Disabled people and mental health support services

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This booklet has been written by, and for, disabled people who have mental health support needs. By the word 'disabled', we mean people with physical impairments who are also disadvantaged by the attitudes and practices of society.

Introduction
The range of mental health services that might be available
How to access services
Using services
What rights do you have?
If things go wrong
Helpful organisations
Useful websites
Further reading

Introduction

This booklet is designed to help and support disabled people who need to use mental health services. There are many coping strategies that are effective for people at times, including friendship networks, religious or spiritual beliefs, exercise, diet and creative expression, but this booklet is about how to get help from more formal support services.

You may want to take a friend, relative or an advocate along with you when you need support. An advocate can help you:

• in your dealings with professionals or agencies
• express your views and needs
• gather information
• make a complaint about a service.

For more information about advocacy, see The Mind guide to advocacy. Some advocacy services are for anyone, but others are specifically for disabled people, people with mental health support needs, older people or people from ethnic minority groups. For advocacy organisations in your area, contact the UK Advocacy Network (UKAN), your local Patient's Advice and Liaison Service (PALS) or (in Wales) your local Community Health Council, your local disability or mental health information service, or NHS Direct (see Helpful Organisations).

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The range of mental health services that might be available

Mental health services within the NHS
If you are looking for professional help with a mental health issue, your GP may be the first person you contact. GPs can treat you directly and/or prescribe medication. Some have counsellors or therapists attached to their surgeries. You may be able to see one on a short term basis.

If you need more specialist help, GPs can refer you to other services. These may include:

• A local community mental health team (CMHT). These are specialist teams with psychiatrists, psychologists, social workers, occupational therapists, community mental health nurses (CPNs) and community support workers.
• Psychology, psychotherapy or counselling services.
• Art and creative therapies.
• Day services, such as a day hospital, day centre or drop-in centre.
• Specialist services, such as an eating disorder clinic, or substance abuse service.

If your GP only offers you medication and you want other forms of support, you could ask for a referral to the CMHT or to another service. Although the availability of services, particularly for talking treatments such as psychotherapy or counselling, varies within the NHS, you should persevere if you feel this is what you need.

If you want more advice about the effects of medication (including its effects on your disability), ring the medication helpline run by the United Kingdom Psychiatric Pharmacy Group (UKPPG) (see Helpful organisations).

Sometimes you or a doctor may think it helpful for you to go into hospital. When admitted to hospital, you may be offered medication, therapies and/or a range of activities. Most people in hospital are voluntary patients: they may leave, and accept or refuse treatment. If your health or safety is at risk or you are considered to be a risk to other people, or your mental health is likely to deteriorate without treatment, you may be admitted and treated compulsorily under the Mental Health Act. This is often referred to as being 'sectioned'. If you are sectioned, you can be legally detained in hospital and treated against your will. If this happens, you have special rights under the Mental Health Act 1983.

Mental health services outside the NHS
Talking treatments and alternative and complementary therapies, such as aromatherapy, acupuncture, homeopathy, shiatsu or reflexology, are not always available through the NHS, although you should ask your GP or CMHT if they are provided in your area. To receive these and other therapies, you may have to pay for them. Some therapists will vary their fees according to your income.

For more information about talking treatments, see the Mind booklets Making sense of psychotherapy and psychoanalysis, Making sense of counselling, Making sense of cognitive behaviour therapy, and Understanding talking treatments. For information about the use of complementary and alternative therapies in mental health, see Jan Wallcraft's report Healing Minds (see Further reading).

Voluntary sector or user-led services
There are many mental health projects run as charities or as independent organisations, some by people who have had mental health support needs. These may include helplines, befriending services, drop-ins, non-medical crisis houses, services to support particular groups of people such as South Asian people, women or people with a particular diagnosis. A good source of information about support methods arising from people's own experience is Something Inside So Strong, edited by Jim Read (see Further reading).

Self-help groups
Self-help groups are supportive spaces for people with shared experiences to come together and explore a common issue, with everyone taking an equal role. If the group is facilitated and led by an outside person, the term support group is often used. Self-help groups exist for almost any problem or diagnosis. There are also groups made up of people who share common experiences or backgrounds, for example for women or people from an ethnic minority community. (See below for suggestions about how to find a self-help group.)

Information or advice services
Day-to-day difficulties or concerns such as housing problems, financial difficulties or legal issues can contribute to, and be a result of, poor mental health. Disability advice and/or information helplines such as DIAL UK, the Citizens Advice Bureaux, or more specialist housing, benefits or legal advice centres can give you practical help and advice. Their services are usually free. (See Helpful organisations.)

You can also get general information about disability and mental health issues from the internet. The quality of the information on the internet varies, but some useful sites are listed under Useful websites.

