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 advisor, 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

Some adults can manage their own finances with no or minimal support; others may need support to help them develop their money management skills.

There will be some adults who do not have the mental capacity to manage their own financial affairs at all and will need someone to be appointed to manage their financial affairs for them.

This chapter outlines the main issues about managing money on behalf of adults with care and support needs and about the different types of roles involved.

2. Supporting Adults to Manage Their Own Financial Affairs

If an adult has the mental capacity to make decisions about their finances, they must always be permitted and supported to do so. They may need support with shopping; paying bills and budgeting; keeping cash and bank cards safe and online banking for example.

The adult should also be encouraged and supported to store their financial documents securely, such as bank statements and PIN numbers. If possible, they should be discouraged from storing large quantities of money at home in order to reduce the risk of financial abuse and / or financial irregularities.

Any potential risk of theft by other people should be explained to the adult, so they can consider this as part of their decision-making process.

3. Appointing Someone to Manage an Adult’s Financial Affairs

See Mental Capacity Act and Code of Practice chapter

Where an adult lacks mental capacity to make their own financial decisions, then someone else may need to make those decisions for them or help them to make decisions.

On a one-off basis, if there is a single important financial decision to be made and the adult lacks the capacity to make it at that time, an application can be made to the Court of Protection for an order in this circumstance. See Apply for a one-off decision from the Court of Protection: Overview (gov.uk).

If the adult is likely to remain lacking in capacity to make financial decisions on an ongoing basis, then someone may be appointed to make financial decisions for them or help them to make financial decisions.

3.1 Attorney under a power of attorney

The adult may have appointed an attorney under a lasting power of attorney (LPA) or enduring power of attorney (EPA).

A property and financial affairs LPA gives an attorney the power to make decisions about money and property such as:

• managing a bank or building society account;
• paying bills;
• collecting benefits or a pension;
• selling a home.

See Find out if someone has an attorney, deputy or guardian acting for them (gov.uk)

3.2 Appointee – Department for Work and Pensions benefits

See also Become an appointee for someone claiming benefits (gov.uk)

An appointee is someone appointed by the Department for Work and Pensions (DWP) to act on behalf of an adult who is entitled to benefits from the DWP. They can only act for the adult in relation to those benefits, not their wider financial affairs.

An appointee can be:

• an individual, for example a friend or relative;
• an organisation or representative of an organisation, for example a solicitor or local authority.

An appointee is responsible for making and maintaining any benefit claims, for example:

• signing benefit claim forms;
• informing DWP about any changes which affect how much the adult (the claimant) gets;
• where the benefit is paid directly to the appointee, spending it in the adult’s best interests;
• informing the DWP of any relevant changes of circumstances, such as if the adult becomes capable of managing their own benefits and the appointee is no longer needed.

Following the appointment, the DWP will monitor the situation to make sure it remains correct.

The appointment can be stopped if:

• the appointee does not act properly under the terms of the appointment;
• the adult is clearly able to manage their own benefits;
• the appointee becomes incapable of performing the role.

3.3 Property and financial affairs deputy

See also Deputies: make decisions for someone who lacks capacity: Overview (gov.uk)

A property and financial affairs deputy (a deputy) is appointed by the Court of Protection to manage an adult’s financial affairs generally, and so has a wider role than an appointee appointed by the DWP.

They are responsible for helping an adult make decisions (or make decisions on their behalf) where that adult lacks the mental capacity to make their own financial decisions (see Mental Capacity chapter). The deputy must consider the adult’s level of mental capacity every time they make a decision for them, and not assume that it is the same at all times and for every type of decision. The Court of Protection will make an order setting out what the deputy can and cannot do.

The Court can appoint two or more deputies for the same adult, in which case the deputies can make decisions either:

• together (known as joint deputyship), which means all the deputies have to agree on the decision;
• separately or together (jointly and severally), which means deputies can make decisions on their own or with other deputies.

A property and financial affairs deputy can be:

• an individual, for example a friend or relative;
• an organisation or representative of an organisation, for example a solicitor or local authority, in which case they may be paid for carrying out their duties.

