Forums and communities:

• National Autistic Society – The Autism Community
• Autism Support (HealthUnlocked)

7.2 Local support

Search for local groups using:

• • the National Autistic Society services directory.

8. Further Reading

8.1 Relevant chapter

Working with Adults with Hidden Disabilities

8.2 Relevant information

Capabilities Statement for Social Work with Autistic Adults (BASW)

Core Capabilities Framework for Supporting Autistic People (Department of Health and Social Care)

The Oliver McGowan Mandatory Training on Learning Disability and Autism (NHS Health Education England)

Case Studies about Improving Support for People with a Learning Disability and Autistic People (LGA)

1. Introduction

It is essential that workers in adult social care and partner agencies who are working with an adult who has care and support needs consider and include the needs of all family members when carrying out assessments and developing plans.

There are four steps to the Whole-Family Approach:

• Step one: Think family;
• Step two: Get the whole picture;
• Step three: Make a plan that works for everyone;
• Step four: Check it is working for the whole family.

This chapter is taken from The Care Act and Whole-Family Approaches (Local Government Association et al) and provides guidance about using the Whole-Family Approach in daily practice.

2. Step One: Think Family – Early Intervention and Prevention

Under the Care Act 2014, a whole system, whole council, whole-family approach which organises services and support around the adult and their family must be taken. It also means that everyone must think about the impact of the care needs of the adult on their family, including any children they have.

The principle of wellbeing is at the heart of this approach (see Promoting Wellbeing chapter). A vital part of an adult’s wellbeing is the situation they live in, who they live with and  family relationships. It is important to achieve a balance between their wellbeing and that of any family or friends  caring for them.

A whole-family approach to promoting wellbeing and preventing need for care and support may include helping the adult and their family to think about what changes may happen in the future, and to plan for these – when the adult needs more care or if a carer becomes unwell for example (see Reducing, Preventing or Delaying Needs chapter).

The needs of young carers, for example a teenager who has to look after their disabled parent, are included in both the Care Act 2014 and in the Children and Families Act 2014. This is to make sure the council takes a whole-family approach to assessing and supporting the adult and their young carer and delivers support in a coordinated, organised way. (See Young Carers chapter, Children’s Social Care procedures and Annex A of The Care Act and Whole-Family Approaches (Local Government Association et al).

3. Step Two: Get the Whole Picture – Whole Family Assessment

Getting the whole picture means seeing each person as an individual, as well as recognising the part they play in their family and community. Everyone has something to contribute to addressing the adult’s needs. The Whole-Family Approach builds on everyone’s strengths and develops their resilience. It also promotes working together with carers as partners, as well as the adult and other members of the family and friends where appropriate.

Understanding the needs of the whole family and getting them to think about the outcomes they want to achieve individually, as well as a family is vital. It means the worker can then provide the right guidance, information and services.

Assessment is an important part of the process for everyone (see Assessment chapter). During the assessment, the worker can give guidance and information to help the family understand the situation, their needs and strengths. This can help to reduce or delay any increase in the adult’s needs and make sure that they have support when they need it. The aim of assessment is to get a full picture of the person and their needs and goals, so any carers must be consulted. Carers are recognised in the Care Act, in the same way as those they care for (see Carer’s Assessment, Assessment chapter).

Where an assessment does identify a potential child in need, the worker should contact their line manager to discuss the situation and a referral should be made to children’s services as appropriate (see Knowsley Safeguarding Children Partnership procedures).

4. Step Three: Make a Plan that Works for Everyone – Developing the Care and Support Plan

When councils and other agencies adopt a whole-family approach to developing care and support plans this can help achieve the best outcomes for the whole family. Sometimes, however, a plan can have a negative impact on other members of the family, particularly carers. This is something which must be considered when plans are reviewed.

A whole-family approach can also make better use of resources. Sometimes plans are needed for more than one member of the family and from different organisations, for example the Care Programme Approach if mental health services are involved. Plans should not be developed in isolation from one another but should be developed together. If everyone involved agrees, including the practitioners, plans for different family members can be combined to form a single plan in which there may be parts for individual family members as well as the family as a whole. This can be particularly important in making sure that everyone’s wellbeing is being considered and it can also be helpful in addressing any areas of conflict that arise and agreeing a way forward so that everyone achieves what they need, as far as possible.

5. Step Four: Check it is Working for the Whole Family – Review of Plans

As with assessment and care planning, wherever possible a whole-family approach to review should be taken. It should concentrate on the results that are being achieved by the adult and their family (known as an outcome focused review). Workers should consider giving others permission to conduct the review; this could be the person themselves, a carer or someone else.

