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Carers factsheet
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How to access services – information for carers
Introduction
Who is a carer?
Carers' needs
Carers Assessments
Who is eligible?
Contacting social services
What happens at an assessment?
After the assessment
Charging for services
Appealing
Carers and services for people with mental health needs
Mental Health Assessments
Can I request an assessment?
What happens during an assessment?
Admission to hospital
Aftercare
Coping in crisis situations
Information sharing and confidentiality
The person I am caring for…
… wants me to be informed
… does not want me to be informed
… is unable to say whether I should be kept informed
Emotional support – services for carers
Finance
Carer's Allowance
Other benefits
Benefits for the person you care for
How to claim benefits
Financial planning
Trusts
Enduring power of attorney and receivership
Legal advice
Further reading
Useful contacts
References
This factsheet outlines the help and services that are available for carers of people with mental health problems. For more information on the emotional aspects of the caring role, see Mind's booklet How to cope as a carer.
Introduction
Who is a carer?
You are a carer if you provide help and support to someone with a mental health problem and/or a physical disability. The term 'carer' is often used to distinguish between friends and family who provide unpaid care and paid professionals, such as care workers, home helps and people employed by someone with a disability.
Some carers are related to the person they are caring for, others are not. The carer may be looking after a parent, child, partner, grandparent or friend, for example. Some carers live with the cared-for person, whilst others live apart.
The caring relationship may be mutual. For example, a person with a mental health problem who is supported emotionally by his or her elderly parents may provide them with the practical help they need due to their physical disabilities.
Carers come from all sections of the community, but, as people from minority communities are over-represented in the statistics of those diagnosed with mental health problems, it is likely there are proportionally more carers among minority groups.
Carers' needs
Carers may need to be supported in different ways. They may need:
- emotional support
- access to information and advice
- time-off from caring
- financial support
- services for them and for the person they care for
- to be involved in the care planning process
- practical support
- recognition of the contribution they make.
Different groups of carers may have different needs. For example, older carers may worry about what will happen when they become too ill or frail to care. Lesbians and gay men may be concerned that they may not be recognised as a carer and may be excluded from support services.
Carers Assessments
Under the Carers (Recognition and Services) Act 1995, carers have a right to an assessment of their own needs. Carers Assessments are carried out by your local social services department.
The Carers Assessment is an opportunity to discuss:
- help you may need to carry on caring (if you want to continue)
- what support you may need to maintain your own health and how to balance caring with other life and work commitments.
Social services use the Carers Assessment to determine what services they will provide.
Who is eligible?
You have a right to an assessment if you look after a friend or relative who cannot manage without your help.
If you are aged over 16, your right to an assessment is not affected even if the person you care for does not want to receive help from social services.
You also have a right to an assessment if you intend to look after someone. You may have a friend or relative who is in hospital at the moment, for example, and you expect to look after them when they come back home. In such situations a Carers Assessment should occur before discharge and in parallel with the other person's assessment.
Contacting social services
To arrange for a Carers Assessment, contact your local social services department. The telephone number and address will be listed in the telephone book under the name of your local authority. You can also ask your GP to contact social services for you.
What happens at an assessment?
A social worker or other member of the social services staff will normally carry out the assessment. If necessary, you can ask to talk in private, without the person you are caring for being present.
Try to give as much information you can about your situation. Think about:
- the impact of caring on your own health
- how you combine caring with working and other responsibilities
- your need to see family and other friends
- the emotional impact of caring
- how you might deal with an emergency
- your relationship with the person you are caring for.
The social worker will understand that it may be difficult to talk about these issues. You are entitled to have a friend or advocate present at the assessment. If you feel that you have forgotten to say something during the session, you can always arrange for a follow-up visit with the social worker.
The social worker should use the assessment to discuss with you what support and services would help you to look after the person you care for. Social services may provide support to you or they may provide it directly to the person you are looking after.
If you are going to be caring for some time, the social worker should also arrange a date to review your needs.
After the assessment
Social services will decide what help and services to provide. They will take into account both the Carers Assessment and an assessment of the person being cared for (if this has been carried out). The decisions will be set out in a care plan.
Services may include, for example, respite care. Respite care is intended to provide those receiving care and carers with a break from each other for a short period. It may involve someone coming to your home in order to provide support for the person being cared for and provide you with a break, or it may involve a short period of residential care for the person being cared for.
The person being cared for can refuse help from social services. This may leave you with very little or no support. If this is the case, it is important that the local authority should consider other areas of support that may ease some of the pressures. They may, for example, offer help with cleaning, or taxis for hospital appointments.
Social services cannot refuse to meet a need they have identified solely on the basis that they do not have the money or other resources.
Charging for services
Social services may charge for some services. The person you are caring for may be asked questions about their finances. They may choose not to give this information, but social services may assume they can pay the full cost if they don't.
Carers may be charged for the services provided for themselves. You may be asked some questions about your own finances.
Charges vary, but social services must make sure the charges are 'reasonable' and must make sure no one is denied a service because they cannot pay. Social services cannot charge you for services that are provided to the person for whom you care.