The Court of Protection can appoint a specialist deputy (called a panel deputy) from a list of approved law firms and charities, if no one else is available.

Someone applying to be a deputy must pay a fee to apply (the applicant). Before the appointment of a deputy, the Court of Protection will check:

• whether the adult needs a deputy; and
• that there are no objections to the appointment.

The applicant may also have to pay to set up a ‘security bond’ before they can be appointed. This is a type of insurance that protects the finances of the adult they are to act as a deputy for. The amount of the security bond depends on:

• the value of the estate of the adult the deputy is acting for; and
• how much of their estate is under the control of the deputy.

A security bond is not required if either:

• the deputy is a representative of a local authority; or
• the court decides that it is not necessary, for example if the adult’s estate is of low value.

The appointment of the person as a deputy will continue until the court order appointing them is changed, cancelled or expires.

Once appointed, deputies will be supervised, and provided with advice and support, by the Office of the Public Guardian, to check that they are meeting their standards for deputies. They must also pay an annual supervision fee.

When making a decision, a deputy must:

• make sure that it is in the best interests of the adult for whom they act;
• consider what they’ve done in the past;
• apply a high standard of care – this might mean involving other adults, for example getting advice from relatives and professionals such as doctors;
• do everything they can to help the adult understand the decision, for example explain what is going to happen with the help of pictures or sign language.

A deputy must submit an annual report to the Office of the Public Guardian, setting out the reasons for decisions taken and why these were in the adult’s best interests.

Deputies must not:

• take advantage of the adult’s situation, for example abuse them or profit from a decision taken on their behalf;
• make a will for the adult, or change their existing will;
• make gifts unless the court order permits this;
• hold any money or property in their own name on the adult’s behalf.

Deputies must make sure that:

• their own property and money is separate from that of the adult they are acting for;
• they keep records of the finances they manage on the adult’s behalf and include these in their annual deputy report:
• they keep copies of:
  • bank statements;
  • contracts for services or tradespeople;
  • receipts;
  • letters and emails about their activities as a Deputy;
  • expenses claimed for, such as phone calls, postage and travel costs.

A deputy may need to manage a court funds office account on the adult’s behalf. This is an account that was opened for them by a court order, for example for money they received from a court case.

See Deputies: Manage a Court Funds Office account (gov.uk)

4. Financial Irregularities

All financial irregularities should be reported as soon as they are noticed. Unexplained financial discrepancies may warrant a safeguarding concern being raised.

5. Further Reading

5.1 Relevant chapter

Financial Information and Advice

Direct Payments

5.2 Relevant Information

Apply for a one-off decision from the Court of Protection: Overview (gov.uk)

Deputies: make decisions for someone who lacks capacity: Overview (gov.uk)

Become an appointee for someone claiming benefits (.gov.uk)

Find out if someone has an attorney, deputy or guardian acting for them (gov.uk)

Deputies: manage a Court Funds Office account: Overview (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)

‘Cuckooing‘ is the term for when professional criminal gangs target the homes of adults who they have identified as vulnerable. They then use the property for dealing drugs, hiding firearms, stolen goods and money and other crimes. Arson and violence are other crimes associated with such gangs. The adult victim may have care and support needs, but this is not always the case.

The female cuckoo bird lays its eggs in other birds’ nests, which is where the term comes from.

2. Cuckoo Victims

Cuckooing victims may include:

• people with drug or alcohol problems;
• people already known to the police;
• older people;
• people who have mental or physical health problems;
• people with learning disabilities;
• female sex workers;
• single mums; and
• people living in poverty.

Other adults may also be at risk.

Where the victim is known to have drug problems, criminals often offer them free drugs in exchange for using their home for dealing.

Once they have gained control of the adult and their home there is significant risk to the victim of physical and psychological abuse, sexual exploitation and violence. Such adults are often used as drug runners, to move drugs from one place to another on behalf of the criminals, often under threat of violence if they do not agree.

