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ANNUAL REPORT 1999 - 2000 continued.

Report from The Patients Forum Development Project

This Section 64 funded three-year project will run from the autumn of 1999 to autumn 2002

The aims of the Project are to:

  • firmly establish The Patients Forum as the main umbrella group of national and regional patients’ and carers’ interest organisations;
  • create a framework for more effective representation for patients’ and carers’ groups at national and regional NHS levels;
  • improve and build upon existing structures for better dialogue between patients, carers and health professionals;
  • facilitate and enable patients’ and carers’ groups to respond to the changes in the NHS.

The activities of the Project are to:

  • develop the national and regional membership of The Patients Forum;
  • engage in active liaison with a wide variety of patients’ groups and their alliances, professional bodies, DoH, NHSE and other relevant organisations;
  • promote debate among patients’ and carers’ groups on current developments in health policy, and improve the ability of those groups to participate in policy-making at national, regional and, where appropriate, local level;
  • collect and disseminate information and good practice on consumer involvement and partnership within the NHS and other health bodies at national and regional levels.

Establishing the office base

The Development Project staff both took up their appointments on 27th September 1999, by which time a small office had been found with the Carers London Advice and Representation Unit (part of Carers National Association) at 11 John Street, London WC1.

It was not long before the office was furnished and equipped with splendid, state of the art IT, and the beginnings of a Patients Forum library established.

Getting ‘the show on the road’

The first task was to establish contact and make visits to member and subscriber organisations, which was useful and enjoyable.

Ana, Project Assistant, established various databases to make communication easier, while I undertook a survey of members’ views of Patients Forum meetings and the policy and information briefings. There was a great deal of support for what The Patients Forum was doing, especially the involvement of members in influencing the content of the Health Bill as it progressed through Parliament. Through The Patients Forum, even small organisations without parliamentary or policy officers, felt empowered to contribute to this vital work. Many interesting suggestions were made as to future topics for meetings.

I also undertook a telephone survey of members’ views on the future development of The Patients Forum, and what would be useful to them. This was an invaluable exercise, and the results will be included in our future strategy document and work-plan, which is being developed and discussed now.

There was unanimous agreement that the Forum provides member and subscriber organisations with an excellent opportunity to network and share ideas, as well as campaign on issues of mutual interest. The policy and information briefings were considered invaluable and a means of keeping "up to speed" on the rapidly changing health and health related policy and guidance - part of the new NHS agenda.

Work undertaken

A directory of member organisations has now been produced and is ready for circulation. The information will be regularly updated and fed into a Patients Forum website, to be developed shortly.

The first Patients Forum newsletter was circulated in March, the aim of which is to bring news from the Forum and provide a format for sharing information between members, subscribers and others.

In the last six months, specific work has been undertaken by Patients Forum members on the Freedom of Information Bill and the Care Standards Bill as they progress through the Houses of Parliament. Interested members have met together to decide on areas of mutual interest and concern on which to jointly campaign.

The Consumers’ Association hosted a seminar for members on ‘The NHS and Regulation of Doctors’, where participants heard presentations on the Chief Medical Officer’s proposals outlined in ‘Protecting Patients, Supporting Doctors’, and on the GMC’s perspective on arrangements for the regulation of doctors.

As with other umbrella organisations, we receive many requests from various bodies to provide a Patients Forum representative to attend various advisory groups, committees, focus groups and consultations. Members volunteering to attend such meetings do so in their own capacity and feed back to The Patients Forum office.

One of the challenges of the Development Project is to "create a framework for more effective representation for patient and carer groups at national and regional level". In this connection, we have started to catalogue information about all such requests, including the outcomes. This information will give us a picture of how patient representation and consultation is taking place, which we can then convey to the Department of Health, making recommendations for improvements.

Finally, I would like to thank Ana and members of the Steering Group and Development Project Advisory Group (listed below), for their help and support during the first few months of the project. I would particularly like to thank Francine Bates, our Chair, for her encouragement, enthusiasm and the exciting vision she has for The Patients Forum.

Sue Towns
Project Development Officer

The Patients Forum Development Project Advisory Group

Francine Bates, Carers National Association (Chair)
Professor Judith Allsop, De Montfort University
Valerie Graham, Diverse Minds
Dr Eva Jacobs, Consumer Member on UKCC
Nella Marcus, Patient Representative
Barbara Meredith, Age Concern London
Camilla Parker, Policy Consultant
Liz Scott, NHS Executive
John Tait, Relatives & Residents Association

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  Last updated 23/10/2000   © The Patients Forum 2000