Written by the talented Dr Peter West is a health economist and health services researcher and a freelance consultant to pharmaceutical firms and NHS bodies. He has had two terms as a non-executive director of NHS trusts and authored three books and many research papers and reports on health services’ economics and policy.

As PCNs develop to lead local primary care development, there is a clear case for an independent patient and public voice on their governing bodies, argues Dr Peter West

I have always thought of HSJ readers as among the most knowledgeable about the NHS. But I wonder how many of you know about your local patient participation groups or can name its current chair.

Patient participation groups were introduced some years ago to provide a formal source of patient input to primary care practice development. I understand that at first there were some incentive payments to a practice which operated a PPG.

As far as I know, these payments no longer operate but Care Quality Commission might take an interest in the operation of a patient participation group. I spent several years as a member and chair of a PPG recently.

However, ultimately, I felt obliged to resign because of the unwillingness of the practice to actually involve us in local primary care development.

Concentration of primary care

Readers will know that primary care has become increasingly concentrated into large practices over the last 20 years. Although GPs can run their own business, as contractors to the NHS, they do not usually face the kind of open competition that a businessman would recognise.

General practice is not an open market and primary care is not a particularly popular job for many doctors. As a result, practices have tended to get larger and larger, with more control of local primary care in fewer and fewer hands. Patient voice in the decision-making by these large practices seems to me to be important.

In my own part of London, there is some choice of practice around our suburb, about three or four accessible practices and one very large practice, the dominant player. Our PPG had a history of good relations with the practice, with a lead partner attending its regular meetings.

While some PPGs meet relatively infrequently, we always felt that monthly meetings were important if there was to be any momentum behind our activities. Following a practice merger, a new partner became responsible for the PPG.

The lead doctor felt that the practice could not be expected to send representatives to a monthly meeting but would come bimonthly or quarterly. Of course, with email, there is no problem in principle of communicating with people outside of meetings. But as we all know, getting people to agree to something in the room is a big step towards making it happen.

 I spent several years as a member and chair of a public participation group recently. However, ultimately, I felt obliged to resign because of the unwillingness of the practice to involve us in local primary care development

It is also worth mentioning that our local clinical commissioning group has done almost nothing to engage with patients generally through the local PPGs. About every two years, I would have a meeting with a CCG employee who had the words public, patient or engagement in their job title. They would convene a meeting, describe the sunlit uplands to which they would be taking us and then, quite simply, disappear.

Our local problems began when, somewhat to our surprise, competition arrived. Babylon was able to occupy a floor of the local health centre, a smart modern building, above the existing general practice facilities. This raised an issue for us as a PPG.

While we were associated with the established practice, should we say anything about the new arrival? Were we merely the customers of one practice or were we people representing the interests of local patients? Having seen some patients confused about where they should be presenting for treatment, one floor or another, we felt it was important to say something in our newsletter about the new practice.

The established practice would have preferred us to say nothing but we felt our patients needed to know, for example, that if they joined Babylon, they would no longer be able to receive treatment from the established practice. Patients typically see the NHS as a single entity when in fact it is broken up into trusts and primary care practices in ways which mystify them, particularly when receiving care outside hospital.

We felt it was important to eliminate some of the confusion. We also told local patients that they had the right to return to the established practice at a later date if they so choose. I continue to feel that this was appropriate information for the PPG to provide.

PCNs and patient representatives

Around the same time, a primary care network was established between our large practice and a smaller neighbouring practice. Based on an internet search, we found several different practices where patient representatives have been involved from the start in PCN discussions, in some places as equal partners.

As PCNs are networking bodies outside of the core business of the practice, we felt they were an ideal place for greater patient involvement. For example, we expected that there would be no detailed commercial or personnel discussions in network planning but rather a focus on future service changes and developments.

Our practice was very resistant to the idea of our inclusion but did at least agree to a joint meeting of the two practices and the two PPGs, following the first meeting of the PCN. For obvious reasons, not much had happened at the first meeting and so we asked for a further update in three months.

While this was agreed at the time, four months passed without a meeting and at that stage it was suggested to us that there was no funding for further meetings of the PCN with patient representatives. We were both surprised and disappointed and in response asked to see the minutes of the PCN meetings so that we could understand what changes might be in store for local primary care. This provoked a major row with direct criticism of my role and so I resigned.

While CCGs have independent directors and NHS trusts have similar directors and boards of governors, GPs have PPGs

However, I continued to feel that it is important for local patients to know what is going on and what is being planned by the PCN. We had effectively been told that nothing was going on and there were few if any plans to change services but this made the withholding of the minutes more of a puzzle.

Having thought things over, I decided to submit a Freedom of Information request to the practice, requesting the minutes of management meetings and the practice accounts. These are clearly covered by the publication schemes that apply in NHS primary care.

The practice rejected my initial request and a follow-up and so, reluctantly, I turned to the Information Commissioner’s Office. After some delay, they found in my favour and I recently received a large package of documents from the practice.

The process had taken nearly a year and, reviewing the material, I found that the minutes of the PCN meetings had not been provided. I will keep trying.

I will have to grapple, though, with a whole new range of NHS acronyms in the material provided. The practice also suggested that I have wasted clinical resources through my requests while rather overlooking the resources they wasted in challenging my request.

Public involvement 

General practice is run by contractors who are in many senses independent of the NHS. GPs have prized this independence for a long time though recent trends suggest that young GPs are quite happy with salaried employment.

Indeed, it is possible that PCNs are preparing the ground for an NHS trust model for local primary care. Despite their independence, GPs spend very large amounts of public money and yet, at practice level, independent public involvement in the use of this money is minimal.

While CCGs have independent directors and NHS trusts have similar directors and boards of governors, GPs have PPGs. Some engage very closely, others hardly at all. After all, until a decision has been made, there is nothing to consult upon, and once the decision has been made, it is too late for consultation!

In my view, as CCG power is drawn to larger and larger NHS groupings and the PCNs develop to lead local primary care development, there is a clear case for an independent patient and public voice on the governing bodies of PCNs. This is our money providing services for our health and it is time that PCNs embraced a strong and consistent level of patient and public engagement.