The adult may be made to travel to places which are a distance away from their local area, but such exploitation make also take place in properties in the same vicinity. Movement of people for the purposes of exploitation is a criminal offence covered by the Modern Slavery Act 2015 (see Modern Slavery chapter), as it is a type of trafficking and slavery.

In such circumstances the victim may not feel they cannot go to the police or tell other professionals, as they are frightened that they will be suspected of being involved in drug dealing or being identified as a member of the gang. They may be afraid this could result in them being evicted from their home. Some victims feel forced out of their homes, or are actually made to leave by the gangs, which makes them homeless.

3. Gangs

Gangs may use a number of such residential properties, moving between them within hours, days, weeks or longer in an effort to avoid being detected by the police.

They may use accommodation in rural areas, including serviced apartments, holiday lets, budget hotels and caravan parks, again in an effort to avoid police detection.

Such criminals are very skilled at identifying adults who they think are in some way vulnerable to their coercive behaviour. They are often very business-like in how they operate, with a view to make as much money as possible.

4. Signs of Cuckooing

4.1 Signs an adult is being exploited or abused

The following are some of the signs that an adult is being exploited or abused:

• they associate with someone older than them and / or someone who controls what they do and where they go;
• they travel alone to places far away from home, where they may not have any connections;
• they get more telephone calls or people calling to their property than they usually do;
• they have physical injuries that they cannot, or do not, explain easily;
• they seem quiet and withdrawn, as if something is concerning them that they cannot talk about;
• they are known or suspected to be carrying or selling drugs;
• they are going missing from home or college, work or work placements;

• they have new clothes, possessions, more than one mobile phone or money than they cannot usually afford.

4.2 Signs of cuckooing in a local neighbourhood

The following are some of the signs that accommodation belonging to a vulnerable adult has been taken over by criminal gangs:

• people are entering and leaving the property, often throughout the day and night;
• there is an increase in the number of cars (including new vehicles), bikes, or taxis or hire cars outside the property;
• there is an increase in anti-social behaviour in and around the property, including litter and drug using equipment outside;
• the adult stops attending, or misses, appointments with support and / or healthcare services;

• professionals who visit the property to see the adult see new people there, who may also not introduce themselves;

• the property may not have many or any valuable possessions inside and may start to become neglected as items and stolen and damage is caused by people coming to the property and repairs not made;
• there are signs of drug use in and around the property, including discarded needles, crack pipes for example.

Such properties are often multi-occupancy accommodation (for example, a block of flats or a house that has been converted to a number of flats) or a social housing property.

5. Taking Action

If a member of staff is concerned about that an adult with care and support needs is being victimised by criminal gangs, particularly in their own home they should:

• discuss their concerns with their line manager;
• inform Merseyside Police; and
• raising a safeguarding concern with Knowsley Safeguarding Adults Team.

If a member of staff believes an adult is a victim of cuckooing but they do not have needs for care and support, this is still a crime and should be reported to the police.

All concerns or suspicions should be recorded in the adult’s case records as well as actions that have been taken and decisions that have been made (see Case Recording Standards and Information Sharing chapter).

6. Further Reading

6.1 Relevant chapter

Safeguarding Procedures for Responding in Individual Cases

6.2 Relevant information

Tackling ‘Cuckooing’ and County Lines Drug Networks (Crimestoppers)

Tackling Cuckooing: Multi-Agency Guidance (Kent Safeguarding Children Partnership)

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 from a set of barristers’ chambers 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:

• section 16 welfare applications brought by the local authority in the Court of Protection;
• appeals issued against a DoLs 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 section 42 safeguarding investigation, 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 are working with a parent to provide a report in relation to safeguarding or child protection proceedings in accordance with the statutory guidance Working Together to Safeguard Children; also under Practice Direction 12A, the Public Law Outline (PLO) and the Children Act 1989. 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 Liverpool City Region: Ordinary Residence Practice Guidance 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:

• the Care Act 2014 (including safeguarding);
• the Mental Capacity Act 2005 (including Deprivation of Liberty Safeguards); or
• the 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 Liverpool City Region: Ordinary Residence Practice Guidance 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;
• s21A witness statement in response to a deprivation of liberty safeguard challenge. The local authority should disclose standard authorisations under the gateway order and witness statement should be filed after first hearing. Staff should follow bullet points in 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 proceeding;
• 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;
• response to a s21A challenge 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
• supporting 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;
• 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)

5.2.1 Court reports: three key tips for writing clearly

• say what you mean clearly and concisely;
• use a strong active voice and avoid the passive (for example, ‘the support worker shared concerns about visitors to the house’);
• put the action in the verb – to do this you need to make the action clear (that can be either something you say has happened or something you think needs to happen).

See 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

With increasing pressure on services, it is vital that all those providing care and support – both employers and employees – are able to take time to think about their health and wellbeing as well as that of their colleagues, and the people and families they support.

The information in this chapter is taken from Health and Wellbeing of the Adult Social Care Workforce (Department of Health and Social Care). Whilst written during the COVID-19 pandemic, it includes relevant advice and links to other information that employers and managers can use to support their teams and address any concerns their staff may have.

2. Mental Wellbeing

The guidance recommends the following key steps to support staff with their mental health:

• have a structure to the day and try to develop a daily routine; writing a plan for the day or week may be helpful. It is also important that staff keep doing things they enjoy as this can give relief from anxious thoughts and feelings and can boost mood;
• physical health has a significant impact on mental wellbeing. As the body releases endorphins when exercising, this can relieve stress relief and also boost mood;
• maintaining relationships with family and / or friends is important for mental wellbeing. Staying in touch with people on the phone or via video or social media is particularly if people are feeling anxious;
• avoid continually checking the news – via 24-hour channels and social media – can people feel more worried and anxious. It may more helpful to only check the news at set times in the day;
• good-quality sleep can have a positive impact on how people feel mentally and physically. Every Mind Matters gives advice on how to get a good night’s sleep;
• people should be asked if they are ‘ok’, and always be encouraged to seek help if they are struggling. Services available include:
  • sending a message with the word FRONTLINE to 85258 to start a conversation with Shout’s messaging support service;
  • Samaritans offer support NHS and social care workers in England. They can be contact for free, day or night, on 116 123;
  • Every Mind Matters provides comprehensive support, tips and ideas on mental health and wellbeing.
  • link to local employee support scheme if available.

2.1 How managers can help

During supervision, managers should check in with their staff and ask about their wellbeing (although staff should be clear they can ask for help in between supervision if they are struggling).  Mind recommend developing Wellness Action Plans  with staff as a practical well of supporting their mental health and wellbeing.

See also Wellbeing Resource Finder (Skills for Care)

3. Building Resilience and Managing Stress and Anxiety

It is important that staff are helped to find ways of coping with increased pressure. Skills for Care has a guide on How to Build Personal Resilience. The guide includes tasks for staff to complete that help to recognise pressure and stress. It provides advice on developing resilience through emotional intelligence, accurate thinking and realistic optimism.

MindEd provides free educational resources on mental health and has a coronavirus staff resilience hub to help manage the mental health and wellbeing of frontline staff.

The Every Mind Matters page on anxiety provides good advice on managing worries that people may have.

Other information and support includes:

• Less stressful workplaces: what we can all do (Mental Health Foundation);
• How to be Mentally Healthy at Work (Mind);
• Every Mind Matters (NHS).

4. Physical Wellbeing

Staff should try to keep active, where and when possible. This can include walking outside or running or riding a bike once a day, as fresh air is extremely beneficial for mental health.

For those who are not able to exercise outdoors, there are several online workouts that can be done at home. The NHS provides free, easy 10-minute workouts and the NHS Fitness Studio has a collection of accessible exercise videos.

Staff should ensure they get rest and respite during work or between shifts, eat healthily, engage in physical activity and stay in contact with family and friends. People should avoid unhelpful coping strategies such as tobacco, alcohol or other drugs. In the long term, these can worsen mental and physical health.