Appealing
If you are unhappy with how your assessment was carried out or with the services offered, you may wish to make a complaint. Every social services department will have a complaints procedure. You may also want to contact your nearest Citizens Advice Bureau for support. The telephone number will be in the local directory.
Carers and services for people with mental health needs
Mental Health Assessments
If you are unable to persuade the person you care for to get help and feel that the situation is an emergency, you may want to contact social services for a Mental Health Assessment under the Mental Health Act 1983. This may lead to the person being 'sectioned', or compulsorily placed in hospital care.
According to the Act, someone can only be compulsorily admitted to hospital if they are "suffering from mental disorder"[1]and detention is necessary:
- in the interests of his own health or
- in the interests of his own safety or
- for the protection of other people.[2]
The different sections of the Act require additional specific criteria to be met.
Can I request an assessment?
Under section 13 (4) of the Mental Health Act 1983 the 'nearest relative' has the power to request the social services department to carry out an assessment. Social services are legally obliged to respond. Contact the social services department in the area where the person lives. The phone number will be in the local telephone directory.
The term 'nearest relative'[3]is a legal one. The relevant person is identified by law in the following order:
- husband/wife (this also includes people who have been living as man and wife for at least six months)
- son/daughter (if aged over 18)
- father/mother
- brother/sister
- grandparent
- grandchild
- uncle/aunt
- nephew/niece
If there is no one in the first category, move to the second category and so on. If there is more than one person in a category, the older one takes priority. (Only those living in England and Wales can be counted.) However, a relative who is actually caring for someone takes priority over all the others. A person who is not a relative, but has been living with the person concerned for at least five years, can also be considered as the 'nearest relative'.
A request for an assessment can be made by someone who is not the nearest relative, but in this case the local authority are not obliged to respond.
The law in this area is complicated: if you are not sure who is the nearest relative of the person you are caring for, you should seek legal advice. (See section below on legal support.)
What happens during an assessment?
Mental Health Assessments are usually coordinated by an Approved Social Worker. Two doctors are also usually involved, to assess the needs of the person experiencing mental health problems.
The Code of Practice for the Mental Health Act 1983 recommends that, if the person is to be admitted to hospital against their will, the Approved Social Worker should make the application (although the nearest relative can do this). This is partly to offset the "…potential adverse effect that a nearest relative application might have on the relationship with the patient."[4]
Carers may find it very difficult to consider initiating a process that may lead to compulsory admission to hospital. The Code of Practice states that Mental Health Assessments should not be viewed as a way of getting someone into hospital against their wishes, but as a way of assessing someone's need for care or treatment. Alternatives to hospital should be considered.[5] These could include voluntary admission, outpatient medical treatment, for example, or other forms of care or treatment.
Admission to hospital
On admission to hospital, the primary nurse for the person you care for should be able to give you the following information:[6]
- ward name and telephone number
- the names of key staff, including consultant psychiatrist, key/primary nurse, ward manager and key worker/care coordinator
- visiting times
- how to contact social services
- your rights as a carer
- what to expect when you see the person you care for (for example, any changes in appearance, attitude towards you)
- the availability of assistance with travel if you care for someone who is in hospital a long distance away from where you live
- if the person you care for is detained under the Mental Health Act 1983, an explanation of his or her rights and your rights if you are the 'nearest relative'.
If the person you care for wishes you to be involved in the planning of his or her care, you should also be given the following information:
Aftercare
District Health Authorities and local social services have a legal duty to provide aftercare for patients who have been sectioned (under sections 3, 37, 47 or 48 of the Mental Health Act) but have left hospital.[7]
In England, this aftercare is provided under the Care Programme Approach (CPA) guidance. This states that the person should receive:
- an assessment – involving health and social services
- a care plan
- a keyworker
- a regular review.
You should be given the following information if the person you care for wishes you to be involved in his or her care:[8]
- the date and times of the meetings to plan aftercare which should be arranged, as far as possible, at a time that is convenient for you
- a copy of the aftercare plan.
Even if the person you care for is not willing for you to have such information about his or her care, you should be given your own carer's plan if you will be providing substantial care on a regular basis.
If the patient has not been hospitalised under one of the sections of the Mental Health Act described above, they should still receive a CPA assessment before being discharged from hospital.
Under the NHS and Community Care Act 1990, the CPA assessment should include a social services' assessment for community care services. The social services will assess the person to decide whether or not services will be provided.
Carers' providing 'regular and substantial care' for the service user can request a Carers Assessment at the same time (see above).
Coping with crisis situations
It can be a good idea to talk to the person you are caring for about their wishes should a crisis situation arise. It might be useful to keep a contact list of people who could be contacted in an emergency, for example, (if appropriate) the key worker, community psychiatric nurse or psychiatrist.
Find out who is available outside office hours. Services can still be provided without a proper assessment if they are required urgently. A proper assessment must be carried out as soon as it is practical to do so.[9]
Information sharing and confidentiality
The person I am caring for wants me to be informed
If the person you care for is happy for you to be given information about his or her treatment and care, this should be made clear to the professionals involved.
