Minutes of the Patients Forum Annual General Meeting
held on 5^th September 2002 at Friends House, Euston Road, London NW1

Present: Clara Mackay – Chair (Breast Cancer Care); Jonathan Ellis (Help the Aged); Sheila Dane (The Stroke Association); Nikki Joule (The Neurological Alliance); Sharon Leaver (Action on Elder Abuse); Nicky Willmott (Age concern England); Geraldine Amos (Home from Hospital Care); Danielle Swain (Picker Institute Europe); Peter Pinto de Sa (General Medical Council); Wendy Garlick (Consumers’ Association); David Pickersgill (BMA); Barbara Brewster (Sicke Cell Society); Marianne Rigge (College of Health); Mike Took (Rethink); Brian McGinnis (MENCAP); Judy Walker (Help for Health Trust); Alison Soliman (Dementia Relief Trust); Karen Thomson (Diabetes UK); Nicky Vinton (National Cancer Alliance); Peter Walsh (ACHCEW); Michael Rich )Action on Pre-Eclampsia

In atendance: Diana Basterfield (Patients Forum)

Apologies: Sally Carr (Consumers Advocacy and Training - CAIT); Frances Blunden (Consumers’ Association); Hew Helps (Chiropractic Association); Allison Morris (Motor Neurone Disease Association); David Pink (LMCA); Ruth Taylor (Haomophilia Society); Sally Penrose (Homeopathic Association); Francine Bates (Contact a Family); Imelda Redmond (Carers UK); Allison Turner (Maternity Alliance); Susan Savage (Nursing & Midwifery Council); Anna Cooke (King’s Fund); Eileen Neilson (Royal Pharmaceutical Society GB); Judy Wilson (National electronic Library for Health)

Minutes of the last Annual General Meeting

The Minutes of the AGM held in September 2001 were agreed.

Matters arising

None

Presentation of the Annual Report

Clara Mackay presented the Annual Report.

Presentation of the Accounts

Karen Thomson presented the accounts. They were agreed.

Election of Officers

Chair: Jonathan Ellis (Help the Aged)

Joint Vice Chairs Clara Mackay (Breast Cancer Care) and
Karen Thomson (Diabetes UK)

Geraldine Amos (Home from Hospital Care)

Gerda Loosemore-Reppen (Royal National Institute for Deaf People - RNID)

Elizabeth Manero (London Health Link)

Brian McGinnis (MENCAP)

Imelda Redmond (Carers UK)

Mike Rich (Action on Pre-Eclampsia)

Marianne Rigge (College of Health)

Saranjit Sihota (National Consumer Council)

1 vacancy

Guest Speaker: Paul Streets, Chair, Transition Advisory Board – TAB (Chief Executive, Diabetes UK)

Slides of presentation:

The NHS Plan:

The TAB (Transitional Advisory Board) advising on the delivery of Patient and Public Involvement

Presentation by Paul Streets at the Patients Forum AGM held on 5^th September 2002

The TAB

• Our role

• Acronyms and more acronyms!

• Preliminary conclusions

• Current issues and questions

The TAB – who & what

• Membership

• Working methods

• The new Commission

How it might look to a patient…

I have a problem?

– PAL(internal redress)

– or ICAS (independent – via Commission)

– Patient forum > to Trust Board > OSC

I want to get involved?

– PF (locally)

– Commission (nationally)

and to a patient organisation?

Local member/group/issue

• Raise issue through patient forum

• Raise issue via OSC (political links)

Nationally

• Influence the Commission

• BUT not THE voice of patient

Use current methods!!

Preliminary conclusions of the TAB

• How the Commission for Patient and Public Involvement will relate to patients forums

• How patients forums will work together at local level

• How staff will support for forums

• Independent complaints advocacy

The Commission for Patient and Public Involvement in Health

Recommendation 1

Arrangements at regional level to bring together members of patients forums, voluntary organisations and others involved in patient and public involvement in order to:

· Share experiences and good practice

· Advise CPPIH,

· Ensure involvement in public health strategies, managed clinical networks
and specialised commissioning.

The Commission for Patient and Public Involvement in Health

An intermediate staffing level, linking those staff working centrally and those with PCT forums.

Selection and appointment of members and performance management of patients’ forums will need to be carried out by staff who are accountable to CPPIH centrally.

Patient Forums

• The name should perhaps be changed.

• PF’s should elect a PCT Board member with observer status

Forums working together

PCT forums need decide the best ways of working together within an OSC or strategic health authority area,

to deliver their functions in consultation with all local stakeholders

Staff support

Staff may need to work with a number of PCT forums to enable specialisation and co-ordination across forums.

The level at which the office is based will depend on local circumstances.

PCT patients forums will need, in conjunction with CPPIH nationally and regionally, to develop explicit arrangements with each PCT forums for their work. These will be monitored by the Commission centrally to ensure accountability to each forum is delivered.

Independent Complaints Advocacy (ICAS)

Consider changing the name?

ICAS needs to be clearly seen as separate from the other activities of the PCT patients forums.

ICAS must be provided to the agreed standards and resources needed to do this are protected.

The standards provided by the Community Legal Service should be used as the framework for ICAS.

Independent Complaints Advocacy (ICAS)

The decision about how ICAS is organised in each area should be made by PCT forums in consultation with other local stakeholders to meet the needs of that locality.

Questions.

The Commission operating at National Level:

• How should the Commission liaise with other national bodies? Which bodies?

• How might it involve stakeholders, in particular hard to reach groups?

Questions.

Finding the right commissioners.

• Should some be elected?

• Should they all be lay people? Or should it be open to all stakeholders?

• Can you suggest models for selecting Commissioners that will meet the requirements for skills and inclusion?

Questions.

How should the first members of forums be recruited?

• Who should be involved?

• How can people who are often excluded become involved from the start?

Questions.

How should the first members of forums be recruited?

• Who should be involved?

• How can people who are often excluded become involved from the start?

Questions for DH?

• Will our advice become policy?

• Continuity vs renewal

• Consistency

– PF’s, ICAS, PAL’s are emerging…

• Commission

– Expectations vs capacity

• Money!