Although the COVID pandemic has been officially declared over, it is still possible for staff to catch the virus. To reduce the risk of getting COVID and what to do if someone does get it, staff and managers should follow NHS advice COVID-19 (NHS).

5. Financial Wellbeing

Financial wellbeing is about people having a sense of security and having enough money to meet their needs; it is about being in control of day-to-day finances and having the financial freedom to make choices that allow people to enjoy their life.

There are a number of organisations to help staff with financial problems they may have:

• Money and Mental Health (Mind);
• Citizen’s Advice – information for people are struggling to pay their bills. It is important that bills are not ignored as this can make the situation worse;
• National Debtline provides free, confidential and independent advice on dealing with debt problems.

• The Moneyhelper Service works to improve people’s financial wellbeing. It gives free, impartial money advice through its online portal, via WhatsApp and over the phone. It also includes a tool and calculator which helps identify the support people may need and provides tailored information and guidance.

There is also information on:

• your rights if your hours are cut or you’re laid off;
• what to do if you cannot pay your tax bill on time.

6. Concerns about Work

It is important that people’s rights as workers are protected, especially during times of increased pressure. Similarly, staff have a professional duty to act if they are concerned that the safety of those they care for is at risk. If any member of staff has any concerns about employment practices, it is important that they feel able to raise them.

Any concerns should be raised with the senior management team in the first instance. There will be internal procedures in the workplace about what to do.

Staff can also contact their union or professional body, if they have one, for advice about what to do if they have concerns. They can play a helpful role in trying to resolve any problems staff may be facing and improve workplace practice.

Finally, if staff want to report a serious case of bad practice or have been unsuccessful in resolving any issues with their organisation, they can contact CQC and local council safeguarding teams (see also Whistleblowing chapter).

7. Further Reading

7.1 Relevant chapter

Supervision

7.2 Relevant information

Health and Wellbeing of the Adult Social Care Workforce (Department of Health and Social Care)

Taking Care of your Staff’s Mental Health (Mind) 

Social Worker Wellbeing and Working Conditions Toolkit (BASW) 

Looking After Yourself (Skills for Care)

1. Introduction

Adults who use care and support services, and those of partner agencies, are at the centre of the personalisation agenda and the Care Act 2014. Feedback from adults and carers about their service experience and outcomes – that were either achieved or not achieved – are vital to providing effective and appropriate services.

2. Co-production

Co-production is a way of working whereby everybody – adults who use services, carers and staff – work together on an equal basis to create a service or come to a decision which works for them all.

However, the definition of co-production changes in different settings (see What is Co-production? TLAP).

The Care Act states:

Co-production is when you as an individual influence the support and services you receive, or when groups of people get together to influence the way that services are designed, commissioned and delivered.

The TLAP National Co-production Advisory Group says:

Co-production is not just a word, it is not just a concept, it is a meeting of minds coming together to find shared solutions. In practice, co-production involves people who use services being consulted, included and working together from the start to the end of any project that affects them. When co-production works best, people who use services and carers are valued by organisations as equal partners, can share power and have influence over decisions made.

The New Economics Foundation notes six main aspects of co-production:

Recognising people as assets: People are seen as equal partners in designing and delivering services, rather than as passive beneficiaries or burdens on the system.

Building on people’s capabilities: Everyone recognises that each person has abilities and people are supported to develop these. People are supported to use what they are able to do to benefit their community themselves and other people.

Developing two-way reciprocal relationships: All co-production involves some mutuality, both between individuals, carers and public service professionals and between the individuals who are involved.

Encouraging peer support networks: Peer and personal networks are often not valued enough and not supported. Co-production builds these networks alongside support from professionals.

Blurring boundaries between delivering and receiving services: The usual line between those people who design and deliver services and those who use them is blurred with more people involved in getting things done.

Facilitating not delivering to: Public sector organisations (like the government, local councils and health services) enable things to happen, rather than provide services themselves. An example of this is when a council supports people who use services to develop a peer support network.

3. Involving Adults

Adults who use services should be involved at each level of development, delivery, and review of care and support services in order to ensure:

• that services are developed to meet the care and support needs of adults;
• that the services which are provided are of good quality;
• positive outcomes for those who use the service.