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How to access services

Access to health and social services
Even if you have already had your needs relating to your physical disability assessed, you will usually need a separate referral to a CMHT. Ask your GP or local social services for a referral. You may need to persevere. Use the support of an advocacy service if necessary.

When you are referred to a CMHT, you will usually be offered an assessment of your mental health support needs. You do not have to pay for this. You should be fully involved in the assessment and given the chance to say what you think you need. If you can, at the assessment use actual examples of how and when you need mental health support. You can ask a friend, relative or advocate to support you. If you need an interpreter or any other help with communication, you have the right to have this provided.

A social worker or someone from the CMHT, such as a community psychiatric nurse, will do the assessment. Other professionals may also be present. You have a right to see and comment on the notes of the assessment and you can ask for anything to be changed if you think it is not a correct record. If you are not happy with the assessment, you can complain (see below).

If the assessment concludes that you qualify for mental health support services, a care plan will be drawn up that sets out what services you should receive.

Ask about help with transport if necessary. Check the accessibility of the proposed services with regards to your disability and, if you need it, find out about the provision of personal assistance. If you are eligible, you could ask for Direct Payments (see below). This means you will be given the money to arrange support for yourself.

You must be given a copy of your care plan, and told who is responsible for arranging services for you. If you are using mental health services, you should be given a keyworker (who might be called a care coordinator), who should arrange regular contact with you.

The services identified in your care plan must be provided within a reasonable time, although temporary arrangements may be made at first. If you do not get the services listed in your care plan, you can complain (see below).

Although some services, like health services, are provided free of charge, you may be asked to pay for other services such as home care or day care. Charges usually depend on your income, savings and the cost of the care. However, income from employment is not counted in the means test. You will also need to find out if you will be charged for transport if you need this.

Your care plan should be reviewed regularly, usually every six months. If your circumstances change, you can ask for it to be reviewed at any time. If the health or local authority wants to take away or reduce the services you get, it must reassess you first.

Access to other services
Finding a private therapist or practitioner
If you cannot get the support you need through your GP or NHS mental health services, you may wish to look for a private therapist or practitioner. Finding a private complementary or alternative therapist can be difficult. Ask people you trust if they could recommend anyone to you. You can also ask at a local natural health centre about qualified practitioners, or you could contact an accredited membership organisation for details about the training and qualifications of their members in your area. See Useful organisations for more information. Even if someone is recommended, you will need to satisfy yourself that they are suitable for you.

Whatever complementary or alternative practitioner you consult, you are entitled to know about their training, experience, insurance cover and their confidentiality and complaints policies. Check whether there are any access issues for you as a disabled person and what reasonable adjustments (see below), such as home visiting, could be made.

Finding self-help or support groups
There are many places where you might be able to find self-help or support groups nationally or in your area. You could try:

• Dial UK
• MindinfoLine
• Age Concern or Care Direct
• a local disability or mental health information service
• a local Centre for Independent Living
• your GP surgery or local hospital
• NHS Direct
• Disability Wales
• the phone book, looking under key words such as counselling and advice, or at the front where self-help organisations are listed
• the internet.

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Using services

Independent living with Direct Payments
Independent living is not about living on your own and doing everything for yourself. It means having choice and control over all aspects of your life, including who supports you and how and when they do it. Direct payments are one way of becoming more independent. Under the Direct Payments scheme, you are given money to employ your own support workers.

To be eligible for a Direct Payment you must be:

• aged 16 or over
• not detained under Mental Health Act legislation
• assessed as needing a service or support from social services
• willing and able to manage a Direct Payment, with assistance if necessary.

For more information about Direct Payments and local organisations who could help you, contact the National Centre for Independent Living. They have a booklet about Direct Payments specifically for people with mental health support needs (see Helpful organisations).

Advance directives
Advance directives are written instructions about what you would like other people to do if, at some point in the future, you become unable or too unwell to make your own decisions. Your instructions need to be clear and you should set out the reasons for them. The document must cover the particular circumstances that arise, so you will need to anticipate anything that might happen. It is important to get the details right. You may want legal help or help from an advocacy service with this.

It is advisable to have your advance directive signed by someone who can say you are competent at the time you make it. Ask for a copy to be kept in your medical and nursing notes, or by your keyworker or other significant person, so that your wishes can be followed in a mental health emergency. It can be overridden by actions taken by police or medical staff under the Mental Health Act. Some local mental health groups produce a crisis card that gives a short description of what you want to happen in a mental health emergency, and who to contact for more details.

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What rights do you have?

