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Present: Clara Mackay – Chair (Consumers’ Association); Eileen Neilson (Royal Pharmaceutical Society); Roger Steel (Consumers in NHS Research Support Unit); Geraldine Amos (Home from Hospital Care);

Elizabeth Manero (London Health Link); James Appleyard (BMA); Bill Kent (ReMEmber); Ruth Taylor (Haemophilia Society); Geoff Braterman (British Homeopathic Association); Susan Savage (UKCC);

Alison Soliman (Dementia Relief Trust); Arnold Simanowitz (AVMA); Jo Hampton (GMC); Hew Helps (Chiropractic Patients Association); Imelda Redmond (Carers UK); Gerry Mahaffey (Princess Royal Trust for Carers); Peter Walsh (Association of CHCs in England and Wales); Judy Wilson (Independent Consultant); MikeTook (National Schizophrenia Fellowship); Rachael Kenny (Action on Elder Abuse); Sheila Dane (The Stroke Association); Jonathan Ellis (Help the Aged); Alistair Beattie (Age Concern London); Marianne Rigge (College of Health); Gerda Loosemore-Reppen (RNID); Brian McGinnis (MENCAP). In attendance: Diana Basterfield (Patients Forum)

Apologies: Francine Bates (Contact a Family); Pam Prentice (Doctor Patient Partnership); Roger Battye (NAPP); Sally Carr (Consumers Advice Information and Training); Alyson Turner (Maternity Alliance); Barbara Meredith (Age Concern London); Karen Thomson (Diabetes UK); Saranjit Sihota (National Consumer Council)

The minutes were agreed subject to a correction to Consumers in NHS Research Support Unit.

Clara reported that she would be leaving Consumers’ Association at the end of February. She was going to Breast Cancer Care. She reported that she was happy to continue as Chair until the AGM in September providing the members of the Patients Forum were agreeable to this arrangement.  Members agreed.

It was reported that Christine Hogg was carrying out research on national service frameworks. A first draft had already gone out to those who had contributed to the research. The report would be tabled at the Patients Forum annual conference on 18^th February.

Patients Forum projects: It was reported that the Management Committee had put forward the following ideas for the coming year:

(a) ways of improving the profile of member organisations with the media.

PF would host a seminar/lunch with a presentation from a media person, e.g. a health editor for a broadsheet newspaper.

(b) the parliamentary process and how to influence MPs.

PF would again host a seminar/lunch with a presentation from an MP.

(c) a research project. Members were asked for ideas. It was suggested that one of the larger member organisations may be able to lend someone to do this.

Patients Forum Annual Conference 2002: It was reported that arrangements were well underway and that over one hundred people had already registered.

Transitional Advisory Board: It was reported that the government had agreed to set up a Transitional Advisory Board to take forward the new structures. There would be fifteen members in all, five from the CHC network, five from patient/consumer organisations and five from the NHS health professions. A letter had been circulated asking people to put their names forward.

Rob Thompson had been asked to clarify several points:

Expenses – these would be paid, within reason

Time commitment – a reasonable commitment was expected for this medium/long-term process. There would also be some sub-committees and opportunities may develop for other organisations to become involved with these.

The aim was to have the Commission up and running by the end of 2002.

Peter Walsh from ACHCEW reported on some significant changes to the patient and public involvement aspects of the bill:

Patients Forum lay members would be given power to put matters of concern to local Overview and Scrutiny Committees (OSCs). This represented an improvement  on the current situation. The independence of Patient Forums had been a concern. Funding would now be channelled via the National Commission.

Some undertakings had been given by the Minister:

(a) local authority right of referral to the Secretary of State – this was being worked on.

(b) To seek to address the fragmentation of involvement - it was proposed that this be done by regulation

(c) To produce guidance for OSCs. Local authorities had been given the power (not the duty) to

Scrutinise local health.

A proposal to reform CHCs rather than abolish them had been defeated.

David Hinchcliffe had put forward a compromise amendment that Patient Councils be re-introduced and brought together with Patient Forums.

Areas still to be addressed:

The accountability of Patient Councils at local level

Patient Councils and Patient Forums would be co-ordinated by the National Commission.

Three areas of concern remained:

1. a safety net was required because local authorities had not been given the right of scrutiny

2. the tight wording of the legislation regarding Patient Forums and the National Commission

They would be ultra vires if they engaged in some of the activities undertaken by ACHCEW where the wording of the remit was very broad. The legislation needed to be amended to provide this

3. the robustness of requirements to consult e.g. on the commissioning of specialist services: how to consult people with very rare diseases, on reconfigurations and changes to services, closure of mental health units etc. The government had not produced a way forward on this.

Peter Walsh concluded that there was a lot that was good in the new system. "Hazel Blears is inches away from having a system that everyone will be reasonably happy with." He hoped this would happen. He was very concerned, however, that the Secretary of State would no longer be obliged to consult on changes to the NHS.