Service commissioners should ensure that adults who use services can:

• have their views considered in the development of new strategies and services;
• contribute to the review and performance management of existing strategies and services;
• receive information on planning and delivering of new services in an accessible and jargon-free format;
• contribute to meetings and decision making where practicable. This may include practical support (for example, reimbursement of expenses; considering the time and venue for meetings) and other assistance (for example help to deal with jargon – see TLAP Care and Support Jargon Buster);
• access appropriate training and mentoring support to enable them to contribute to planning arenas.

Social workers and service providers should ensure adults:

• have easy access to information about their rights and responsibilities within the service;
• have easy access to clear information on all the services available (see Information and Advice chapter);
• have access to information on their care and support options (see Care and Support Planning chapter);
• are fully involved in the assessment process and development and review of their individual care plan and have their needs, wishes and goals incorporated into their plan (see Assessment chapter);
• receive information on how to make comments, complaints and compliments about the service they receive (see Complaints, Comments, Compliments and Questions chapter);
• contribute to the evaluation of the service.

User led organisations (ULOs) are one approach to facilitating user involvement as referenced in the Care and Support Statutory Guidance. ULOs are organisations that are run by and controlled by people who use care and support services, including disabled people of any impairment, older people, and families and carers. See also A Commissioner’s Guide to Developing and Sustaining Local User-Led Organisations (SCIE).

4. Further Reading

4.1 Relevant chapters

The Care Act 2014

Personalisation

4.2 Relevant information

Think Local Act Personal, Coproduction

Am I Invisible? Using Co-production to Advocate Change in Social Care (SCIE)

Quality Statement 4: Using People’s Views to Improve Services (NICE)

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 – that is 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 whose aim is to solve poverty. It defines poverty simply as being when someone’s resources are well below their minimum needs.

However, it goes on to say that 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.

JRF gives a number of different measures of poverty (see What is Poverty?), but a government publication just gives two:

• relative low income: a person is in relative low income (or relative poverty) if they are living in a household with income below 60% of the average household income in that year;
• absolute low income: a person is in absolute low income (or absolute poverty) if they are living in households with income below 60% of the 2010/11 median (taking inflation into account). This is a base line measure which looks at how living standards of low income households change over time (Poverty in the UK: Statistics, House of Commons Library).

Income can be measured before or after housing costs are taken out of the calculation, and poverty is calculated based on these different definitions of income.

2.1 Levels of poverty

JRF defines different levels of poverty:

• a person or household has a minimum amount of income (the income standard) or better: this means they are able to afford a decent standard of living;
• a person or household has income that is below the accepted minimum income standard: they can just about get by on a daily basis, but it is difficult for them to manage unexpected costs and events;
• a person or household does not have enough income: and they are falling well short of a decent standard of living and it is quite likely they will not be able to pay their needs;
• a person or household is destitute: that means they cannot afford to eat, keep clean and stay warm and dry.

See What is Poverty? (JRF)

3. What are the Causes of Povrkerty 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 being 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;
• 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.

There are a number of worldwide factors that have pushed up prices, further impacting on the number of people in poverty and worsening levels of poverty. These include:

• inflation in the UK is now higher than it has been for many years and this is impacting on the cost of goods, rents and mortgages;
• there is a shortage of workers which has meant companies have had to increase their wages to attract staff, which in turn means prices have to rise;
• the cost of shipping and importing and exporting goods have risen partly due to the UK leaving the European Union (Brexit);
• the war in Ukraine – this is impacting on food prices, because Ukraine is usually a very big exporter of sunflower oil and wheat;
• the worldwide cost of oil production is resulting in record heating, lighting and fuel costs.

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

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;
  • they may not be able to walk or use public transport due to health issues and therefore need their own car or pay for taxis.

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 those issues listed above.

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.

The types of abuse and neglect that may be committed by those who are suffering as a result of poverty and who are involved with someone with care and support needs, include:

• 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 their organisation’s safeguarding procedures and the local safeguarding adults procedures (see Safeguarding Procedures for Responding in Individual Cases chapter.

