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ANNUAL REPORT  2003 - 2004 - continued

Harry Cayton

National Director for Patients & the Public 

The Patients Forum and the patient organisations which make up its membership have never been so important. Patient and public involvement is beginning to be taken seriously by the NHS. With some stops and starts,  health policy is having an impact on how individuals are treated and on how communities are served. But real change cannot come about unless patients and the organisations which represent them demand that change happens. The arrival of patient and public involvement as national policy means that those of us who support it must do more not less.

Patient and public involvement is now a theme throughout health policy. Whether it is the duty to consult the public in the Health & Social Care Act, or the election of governors of Foundation Hospitals, the establishment of patient & public involvement forums in every NHS Trust, or the raised importance of the expert patient programme or of long term conditions or of choice for patients in the NHS, creating a patient centred service is the aim. 

Of course it doesn't always work and of course it hasn't gone far enough. The last report from CHI on patient & public involvement said that people were being consulted but little was changing as a result. The recently published patient survey results from the Healthcare Commission reported that good information remains a large deficit in many people's experience - a message already clearly recognised by the Department of Health which will be involving patient organisations this autumn in setting the information for choice strategy. 

There is so much to be gained by pushing through the changes we need. The policy commitment to self-care and to long-term conditions in the NHS Improvement Plan published in July is a great opportunity. We need active patients to demand locally that services change to meet their needs and preferences. Change has to be bottom up as well as top down. 

Perhaps the greatest change will come through the creation of the national electronic care record. The NHS information technology programme is the largest of it kind in the world. Eventually we will have direct access to our own record, we will be able to control who sees what and why, we will be able to book appointments electronically, get our test results instantly, re-order our prescriptions on line, get the information we need to make choices. The electronic care record will improve patient safety by reducing errors, help clinicians to make better decisions, increase choice and put patients in control. It's a massive task and through the Care Record Development Board and the national stakeholder network which are being established patients will have a direct involvement in its design and implementation. 

There is so much to be done still to make a patient centred service a reality. That's why the Patients Forum is more important than ever. 

Harry Cayton 

To know more about the Care Record Development Board go to www.npfit.nhs.uk/crdb/

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Chair’s Report 

If there is one guarantee in health policy, it is that there is plenty of work to be done.  It often feels like a full-time task just keeping up with what is going on, and the opportunities there might be to influence those processes, and this year has been no exception.  This is where the Patients Forum continues to offer a valuable service to our members, and to external stakeholder agencies, including Government, in providing a unique platform for genuine debate, honest exchange and sharing of information. 

Influencing policy and sharing information 

In reminding myself of the range of issues that we have debated, it strikes me that we have, once again, covered a wide range of developments and ideas that are of crucial importance to patients and the public.  In addition to our regular cycle of Patients Forum meetings, we have again co-ordinated a series of seminars throughout the year on subjects ranging from clinical negligence, to complaints, public involvement and ambulance services.  These seminars provide an important opportunity for an in-depth discussion and exchange of ideas.  

In addition, the Patients Forum has facilitated ad hoc dialogue on emerging policy issues with policy makers, such as the plans surrounding the introduction of ID cards and the possibility of using them to prove entitlement to NHS treatment, or in the type of information that patients will need to make informed choices about where and when they will receive their treatment.  We have also helped to identify 'patient representatives' to take part in a wide range of working groups and activities.  The Patients Forum remains uniquely placed as a national body able to bring together such a broad range of patient interests.  

Our bi-monthly newsletter continues to keep our members updated on policy developments, and provides a further mechanism for sharing information and provides a further mechanism for sharing information among members about their own work.  

Measuring our success 

It can be very difficult to measure success in influencing policy and practice.  But perhaps the most striking recognition of the value of our work came in the form of the very welcome news that the Department of Health would provide further funding to the Forum in the current financial year through the Section 64 programme.  This funding will allow us to continue to give organisations representing patients and the public an opportunity to ensure that the patient voice is heard, and will allow us to move the Patients Forum forward.  

The Government is publicly committed to listening to the public voice in health care.  But we cannot become complacent, and we must not stand still.  We need to identify new ways of supporting our members in their work, by creating new opportunities for them to participate in the policy process, and enabling them to deliver on their organisational priorities.  The core purpose of the Patients Forum remains to provide a service to our members.  How we can do that better has been the subject of recent discussions by the management committee, and we will be looking to our members for the answers. 

Another measure of success in our work is the number of organisations making up our membership.  Our membership now stands at a total of 98 organisations, making us one of the largest networks of patient and consumer health organisations.  The size of the Forum and the fact that our members are representing the interests of many millions of health service users, gives us great strength.  But we are not a competitive organisation - far from it.  We need to ensure that we are not duplicating effort, and that we make appropriate connections with other relevant national bodies; something that we have begun to do over the last year and that we will continue to do in the coming year.  

Governance 

In terms of our governance, this year was the first time that we co-opted associate members to join the management committee, strengthening the important connections with our associate membership.  This experiment, I believe, was a positive one, and one that I hope we will be able to continue in the future.  

Securing funding for the future work of the Patients Forum has been a major priority over the past year, and further work has been done to begin to introduce greater diversity of funding, with the adoption of a clear policy outlining how we will work with organisations that may be potential sources of future funding.  We also remain committed in principle to pursuing our application for charitable status, but there is more work to be done in refining our work programme now that funding has been secured, and we cannot do that without the help of our members. 

Looking to the future 

2005 will almost certainly be an election year, with the concept of choice likely to be the main battleground on health.  In addition, the organisational change announced by the Department of Health in the summer will undoubtedly have implications for the NHS.   

Patient and public involvement in health remains high on our list of priorities, and is, after all, what we are all about.  With the news that the Commission for Patient and Public Involvement in Health is due to be disbanded, it will be crucial over the coming months to ensure that there are robust and effective mechanisms for the patient voice to be heard at all levels of policy development, service planning and care

delivery.  It is perhaps more important than ever that organisations like ours redouble our efforts to promote dialogue and to give our members the information and support that they need to be able to play their part in shaping future health policy. 

On a personal level, it has been a privilege to chair the Patients Forum over the last two years.  Thanks, as ever, go to Diana Basterfield for her energy and commitment, and for keeping the show on the road.  Thanks must also go to all of the members of the management committee, and particularly to Karen Thompson who is standing down this year as joint vice-chair, and to all of the members and associate members who make the Patients Forum what it is.  I am very much looking forward to helping ensure that the Patients Forum continues to provide a valuable service to our members and to the shape of health policy in the future.  

Jonathan Ellis.

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