Access to medical records
You have a legal right to see any health records produced after November 1991 and any social services files that exist about you. You may, however, be denied access to your records (or part of them) if a senior professional thinks the content may be damaging to your physical or mental health, or if it identifies a third party. You might have to pay a fee to see your notes, you will often have to have a health professional with you when you read them and you will not usually be able to take them away.

Community Care
Social services departments have a legal duty to assess the Community Care needs of disabled people and people with mental health support needs. You are entitled to information about services, to be fully involved in your assessment, and to have your assessed needs met. You should be offered Direct Payments if you are eligible. If you are receiving mental health services, you have the right to a Care Programme Approach. This means that you should have:

• all your needs assessed (health, social care, housing etc.)
• a written care plan which should be regularly reviewed
• a keyworker who should keep in close contact with you.
  NB: The Care Programme Approach is not yet fiully operating in Wales, but should be in place by December 2004.

Under Section 117 of the Mental Health Act, when you are discharged from long term detention in hospital (under Section 3 detention), you have the right to free after-care provision.

The Disability Discrimination Act 1995
The Disability Discrimination Act 1995 (DDA) makes it unlawful to discriminate against disabled people. Discrimination occurs:

• when a person is treated less favourably than someone else, for a reason related to his or her disability, without justification
• when reasonable adjustments are not made for a disabled person.

A person has a disability if they have a physical or mental impairment which has a substantial and long term adverse effect on his or her ability to carry out normal day to day activities. People may qualify under the DDA because of their mental health support needs as well as a physical or sensory impairment. People who qualify under the DDA are entitled to have reasonable adjustments made to overcome barriers to their access to services. From 2004, this will include access to the premises of services.

The Disability Discrimination Act Helpline and other disability advice and information providers (see Helpful organisations) can give you further information.

The Mental Health Act 1983
The Mental Health Act 1983 lays down rules for compulsory admission to hospital, but also gives detained patients a number of rights. If you are detained you have the right to:

• be given information about why you are being detained in hospital and what this means
• ask hospital managers to review your detention
• apply to a Mental Health Review Tribunal for a review of your detention, and have free legal representation for this
• get a medical opinion from an independent doctor to help your appeal at Tribunal.
  See Mind's Rights Guides for more details.

Social security benefits
For information about benefits for disabled people and help with filling out forms, telephone the Benefits Enquiry Line for disabled people, DIAL UK, or local disability information or advice centres, or your local Citizens' Advice Bureau (see Helpful organisations).

The NHS
The National Service Framework for Mental Health sets out the standards which mental health services should be aiming for. You can find out information about these standards, and how local services should be responding to your needs, from the Department of Health website: www.dh.gov.uk

Single print copies of both this publication can be ordered from the Health Literature Line 0800 555 777. Bulk orders can be obtained by writing to the Department of Health, PO Box 777, London SE1 6XH, fax: 01623 724 524

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If things go wrong

Complaints about health and social services
If you are not satisfied that you have been listened to, or with a service that has or has not been provided, you can make a complaint. Ask for a complaints leaflet which will tell you how to complain. If an organisation does not have a leaflet, ask who to complain to. You are entitled to whatever support or assistance you need in making a complaint.

If your complaint is on the grounds of disability, ring the Disability Discrimination Act Helpline or other local disability information and advice centres for advice (see Helpful organisations).

If you are not satisfied after your complaint has been heard, ask how to appeal. It may be useful for you to get help from an advocacy service, Community Legal Service or the Citizens Advice Bureau (see Helpful organisations). If you have gone through the full range of complaints and appeals procedures and you are still not happy, you could complain to the Ombudsman, or to your local Councillor or Member of Parliament (MP).

Sometimes it is possible to take legal action. The Law Society and Community Legal Service can give you names of local solicitors who specialise in mental health law, or find out where your nearest Law Centre is by ringing the Law Centres Federation. You could also ring Mind's Legal Advice Line (see Helpful organisations).

Complaints about private therapists or practitioners
Private practitioners often do not have a formal complaints system. There are two routes if you do wish to complain:

• If they work for an organisation, complain to the organisation itself.
• If they are registered with a professional body, contact them to lodge an official complaint.

If the therapist or practitioner works individually and is not a member of a professional organisation, there are few options for redress. If you have been assaulted, the police may take a criminal action. If you want to claim for damages, you could contact a solicitor about taking out a civil action. A national group that represents people who have been abused by a therapist (including NHS and social services staff) is the Prevention of Professional Abuse Network (POPAN) (see Helpful organisations).

