Written evideence submitted by the National Association for Patient Participation (FGP0199)


Registered Charity Number 1187058

Patron Sir Denis Pereira Gray OBE


Table of Contents


Section 1: Introduction              2

Section 2: Background to N.A.P.P.              3

Section 3: Work of N.A.P.P.              4

Section 4: Establishment of PPGs              5

Section 5: Statutory support              5

Section 6: Challenges in the way primary care is delivered              6

Section 7: Examples of PPG work              7

Section 8: PPGs working in the Covid pandemic              9

Section 9: Further activities of PPGs              10

Section 10: Conclusion              11

Section 1: Introduction


1              I, Dr Patricia Wilkie, am sending this submission as President of the National Association for Patient Participation (N.A.P.P), which was co-founded in 1978 by Dr Tim Paine, a Bristol GP. Dr Paine is a co-author of this submission as also are Mrs Gemma Jackson, chair of a patient participation group in Thornton-Cleveleys Lancashire, and Ms Mwamba Nyambe, a Trustee of N.A.P.P.  In 2021 N.A.P.P. became a CIO, registered charity number 1187058.


2              The Health Select Committee requested information on any or all of thirteen points. These points did not include patient participation groups (PPGs). We believe that this is an omission as PPGs can assist the practice by:


3              We believe that, although PPGs and their national organisation, N.A.P.P., were not specifically mentioned amongst the select committee’s points, they are so important for the future of patient care in general practice, to the wellbeing of GPs and their staff, and as an able and willing route to help in reducing the current crisis, that they merit separate focus.


Section 2: Background to N.A.P.P


4              N.A.P.P. was established to encourage the development of patient participation groups (PPGs) in general practice to help improve patient care by working with the practices in an atmosphere of mutual trust and cooperation. Also, in 1978 the WHO Alma Ata Declaration, adopted at an international conference on primary care stated, “People have a duty and a right to participate individually and collectively in the planning and implementation of their health care”.


5              A further recommendation of the Alma Ata Declaration was that primary health care “requires and promotes maximum community and individual self-reliance and participation in the planning, organisation, operation and control of primary health care making the fullest use of local national and other available resources; and to this end develop through appropriate education the ability of communities to participate”.


6              NHS England states that it is committed to working with and listening to patients, carers and the public and to embed the patient and public voice in the commissioning process. This is done in the governance structure by having lay members on committees and through effective and ongoing engagement activities working with patients and the public to jointly design and develop services. While these recommendations reflect progress, they do not specifically apply to general practice


7              The aims of N.A.P.P. are:


Section 3: Work of N.A.P.P.


8              An important aspect of our work is linking with our members (the PPGs) and finding out what their members in PPGs throughout the country believe is important for patients in general practice and what can be done to help. In 2020 we set up a new website organised by VeryConnect where our members can communicate with us and each other. This is proving most useful. Issues important to patients in general practice that have been highlighted include access, continuity of care, time to explain problems and seeing a GP or practitioner who knows them.


9              Information collected from PPGs is used to feed back in collaborative work with the NHSE, BMA and RCGP as well as at national stakeholders meetings. N.A.P.P works with practice manager organisations and the regulators including GMC and CQC. We publish articles, give lectures and respond to the press. A most important part of our work is supporting our PPG members round the country and encouraging all PPGs to become N.A.P.P. members and all practices to have an effective PPG.


Section 4: Establishment of PPGs


10              PPGs were established in the early 1970s by three GPs, Peter Pritchard in Berinsfield in South Oxfordshire, Tim Paine in Bristol and Alistair Wilson in Aberdare, Wales (Dr Julian Tudor Hart’s practice). These three GPs were working independently each unaware of the work of the others. Although there were variations in the priorities for the groups, there were common themes including a wish to give patients more of a say in how their practice was organised, a desire to promote health education, a systematic attempt to provide voluntary services in the local community and some system to examine complaints and grievances. The following quote by Alistair Wilson of the Aberdare practice is revealing: “What is envisaged is cooperation between the health centre staff and the patients rather than confrontation, the aim being to involve as many patients as possible and to use the unique and varied experience of the 10,000 patients as possible to assist the practice team of 15 to provide a better service”.(Wilson, A 1975 Participation by Patients in Primary Care BJGP 25, 906-8)


Section 5: Statutory support


11              Those early GPs had hoped that the importance of the contribution that practice patients can make to the service would really take off but due to professional hesitation progress has been slow. It was not until April 2016 that all GPs in England were required to have in place a PPG as part of meeting the GP contract. However, there was no requirement nor description in statute of what constitutes a PPG, what it can do, whether the group should be face to face or virtual nor how it should be organised, making it difficult for both practices and their PPGs. There is no check on whether practices have established a PPG. It is also important that PPGs are properly funded and this needs to come from the practice. Fund raising can be done by PPGs, and is, but it is a distraction from their main purpose, which is to be an independent patient voice.


Section 6: Challenges in the way primary care is delivered


12              Since the establishment of the first PPGs in the early 1970s, there have been many changes and challenges affecting the way that GP services are run including:


13              All of the above have implications for the way that primary health care is organised and delivered, and, it can be argued, for the importance of having an active and supportive patient group. PPGs can strengthen the relationship between patients and their practices, which is critical to the provision of high quality, modern general practice and can help to address queries that patients may have.


