By Lisa Larsen, Chief Operating Officer at PPL.
Kristian Hegaard is 24 years old. Since 2006, he has been a Councillor in a leafy local authority North of Copenhagen, and a member of the Council’s health and social services committee. Kristian is also disabled. Last week, the Committee met to set priorities and budgets for services to local residents with disabilities. Kristian was excluded from this meeting. The reason: his fellow committee members found that he, due to his disability, would be unable to consider budgets and priorities objectively.
Not surprisingly, Kristian was not happy about this. As an elected member of the local Council, he has a duty to represent his constituency. When it comes to making decisions on services for disabled people, he is in a unique position to hold the views of a user. He is the expert.
The councillors who made the decision to exclude Kristian not only failed to respect basic democratic principles, but they missed a trick by not harnessing his wealth insights and practical experience to drive improvements for local residents with disabilities, their carers and communities.
This local authority in Denmark has a lot to learn from the UK, where we are making great strides to involve users in the design and delivery services, not least in health and social care. At the individual level, more and more people co-create their personal care plans and manage their personal budgets to pay for this; at the service level, there is a great and growing recognition of the benefits of co-producing plans and programmes with users; and across the whole system, we are bringing together users, carers and communities to work constructively in equal partnership with commissioners and providers to shape policy and practice.
The Embedding Partnerships programme in North West London is a shining example of how this form of co-production makes a real difference to the lives of the participating individuals (both professionals and lay partners), to the organisations involved and, ultimately to residents across the whole of North West London who benefit from more integrated services to better address their needs. Involving lay partners in the co-design and co-delivery of Whole Systems Integrated Care has effected real culture shift across system leaders in health and social care: “right from the beginning, lay partners were in the room, and that changed the whole tone… The way we thought, the way we worked together…” says Robyn Doran, Chief Operating Officer at Central and North West London Foundation Trust. Martin Smith, Chief Executive at Ealing Council notes that “lay partners [play a key role in] acting as our conscience and growing the ambition, so there is the prospect to do something really different here, founded on collaboration…”
Embedding Partnerships has seen significant results in terms of breadth and influence, but a large part of the value has been the opportunity for lay partners and professionals to collaborate, learn and grow together in a unique environment, developing new solutions to long-standing problems.
Encouragingly, not every local authority in Denmark is like Kristian’s. In fact, at PPL we hosted a study tour recently for the Mayor of another local authority in Denmark and his delegation of local councillors and heads of services. While they were here, they met team members, including lay partners, from Embedding Partnerships and learned more about how it works in practice. They were truly inspired by the way in which the relationship with users had successfully been transformed in North West London. Moving from seeing users simply as recipients of services, professionals are now engaging in ways which, at its most fundamental level, recognises users’ experiences and expertise as a resource and a driver for change.
Kristian’s exclusion sparked a massive public debate in the media and all over Denmark. Most agree that Kristian has been treated unfairly on a personal level. Many argue that Kristian, rather than being excluded, should have been key to the debate precisely because he has unique experiences as a person using services, in order to increase the chances of securing better outcomes for those the local authority services. And some, like the Danish delegation of local leaders who came to London recently, recognise that there is much to learn about how to work with people who use services in a new way from the growing number of people in the UK who are empowered to take an active role in co-producing health and wellbeing for themselves and their communities.