You could ask the person you are caring for to state in writing that you should be kept informed. This should be updated regularly. It might be helpful if an independent person, for example, an advocacy worker, witnesses this authority.
The person I am caring for does not want me to be informed
Health professionals have a general duty of confidentiality which applies when personal information is given in confidence. It is generally accepted that personal health and social care information should generally not be disclosed without the person's consent. [10] There are exceptions to this general duty of confidentiality: firstly, where the disclosure is required by law (legislation or court order) and secondly, where the disclosure is considered to be in the public interest, for example, to protect the person you are caring for or someone else from harm.
If the person you care for does not consent to you receiving information about his or her care and treatment, you will only be given general information. For example, you may be given information about the type of mental health problem the person you care for has, but not details of the treatment.
However, without specific information about the care and treatment that the person you care for is receiving, your ability to provide help and support is likely to be restricted. This should be explained to the person you are caring for so that he or she can take this into account when deciding what information you should be given.
It is important that you are given the information that you need to provide care safely and effectively. If you are concerned that you or the person you care for will be or are being put at risk because you do not have essential information, you should raise this concern with one of the professionals involved. The care team will need to decide whether you should be given information without the agreement of the person you care for. You should not be expected to provide care in circumstances where you do not have access to essential information. [11]
The person I am caring for is unable to say whether I should be kept informed
If the person you care for lacks the capacity (either temporarily or permanently) to consent to information being disclosed, it is up to the person's care team to consider whether it will be in the best interests of the person you care for to discuss his or her care and treatment with you.
If the person you care for stated prior to losing capacity to make such decisions that you should be given such information, those wishes should be followed.
It is possible for the person you are caring for to state in advance the care they would wish to receive or not receive should they lose capacity in the future. An Advance Statement is the general term for an act whereby a person, while mentally competent, specifically makes arrangements about their future health care should they become unable to do this in the future. This may be achieved either through a document which has become known as an Advance Directive or Living Will (which is legally binding in the UK) or by nominating someone to be consulted about treatment decisions (the health care proxy or welfare attorney) or by a combination of both.
An Advance Statement is a statement of views or wishes to be taken into account in decision-making and is not intended to be binding on the health care team. An Advance Directive is intended to be a binding refusal of treatment.
For more information on Advance Statements and your rights as a carer to information you should contact a lawyer or your local Citizens Advice Bureau.
The Royal College of Psychiatrists has produced a free leaflet on these issues. Carers and confidentiality in mental health: issues involved in information-sharing is available on their website: www.rcpsych.ac.uk
Emotional support: services for carers
Some people find that it helps to have someone to talk to. You might find counselling, self-help groups or support groups useful.
It may be possible for your GP to refer you to an NHS counsellor. Unfortunately, this type of referral is not available everywhere in the country. A number of voluntary organisations, for example, local Mind associations, offer counselling. Ring MindinfoLine (0845 766 0163 open Monday to Friday, 9.15-5.15) for details.
Alternatively, you may be able to afford to see a private counsellor. For more information contact the British Association for Counselling and Psychotherapy (0870 443 5252).
For information about support groups, call the MindinfoLine or Carers UK (Carersline on 0808 808 7777).
Finance
Carer's Allowance
Carer's Allowance is the main state benefit for carers. There are complex criteria for this benefit.
- You must be 16-years-old or over.
- You must look after someone for at least 35 hours a week.
- The person you look after must receive a qualifying disability benefit, such as Attendance Allowance or Disability Living Allowance (middle or highest rate for personal care).
- If you work you must not earn more than £79.
- You must not get one of a list of other benefits.
- You must be living in the UK when you claim Carer's Allowance.
- You must not be a full-time student.
Carer's Allowance can be paid to more than one person in a household, such as a couple caring for each other. If you have savings you can still receive Carer's Allowance. Other benefits you receive may increase or decrease if you claim Carer's Allowance. Certain benefits for the person you look after may sometimes reduce.
You may also be eligible for Carer Premium. This is not a benefit, but an extra amount of money included in the calculation of Income Support, income-based Job seekers' Allowance, Housing Benefit and Council Tax Benefit. An equivalent amount is used in the calculation of Pension Credit. To get the Carer Premium you will need to apply Carer's Allowance.
Other benefits
You may also be eligible for other benefits.
- Income Support/Pension Credit – is for people who have no income or whose income is below minimum levels set by the government.
- National Insurance Credits/Home Responsibilities Protection.
- Working Tax Credit – this is for people who are in work (you must usually be over 25 and work for at least 30 hours a week).
- Child Tax Credit – for people who look after a child under 16 (or under 19 in education).
- Health benefits – those on low income or because of their age or medical condition may be able to get help with certain health costs such as prescriptions.
- Council Tax Benefit – helps people to pay their Council Tax.
- Housing Benefit – helps people on a low income pay their rent .
- Jobseeker's Allowance – is paid to people who are unemployed or working part-time and are expected to look for a full-time work.
