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Get into it! - Get involved!

Jonathan Russell, MS Trust

Open Door - February 2003 page 5

New patient organisations and the NHS

There has been much talk in recent years of the need to increase patient and public involvement in the NHS, and since the publication of the NHS Plan in 2000 various new organisations have emerged. More are soon to follow.

These new organisations are of two basic species. The first is designed to improve patient's experience of the NHS and to increase the support and information available to them. The most important of these are the Patient Advice and Liaison Services, or PALS. Over the past year, pilot PALS schemes have been set up across the country, and there are now 200 such units in operation, generally in hospitals. PALS advisers are there to answer any sort of query about the health care available, to give information on local services, and to direct people to appropriate support groups. As they become more established, they should increasingly act as a first point of contact if you need to know anything about your health care. In cases of dispute, they will also help people to contact the new complaints organisation, the Independent Complaints Advocacy Service (ICAS), which has been piloted even more recently.

If these two new organisations will make it easier to get information about local health services, and improve the support that the NHS gives us as patients, the second species will increase the influence of the general public in designing the services that the NHS provides, and increase the say we all have in the way that it is run. On 1 January 2003 the new Health and Social Care bill came into force, section 11 of which places a statutory duty on the NHS to involve and consult the public. As a result of this, a new national organisation started work, the Commission for Patient and Public Involvement in Health, based in Birmingham. One of its primary responsibilities will be to set up what are provisionally called Patient Forums, committees composed of local people, both patients and health professionals. At first these will probably only exist at Primary Care Trust level, but every hospital trust should eventually get one; and they could potentially be very powerful, since the NHS will have to listen to their recommendations if they are not to be penalised by the Department of Health (DoH). As well as nominating one of their members to be a non-executive director on the Trust board, Forums will also have the power to inspect any health centre or hospital - and then to complain directly to their Strategic Health Authority, the DoH and the media.

The NHS is, after the Chinese Army and the Indian State Railway, the third largest organisation in the world, and any change in its working practice and culture will take time and a great deal of patience. If we are to get the health service we deserve, however, it does need to be organised more closely around the needs of its users - in other words, around the knowledge and experience that patients can provide. Some cultural change is currently being introduced - teaching people to realise, for instance, that a complaint can be treated as something positive. PALS and ICAS will play a part in this. Yet fundamental changes will only come about if the Patient Forums work successfully - if they enable the patient's voice to be heard at every level of the NHS. The money given to supporting these organisations will of course probably not be sufficient, which makes the need for widespread involvement even more essential - since only the commitment of a large number of people willing to volunteer their time and their own personal experience and expertise will make them functional. And in the case of our health service, we cannot leave this to the next person. - 'Get into it! ... Get involved!

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