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Finding a self-help group or patient organisation
Last updated July 2008
Finding a self-help group or patient organisation
There are many self-help groups and patient organisations, specialising in a wide range of medical conditions. Some are run entirely by patients or lay people, others may have considerable input from health professionals. Similarly, there are large variations in the resources available to such charities and who sponsors their work.
For information on condition-specific self-help and patient groups you can search the following websites. (Please note that the BMA cannot accept responsibility for the accuracy or quality of the information provided on these sites.)
CancerBACKUP is an organisation that provides information and support to cancer sufferers and their families throughout the UK. It has a database of local cancer support groups, which can be accessed online.
Contact a Family is a UK charity for the families of disabled children. It is an important source of patient information on rare medical disorders and can assist adults as well as children.
Contact a Family is in touch with over 300 national groups dealing with specific conditions, in addition to over 1,000 local parents groups throughout the UK. Further information can be found on their Index of Specific Conditions and Rare Disorders. Under each entry for a particular medical condition, such as acquired aplastic anaemia or motor neurone disease, an explanation of the condition is provided, together with information about inheritance patterns and contact details for the relevant support groups.
Contact a Family can also help with information on conditions not listed on their website. For example, it may be able to link families where there is no existing support organisation. For further advice, the public can ring the Contact a Family Helpline on (0808) 808 3555. The Helpline is a freephone service for parents, families and professionals (open between 10am and 4pm, Monday-Friday, and 5.30pm-7.30pm, Monday).
Database of Individual Patient Experiences (DIPEx)
The DIPEx website is designed for patients who have to undergo treatment and who would like to find out from other patients what the treatment was like - or what it is like to live with a particular condition. The public can watch, listen to, or read about other patients' experiences on the DIPEx website - and find reliable information on treatment choices and sources of support.
DIPEx is also aimed at carers, the families of patients and healthcare professionals.
Currently, DIPEx has 'patient experience' databases on:
- Cancer and screening: breast cancer and breast screening; cervical cancer and cervical screening; bowel cancer; bowel screening; lung cancer; lymphoma; ovarian cancer; prostate cancer; PSA testing; teenage cancer; testicular cancer
- Chronic health issues: chronic pain; rheumatoid arthritis; HIV; diabetes type 2
- Young people's experiences: Sexual health of young people aged 18-25; teenage cancer; diabetes type 1 in young people; young people with long term health conditions; young people with epilepsy
- Women's health, pregnancy and screening: pregnancy; antenatal screening; ending a pregnancy for fetal abnormality; screening for sickle cell, beta thalassaemia and other variants; breastfeeding; making decisions about birth after a caesarian
- Heart disease: parents of children with congenital heart disease, heart attack, heart failure; high blood pressure
- Immunisation
- Intensive care: patients' experiences; experiences of family & friends
- Living with dying
- Neurological: epilepsy; carers of people with dementia; motor neurone disease; stroke
- Mental health: depression, mental health carers; mental health service users
The Long-Term Conditions Alliance (LTCA) directory of organisations
The LTCA is a UK charity campaigning on areas related to long-term conditions. It has over 100 member organisations, from the largest health charities down to small unfunded support groups staffed by volunteers. The LTCA directory of member organisations aims to help people with long-term conditions to find the support they need.
The NHS EQUIP gateway (Electronic Quality Information for Patients) provides access to the contact details of more than 3,500 condition-specific support groups in the UK, and West Midlands area in particular. The Support Group Search function on its website allows you to search by location and by health topic.
The Expert Patients Programme (EPP), which used to be an NHS-led programme, but which is now run as a Community Interest Company, is designed to provide opportunities for people living with long-term health conditions to develop new skills in managing their own conditions. This is done through local EPP courses, which aim to maintain the health, and improve the quality of life, of those taking part in the programme.
You can find out more about the Expert Patients Programme and local EPP courses running in England and Wales on the EPP website (under 'Find Courses'). There are also courses available for carers and parents, information about which can also be accessed from this website.
There is also a specific website for the EPP in Wales.
Patient UK is a directory of UK health, disease and health-related websites, which is edited by two GPs. Patient UK's list of support groups contains useful information on over 1,800 patient and self-help organisations.
Please note: this website now contains advertising for healthcare products.
The website www.specialistinfo.com contains a list of Charity Websites, providing links to hundreds of condition-specific support group websites.
National and international patient organisations
There are several organisations in the UK which represent patients’ interests to government and policy-makers. The main organisations are:
The Patients Association
PO Box 935
Harrow
Middlesex HA1 3YJ
Tel: 020 8423 9111
Fax : 020 8423 9119
Helpline: 0845 608 4455
Email: helpline@patients-association.com
Website: http://www.patients-association.org.uk/
Scotland Patients Association
PO BOX 2817
Glasgow G61 9AY
Tel: (0141) 942 0376
Email: contact@scottishpatients.com
Website: http://www.scotlandpatients.com/Default.aspx
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The Patients Forum
62 Beechwood Road
London E8 3DY
Tel: 020 7249 4493
Email: info@thepatientsforum.org.uk
Website: http://www.thepatientsforum.org.uk/
The National Association for Patient Participation (NAPP) is the umbrella organisation for Patient Participation Groups (PPGs) within primary care; it has over 300 members. NAPP provides advice on how to get local PPGs started, as well as guidance on how to make groups more effective.
There are also several international patient organisations that exist to promote patients' interests:
European Patients' Forum
Rue Belliard 65
1040 Brussels
Belgium
Tel: +32 (0)2 280 23 34
Fax: +32 (0)2 231 14 47
Website: http://www.eu-patient.eu/
The European Patients' Forum was founded in 2003. It represents Europe-wide patients' organisations and is consulted by the European Commission and other EU institutions regarding issues of concern to patients across Europe.
International Alliance of Patients' Organizations (IAPO)
703 The Chandlery
50 Westminster Bridge Road
London SE1 7QY
Tel: 020 7721 7508
Fax: 020 7721 7596
Email: info@patientsorganizations.org
Website: http://www.patientsorganizations.org/index.pl
IAPO is a global umbrella body of national patient organisations.