Get Involved Nationally

Contents

National Representative Groups
International Patient Groups
Organisation-Based Patient Groups

National Representative Groups

From June 2006 in England a new national Patient and Public Involvement Resource Centre will work with the NHS in leading and sustaining patient engagement in the planning, design and delivery of healthcare services. The Centre – run by a consortium made up of the University of Warwick, the Centre for Public Scrutiny and the Long Term Medical Conditions Alliance – will be performance managed by the NHS Institute for Innovation and Improvement.

Several organisations in the UK directly represent and/or support patients’ interests at national level. The main organisations are:

 

Patients Association

The Patients Association is a charity which offers patients an opportunity to share their experience of health services, and uses these to negotiate improvements to patient care. Its helpline also provides information on voluntary and NHS services, patient rights, and making complaints.

Patients Association
PO Box 935
Harrow
Middlesex HA1 3YJ
Helpline: 0845 6084455
 
Patients Forum
 
The Patients Forum is a network of national and regional organisations concerned with the healthcare interests of patients, families and carers. Through collaboration it strengthens the work of individual patient groups and participates in informing and influencing decision-makers.
 
Patients Forum
Riverbank House
1 Putney Bridge Approach
London SW6 3JD
Tel: 020 7736 7903
 
National Association for Patient Participation
 
The National Association for Patient Participation promotes the concept of self-help and aims to see a Patient Participation Group (PPG) in every GP practice. It maintains a volunteer network of officers who train practices in setting up local PPGs in their locality.
 
National Association for Patient Participation
FREEPOST (SEA 14774)
Aston
Sheffield
S26 2ZZ
Tel: 0114-287-4035 
 
Long Term Medical Conditions Alliance
 
The Long Term Medical Conditions Alliance is an umbrella organisation of national voluntary bodies working to meet the needs of people with long-term medical conditions. It helps those living with chronic long-term medical conditions to become more involved in decisions relating to their own care. It develops self-management programmes and influences policy at national level.
 
Long-term Medical Conditions Alliance
202 Hatton Square
16 Baldwins Gardens
London EC1N 7RJ
Tel: 020 7813 3637
 
Patient Information Advisory Group
 
The Patient Information Advisory Group provides advice to the Department of Health on issues of national significance involving the use of patient information. Its membership is drawn from patient groups, healthcare professionals, and regulatory bodies.
 
Patient Information Advisory Group
Department of Health
Second Floor, Princes Exchange
Princes Square
Leeds
LS1 4HY
Tel: 0113 280 6709/6481
Website: www.advisorybodies.doh.gov.uk/piag/Index.htm

INVOLVE

INVOLVE is a national advisory Group, funded by the National Institute for Health Research, which aims to promote and support active public involvement in NHS, public health and social care research.

INVOLVE
Wessex House
Upper Market Street
Eastleigh
Hampshire
SO50 9FD
Tel: 02380 651088
E-mail: admin@invo.org.uk
Website: www.invo.org.uk/

Patient Concern
 
Patient Concern  is an independent organisation committed to promoting choice and empowerment for all health service users.
 
Patient Concern
PO Box 23732
London
SW5 9FY
 
Developing Patient Partnerships
 
Developing Patient Partnerships is a UK charity whose health education campaigns and initiatives aim to encourage better communication between patients and health care professionals. It promotes the responsible use of NHS services and offers practical advice on self-medication.
 
Developing Patient Partnerships (DPP)
Tavistock House
Tavistock Square
London
WC1 9JP
Tel: 020 7383 6803/6144

NHS Centre for Involvement

The NHS Centre for Involvement will work with NHS staff and organisations to engage with patients and the public more effectively and implement change based on their information.
NHS Centre for Involvement
7 Vanguard Centre
Sir William Lyons Road
Coventry
CV4 7EZ
Tel: 024 7615 0266


International Patient Groups

There are also several international patient organisations that promote patients' interests:
 
European Patients Forum
 
The European Patients Forum represents Europe-wide patients’ organisations and is consulted by the European Commission and other EU institutions regarding issues of concern to patients.
 
European Patients Forum
145, Route de Thionville
L-2611 Luxembourg
Tel: +352-29 79 70
 
International Alliance of Patient Organisations
 
The International Alliance of Patient Organisations is a global umbrella body of national organisations representing patients across all disease areas and promoting patient-centred healthcare around the world.
 
International Alliance of Patient Organisations (IAPO)
703 The Chandlery
50 Westminster Bridge Road
London SE1 7QY
United Kingdom
Tel: +44 20 7721 7508

Organisation-Based Patient Groups


Many national healthcare organisations have patient groups that input into information resources and/or policy decisions. They ensure that the patient voice is represented on issues addressed by those organisations. Such groups are too numerous to list in full and it is always worth contacting an organisation to ask how the views of patients are represented within that body. 
 
RCGP Patient Partnership Group
 
The RCGP has an active Patient Partnership Group (PPG) through which it maintains links with patients and ensures that their concerns are taken into account in the development of College policy and general practice. The Group comprises GPs and lay members, advising the College on a range of medical issues and producing guidance.
 
RCGP Patient Partnership Group
14 Princes Gate
Hyde Park
London
SW7 1PU
Tel: 020 7581 3232
 
The College also runs a Patient Participation Award aimed at encouraging the development of patient participation in general practice within the UK. This award is to be used to benefit the patients of a practice or to further patient participation.
 
BMA Patient Liaison Group
 
The British Medical Association (BMA) represents doctors from all branches of medicine all over the UK. Set up in 2004 the BMA Patient Liaison Group (PLG) provides it with an informed patient view on healthcare, and has direct input into the Association's policy decisions.
 
GMC UK Public and Patient Reference Group
 
The General Medical Council (GMC) is the body that regulates doctors in the UK. Its UK Patient and Public Reference Group (PPRG) enables patients and consumers to contribute to the development of GMC policies and procedures. The Group discusses issues such as the public availability of information about doctors, and changes to the guidance on standards of conduct and behaviour.

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