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Wednesday 28 September 2016
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Patient participation groups – do they serve any purpose?

Patients & Services

Alison Last
MA MCSP

Patient and Public Involvement Manager
South Birmingham PCT

Alison has worked in the NHS since 1979. She trained as a physiotherapist, and worked with people with learning disabilities for many years. During this time, Alison became increasingly interested in all aspects of clinical governance – especially patient involvement and the importance of shaping services around patient opinions. Since 2005, Alison has been Patient and Public Involvement Manager for South Birmingham PCT. Her personal interests include coaching and judging gymnastics, and any remaining spare time is filled by relaxing at home or enjoying evenings and weekends with friends and family

Public participation in decisions regarding the planning and delivery of health services has become a familiar feature of the policy agenda for the NHS over the last decade (see Box 1).

[[PPG_box1a]]

Involvement in healthcare has been indicated as good practice for many years, and therefore increasingly the way that things are to be done. The list in Box 1 cites policy and legislation since 1995, but even before the NHS was created, community participation in hospital governance was encouraged through mass hospital contributory schemes. The historical experience of these "worker governors" is relevant to current debates about member involvement in NHS foundation trusts.

As recently as the Bristol Royal Infirmary Final Report in 2001, the need for "public involvement through empowerment" has been emphasised.1 The report states that "the involvement of the public in the NHS must be embedded in its structures: the perspectives of patients and of the public must be heard and taken into account wherever decisions affecting the provision of healthcare are made."(1)

The NHS needs to change its culture and systems to become truly patient-led, where everything is measured by its impact on patients. It has been asserted that a partnership is "founded on equality and mutual respect", and that there is "no balance of power between the patient and the healthcare professional":(2)

"To understand the system and be able to change it, we have to see it from the patient's point of view. This implies a change of attitude in healthcare … we also have to create a system based on the premises of the consumers. Establishing a patient/relative panel is an example of creating an arena for building partnerships with patients. By combining professional knowledge with systematic input from experienced consumers, the … organisation can get access to valuable knowledge and insight to improve the care for the patients."(2)

Action is required to tackle the barriers that create rigidity and inflexibility in the system, supported by shared values and codes of conduct, and with clinical leadership and greater support of frontline staff through continuous learning.

A patient-led NHS is easy to say, but not so easy to do
The NHS can be much better at listening to, understanding and responding to people. It can take advantage of the rich mix of information that exists about people we serve. Patients are not just the sum of their ailments; they have lifestyles and interests that impact on their health, and health issues that impact on their lifestyles and interests.

Information from patients can be used to help understand better how to shape services to respond to individuals and their lifestyles.

As with so many other NHS policy initiatives, it's important that involvement isn't seen as an add-on, but an integral part of good patient care; not as a new burden, but as a different way of thinking and behaving, where patients have a say – not only in their care (which has been good and common practice for many years), but also in the planning, managing and delivery of NHS care.

Patient and public involvement should be part of everyday practice in the NHS, and must lead to action for improvement. Only then will patients and the public have a greater say in the way the NHS is planned and developed, how it operates and how it can better respond to their needs and expectations.
This is now reflected in the core national standards, which the Healthcare Commission will take into account when they assess NHS healthcare providers.

But do patient participation groups (PPGs) really serve any purpose?
To answer this question, here is the story of one PPG at the Ridgacre Practice in South Birmingham. I spoke to the chair of the group, Pauline Smith, who is a patient at the practice, as well as a GP from the practice, Dr Maurice Conlon.

AL: Pauline, you are the chair of one of the most active and successful patient panels in South Birmingham. How and when did you get started?

PS: Back in 2004, patients of the practice were asked by one of the GPs if we were interested in forming a patient panel. None of us really knew much about what they were, or what it might mean to form one for our practice, but some of us were definitely interested.

We heard about a PPG in Dudley, so we invited them to come and talk to us about their experiences. They really got us fired up when we realised how much of a difference we might be able to make. Even though we know we aren't "medical people", we try to contribute something to the overall process.

AL: What do you now know about the history of patient panels?

PS: Patient panels have been set up to give patients the chance to meet with other patients in their GP practice, to have a voice and to work towards making a difference by sharing their views and experiences of services. Patient panels give patients a "real" voice in deciding how the surgery improves and develops.

