Patient groups and patient information
April 2008
The library has a good general collection of reference directories on patient groups. The web links listed below contain useful patient information.
The BMA library is a private library and, unfortunately, detailed enquiries cannot be taken from non-members. However, the BMA's public affairs division does have a small public information unit. Where unable to advise directly, the public enquiries team will try to signpost enquirers appropriately. Please note that we are unable to provide personal medical advice.
tel: 020 7383 6410
email: info.public@bma.org.uk
The BMA public enquiries unit maintains a list of frequently asked questions.
Other providers of information and advice are listed at the end of this information sheet.
The BMA Patient Information Award is part of the BMA Medical Book Competition. It was established in 1997 to recognise quality in written patient information leaflets and small booklets. Its aims are to encourage the production and dissemination of accessible, well-designed and clinically balanced materials which will enhance patients' understanding of health issues and their ability to participate in decisions about their care. The main award is for printed leaflets and booklets in three categories: specific conditions and treatments; health care services, and healthy living. There is a separate award for web sites. Find more information, including appraisal criteria, resources and guidelines for producing patient information.
Patient information on the web should be used with care as not all sites are attributed and may provide unreliable or even dangerous information.
The BMA is a professional association and trade union and does not maintain the register of doctors. The General Medical Council maintains the Medical Register: you can check a doctor's registration at the General Medical Council site.
The BMA established a Patient Liaison Group (PLG) in summer 2004.
Print resources
National Council for Voluntary Organations
Voluntary agencies directory. NCVO, 2004
BMA location: Quick Ref 12 CHA
Web resources
Specialistinfo.com
You can search for medical specialists by region or by specialty or interests here. Registration is required but some areas are free for non-commercial users:
http://www.specialistinfo.com/
Dr Foster
Guide to specialists as well as other information useful to patients
http://www.drfoster.co.uk
BBC Health
http://news.bbc.co.uk/hi/english/health/default.stm
Department of Health
http://www.dh.gov.uk/NewsHome/fs/en
PatientUK
News resources, both UK and international, and a directory of UK health, disease and related websites, edited by two GPs.
http://www.patient.co.uk
NHS Direct Online
Launched in December 1999 by a team based at the Help for Health Trust. From April 1st 2001 NHS Direct Online came under the management of the NHS. It contains accurate, evaluated information and is linked to the 24-hour telephone helpline staffed by trained nurses.
http://www.nhsdirect.nhs.uk
NHS Direct Health Encyclopaedia provides information on illnesses, conditions, tests and treatments
http://www.nhsdirect.nhs.uk/alphaindex.asp
National Library for Health (NLH)
The National Library for Health (NLH) is a modern, integrated, hybrid service that aims to be 'the best, most trusted health related knowledge service in the world'. It comprises NHS funded services across the country and, a digital hub, plus commissioned information services and products.
http://www.library.nhs.uk/Default.aspx
Medlineplus
Information on conditions and other resources:
http://www.nlm.nih.gov/medlineplus/healthtopics.html
Healthfinder
Maintained by the US Department of Health and Human Services:
http://www.healthfinder.gov
UK resources for phone advice
NHS Direct
NHS 24 hour phone line offers advice if you are ill. Staffed by nurses who can offer advice on how to manage minor illnesses at home or when and how to get further help for more serious illness.
24 hour phone: 0845 4647
http://www.nhsdirect.nhs.uk.
http://www.nhsdirect.wales.nhs.uk/ (Separate site for Wales)
Patients' Association
PO Box 935
Harrow
Middlesex
HA1 3YJ
helpline: 0845 608 4455 (local rate) (Monday-Friday, 10.00-16.00, answerphone out of hours)
http://www.patients-association.com
Works for the involvement of patients in health decision making. It welcomes enquiries for advice or information on healthcare, medical conditions, and personal standards of health service:
Contact a Family
209-211 City Road
London
EC1V 1JN
tel: 020 7608 8700
helpline: 0808 808 3555.
freephone for parents and families (10am-4pm, Mon-Fri)
http://www.cafamily.org.uk
Accurate up to date information on health care with an emphasis on self-help.
Other organisations and libraries
Local public libraries
All should have resources on patient group and consumer health issues. Libraries in London which should have information are listed in the library factsheet Medical libraries in London.
Read the factsheet on Medical libraries in London.
Patient Advocacy Liaison Services (PALS) and Community Health Councils
Following a 2001 Department of Health discussion document 'Involving patients and the public in healthcare', these Community Health Councils were replaced in 2003 with Patient Advocacy and Liaison Services (PALS) and Patient Forums in every primary care trust, and an independent locally based Independent Complaints Advocacy Service (ICAS).
Read the Department of Health PALS page here.
Read the Department of Health's 'Involving patients and the public in healthcare' publication.
The West Midlands libraries Equip website has a useful list of links to individual trust PALS services
Patient Information Forum (PiF)
Mark Duman
Honorary President of PiF
Handel House
13 Park Road
Manchester
M8 4HT
tel: 07985 639887
email: president@pifonline.org.uk
http://www.pifonline.org.uk/
Group of people who work in healthcare and are involved in producing information for patients. Exists to promote the production of quality healthcare information for NHS patients by sharing ideas and experiences, and to facilitate change in information provision in health care.