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Helpful organisations

Age Concern
Tel: 0800 009966

Age Concern Cymru
Tel: 029 2037 1566
www.ageconcern.org.uk

The Aromatherapy Organisations Council
PO Box 19834, London SE25 6WF
Tel: 0870 774 3477
www.aocuk.net

Benefits Enquiry Line for disabled people
Tel: 0800 882 200, Textphone: 0800 243 355
www.direct.gov.uk/DisabledPeople/FinancialSupport

The British Acupuncture Council
63 Jeddo Road, London W12 9HQ
Tel: 020 8735 0400
www.acupuncture.org.uk

The British Association for Counselling
1 Regent Place, Rugby, Warwickshire CV21 2PJ
Tel: 01788 550 899
www.bac.co.uk

The British Complementary Medicine Association
PO Box 5122, Bournemouth, BH8 0WG
Tel: 0845 345 5977
www.bcma.co.uk

The British Hypnotherapy Association
67 Upper Berkeley Street, London W1H 7QX.
Tel: 020 7723 4443
www.british-hypnotherapy-association.org

Care Direct 
Tel: 0800 444 000
Caredirect a telephone helpline service to give older and more vulnerable people better access to agencies and services that can help them. By 2004 it will cover the whole country.

Citizens' Advice Bureaux
Look in your local phone book for your local branch or ring National Association of Citizens' Advice Bureaux.
Tel: 020 7833 2181,
www.adviceguide.org.uk

Community Legal Service
Tel: 0845 608 1122
www.clsdirect.org.uk

Dial UK
Tel: 01302 310 123
www.dialuk.info
Can provide information on local disability advice and information services.

Disability Discrimination Act Helpline (Disability Rights Commission)
Tel: 0845 762 2633, Textphone: 0845 762 2644
www.drc-gb.org/whatwedo/helpline.asp

Disability Wales - Anabledd Cymru
Tel: 029 2088 7325
www.dwac.demon.co.uk/

Law Centres Federation
Tel: 020 7387 8570
www.lawcentres.org.uk

Law Society
113 Chancery Lane, London WC2A 1PL
Tel: 020 7242 1222
www.lawsociety.org.uk

Local disability organisations
RADAR (020 7250 3222, www.radar.org.uk) and British Council of Disabled People (01332 295551, www.bcodp.org.uk)
Can give information about local disability organisations.

Local Government Ombudsman
21 Queen Anne's Gate, London SW1H 9BU
Tel: 020 7915 3210
www.lgo.org.uk

Mind's Legal Advice Line
open on Mondays, Wednesdays and Fridays from 2.00-4.30 pm, tel: 020 8519 2122

National Centre for Independent Living (NCIL)
250 Kennington Lane, London SE11 5RD
Tel: 020 7587 1663, Textphone: 020 7587 1177,
www.ncil.org.uk

NHS Direct
Tel: 0845 46 47
www.nhsdirect.nhs.uk
www.nhsdirect.wales.nhs.uk

Patients' Advice and Liaison Service (PALS)
Available in every NHS Trust, and replacing Community Health Councils in England. Ask at your local hospital for details.
In Wales, contact the local Community Health Council - Cynghorau Iechyd Cymunedol
www.wales.nhs.uk/chc/index.cfm

Prevention of Professional Abuse Network (POPAN)
1 Wyvil Court, Wyvil Road, London SW8 2TG
Tel: 0845 450 0300
www.popan.org.uk

The Shiatsu Society
Eastlands Court, St Peter's Road, Rugby, Warwickshire CV21 3QP
Tel: 0845 130 4560
www.shiatsu.org

Social services departments
Look in your local phone book under the name of your local council.

The Society of Homeopaths
11 Brookfield, Duncan Close, Moulton Park, Northampton NN3 6WL
Tel: 0845 450 6611, Fax: 0845 450 6622
www.homeopathy-soh.com

UK Advocacy Network (UKAN)
14-18 West Bar Green, Sheffield S1 2DA
Tel: 0114 272 8171
www.thepatientsforum.org.uk/ukadvocacynetwork.asp

The UK Council for Psychotherapy
167-169 Great Portland Street, London, W1W 5PF
Tel: 020 7436 3002
www.psychotherapy.org.uk

UKPPG
National Patient Medication telephone helpline
Tel: 020 7919 2999
www.ukppg.org.uk

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Useful websites

The Mental Health Foundation: www.mentalhealth.org.uk
Mental health, psychology and psychiatry: www.psychminded.co.uk
American mental health information: www.mentalhelp.net
Canadian mental health information: www.mentalhealth.com

Further reading

Healing Minds, Jan Wallcraft, available from Mind bookshop.
Something Inside So Strong, ed. Jim Read, available from Mental Health Foundation Publications. Tel: 020 7802 0300
Direct Payments for Mental Health Service Users/Survivors. Available from National Centre for Independent Living (NCIL). Tel: 020 7587 1663.

This booklet was written by Pauline Heslop and Vivien Lindow
ISBN 1-903567-35-1
© Mind 2003
No reproduction without permission