The Social Fund also helps people to pay for one-off expenses, including funeral, winter or cold weather expenses.
Benefits for the person you care for
The person you are caring for may also be eligible for benefits.
- Disability Living Allowance – is for disabled people aged under 65 who find it difficult to care for themselves.
- Attendance Allowance – is for disabled people aged 65 or over, who find it difficult to care for themselves.
- Incapacity Benefit – is for people who are unable to work because of illness or disability.
How to claim benefits
- To claim Carer's Allowance, Income Support, health benefits or to apply to the Social Fund, contact you local social security office (the number will be in your local telephone book).
- To claim Pension Credit contact the Pension Service on 0800 99 1234.
- For Working Tax Credits, Child Tax Credit and National Insurance Credits/Home Responsbilities Protection contact the Inland Revenue (helpline 0845 300 3900 [Northern Ireland: 0845 603 2000]).
- To claim Council Tax Benefit and Housing Benefit contact your local council (the number will be in the local telephone directory).
- For Jobseekers Allowance contact your local Jobcentre (the number will be in the local telephone directory).
- To claim Disability Living Allowance, Attendance Allowance or Incapacity Benefit ring the Department of Work and Pensions' Enquiry Line (0800 88 22 00).
The benefits system is complicated. Claiming can be difficult and time-consuming. For advice, contact your local Citizens Advice Bureau (the details will be in the local telephone book). You can also ring MindinfoLine on 0845 766 0163 (Monday to Friday, 9.15-5.15).
Financial planning
Trusts
As a carer you may be concerned about trying to secure the financial future of the person you are caring for. Depending on your circumstances or those of other members of the family, you may think about setting up a trust. Mind's free guide Making provision will take you through the options, including ways of creating a trust without jeopardising entitlement to state-funded care and benefits.
It is important that the trust is drawn up correctly. You should consult a lawyer who specialises in this area. Your current solicitor may be able to assist or advise you of another firm who may be able to help. Mind can also help you to locate solicitors in your area who list wills, trusts and mental health amongst their areas of expertise.
Mind is a Trust Corporation. This means that we can be appointed to act as an executor and trustee. An executor is the person you appoint in your will to administer your estate. A trustee (you can appoint up to four when you set up a trust) will be responsible for looking after the trust fund and, consequently, your loved one's well-being. Trustees are not responsible for providing personal support or care.
Enduring power of attorney and receivership
There are other ways of securing the financial future of the person you care for. An enduring power of attorney is a process by which the 'donor' gives the legal right to one or more people (the 'attorneys') to manage their financial affairs and property on their behalf.
If the person you are caring for has not made an enduring power of attorney and becomes incapable of managing their financial affairs, it may be necessary to appoint a receiver to manage them. This is done through the court of protection.
If managing the person's financial affairs consists simply of managing income from benefits, you may think about establishing an appointeeship. This can be done by contacting their local department for work and pensions.
For more information on these issues, contact the Public Guardianship Office (0845 330 2900 or www.guardianship.gov.uk). You can also contact your local Citizens Advice Bureau or Mind's Legal Unit (see below).
Legal advice
Mind's Legal Unit gives legal advice on mental health law and related areas by telephone, email or in writing, and has a network of solicitors who have experience in mental health issues and who specialise in different areas of law. The legal advice line (020 8519 2122) is open on Mondays, Wednesdays and Fridays from 2pm to 4.30 pm. You can also write to them at Mind's Legal Unit, Mind, Granta House, 15-19 Broadway, London E15 4BQ or email legal@mind.org.uk
The unit has produced an Outline guide to the Mental Health Act and a series of Rights guides available from Mind Publications.
Further reading
Booklets from Mind
Mind publishes a range of booklets, factsheets and brief guides addressing different mental health problems. These are available from the bookshop, or from Mind Publications on 0844 448 4448 or email publications@mind.org.uk
(The booklet Understanding mental illness is available in Bengali, Catonese, Gujerati, Hindi, Punjabi, Somali, Turkish, Urdu and Welsh.)
