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Harness patient power

Patient engagement is integral to service development and PBC, write Dr Ethie Kong and Caroline Kerby

Patient engagement is integral to service development and PBC, write Dr Ethie Kong and Caroline Kerby

What is PBC?

Practice-based commissioning gives practices the opportunity to commission and redesign services for their patients. As the services are for the patients, it is essential that we have active participation and involvement from them. A strengthened voice for patients is also set out in the white paper Our Health, Our Care, Our Say, and confirmed in the Commissioning Framework for Health and Wellbeing.

Our PBC consortium, the Harness GP

Co-operative, operates as a social enterprise, comprising 10 practices of various sizes, covering a population of 55,000 in wards of high diversity and deprivation in Brent, north London. We acknowledged from our inception the paramount priority for us to set up a patient forum.

The consortium is led by a clinical lead and a management lead, supported by an administrator, whom we fund using our collective Towards PBC DES1 monies.

How we set up a forum

Setting up and sustaining a patient participation group requires enthusiasm, championship and commitment from practice members as well as patients. I have personal experience of such as I started the first patient participation group in Brent more than five years ago. It is hard work to keep it going, but it is well worth it.

As a co-operative, we established a consortium-wide patient forum a year ago. Some GPs said that although they would like to involve patients in the running of their patients and service development, they did not have enough time to do so or sometimes had a problem identifying which patients to involve and how.

The solution was to have dedicated staff to secure public involvement and to tap into existing groups. So the consortium's practice managers' group was tasked with delivering patient involvement by recruiting a minimum of three patient representatives per practice. We know that not everyone can be present at every meeting, so having a big core group, of 30, was important.

Recruitment was carried out in various ways: advertisements were placed in waiting rooms; individual patients were targeted, and we tapped into existing practice participation groups, focus user groups and expert patient groups.

At the first meeting, we had a good turn out, around 90%, where the purpose of the forum was explained. We wanted them to inform us about the experience of primary, community and hospital services, propose changes and new services, and explain what information they would like us to provide. A chair and vice-chair were elected.

How the forum is run

The forum meets bi-monthly. The chair meets with the consortium's management lead and the administrator prior to the meeting to set a specific agenda. The administrator and practice managers organise the venue, refreshments and transport for the patients who need it. We use a local authority venue, which is low-cost to rent and accessible as it is on a bus route. We will pick up and drive patients ourselves to the meeting if they need it.

At the meeting, the chair is supported and can receive clarification on issues, by the presence of the consortium's clinical and management leads.

DES monies pay for the venue, refreshments and transport costs, while the practice manager, administrator and GP time is absorbed into their consortium roles, as we all see it as an essential duty to bring the reality of patient participation into PBC.

Topics discussed so far include: the ‘ABC' of PBC; the Government agenda and reforms; patient choice; types of practice contracts (GMS/PMS); how practices are run and funded; how practices will be sharing their expertise across the consortium; and the financial state of the PCT and its impact on services.

We have shared our commissioning intentions with the patient forum, and they also share their experience of health services to help inform new pathways. For example, our gynaecology pathway was informed by asking women who came to GPs with heavy bleeding what happened next. What questions did the GP ask? What tests did the GP order? How long did they wait for an outpatient appointment? Did the hospital run the same tests again? Did this involve unnecessary waits for results? Would they be happy to see

GPSIs instead of consultants?

Obviously it is impossible to have all sections of the practice population represented at all meetings.The core group of 30 has a wide range of age (20-plus to over-70s); both men and women, and different ethnicities. If the agenda touches on specific issues that are age, ethnicity or condition-specific, we actively invite these specific populations to attend. Alternatively, if they cannot attend, the practice managers will telephone and ask them for their opinions and suggestions to feed back to the meeting.

How patient input is fed back

The practice managers and patients take feedback to and from their practices to the forum. A quarterly newsletter is also produced by the forum.

Each practice receives a copy of the minutes of the meeting via the practice manager. In this way GPs are informed and are indirect participants, so their time is best served clinically. However, they have an open invitation to attend the patient forum meetings and some are specially invited when their expertise is required.

Like the GP forum, practice managers' forum, and nurses' forum, the patients forum also feed backs into the consortium's board.

An involved public is an informed public.

Through education and information sharing, we try to contain any unrealistic expectations of what can be changed. With patients now understanding the funding of practices, they have expressed satisfaction with their practices and appreciate the constraints they have to work within. They also now have a better understanding of who are the most appropriate professionals to contact in certain cases instead of their GPs.

We will be shaping service standards, development and monitoring, and decisions on how to spend savings, in partnership with the forum.

Lessons for other consortiums

To sustain the momentum and viability of a patient forum is quite a task. However, it is do-able. You need a committed team. This is non-clinical work, so devolve to the practice managers; they are important partners to GPs in the successful implementation of PBC.

With little management support for PBC in our patch, practice managers were well-placed to extend their managerial role beyond their own practices, and have created a strong network and peer support. They also feel valued to be included in PBC.

Harnessing practice managers' and patients' energy proves that the ‘inverse law' does not always apply. Patients in deprived areas can have a say in their healthcare and participate in service redesign with their practices.

Dr Ethie Kong is a GP in Brent and chair and clinical lead for the Harness GP Co-operative and can be contacted by email on

Caroline Kerby is a practice manager in Brent, management lead for Harness GP Co-operative and winner of the NHS Alliance Acorn Awards 2006 for Innovation in Practice Management in PBC, and be contacted by email on

Case studies from patient participation groups are available in a report, Moving Beyond Them and Us, which can be found at The National Association for Patient Participation

5 top tips for involving patients in PBC 5 top tips for involving patients in PBC

Graham Box, chief executive of the National Association for Patient Participation, offers these five tips:

1 Tap into others' expertise by making use of existing groups These include voluntary organisations, those nurtured by local authorities and the soon-to-be-created Local Involvement Networks (LINks), which will replace patient forums. GPs examining provision for older people with mental problems, for example, could turn to a local Alzheimer's association.

2 Form a patient participation group at your own surgery One in four practices has these, according to an NAPP survey. Representatives from these could be sent to locality meetings to inform PBC consortium work.
3 Support and train patients to support PBC in a meaningful way Remember your own learning curve in getting to grips with PBC policy, aims and procedures; patients will similarly need education to make the most useful contribution.

4 Require providers to routinely supply patient feedback Commissioners should aim to get real-time feedback from patients. Handheld electronic devices are being piloted to allow patients to answer simple questions on access, waits, attitudes of reception staff, confidence in clinicians and confidence in managing conditions.

5 Produce annual reports outlining how patient input has been acted upon Patient-friendly versions of annual reports drawn up for accountability purposes should be made available.

It's best to have dedicated staff to secure public involvement and to tap into existing groups.

Setting up and sustaining a patient group requires championship, commitment and enthusiasm.

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