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 significant knowledge about appropriate interventions for people living in poverty, there are 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. 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 they 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 someone living in poverty is not asked to pay for services.
• equipment, supplies and adaptations: where someone requires equipment, supplies or adaptations to them 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 assisted 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 Department for Work and Pensions should be contacted to see if the person is eligible for any financial support for their move and refurbishment of the new accommodation;
• utility bills: if the person is struggling to pay their gas, electricity and water bills, staff should support them to contact the relevant service provider to come to an arrangement about overdue bills or in advance of bills being sent. This also applies to internet providers, which may be essential for people with care and support needs living at home;
• 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;
• transport: a person with care and support needs who is living in poverty may not be able to afford bus or taxi fares, and particularly unable 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.

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.

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:

• Get Help with the Cost of Living (Citizens Advice Bureau)
• Debt and Money (Citizens Advice Bureau)
• Poverty (Salvation Army)
• Advice Service (Child Poverty Action Group)

8. Further Reading

8.1 Relevant information

Joseph Rowntree Charitable Trust

The Trussell Trust

Understanding Social Work and Poverty (BASW)

Cost of Living Crisis (Mencap Easy Read)

1. Introduction

As people get older, they sometimes find that loss of memory becomes problematic. Whilst it is normal for memory to be affected by a number of different factors including age, increased levels of stress, tiredness, menopause or certain illnesses and medications, it may be that there are underlying medical reasons that may require investigation and treatment, including dementia.

The following statistics relate to dementia in the UK:

• there are currently an estimated 944,000 people with dementia;
• the number of people with dementia is predicted to rise to 1.1m by 2030, 1.4m by 2040 and will reach 1.6m by 2050;
• one in 14 people in the UK aged over 65 have dementia;
• the financial cost is £34.7 billion each year;
• women are more likely than men to develop dementia in their lifetimes, partly due to the fact that women live longer than men. (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 includes 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 they develop 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 can be different for each person. There are no treatments yet that can slow the progression or delay the onset of the diseases which cause dementia, but a number of treatments which care currently available on the NHS can help to temporarily reduce symptoms.

An adult who is experiencing a number of the symptoms related to dementia may find it difficult to keep being independent and may often 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, in the first instance 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;
• having 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 very 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 them choking, which may be followed by getting 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 has first noticed 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 at first, 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 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 Making Advance Decisions 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 lessens and often disappears completely.

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 seem to be 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 light, sound, taste 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, Other Conditions), which will mean they need different levels of support.

4. Other 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 someone 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.

• 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.
• 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.
• 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 Facebook group
• Ambitious about Autism Facebook group
• Actually Autistic for autistic adults

Twitter:

• National Autistic Society Twitter group
• Ambitious about Autism Twitter group
• Autistica

Forums and communities:

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

7.2 Local support

Support services in a person’s local area should include:

• local support groups (this information should be available from the local autism assessment service);
• the local authority who may carry out a needs assessment with the person;
• the local authority’s information and advice service;
• at college or work – speak to student support services or the human resources department about reasonable adjustments which can be made;
• search for local groups using:
• the National Autistic Society services directory;
• autism support groups on the NHS website.

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

Harassment and violence towards staff can have a direct effect on their health and safety. It can also affect standards of work, performance, confidence and morale of all staff.

Staff in roles most at risk are those who:

• give a service;
• are carers;
• are in education;
• are involved in cash transactions;
• make deliveries / collections;
• work with people who may exhibit controlling behaviour towards others;
• represent authority.

Those committing acts of harassment and / or violence to staff may be adults with care and support needs, their family or friends or other members of the public. A person who commits such acts may be subject to a police investigation and criminal prosecution or other organisational sanctions, such as loss of service.

Managers and staff have a responsibility to abide by the policies and procedures of the service to:

• limit incidents of harassment and violence;
• respond to them appropriately;
• protect themselves and their colleagues;
• report the incident to the police with a view to prosecution, where appropriate.