Caring
How to cope as a carer
How to assert yourself
How to look after yourself
How to stop worrying
How to improve your mental wellbeing
How to help someone who is suicidal
How to recognise the early signs of mental distress
Hypomania factsheet
Understanding ADHD (Attention Deficit Hyperactivity Disorder)
Understanding anxiety
Understanding autistic spectrum disorders
Understanding borderline personality disorder
Understanding dementia
Understanding depression
Understanding dissociative disorders
Understanding dual diagnosis
Understanding eating distress
Understanding gender dysphoria
Understanding learning disabilities
Understanding manic depression
Understanding obsessive-compulsive disorder
Understanding paranoia
Understanding personality disorder
Understanding phobias
Understanding post-traumatic stress disorder
Understanding postnatal depression
Understanding psychotic experiences
Understanding schizoaffective disorder
Understanding schizophrenia
Understanding self-harm
Medication
Alphabetical list of drugs
Alternatives to lithium, carbamazepine and valproate factsheet
Getting the best from your pharmacist factsheet
Making sense of antidepressants
Making sense of antipsychotics
Making sense of ECT
Making sense of lithium
Making sense of minor tranquillisers
Making sense of sleeping pills
Nefazodone factsheet
Complementary therapies
Mind guide to massage
Mind guide to physical activity
Mind guide to relaxation
Mind guide to yoga
Making sense of herbal remedies
Making sense of homeopathy
Making sense of traditional Chinese medicine
St John's Wort factsheet
Counselling
Hypnotherapy
Making sense of cognitive behaviour therapy
Making sense of counselling
Making sense of psychotherapy and psychoanalysis
Understanding talking treatments
Mental Health Act 1983 – an outline guide
Statistics four: The Mental Health Act 1983
Mind rights guide 1: civil admission to hospital
Mind rights guide 2: mental hospital and the police
Mind rights guide 3: consent to treatment
Mind rights guide 4: discharge from hospital
Mind rights guide 5: mental health and the courts
The community care series of factsheets
1 - The spectrum of mental health services
2 - Systems for delivering mental health services
3 - How to access community mental health services
4 - Commissioning services
5 - Charging for community care services
A brief guide to who's who in mental health factsheet
Getting the best from your approved social worker
Crisis
Crisis services factsheet
Legal briefing: advance directives
List of crisis services open to self-referrals
Benefits
Benefits for people with mental health problems
Housing
Emergency housing factsheet
Supported housing factsheet
Holidays
Holidays factsheet
Advocacy
Mind guide to advocacy
Public attitudes to mental distress factsheet
Leaflets from other organisations
Carers and confidentiality in mental health: issues involved in information-sharing, Royal College of Psychiatrists, available online at www.rcpsych.ac.uk
A commitment to carers. 2003, produced by Rethink for the Department of Health. Aimed at supporting relatives, partners and friends of people with a mental health problem. Available online at www.rethink.org
Guide for carers. Produced by the Carers Advisory Group, established by the NHS Executive London and the Social Services Inspectorate for London. Free, order online at www.rethink.org.uk
National strategy for carers. The Government's policy document on carers. Available online at www.carers.gov.uk
Who cares? 2003. Asks how easy it is for a mental health carer to access support, information and services. Available online at www.rethink.org
Books
Aldridge, J. and Becker, S. 2003, Children caring for parents with mental illness: perspectives of young carers and professionals, Policy Press – available from Mind.
Aroba, T. and Bell, L. 2001, Staying sane: managing the stress of caring, Age Concern – available from Mind.
Baker, B. 2003, When someone you love has depression, Sheldon – available from Mind.
Baldwin, S. (ed). 1998, Needs assessment and community care – clinical practice and policy making, Butterworth-Heinemann.
Bornat, J., Johnson, J., Pereira, C., Pilgrim, D., and Williams, F (eds) 1997. Community care: a reader (second edition), Oxford University Press.
Brennan, G. February 1998, Providing information to carers of people admitted to psychiatric hospital, Mental Health Care, Vol. 1, No. 6.
Carers Advisory Group 2001, Working with carers – a handbook for professionals working with those who provide help and support to people with mental health problems, The London Mental Health Carers' Charter.
Carers Advisory Group 2001, A guide for those who care for people with mental health problems, The London Mental Health Carers' Charter.
Carpenter, J. and Sharaini, S. Choice, information and dignity – involving users and carers in care management and mental health, The Policy Press.
Child Poverty Action Group 2001, Paying for care handbook – a guide for services, charges and welfare benefits for adults in need of care in the community or in residential or nursing homes, second edition.
Coleman, R., Baker, P. and Taylor, K. 2000, Working to recovery: victim to victor III – a guide to mental wellbeing, Handsell Publishing.
Davis, A et al. 1997, Claiming Disability Living Allowance, Birmingham University.
Department of Health September 1999, Modern standards and service models: mental health national service frameworks.
Department of Health/social services inspectorate 1998, A matter of chance for carers: inspection of local authority support for carers.
Forster, S. 1997, The A-Z of community mental health practice, Stanley Thomas.
Goldsmith, M. 1996, Hearing the voice of people with dementia: opportunities and obstacles, JKP.
Grant, L. 1998, Remind me who I am, again, Granta.
Gray-Davidson, F. 1994, Alzheimer's: a practical guide for carers to help you through the day, Piatkus – available from Mind.
Helen, M. 1997, Coping with suicide, Sheldon Press – available from Mind.
Heron, C. 2000, Working with carers, Jessica Kingsley Publishers, London.
Hodgkinson, L. 1995, Eating disorders: your questions answered, Ward Lock.
Hogman, G. and Pearson, G. 1995. The silent partners: the needs and experiences of people who care for people with a severe mental illness, Rethink.
Howe, G. 1998, Getting into the system: living with serious mental Illness, JKP.
Howe, G. 1997, Serious mental illness – a family affair, Sheldon Press.
Jenkinson, A. 2003, Past caring: the beginning not the end, Polperro Heritage Press – available from Mind.
Karp, D. A. 2001, The burden of sympathy: how families cope with mental illness, Oxford University Press – available from Mind.