Workers need to oversee the process and sign off all reviews. Sometimes a ‘light touch’ approach can be helpful in the early stages, which might include a telephone call or asking the adult or another family member to carry out a self-review to check that things are working as intended. Whatever approach is used, it should always include consider any impact of the care and support plan on other family members.

Where the review identifies things that have changed, the care and support plan may need to be updated to include these. Again the adult, their carer and anyone else they want included should be involved. The whole-family approach should make sure that everyone’s needs and wellbeing are considered (including any children), that there are no consequences for anyone that had not been seen in advance and that everyone agrees with the plan.

6. Tools to Use with the Whole-Family Approach

Annex C of The Care Act and Whole-Family Approaches (Local Government Association et al)

includes some practical tools for working with families which can be adapted and developed for local use. These include:

• questions to consider including in conversations at initial contact, assessment and care planning stages;
• whole-family care planning discussion questions;
• a genogram
• how to identify support networks;
• emergency crisis plans.

Annex D also provides a checklist of key practice points.

7. Further Reading

7.1 Relevant chapter

Domestic Abuse

7.2 Relevant information

The Care Act and Whole-Family Approaches (Local Government Association et al) 

1. Introduction

Not all disabilities can be seen from a person’s outward appearance. Hidden disabilities are sometimes also called invisible disabilities and include, for example, mental and physical health problems and developmental disabilities.

Following their investigation of three complaints against London Councils, the Local Government and Social Care Ombudsman stated local authorities should check their procedures to avoid disadvantaging people with hidden disabilities.

In each of the three cases the local authorities did not do enough to help people use their services. This included not making reasonable adjustments to help a woman with autism to repay overpaid housing benefit, and not helping a man with severe dyslexia to deal with parking tickets and permits.

Whilst the focus of this chapter is local authorities, the information is relevant to all those working with adults with care and support needs. It outlines different types of hidden disabilities and how staff should be aware of and respond to such issues.

2. Types of Hidden Disability

Whilst there is now a better understanding of some of the conditions that constitute hidden disabilities, it is vital that all interactions with adults, including assessments, are conducted with hidden disabilities in mind. This is to ensure all relevant care and support issues that the adult has are identified, to ensure they receive the appropriate services relevant to their individual needs. This process is vital to ensure they are not discriminated against, as a result of a hidden disability being missed or reasonable adjustments not being made.

The lists below are not exhaustive; there will be other physical and mental health problems and other conditions that result in hidden disabilities.

2.1 Mental health

For many adults who suffer with mental health problems, their issues may not be immediately obvious and can be misunderstood. Without good working relationships and without a member of staff undertaking a comprehensive assessment with the adult, key aspects of the care and support that they require may be missed and their problems, therefore, could be compounded. Such issues may include depression, stress, bipolar disorder, psychotic and neurotic thought processes and suicidal thoughts.

2.2 Developmental disabilities

Other conditions which can be hidden include:

• Dyslexia (development of literacy and language related skills affected);
• Dyspraxia (perception, language and thought processes affected);
• Attention Deficit Hyperactivity Disorder – ADHD (inattentiveness and hyperactivity-impulsivity);
• Autistic spectrum disorder (communication, relationships with others affected);
• Asperger’s syndrome (an autistic spectrum disorder).

Adults with such conditions have often developed ways of coping which may make it more difficult for staff to identify them as disabled. Even when someone can function well in many situations, this does not mean they are not disabled.

Issues to be aware of include:

• communication issues (verbal and non-verbal);
• understanding instructions;
• the speed at which they process things; and
• interpretation of social situations.

Some of these conditions may also co-exist with other hidden disabilities.

See Autism UK: What is Autism and Related Conditions for more information.

Adults with a learning disability or autism may have needs for care and support (within section 9 of the Care Act 2014 – the duty to assess – see Assessment chapter).

The Autism Act 2009 came into force in January 2010. Under the Act the Government has to publish and keep under review an Autism Strategy, as well as guidance for implementing the strategy which requires local authorities and NHS bodies to act (see Adult Autism Strategy: Supporting its Use (Department of Health and Social Care).

2.3 Physical health issues

Not all physical health problems are clearly visible. There are many conditions which can be hidden to include hearing and sight impairments, chronic fatigue syndrome / myalgic encephalomyelitis (ME), chronic pain and chronic illnesses such as fibromyalgia, epilepsy, diabetes, kidney failure and sleep disorders.

Such conditions should also be taken into consideration as a hidden disability.