Gerda Loosemore-Reppen (RNID): It was reported that best practice standards for children would be launched in March. There would be extra money allocated for digital hearing. This would cover two-fifths of the country.

Marianne Rigge (College of Health): It was reported that Michael Young had died.

Alistair Beattie (Age Concern London): It was reported that they had had a very encouraging meeting with Hazel Blears regarding their report "A Helicopter would be nice - transport to health services for older Londoners." It was intended to put this to the Social Exclusion Unit.

Jonathan Ellis (Help the Aged): It was reported that SPAIN continued to development arguments about the need to invest in health and social care in the hope of influencing the Treasury as it developed its spending plans in the following couple of weeks. The National Older People’ Reference Group – part of the Older People’s Task Force - continued to support this on intermediate care. They would be launching a major three to five year campaign on ageism in all sectors of public policy.

Sheila Dane (Stroke Association): It was reported that stroke standards would be included in the NSF for Older People. There was concern about the lack of priority given to stroke within the NHS.

Rachael Kenny (Action on Elder Abuse): It was reported that there was a new Chief Executive – Gary Fitzgerald. Their focus was on domiciliary care standards – most abuse happened in the home or in homes.

They were organising a national conference on social policy.

Mike Took (National Schizophrenia Fellowship): It was reported that NSF would be changing its name in June. They were undertaking a rethink on severe mental illness.

Judy Wilson (Independent Consultant): It was reported that feedback would be welcome in her Quality Taskforce role. There had been an article to this effect in the January Patients Forum newsletter. In her capacity as an Independent Consultant at the National electronic Library for Health, they were establishing a virtual branch library on patient and public involvement. She would be working on this until mid February.

Peter Walsh (ACHCEW): It was reported that they were working on patient’s rights issues relating to patients who were being sent abroad for treatment, e.g. around complaints, inspection of facilities.

Gerry Mahaffey (Princess Royal Trust for Carers): It was reported that PRT and carers’ centres were trying to deal with the movement of power from social to health care. They were concerned to know how carers’ centres would continue to obtain funding. They were also working with Crossroads, Carers UK and Contact a Family to look at consultation.

Imelda Redmond (Carers UK): It was reported that in the shift from social care to health care many of the lessons learned regarding carers during the last twenty years would be lost. They were looking to undertake a joint project with the BMA and the Doctor Patient Partnership on guidance relating to registering patients with GPs.

Jo Hampton (GMC): It was reported that the GMC would be having a new President, starting in February.

Alison Soliman (Dementia Relief Trust): It was reported that a new joint post was being set up with the Alzheimer’s Association. There was to be a special showing of the film about Iris Murdoch the following week.

Geoff Braterman (Homeopathic Association): It was reported that there was considerable concern that no more funding would be available for patients to continue their homeopathic treatments. It was also reported that patients contact their GPs for advice on complementary therapies yet few GPS have had training on this. The HA had produced an information pack for GPs. They hoped to be able to raise funds to make tapes to be circulated to patients.

Ruth Taylor (Haemophilia Society): It was reported that a National Service Specification would be launched on haemophilia and related conditions the following week. This had been designed by doctors, nurses, physiotherapists, social workers and haemophiliacs.

Bill Kent (ReMEmber): It was reported that they welcomed the report on M.E and wanted doctors and nurses to receive information on this in their training.

Elizabeth Manero (London Health Link): It was reported that they had representatives on all the local task forces. They had come up with a definition of the role of lay people on the local task forces. It was also reported that Elizabeth was a member of the National Maternity Care Working Party and they were working on commissioning a guide for PCTs on maternity services.

Geraldine Amos (Home from Hospital Care): It was reported that a lot of attention was currently being devoted to fund raising.

Roger Steel (Consumers in NHS Research Support Unit): It was reported that they were moving base – they would now be coming under the Leeds Trust. Their current work included: looking at training professionals and patients for involvement in research; increasing the profile of user controlled research; influencing the research ethics committee on who is a lay member; producing guidelines on pain consumers.

Eileen Neilson (Royal Pharmaceutical Society): It was reported that they were working on intermediate care.

Clara Mackay (Consumers’ Association): It was reported that a CA report had been issued on its enquiry into NICE. This had been fed into the Select Committee on Health Care. The previous day there had been a seminar on clinical negligence – the report would be available soon. It was also reported that a lot of effort had gone into lobbying for reforms to the pharmaceutical industry – how medicines were licensed and brought to market.

Arnold Simanowitz (AVMA): It was reported that they had developed procedures for compensation as a result of health negligence enquiries. The Chief Medical Officer was looking at this. They were also involved in the National Patient Safety body. They want to collect information on all adverse health incidents. It was also reported that they had recently appointed a Public Relations Officer so there would now be more contact with the media.

August 2002 would mark AVMA’s 20^th anniversary and there would be events to celebrate this.

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