2. What is Violence and Harassment?

2.1 Violence

Violence to staff is defined as abuse, threats or assaults in circumstances relating to their work. This includes:

• verbal abuse;
• offensive language;
• discriminatory or derogatory remarks, for example those which are racist, sexist or homophobic in nature;
• obscene gestures;
• threatening behaviour;
• stalking;
• physical attacks;
• spitting; and
• throwing objects.

2.2 Harassment

Harassment is when a person causes alarm or distress to a member of staff; which can result in the victim being put in fear of violence. It can include repeated attempts to communicate with the member of staff, which are clearly unwanted and contact them in a way that the perpetrator expects to cause them distress or fear.

3. Assessing Risk from Violence and Aggression

The main factors that can create risk are:

• mental health disorders;
• impatience;
• frustration;
• anxiety;
• resentment;
• drink and / or drugs;
• inherent aggression.

3.1 Violence risk assessments: staff responsibilities

Every adult who has a history of aggression / violence must have a care and support plan risk assessment. This should identify the risks and state the actions to be taken to minimise these risks. This should include family or friends who have such a known history, even if the adult themselves does not present a risk.

Information should be shared with other concerned organisations.

Systems in place to flag high risk cases should be activated.

Risk assessments should be regularly reviewed, care plans updated and actions taken to minimise risks.

Senior managers should be informed of risks and decisions documented and signed on case files.

3.2 Violence risk assessments: managers responsibilities

When carrying out a potential violence risk assessment, the following factors should be considered.

In the workplace:

• work activities;
• working conditions;
• design of the work activities and surrounding environment;
• frequency of situations that present a risk of workplace violence;
• severity of the potential consequences to the member of staff who may be exposed to a risk;
• information on workplace violence based on historical evidence and accurate information;
• measures already in place to prevent workplace violence.

The wider working environment:

• description of the department or area the manager or supervisor is in charge of;
• history of violence in the department / service area;
• activities in the department / service area that could expose workers to violence;
• circumstances that might increase the risk of violence in the department / service area;
• measures in place to address violence and the resources needed to implement them.

3.3  Recording

See Case Recording Standards and Information Sharing chapter

It is crucial for the safety and wellbeing of staff, adults and the protection of the organisation and wider community that risk assessments are fully documented. This includes clearly documented management oversight and decision making.

4. Management Responsibilities

Managers must assess the risk of both physical and non-physical assault to staff and take appropriate action to deal with it.

These steps may include:

• providing suitable training and information;
• improving the design of the working environment (such as physical security measures);
• making changes to aspects of staff roles;
• following the escalation policy of the organisation including reporting high risk cases of potential risk of violence and all incidents of actual physical and non-physical assault so that preventative action can be taken to ensure it is not repeated.

This will also help managers to check for patterns and so help predict the types of incidents that could occur.

Findings from all risk assessments should be communicated to all staff as appropriate, and arrangements put in place to monitor and review such assessments.

Mechanisms should be in place to share learning with staff and across the service.

4.1 Staff support

Depending on the seriousness of the incident, staff who have been the victim of harassment and / or violence should receive robust support from managers and the organisation’s human resources department as appropriate.

This may include:

• debriefing by the line manager, as soon as possible following the incident;
• supervision with the line manager for a more in-depth examination of the incident and any learning points that arise or further discussion with other colleagues including senior managers;
• team discussion regarding the incident where appropriate to share learning and any change in practice required;
• referral for counselling for the member of staff, where required;
• support for the member of staff and the line manager, as required, in the case of any ongoing police investigation and subsequent prosecution or other internal organisational sanctions taken against the person perpetrating the harassment or violence.

Managers should also ensure that where the perpetrator is an adult who still uses the service, that steps are taken to discuss the situation with them, their behaviour, how they could have responded differently and referral to other agencies for support / interventions regarding behaviour management as appropriate.

5. Further Reading

5.1 Relevant chapter

Lone Working

5.2 Relevant information

Work Related Violence (Health and Safety Executive) 

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.