Representative [rep-ri-zen-tuh-tiv] noun, a person or thing that represents another or others. a typical example or specimen of a group, quality, or kind.
When I drop my kids off at primary school I am greeted with an explosion of diversity. Children of different faiths and cultures chase each other round the playground in riotous cacophony. It’s a joy to watch and it fills me with hope for a future, not of tolerance but of celebrated integration.
Meeting the health needs of such a diverse community isn’t easy, so when we make changes to health services we spend a lot of time talking to people from different areas in Leeds. To make sure that our plans for engaging with the community are comprehensive and robust we share our engagement plans with our Patient Assurance Group (PAG). The group is made up of patients who help us develop a plan which will capture a wide range of views from community members – especially those most likely to use the service and vulnerable groups.
The PAG membership is supposed to represent everyone in west Leeds. In reality it is far from representative. The group is made up mainly of the educated white middle class and while they are passionate and knowledgeable the make-up of the group is certainly not representative. We come under lots of pressure to make the group ‘representative’, not just of people with protected characteristics but also geographically. We fail, constantly, and we aren’t alone. Patient Reference Groups in GP practices across the country also struggle to create a ‘representative’ group. It can be demoralising.
Without doubt we need to make sure that we consider the views of the diverse communities in Leeds when we develop health services. However, is ensuring representative membership an effective use of limited resources? Will it ensure that everyone’s views are heard? Indeed, is it even possible?
Adrian, Tariq and Paul are all gay men. They all share the experience of living as a gay man in Leeds in the 21st century. Here though, their shared experience ends and they simply become three very different people sharing a sexuality. Let’s look at these men in more detail and draw on some lazy stereotypes.
Adrian is 67 years old. He lives with his partner in Adel in a beautiful house and spends his retirement in the garden, growing vegetables and flowers. Tariq lives in Hyde Park with his family. He is 22 years old. Tariq hasn’t come out because he is worried what his family might think and he has also heard about islamophobia within the gay community. Paul is 19 years old and has just started university in Leeds. He is a member of the LGBT society and enjoys the gay scene in Leeds city centre.
Three people sharing one sexuality; three very different experiences.
Having Adrian, Tariq or Paul in your patient reference group would be a real coup. We tick the ‘homosexual’ box and proudly announce that our group represents the gay community. When our organisation is audited we receive praise for making our group ‘representative’ and ‘diverse’. We confidently press on with decision making safe in the knowledge that the views of a whole community have been accounted for.
There has to be a better way than this.
We all do it; we share our thoughts based on our own personal experience, or that of our close family and friends. It’s our default, it’s natural. But we want our commissioners, clinicians and patient representatives to think beyond their own experience. At NHS Leeds West CCG we are trying different ways to make sure that our commissioning decisions take account of our diverse communities.
Originally developed in Sweden, the Esther model uses a patient persona to remind commissioners and clinicians about the impact of decisions on patients – ‘What does this mean for Esther?’ We are using this model in Leeds as a tool to prompt staff and patient leaders to consider the impact of their decisions on ‘Esther’, or in Leeds, ‘Doris’. Doris is male, female, Muslim, Christian, gay, and straight, Doris is simply a reminder to think about the patient. It’s a great model with a simple message ‘What is best for Doris?’ It’s only drawback as far as I can see is that it’s easy to think of Doris as an elderly, white middle class woman; not exactly helpful when you are trying to get people to think about diverse communities.
Over the last year we have also been developing our Patient Leader Programme. The programme recognises local people as assets who can help us develop patient centred health services and support our move towards coproduction. It also helps to place the patient at the heart of the commissioning process so that they can champion the patient voice throughout the commissioning cycle. We have 35 patient leaders on the programme and they sit on various strategic commissioning groups. As you would expect they don’t represent our communities, however the group are encouraged to ask ‘what does this mean for Doris?’ Their role is as an objective patient advocate, ensuring that feedback from the wider public is considered at a strategic level.
As the programme develops we will offer our patient leaders training to understand the needs of different communities and explore their own emotional intelligence. They will be encouraged to use this understanding to create a line of questioning that goes far beyond their own personal experiences. By empowering local people in this way we believe that we can move closer to coproduction and a real patient centred health service than by simply recruiting people with protected characteristics.
As I pick up my children from school I hear that they are having an open day where parents can go into school to meet the teachers and learn about the curriculum. “That will be difficult for me” I say, “I work nine to five”. “Well we did talk to parents and they told us that this was the best time” comes the reply….
Engagement Lead NHS Leeds West CCG