Section 7: Examples of PPG work


14              The work that many PPGs, composed entirely of volunteers, have done over the years is outstanding and have included:


15              It can be seen that many of the examples given involve work that is labour intensive and time consuming. These are resources that practice staff currently do not have. Moreover, many messages are likely to be more effective when the message is coming from the patient. Data shows that outstanding outcomes with CQC ratings are very difficult to achieve without a PPG as that forms part of the assessment.


16              PPGs can help the practice and the NHS to save money. For example there was a saving of £1.3 million in one CCG resulting from PPG investigations into over-dispensing of repeat prescriptions and by encouraging the surgery to offer appointments, on free phone numbers, to discuss repeat prescriptions. Data from CCGs also shows a remarkable increase in the take-up of screening programmes when PPGs have run campaigns to encourage that take-up.


17              Every GP practice is different and so are patient groups. They serve both large and small practices in urban, suburban and rural locations. Some are on one site, others on two or more sites; some share premises with other practices; some serve a stable population, others a more transient population; some have a high proportion of older people or a large mixture of different ethnic groups. Patient groups in rural practices, where patients are more reliant on what is often an intermittent public transport system, are commenting on this and may spend time looking at timetables and other solutions. Patient groups have commented that it can take the best part of a day for a patient relying on public transport to attend for a short face to face consultation.  Furthermore, it is unlikely that practices could have done this without the support of the PPG


Section 8: PPGs working in the Covid pandemic


18              PPGs have found it difficult to do as much as they would have liked to during the pandemic. However, many have continued to help with flu and other vaccine clinics. It is understood that there are country wide variations in how and where the different vaccines have been given. But here is an example of how one PPG in Lancashire has helped. The PPG organised the rota for volunteers to assist with the flu vaccine (GP based). This involved: welcoming patients, marshalling, manning the car park, directing people to the vaccine stations. 1,500 vaccines were given. The same procedure was used for the Covid booster which was the responsibility of the PCN. Two other practices are in the PCN but neither of those has a PPG. In addition to the tasks mentioned above for the flu vaccine, the PPG ensured that there were volunteers to assist the disabled and to wait with patients for 10-15 minutes after their injection. 40,000 boosters were given. The success of both the flu and the booster vaccination clinics is in part due to the contribution of this PPG. Many PPGs have assisted in similar ways.


19              This PPG has been able to continue with screening work for Atrial Fibrillation, Defibrillation and Dementia friends in the vaccination centre. With this training they can screen via Kardia apps and refer patients to GP reception. All screening is highlighted by PPGs and access to this is given by easy free phone numbers rather than websites that many patients do not have access to.


Section 9: Further activities of PPGs


20              Most PPGs are involved in different ways in health promotion. Some have lectures given by external speakers, some produce leaflets, some involve their own members in speaking and some are involving both primary and secondary school students in imaginative ways.


21              Difficulties in access affects many practices. PPGs have been looking at the various aspects within access as these vary from practice to practice. Where there has been a problem with too few telephone lines, the practice was able to get more lines. Monday mornings have been found to be a difficult time to get through to the practice, so PPGs have been advising patients to try to avoid a Monday morning and to consider precisely what the patient needs. Much work has also been done by many PPGs producing information about when to see or consult a doctor and when it is appropriate to consult other professionals both in the practice and in the community.


22              PPGs also work in partnerships with local councils, other voluntary groups Dementia Friends, Cancer charities, Hospices, Bereavement and End of Life organisations. All of these can provide alternative help for patients and are very important in seeing the patient as a whole.


23              Continuity of care is not only preferred by patients but also by doctors. Patients are increasingly finding it challenging to see their preferred GP who knows them. Recent studies point to worse mortality when there is no continuity. Sometimes patients are able to develop a relationship with two GPs. And for some patients a nurse may provide some continuity. With so many doctors working part time, one PPG found it helpful to publicise when different staff consult. Such a simple help for patients and one that many practices could adopt. PPGs and N.A.P.P continue to support continuity of care.


Section 10: Conclusion


24              We can quote praise for a PPG from a GP partner to the PPG chair: “We don’t know how we would have got through the last year without your support, your good wishes, your cakes, your volunteering. You are amazing. You have been part of our Team for six years and we could not be without you.”  Unless a GP practice, and particularly the Manager, meets regularly and is supportive a PPG cannot succeed and unfortunately many GP practices do not give this support.


25              Medicine is a victim of its own success. This frequently leads to increased expectations by the public in what can be done for them and by professionals in what can be offered. These expectations may be unlimited and may be unfulfillable. We believe that we need to redefine what is possible and achievable. This can only be done in real partnership between patients, doctors and policy makers and between patients and their practices. PPGs and their practices working in an atmosphere of mutual trust can help ease some of these challenges. When organisations have survived and grown over the last almost 50 years, they are worth nurturing and investing in.


Dr Patricia Wilkie, OBE, PhD; Dr Tim Paine

Mrs Gemma Jackson; Ms Mwamba Nyambe

13 December 2021              END


December 2021