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ANNUAL REPORT  2000 - 2001 

PATIENT FORUM’S AIMS

               
The Patients Forum is a voluntary organisation
dedicated to:


 •    Providing a forum for national and regional
      organisations representing the interests of people
      who use health services to share experiences,
      information and ideas, to strengthen their work
      and to participate in informing and influencing
      decision makers 

       
 •     Improving arrangements for communication,
       timely consultation and liaison between the
       health consumer network and government
       and relevant statutory and professional
       organisations   
              

We do this by:


 •    Meeting regularly to debate subjects of  interest,
       including briefing sessions on NHS policies

 •    Liaising with key players in the health field,  including
      the Department of Health and professional bodies

 •    Producing policy briefings and updates on issues that
       impact on patients and carers

 •  Exchanging information at meetings and via the
    website and email between member organisations
    about  issues, campaigns and events

 

MAIN ACHIEVEMENTS 2001-2001


•     Held the Patients Forum 2001 Conference - “Shaping
      the Agenda - the UK Patients Movement”

•      Initiated the Patient and Public Involvement Project
       (with the LMCA and College of Health)

•      Organised seminars on the NHS Plan and Advocacy/PALS

•       Co-ordinated work with members on the NHS Plan and
         Health and Social Care Bill meetings

•       Met with government officials and Ministers to iscuss issues relating to
         the NHS Plan and the proposed  national patients’ body for England

•       Facilitated representation by member organisations on committees and
        working groups set up by the NHS, professional bodies and other
        health-related organisations

•       Held six bi-monthly meetings on topical issues

•       Presented the patients perspective at  the Department of Health
        “Patient and Public Involvement in the NHS”  National Conference,
        January 2001

•      Launched website at  NHS Confederation Conference in Manchester July
       2001

___________________________________________________ 

Chair's report

This has been a year of challenge and development for the Patients Forum. Fittingly, we spent some time at the outset of 2000/01 considering the outcome of a survey of member views about the direction and role of the Patients Forum. Feedback from members highlighted the value of the core work of the Patients Forum in relation to networking and information exchange – and in relation to supporting our member organisations in their efforts to influence health policy. Over the last year there have been a number of significant health policy developments and demands on patient and consumer health organisations in this area have never been greater. 

NHS Health and Social Care Bill  

During the last year, the Patients Forum undertook a number of specific measures that that we hope have helped our members to cope with demands on their time and to make the best use of resources. The Patients Forum co-ordinated work on the NHS Health and Social Care Bill by organising meetings with Department of Health bill team but also by supporting members develop and exchange briefings - and by making information about the different concerns and priorities of Patients Forum members more widely known. We also had a very productive meeting with the then Under Secretary of State for Health, Gisela Stuart, where we were able to put forward key areas of concern about the Health and Social Care Bill as well as a number of other issues of concern, including the new Patient's Guide to the NHS. 

Seminar  

At our regular Patients Forum meetings during the year we dealt with important issues like the implications of developments in genetics, the NHS Plan and the use of electronic patient information. However, we also organised a number of important events to tackle pressing issues. Our seminar on Patient Advocacy and Liaison (Pals) and citizen advocacy is an excellent example of how the Patients Forum can facilitate debate and discussion – and share learning about important policy measures. Feedback from this event was extremely positive and we aim to hold a number of seminars in the coming year as policy issues arise. Feedback from this work also highlighted the view from our member organisations that the Patients Forum should develop this kind of work further in areas where member organisations have common concerns. For example, by helping to co-ordinate responses to new developments on behalf of the membership and helping to ensure that input from patient and health consumer groups is properly considered and taken on board by policy makers.   

Patients Forum website  

Two key Patients Forum achievements in 2000/01 were the establishment of the Patients Forum website (www.patientsforum.co.uk) and the Patients Forum conference on patient and public involvement. The website is very much in line with our commitment to improve networking and exchange between our own members but also between members and external players like the Department of Health, MPs, and the media. Profiles and contact details of member organisations are available on the website and members can also post briefings and responses to consultations. We made extensive use of the website to support consultation on research into the need for a new national patient body that was undertaken as part of a feasibility study funded by the Department of Health. We’ll be building on the website resource in the coming year - and will be supplementing it with a Patients Forum newsletter.

 Annual conference  

The Patients Forum conference was a key achievement of the year – over 200 people attended representing a wide range of patient and health organisations with a genuine interest in strengthening the arrangements for patient and public involvement. Feedback from those who attended on the day was excellent and the conference underlined the important role that the Patients Forum has to play in moving forward important policy work. It is our intention to hold another conference in 2001/02.  

Patient and public involvement  

The whole question of patient and public involvement may be the most important issue facing patient and health consumer groups in the coming year. The Patients Forum provided  input to deliberations about new arrangements for involvement set out in Chapter 10 of the NHS Plan - and it is represented on the Steering Group and Advisory Panel set up to take forward work looking at the need for a national patient body. The clause to abolish CHCs and the National Association of Community Health Councils for England and Wales (ACHCEW) has been dropped from the Health and Social Care Act, but there are still many questions about the plans for involvement o0f patients at the local and national level that need to be addressed.  A further health bill and new central body are promised. 

Patients Forum - the company  

The Patients Forum has achieved a great deal over the last year - and the next logical step is to create a more formal organisation. During this year we have registered the Patients Forum as a limited company, The Patients Forum.  Looking to the future, it is inevitable that the work on the arrangements for involvement at the local and national level will have some impact on the future of the Patients Forum and we will continue to work to ensure that the needs of our members are well represented.  