Patient panels are now included within one of the patient experience domains within the Quality and Outcomes Framework (QOF). We have lay assessors within QOF, who visit practices to assess them against a range of standards, including patient experience.

AL: Tell me about the first meeting of your panel.

PS: We talked about what we wanted the panel to look like, and agreed upon the structure and the membership. We wanted to make sure that the practice manager and a GP from the practice were members of the panel as well. We elected officers, and agreed who would be the contact point within the practice for any patients who wanted to join the panel. We then agreed how often we would meet and for how long, so that everyone knew exactly what they were committing themselves to.

AL: How did you agree what you would talk about as a group?

PS: We agreed some basic, standing agenda items, such as: items from GP meetings (new staff, changes taking place, issues, etc); Treasurer's report; suggestions received; our action plan (and progress made on this); and patient survey information.

But we also really wanted to be the communication link between the practice and their patients. We wanted to try and encourage patients to think more and take actions to stay healthier. We also discuss and attempt to resolve various issues and problems, and to make improvements where staff and patients have raised the need for this.

It's not just a talking shop – actions are taken. Specific projects have included: holding a diabetes awareness evening; a men's health awareness evening; afternoon sessions for schoolchildren; and a lifestyle awareness evening. We arrange talks by doctors and other professionals, and have lots of information to give out to people.

MC: These events have been really successful. They have got patients interested in aspects of health promotion, which the practice hasn't achieved in other ways.

AL: How often do you all meet?

PS: Every six weeks, for about two hours. We always used to meet at the practice, but now we meet at another local venue. The practice provided us with a room and refreshments, but we wanted to move offsite recently. We are provided with a very small budget from the practice, which pays for stationery such as postage.

MC: We have always believed that the practice should support the work of the panel, so we are happy to provide refreshments for meetings and pay postage for letters to members when needed.

AL: How many members do you have?

PS: Currently, 12 – some are quite new and others have been involved since the beginning.

AL: Tell me some of the things that have happened because of the panel.

PS: We add information into the practice patient's newsletter; we now have music played quietly in the waiting room, so that consultations can't be overheard by people in the waiting room; we have a suggestion box; and we have been nominated for lots of awards locally!

We have also developed a "call back" leaflet, have worked with the practice to ease car park congestion during clinic times, have helped to endorse new policies in the practice, and have encouraged the practice to buy books for a patients' library and to update its web page.

We have also given presentations to other practices in South Birmingham, encouraging them to set up their own patient panels.

AL: What would you say to any other practice thinking about setting up a panel, or which has a panel that isn't really making a contribution to the success of the practice?

PS: Well, I think it's about making your panel work for your patients and not always thinking it has to be done in a particular way. The panel needs the support of the practice (and at this practice we have one of the GPs and the practice manager attending all our meetings) if it is to really make a difference and to be sustainable.

MC: I think it's important also to note that if it doesn't get going first time around, try again! We didn't get it right first time, and had to have a second go here at this practice. It was definitely worth the effort.

AL: Tell me about the real challenges to being the success you are.

PS: These would be:

  • Recruiting new members – getting more people involved.
  • Broadening the panel representation.
  • Keeping up the momentum.
  • Making health awareness evenings attractive and beneficial to patients.
  • Finding and working with other
  • patient panels.
  • Supporting the practice in the implementation of primary care trust objectives.

AL: What are the main aspirations for the panel, now that you are established?

PS: To have a more representative and diverse patient panel; to assist other practices in forming patient panels; further health awareness evenings; and to continue to recruit new panel members.

AL: Thank you for telling your story to Management in Practice.

Final thoughts
PPGs – do they serve any purpose? Yes, they do! With the right information, support and attitude, a panel can:

  • Make a real difference.
  • Shape service planning, management and delivery.
  • Air concerns and have an impact on how services are run.
  • Decide together with the practice about how things are done.
  • Feel valued and listened to.
  • Understand the challenges faced by the NHS and how difficult decisions are reached.

References
1. Command Paper: CM 5207. Learning from Bristol: the report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995. Bristol: Bristol Royal Infirmary Inquiry; 2001. Available from: http://www.bristol-inquiry.org.uk/final_report/index.htm
2. Enehaug I. Patient participation requires a change of attitude in healthcare. Int J Qual Assur 2000;13(4):178-81.