Involving people in their own care

The Coalition for Collaborative Care is in an innovative partnership of people and organisations across health and social care, community and the voluntary sector in the UK which is committed to achieving better care and support for people living with a long term condition, by involving them in their own care, Sue Denmark told the conference.

Sue Denmark
Sue Denmark

“People with long-term conditions need a better deal from the health and care system – changing the way that they are supported is long overdue, she said, speaking on “Collaborative Care.”

“We must find a better way to ensure that people have the right support, knowledge, skills, power – and of course confidence – to do this and live the lives they want.

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“The Coalition for Collaborative Care provides an opportunity for new ideas and ways of working in managing people’s long term care. It represents a different paradigm and a mindset shift – from improving services to improving lives.

“We are about building community capacity, support for self-management and people taking control. We look at the way services are organised and joined up, the way professionals are trained and the way the system supports new ways of working.”
Speaking on “Collaborative Care,” Ms. Denmark, said one in four in the UK – 15 million people – were living with a long term condition, and were spending a large amount of their own time managing their care and support.

People with long-term conditions need a better deal from the health and care system – changing the way that they are supported is long overdue.

Their care costs about 70% of the NHS budget, but too often their care was done “to” them and not “with” them.

The Coalition, which is hosted by the NHS, was launched in November 2014 with about 20 partners, who supported and contributed to its aims  It now has 47 partners, 1800 members/followers, 28 co-production group members and a ‘hub’ team of 6 WTE staff.
The Coalition brings together people, including people with long term conditions from across the health, social care and voluntary sectors that are committed to making these changes a reality.

A critical part of the way the coalition works is through ‘co-production’ – ensuring that people with long term health conditions, health and social care professionals, carers and charities work alongside one another to co-design services and support.

Ms. Denmark is a member of the coalition’s ‘Co-Production Group,’ which brings together people with unique experiences and perspectives on living with long term conditions. Each member is an ‘expert by experience.’

The Co-Production Group has a number of core members who meet regularly and a series of flexible members who can offer specific expertise and involvement when required.
Ms. Denmark said that people with long term conditions were the biggest users of NHS services and the largest part of the health services budget was spent on their support. Yet they only spent a few hours per year with health and care professionals. The rest of the time was spent self managing their condition.

“We want to change the mindset, attitudes and behaviour of people and families. We are staff and people in local communities and we believe that by acting together we can be more than the sum of our parts. “

“We need a major re-design of current approaches. This requires many changes across the health and care system – from the way professionals and people interact in face-to-face consultations, to how professionals are trained and what support people can tap into, including provision for carers and family members.

“It had become increasingly clear that the cultural, practice and system changes needed could not be brought about by people and organisations working on their own. We needed to bring together people with the range of experiences; skills and influence to have a major impact on how things work at all levels – practice, system and policy – guided by the experience of people with long-term conditions themselves.

Crucially, people with long-term conditions play a central role in our decision-making and the work we do.

“We set up the Coalition to speed up progress, because not enough was happening to make person-centred, collaborative care the norm. We know that a major change in our approach is necessary. We know how to make it happen and we have the evidence that it works, but the pace of change is too slow.

The Coalition includes those wanting to introduce person-centred, collaborative care to their lives and work, as well as those responsible for NHS delivery and development at a national level.

There are also major charities and voluntary organisations supporting people with long-term conditions; professional and leadership bodies in health and social care and leading development agencies.

“Crucially, people with long-term conditions play a central role in our decision-making and the work we do. Our partners all make direct contributions and take action to make person-centred care the norm.

“To bring about the changes that are needed, we support our staff, people living with long term conditions, their family carers, – and the wider community. We do this by providing tools, connections and support for those wanting to make a change and by raising awareness.”

Ms. Denmark said they promoted change through:

  • Workforce development – addressing staff training and promoting collaborative leadership.
  • Providing powerful evidence – linking things together, particularly around community and co-production.
  • Working out how to drive change in the system and working to influence positive change.

She said examples of their included exploring setting up a timebank linked to GP surgeries, with support from Timebanking UK, a Hub team supporting the Royal College of General Practitioners with a clinical network of champions for person-centred care, NHSE/hub team working with the Royal College of Physicians around co-production and person-centred care in hospitals, leadership for Empowered Communities programme and tools and publications on care and support planning – with the Alzheimer’s Society and the RCGP.

At community level they were working to grow new types of services and supports that provides ‘more than medicine’ and build social capital – including peer support, timebanks, coaching, mentoring, community connecting.

At the strategic level – they were involved in co–design, co- commissioning, co-delivery – with a focus on long–term outcomes, recovery and prevention.

“The lived experience is equal to other. Patient involvement is a great challenge for lots of people. They are often wary of patients and what they might bring, so we look at how services are organised.

“Our model moves away from seeing clients as deficits. I had MS and was ‘done to’ rather than ‘asked what.’ We look at people as assets.”