2.4 Other issues for consideration

2.4.1 Mental capacity

See also Mental Capacity and Code of Practice chapter

Adult social care staff and other staff working with adults should be particularly mindful in considering mental capacity issues for adults with hidden disabilities when:

• assessing needs and make care planning decisions;
• conducting safeguarding enquiries;
• when there is a dispute over ordinary residence.

2.4.2 Human rights

See also Equality, Diversity and Human Rights chapter

Article 3 of the Human Rights Act 1998 imposes a duty to take reasonable steps to provide effective protection to children and other vulnerable persons whom the state knows or ought reasonably to know, are being subject to inhuman or degrading treatment (see also Z v United Kingdom Application No 29392/95, (2001) CCLR 310, ECHR).

3. Equality Act 2010

See also Equality, Diversity and Human Rights chapter

It is essential that people with hidden disabilities are not either directly or indirectly discriminated against, that is they should have the same level of assessment, care and support planning, care and support services and other opportunities as those who do not have a disability.

“The Equality Act 2010 requires councils to anticipate the needs of people who may need to access their services. This means when councils are alerted to the fact someone might need to be treated in a different way, they should ask that person what adjustments are needed, and consider whether these are reasonable…. We recognise the significant challenges faced by public service providers in adapting their processes to the needs of people who may require adjustments, particularly where the services have been automated. But this is a duty councils must meet and needs they must anticipate.” Local Government and Social Care Ombudsman

4. Working with Adults who may have Hidden Disabilities

See also Information and Advice chapter and Assessment chapter.

Staff working with adults should be aware that they, or their carer, may have hidden disabilities, particularly those who are having contact with the service for the first time. It is important to not make quick judgements about a person based on initial communication. This is particularly relevant for staff in information and assessment and “front door” services.

Where there are communication issues or other factors are present that are not otherwise easily explained, staff should consider whether hidden disability / disabilities may be the cause and carry out further investigations as appropriate.

When a hidden disability is discussed with an adult and / or their carer, the member of staff should record both the discussion and the hidden disability in the adult’s case records (see Case Recording Standards and Information Sharing). Where the adult already has a care and support plan, this may mean a review is required (see Review of Care and Support Plans) and adjustments to the plan may be required to respond to the newly disclosed / diagnosed disability which may change the person’s eligible care needs within the care and support plan.

See Appendix 1: Case Study

5. Blue Badge Scheme

See also Hidden Disabilities

The Blue Badge scheme has been extended to include people with hidden disabilities, such as autism and mental health conditions, for example.

The criteria have been extended so that people are eligible who:

• cannot undertake a journey without there being a risk of serious harm to their health or safety or that of any other person;
• cannot undertake a journey without it causing them very considerable psychological distress;
• have very considerable difficulty when walking (both the physical act and experience of walking).

This is particularly important for adults who find leaving their house a challenge. This may involve detailed preparations and sometimes overwhelming anxiety about plans going wrong or not being able to find parking spaces. Some autistic people might be unaware of road safety issues or become overwhelmed by busy or loud environments.

For further information see: Running a Blue Badge parking scheme: Guidance for local authorities (UK Government) 

6. Training and Awareness

Local authorities and other service providers should ensure they have a disability policy, ensure that staff are aware of hidden disabilities and know how to respond appropriately.  It should be addressed as part of general equal opportunities training.

7. Further Reading

7.1 Relevant chapters

Equality, Diversity and Human Rights

Assessment

Mental Capacity and Code of Practice

7.2 Relevant information

Councils need to check how they help People with Hidden Disabilities (Local Government and Social Care Ombudsman)

Appendix 1: Case Study

This case study refers to a situation in which the police restrained a young autistic man and failed to take special care: Commissioner of Police for the Metropolis -v-ZH [2013] EWCA Civ 69, 2013 16 CCLR 109

ZH suffered from severe autism and learning disabilities and became obsessed by the water at a local swimming pool. His carers knew if they attempted to touch to remove him that he would jump into the pool fully clothed. The police were called and informed that ZH was autistic but despite the warning they touched him whereupon he jumped into the pool. The police pulled ZH from the pool, restrained him before taking an agitated ZH to the police station. ZH sued the police.

The Court of Appeal held that the police had breached ZH’s human rights and were guilty of assault and false imprisonment and had breached the Disability Discrimination Act 1995. The police argued under the Mental Capacity Act 2005 that they were permitted to perform acts in relation to the care and treatment of persons lacking capacity where it was in their best interests. Their defence failed because their actions lacked reasonableness, practicability and appropriateness. The police should have consulted with the carers on how best to manage ZH’s behaviour and could not have held a reasonable belief that their actions were in ZH’s best interests.