Thanks 

A number of thanks are due. Francine Bates, vice-chair of the Patients Forum, has been an important and much appreciated source of advice and guidance during the year. The members of the Steering Group have been enormously supportive and have played a crucial role in helping to set a clear strategic direction for the Patients Forum. On behalf of all of the members of the Patients Forum I would like to give special thank you to Barbara Meredith who is stepping down from the Steering Group this year. The Patients Forum is where it is today largely due to Barbara's commitment and belief in the need for a network of this kind. 

I would like to thank Diana Basterfield, who was confirmed as the Patients Forum Project Manager in November. Diana has been responsible for the smooth running of the Patients Forum - but also for making most of the achievements outlined above happen . 

And finally thanks to the members of the Patients Forum for making it the dynamic and effective network that it is. 

 

Clara Mackay
Chair

 

Patients Forum 2001 conference

 

 “Shaping the Agenda - the UK Patients’ Movement” 

Our first annual conference was held in Conway Hall on 15th February 2001.  200 people attended. 

Quotes from key speakers:

 

Nigel Crisp, Permanent Secretary, Department of Health and Chief Executive, NHS:  “Having a patient focus means more teamwork between patients and professionals; better management of a patient’s care pathway;  picking up inequalities;  patient-friendly relationships and environments and improved patient representation.”

 

Dr. Fons Dekkers, General Director, Dutch Patient/Consumers Federation.   “In the Netherlands a “Patient Policy” has been developing since the early 1980s based on providing the individual consumer with a legal framework and tools to make the right choices at the right moment with or without choosing to rely completely on the professionals involved.” 

 

Dr.Judith Allsopp, De Montfort University.  “The research shows that patient and carer groups have built up a network of relationships with their members, alliances with other groups in the sector and with health professionals and business. Increasingly, their knowledge and expertise is being drawn upon by government although there are some barriers to participation such as uncertain funding, a lack of managerial capacity and the opportunity costs of participation.”Dr.Judith Allsopp, De Montfort University.  “The research shows that patient and carer groups have built up a network of relationships with their members, alliances with other groups in the sector and with health professionals and business. Increasingly, their knowledge and expertise is being drawn upon by government although there are some barriers to participation such as uncertain funding, a lack of managerial capacity and the opportunity costs of participation.”

 

Graham Lister, Chair, College of Health:   “While I recognize that we cannot simply  transplant methods of involving public and patients from other countries there are valuable lessons to be learnt as we develop a new approach to  public and patient engagement with the NHS.”

 

 

NHS CONFEDERATION CONFERENCE AND EXHIBITION AND LAUNCH OF WEBSITE

The Patients Forum launched its website www.thepatientsforum.org.uk, at a special joint event at the NHS Confederation Annual Conference and Exhibition in Manchester on 5th July. The website has been developed to inform the media and politicians about the work of the Patients Forum as well as to keep our membership up-to date with all the latest developments.  The website provides: 

  • a shop window for all our members with a Members’ Directory

  • the report of our first annual conference held this February “Shaping the Agenda – the UK Patients Movement

  • full minutes of our bi-monthly meetings, of seminars held on the NHS Plan, of all the meetings of the Patient and Public Involvement Project as well as the consultation document arising from the research study into a new national patients body

  • opportunities for member organisations to highlight work they are doing

Speaking at the event, Diana Basterfield, the Patient Forum’s Project Manager said: “We're delighted to have the opportunity to launch this important initiative at the NHS Confederation Conference and very pleased to be working with the NHS Confederation.  We share many objectives and we work in similar ways.  Just as you connect the family of the NHS, the Patients Forum acts as a hub for a voluntary sector network of national and regional organisations concerned with the healthcare interests of patients, their families and carers.

Members and other organisations like the Confederation and the NHS are very welcome to visit our website to make connections with patient organisations and to publish details of meetings and events in their own organisations that may be of interest to our members.

The Government, through the NHS Plan, wants to ensure that the voice of the patient is heard at all levels of the NHS.  Our two organisations are an ideal complement.  Linking up our networks, the Patients Forum and the Confederation can be a perfect partnership to achieve this objective.”

______________________________________________________________

 SUBSCRIBERS 

Audit Commission

British Dental Association

British Medical Association

Bromley Health

Doctor Patient Partnership

General Medical Council

Health Promotion Wales

King’s Fund

National Council for Hospice and Specialist Palliative Care Services

NHS Confederation

NHS Executive

NHS Information Authority

North Bristol NHS Trust

Office for Public Management

Royal College of Nursing

Royal College of Physicians

Royal Pharmaceutical Society

UKCC for Nursing, Midwifery and Health Visiting

 ___________________________________________________________ 

Steering Group

 

 Clara Mackay
 Consumers’ Association  (Chair)

 

Francine Bates
Contact a Family (Vice-Chair)

 

Dr. Eva Jacobs
Consumer Member on the UKCC
(Honorary Treasurer)

 

Geraldine Amos

Home from Hospital Care

 

Gerda Loosemore-Reppen
Royal National Institute for Deaf People

 

Brian McGinnis

MENCAP

 

Barbara Meredith

Age Concern London

 

Imelda Redmond

Carers National Association

 

John Tait

Relatives and Residents Association

 

Judy Wilson

Long-Term Medical Conditions Alliance LMCA)

 

STAFF 

Diana Basterfield  - Project Manager

 

 

 

 

 

  Last updated 13/10/2006   © The Patients Forum 2006