Julie Fenner, Petrea Fagan, Anya De Iongh and Lisa Kidd
For people with long term conditions, living with their symptoms and adjusting the way they live with them is part of everyday life. Appointments with health professionals represent only a small proportion of their time and the rest of the time they are ‘going it alone’. But how realistic is it to expect people to play an active role in managing their own health and to make difficult lifestyle changes without support?
Simon Stevens, chief executive of NHS England, was recently described by the Guardian as ‘trickier to pin down than his predecessors’. Last week Mr Stevens met with National Voices members to discuss the future of the NHS and the role of voluntary organisations in health and care. So did we manage to ‘pin him down’?
Carol Pearson is a retired chartered accountant. When her full-time career was cut short by complications from severe endometriosis, she had to re-create herself and she now works as an audit chair for NHS Crawley Clinical Commissioning Group. Carol helps as a research assistant at Royal Surrey County Hospital, is a trustee for Endometriosis UK and co-leads endometriosis support groups in Brighton and Guildford. In 2013, Carol shared her story in a talk entitled ‘Rewriting Red Riding Hood’ at TEDxBrighton.
This is the second of our case studies showing the difference Wellbeing Our Way is making for some of the organisations involved in the programme. Here, Lee Marriott-Dowding reflects on how new opportunities for partnership working are supporting her to develop the James Whale Fund for Kidney Cancer’s approaches to working with people with long term health needs.
Sam Peaceful-Day lives with Transverse Myelitis and is supported by Anya de Iongh, her self-management coach, to manage her health needs and live well.
Here, Sam and Anya reflect on the difference health coaching has made for Sam’s life.
My new doctor gave me a leaflet. I ignored it, just like I had ignored the depression I was in, due to years of pain and fatigue caused by Transverse Myelitis which makes me one in a million! It was a rare virus that affected my nervous system. But like millions of others my days had become disorganised and shorter - my life mostly put on HOLD.
Today the Integrated Care and Support Pioneers have their inaugural workshop. Anya de longh will be talking to representatives from the pioneer areas about what personalisation really means from the perspective of someone living with several long term health conditions. Here, she shares her thoughts:
It is a real privilege to talk to the integration pioneers about personalisation and what that means to me, as someone who lives with several long term health conditions.
Everywhere I go, people are talking about building the House of Care and putting in place collaborative care and support planning. It all looks so simple doesn’t it? Ask people to set a goal, tell them what local support is available to help them get there and you’ve got a basic care plan. Add in a few pieces of information (medical data and details of who to contact in case of emergency) and there it is - job done.