Patients need to be heard in the boardroom, not complaining in the media. But good patient and public involvement doesn't just happen - it needs a healthy investment of time, money and training
This will be a critical year for public involvement in the NHS. Involving patients and the public more in shaping local health services helps ensure that NHS provision accurately reflects our needs and wishes. But will the current changes in the NHS make this more or less likely?
Organisations like Breakthrough Breast Cancer are in a unique position when it comes to patient involvement. Breakthrough supports a network of over 1,000 individuals and organisations who are concerned about breast cancer. Called the Breakthrough campaigns and advocacy network (Breakthrough CAN), it influences all aspects of our work, helping us to understand what the real issues are for patients - they are our eyes and ears on the ground.
For example, in Cornwall the 2006 suspension of local breast cancer services left patients in the area facing an uncertain future. Through participation in their local cancer user group and showing how people would be affected by the removal of these services, Breakthrough CAN helped ensure breast care services were restored to the region.
And across the country, breast cancer services are being improved bottom-up through a partnership of frontline staff and patients known as the Breakthrough service pledge for breast cancer. Developed as a tool for health professionals and their patients to work together to improve local breast cancer services, 15 breast units are now signed up to the service pledge and we are beginning to see results. The approach is not exclusive to breast cancer and can provide a model for other services.
Another example: patients who have undergone breast surgery at South Tees Hospitals trust's Friarage Hospital were asked about the services they received and any improvements they would like to see. A key request was a drop-in centre that would enable women to get breast health advice from a clinical nurse specialist. Nurses leading the Friarage service pledge piloted a drop-in clinic in Richmond, north Yorkshire in September 2007. It received high praise from health secretary Alan Johnson, who commented: "We know that patient involvement and care closer to home are essential components of an efficient health service and this is an excellent example of these policies in practice."
We know from these examples and similar activity across the country that good patient and public involvement does not just happen - it needs an investment of training, planning and support. Working with hospitals on the service pledge has shown it is often the small details that are making the most difference, such as providing the right information or changes in the waiting area.
Many important improvements do not need to cost much but are invaluable to patients. What they do need is careful planning and investment of time and attention. They will fail if there is not a willingness to listen at all levels. They will succeed, as with the launch of the pledge at University Hospital Cardiff last month, where everyone from the local assembly member and hospital chief executive to the breast care nurse and patient representative are signed up.
Structural failure within the NHS could mean that we lose the benefits of patient involvement, either because people are never engaged in the first place or become disillusioned and withdraw participation.
There is plenty of rhetoric about the central role of patients and public in the development of the NHS. One of the clearest expressions was in the 2006 white paper, Our Health, Our Care, Our Say, where both the then prime minister's preface and health secretary's introduction left no room for doubt: "These proposals, part of the government's wider reform programme, will allow us to accelerate the move into a new era where the service is designed around the patient rather than the needs of the patient being forced to fit around the service already provided."
What is crucial though is that managers and clinicians alone cannot make a patient-centred service. Patients must be involved if the NHS is to genuinely ensure that its services are right for them.
But has the rhetoric been translated into reality? It seems we have some way to go. This matters not because it means ministerial pronouncements on the importance of involving patients and the pubic will remain just that, but because the benefits of involving the public in the design, delivery and development of NHS services are real and can have a direct impact on the quality of services provided.
A systematic review of involving patients in the planning and development of healthcare published in BMJ reported that of 337 studies, a disappointing 294 (87 per cent) were excluded, because they did not describe the effects of involvement. We must get better at recording the outcomes of patient involvement, moving beyond rhetoric and meeting minutes, to clear benefits for all to see.
Over the past 10 years there has been a huge amount of reform within the NHS. Health service managers have complained about the "improvement blight" that comes from constant change, as almost every health secretary of the past 10 years has sought to radically reform the NHS according to their own new model.
As an employee you have to live with change, but volunteers, who could be involved in influencing service design and delivery, can simply opt out or not take part at all. We should consider whether the constant reform has damaged patient involvement. Is there a feeling of apathy, that there's no point getting involved in a new initiative because it might all change next year anyway? Nowhere is this risk greater than in the basic fabric of patient involvement, where we have moved from community health councils to PPI forums and now local improvement networks.
Are you ready for LINks, which are supposed to be in place from April? The reports from the nine early adopters provided more questions than answers and indicated that a single approach will not be applicable throughout the country.
Although 95 local authorities have begun the procurement process to establish LINks, this leaves 50 that have yet to start. Questions also remain about whether adequate resources will be available to fund and maintain the diverse and inclusive LINks that the government envisages.
LINks are one part of the patient and public involvement puzzle, but they are not the only part. As demonstrated through Breakthrough CAN and the service pledge, patients can be successfully involved where they are properly supported and there is a willingness to listen. But this engagement must also take place at the national level.
The jury is out on whether this will happen as it should. Initial concerns were that the new ministerial team had the health service workforce as their dominant concern. But the first stages of the Darzi review suggested a move from a patient-led health service to a "clinician-led, patient-centred" paternalistic health service. More recently there have been signs of change. Health minister Ann Keen has supported the establishment of a new umbrella body, National Voices, designed to ensure national voluntary organisations can better engage with the Department of Health.
It is clear there will need to be investment and tangible evidence that involvement means influence. Otherwise the NHS risks patients being seen complaining in their local media rather than being heard in the boardroom.
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Systematic review of involving patients in planning and development of health care , Crawford, Rutter et al, BMJ 2002.