Kuipers, E. and Bebbington, P. 1997, Living with mental illness, a book for relatives and friends (second edition), Souvenir Press.
Lacey, R. 1996, The complete guide to psychiatric drugs: a layman's guide (second edition) Mind/Ebury Press.
Leff, J. (ed) 1997, Care in the community: illusion or reality? John Wiley and sons – available from Mind.
Levenkron, S. 1998, Cutting: understanding and overcoming self-mutilation, W W Norton.
Lodge, B. 1981, Coping with caring: a guide to identifying and supporting an elderly person with dementia, Mind – available from Mind.
Mace, N. and Rabins P 1999, The 36-hour day: a family guide to caring for persons with Alzheimer's disease, related dementing illnesses, and memory loss in later life (third edition), John Hopkins University Press – available from Mind.
Mind 2001, Legal rights and mental health the Mind manual 16th edition.
Neale, R M. 1998, To challenge or not to challenge, Curlew Productions Scotland.
Perkins, R and Repper, J. 1996, Working alongside people with long term mental health problems, Chapman and Hall.
Ramsey, R., Gerade, C., Mars, S. and Szmukler, G. (eds) 2001, Mental illness – a handbook for carers, Jessica Kingsley Publishers, London – available from Mind.
Shore, L. and Holmshaw, J. October 1998, What can carers do? (describes Rethink's carer training programme), Mental Health Care, Vol. 2, No. 2.
Smith, M. 1998, Working with self-harm, Handsell Publishing.
Stein, L. I. and Santos Alberto, B. 1998, Assertive community treatment of persons with severe mental illness, W W Norton.
Wallcraft, J. and Reed, J., Guidelines on equal opportunities and mental health, Mind/UNISON.
Whitefield, A. 1996, Making the most of being a carer: a practical guide to lightening the load, Need2Know.
Wilson, J. and Myers, J. 1998, Self-help groups: getting started, keeping going, R A Wilson.
Wing Kwong L. et al 1992, Working with Chinese carers – a handbook for professionals, Health Education Authority and King's Fund.
Zgola, J. M. 1999, Care that works: a relationship approach to persons with dementia, John Hopkins University Press.
Useful contacts
Information and support
Carers UK (previously Carers National Association)
20-25 Glasshouse Yard, London EC1A 4JT
CarersLine: 080 8808 7777 (10am-12noon; Wednesday and Thursday 2-4pm)
tel: 020 7490 8818 fax: 020 7490 8824
email: info@carersuk.org
website: www.carersuk.org
Provides information and support for carers. Branches throughout the UK. Information on subjects such as benefits, residential care, respite care and the Carers Act.
Caring about carers
website: www.carers.gov.uk
Government website offering advice and information to carers.
Caring Matters
website: www.caringmatters.org.uk Information to help people who need support making decisions, taking actions or expressing their wishes about care or money.
Mental Health Media
356 Holloway Road, London N7 6PA
tel: 020 7700 8171 fax: 020 7686 0959
website: www.mhmedia.com
Produce Friends and family, a video and booklet looking at good support and understanding from friends and relatives.
Samaritans
tel: 08457 90 90 90 (lo-call 24 hours a day)
fax: 020 8394 8301 textphone: 08457 909 192
email: jo@samaritans.org
website: www.samaritans.org
Samaritans – Correspondence Branch:
PO Box 9090, Stirling FK8 2SA
Provides confidential emotional support for anyone in a crisis.
United Kingdom Advocacy Network (UKAN)
Suite 417, Volvserve House, 14-18 West Bar Green, Sheffield S1 2DA
tel: 0114 272 8171
email: office@-ukan.co.uk
website: www.u-kan.co.uk
Contact UKAN to locate a local advocacy service.
Organisations relevant for those caring for older people
Age Concern England
Astral House, 1268 London Road, London SW16 4ER
tel: 0800 009 966 (7am-7pm, 365 days a year; also via typetalk) admin: 020 8765 7200 fax: 020 8765 7211
website: www.ageconcern.org.uk
Provides information and referrals to older people and carers. Network of local branches. Produces a wide range of factsheets about issues such as community care, residential care, benefits and legal matters.
Counsel and care
Twyman House, 16 Bonny Street, London NW1 9PG
tel: 0845 300 7585 (Monday to Friday 10am-1pm)admin: 020 7241 8555 fax: 020 7267 6877
email: advice@counselandcare.org.uk
website: www.counselandcare.org.uk
Free and confidential advice service to older people, carers and professionals. Can give advice about accommodation.
Organisations relevant for those caring for younger people
Princess Royal Trust for Carers
142 Minories, London EC3 1LB
tel: 020 7480 7788
email: help@carers.org
website: www.carers.org
The Trust provides quality information, advice and support services to 180,000 carers including 10,300 young carers.
YoungMinds
102-108 Clerkenwell Road, London EC1M 5SA
helpline 0800 018 2138 (Monday and Friday 10-1pm; Tuesday, Wednesday and Thursday 1pm-4pm)
email: enquiries@youngminds.org.uk
website: www.youngminds.org.uk
Runs an information service for parents and carers who are worried about the mental health or emotional wellbeing of a child or young person.
Specific mental health problems
Alzheimer's Society
Gordon House, 10 Greencoat Place, London SW1P 1PH
helpline: 0845 300 0336 (Monday to Friday 8.30am-6.30pm) fax: 020 7306 0808
email: info@alzheimers.org.uk
website: www.alzheimers.org.uk
Provides helplines and support for people with dementia and their carers.
Depression Alliance
35 Westminster Bridge Road, London SE1 7JB
Saneline 0845 767 8000, tel: 020 7633 0557
fax: 020 7633 0559
website: www.depressionalliance.org
Provides information, support and understanding to those who are affected by depression. Range of services for the friends or relatives of people with depression, a penfriend service, an internet group and a range of information leaflets.
Fellowship of Depressives Anonymous
Box FDA c/o Self Help Nottingham, Ormiston House, 32-36 Pelham Street, Nottingham NG1 2EG
tel:087 077 44320
email: fdainfo@hotmail.com
website: www.depressionanon.co.uk
National self-help charity for and by people who suffer from depression. Groups, penfriends and phone friend scheme, newsletter.
Hearing Voices Network
91 Oldham St, Manchester M4 1LW
tel: 0161 834 5768
email: info@hearing-voices.org
website: www.hearing-voices.org
Self-help group for people with experience of hearing voices.
Manic Depression Fellowship
Castle Works, 21 St Georges Road, London SE1 6ES
tel: 020 7793 2600 Advice and information line: 08456 340 540 fax: 020 7793 2639
email: mdf@mdf.org.uk
Website: www.mdf.org.uk
Advice and information for people with manic depression and their families and carers. Network of self-help groups for users and carers.
Rethink (formerly National Schizophrenia Fellowship)
30 Tabernacle Street, London EC2A 4DD
advice line:020 8974 6814 (Monday to Friday 10am-3pm) tel: 0845 456 0455 fax: 020 8547 3862
email: info@rethink.org
website: www.rethink.org
Rethink is a campaigning membership charity involving people with severe mental illness and their carers, with a network of mutual support groups around the country. Rethink has produced a Carer's Assessment Pack, which is designed to help carers, advisers and professionals identify carer's needs.
Respite care
Anchor Care Trust
website: www.anchor.org.uk
Local numbers available from website. A not-for-profit organsiation dedicated to helping older people live safely, securely and independently.
Crossroads Association
10 Regent Place, Rugby, Warwickshire CV21 2PN
tel: 0845 4500 350 fax: 01788 565 498
email: communication@crossroads.org.uk
website: www.crossroads.org.uk
Provides practical respite to carers by enabling trained care attendants to take the place of the regular family carer. There are 214 affiliated autonomous Crossroads schemes throughout England and Wales.
Mental After Care Association (MACA)
1st Floor, Lincoln House, 296-302 High Holborn, London WC1V 7JH
tel: 020 706 13400 fax: 020 706 13401
email: info@maca.org.uk
website: www.maca.org.uk
Aims to provide community services for people with mental health problems and their carers – including respite support for carers.
United Kingdom Homecare Association (UKHCA)
42b Banstead Road, Carshalton Beeches, Surrey SM5 3NW
Helpline: 020 8288 1551 fax: 020 8288 1550
email: enquiries@ukhca.co.uk
website: www.ukhca.co.uk
Aims to raise the profile of domiciliary care as a genuine alternative. Provides information about services for users.
For those concerned about elderly people in residential care or nursing homes
Relatives and Residents Association
24 The Ivories, 6-18 Northampton St, London N1 2HY
advice line: 020 7359 8136 tel: 020 7359 8148 fax: 020 7226 6603
email: advice@relres.org
website: www.relres.org
Aims to help relatives and friends make sure that elderly people in residential care or nursing homes and long-stay hospitals are receiving the best possible care. Also helps people find and negotiate places in homes.
Legal advice
Community Legal Service
tel: 0845 345 4345 (weekdays 9am-5pm)
website: www.clsdirect.org.uk
For information on advice centres and lawyers in your area.
Law Society
tel: 0870 606 6575 (Monday-Friday 8.30am-5pm)
website: www.lawsociety.org.uk
For solicitors with experience of representing people at Mental Health Review Tribunals.
Mind's Legal Unit
15-19 Broadway, London E15 4BQ
tel: 020 8519 2122 (Wednesday and Friday 2-4.30 pm)
Gives legal advice on mental health law and related areas by telephone or in writing, and has a network of solicitors who have experience in mental health issues and who specialise in different areas of law.
Organisations specifically for Black and minority ethnic communities
African-Caribbean Mental Health Association
Suites 34 and 37, 49 Effra Road, London SW2 1BZ
tel: 020 7737 3603 fax: 020 7737 3603
Advice, counselling, therapy and alternative therapies for mentally distressed people of African and Caribbean descent. Offers legal advice and advocacy. Volunteer befriending and advocacy service in hospitals. Joint social worker/community advocate support and outreach. Also provide support and advice for carers.
Asian Health Agency
Unit B, Fairfieldworks, Fairfield Road, Hounslow, Middlesex TW3 1UZ
tel: 020 8577 9747 fax: 020 8570 9064
email: taha001@aol.com
website: www.taha.org.uk
Provides a range of services including counselling, advocacy and respite care for Asian elders, disabled people and carers. Two projects for disabled Asian children and carers.
Chinese Mental Health Association
2nd Floor, Zenith House, 155 Curtain Road, London EC2A 3QY
tel. 020 7613 1008 fax 020 7739 6577
email: info@cmha.org.uk
website: www.cmha.org.uk
Works for people of Chinese origin experiencing mental distress.
Confederation of Indian Organisations (UK)
5 Westminster Bridge Road, London SE1 7XW
tel: 020 7928 9889 fax 020 7620 4025
email: headoffice@cio.org.uk
website: www.cio.org.uk
CIO provides a mental health service for South Asian communities, offering information support and counselling.
Information on psychiatric medication
United Kingdom Psychiatric Pharmacy Group (UKPPG)
helpline: 020 7919 2999
website: www.ukppg.org.uk
Information on psychiatric medication for carers and users.
Counselling
British Association for Counselling and Psychotherapy (BACP)
BACP House, 35-37 Albert Street, Rugby, Warwickshire CV21 2SG
tel: 0870 443 5252 fax: 01788 562189
email: bacp@bacp.co.uk
website: www.bacp.co.uk
Information on counselling and counsellors in your area.
Telephone counselling
Careline
tel:020 8514 1177 (Monday-Friday 10am-1pm and 7-10pm)
Confidential telephone counselling on any issue.
Counselling for couples
Relate
Relateline: 0845 456 1310 (Monday-Friday 9am-5pm)
website: www.relate.org.uk
82 local centres offering counselling to people with relationship problems.
Wales
Alzheimer's Society – Wales Office
Fourth Floor, Baltic House, Mountstewart Square, Cardiff CF10 5FH
tel: 02920 431 990
email: rows@alzheimers.org.uk
website: www.alzheimers.org.uk
Cardiff Patients Council
Whitchurch Hospital, Park Road, Cardiff CF14 7BQ
tel: 029 2033 6373
Carers National Association – Wales
River House, Ynysbridge Court, Gwaeloo y Garth, Cardiff CF15 9SS
tel: 029 2081 1370
website: www.carersuk.org
Dementia Careline – South Wales
1 Park Road, Whitchurch, Cardiff CF14 7BP
tel: 029 2052 9548 or 029 2052 9848 (10am-10pm daily)
A telephone service for carers of elderly people with memory problems or Alzheimer's disease.
Hafal (formerly National Schizophrenia Fellowship Cymru)
Suite C, William Knox House, Britannic Way, Llandarcy, Neath SA10 6EL
tel: 01792 816 600
email: hafal@hafal.org
website: www.mentalhealthwales.net
Manic Depression Fellowship (Wales)
1 Palmyra Place, Newport, South Wales NP20 4EJ
helpline: 08456 340 080 (Monday-Friday 9.30am-4pm)
email: info@mdfwales.org.uk
website: www.mdfwales.org.uk
Relate Dyfed Powys
Ty Merthyr, Little Water Street, Carmarthen SA31 1ER
tel: 01267 236 737
Relate North Wales
8 Riviere's Avenue, Colwyn Bay, Conwy LL29 7DP
tel: 01492 533 920
email: relate.northwales@virgin.net
Updated by Sarah Jane Gillam, November 2004.
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References
[1] Mind 2003, The Mental Health Act 1983 - an outline guide, Mind Publications, Definitions (section 1).
[2] The Stationery Office August 1993,The Code of Practice, Mental Health Act 1983, paragraph 2.6 Department of Health and Welsh Office, London.
[3] "Nearest relative" is a legal term defined in the Mental Health Act 1983 in section 26. A full priority order listing of relatives is given in the Mental Health Act Manual published by Sweet and Maxwell p141 (5th edition). The nearest relative can nominate someone else to act in their place or, in certain circumstances, the local authority can seek the displacement of the nearest relative in the county court.
[4] The Code of Practice, Mental Health Act 1983, Department of Health and Welsh Office, August 1993, London: The Stationery Office, paragraph 2.30.
[5] The Code of Practice, Mental Health Act 1983, Department of Health and Welsh Office, August 1993, London: The Stationery Office, paragraph 2.5.
[6] A Guide for those who care for people with mental health problems – Guide for Carers. The London Mental Health Carers' Charter, 2001.
[7] Mind 2003, The Mental Health Act 1983 - an outline guide, p.8 Mind Publications.
[8] The London Mental Health Carers' Charter, 2001, A guide for those who care for people with mental health problems – guide for Carers.
[9] Ibid.
[10] Department of Health March 2001, Mental Health Information Strategy, Department of Health.
[11] Ibid.
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