I was asked earlier this year to contribute to an exhibition on the history of learning disabilities in Leeds. This involved being interviewed about the support that had been provided for me by Leeds Mencap – a brilliant local charity. When George was born he had all sorts of health issues associated with his Down Syndrome. We found the portage provided by Leeds Mencap and the Hawthorn Nursery to be fantastic. They provided opportunities to build George’s strengths and assets, and our relationship with him. Using Makaton to communicate, stickers to aid reading, matching pictures…it all came back. Then I found myself talking about what it was like to just sit with the parents of other children with a learning disability while the children were in the nursery. To be with people like yourself and talk about things candidly – from benefits to social attitudes, our hopes and our fears, to the often comical reality we faced every day. Suddenly, I welled up and couldn’t speak. The power of that peer support had got us through some tough times and meant a lot, even a decade later.
I was reminded of that this week. I have written often about the power of seeing people as assets not problems. This must be at the heart of the future of the NHS. We are now in an environment where strategy and delivery must be centred around the needs of people and their lives, not our institutions. This will focus on older people, those with long term conditions and children – because that is where care is now provided and the money is spent. We need to enter a period where commissioners and providers work together to understand that for many the idea that they will be discharged from care is not a reality.
In this world, I believe it is only right that we begin to ask what people can do for themselves and each other – when properly supported to do so.
This was very powerfully brought home to me this week and I continue to be humbled by the staff and volunteers in the trust and their care, commitment and compassion. The fantastic team who co-ordinate our programme invited me to meet about 20 of our Expert Patient Programme tutors. These are a group of people living with mental and physical health challenges, including chronic pain. I arrived as they sat around a table and spoke about the impact that being a tutor had on their lives in the last year.
“I hadn’t been out of the house for 8 years. Now I am supporting others to stay well”.
“I have got my life back on track and for the first time in years know how to have fun”.
“My mum said she was glad to see the real me again”.
“This time last year I stepped in front of a car because I wanted to die. Now I know how precious things are and that I can help others too”.
Just writing this makes my hairs stand on end. Being in the room, I was provided some of the most powerful testimonies on the impact of our services I have heard in one concentrated session. All underlining the power of people and professionals working together. A confident and feisty bunch transformed from when they started was what they told me. Thanks to each of them.
I later received an e-mail from one of the group setting out how their experiences were not the norm across the system and how it is still for some people a struggle to be heard.
“Since starting with my condition, I have had problems with the care, support, and treatment that I have received from my Consultants, GPs and other health care professionals…… Communication at the moment is a key thing ….. Patients are made to feel that they don’t know what they are talking about, and doctors know best; even though the patient is the person living with their condition on a daily basis and they know their condition.”
As a result, we are looking at how the group come and work with us on service developments and how we ensure that supported self care is the norm. This is a strong feature of our services in some areas but elsewhere in the system we need to do better.
We are also working with commissioners on the implementation of all of the work done with the National Endowment for Science, Technology and the Arts on People Powered Health. Leeds was one of 6 area working to look at a range of supported self care models that, according to the final reports:
“As a result, there is a reduction in the cost of delivering healthcare of approximately 7 per cent of the commissioning budget – through decreasing A&E attendances, reducing hospital admissions, reduced length of stay and decreased patient attendances. Putting this into practice would save the NHS £4.4 billion across England.”
Read the great reports on the business case and practical tips here
Of course, not everyone can self care. Vulnerable people sometimes need more. We often hear about the terrible experiences that people have. Here is another perspective, again from this week.
Our clinical lead for adult services, spoke at the Quality Committee about the district nurse she was out with visiting a frail elderly man at 11.00 in the evening and spending time with him to ensure he was safeguarded. The nurse provided his bed time visit and was there to see to his needs and make sure he got to bed safely. She had concerns he was not eating or drinking and was in conversation with social care. The nurse weighed him each night to track his weight. As he rose to get to the scales, he stepped forward and hugged her tightly.
She then patiently waited while he had a drink and a snack, ignoring the pressure she must have from the visits to palliative patients yet to come, chatting about how he was and his fears for his health. She then tucked him up in bed, wrapping him up with great care and tenderness to make sure he was warm and safe.
We should say thanks to all the twilight and night staff in community nursing – I know this is a regular and consistent picture where staff show great compassion and care. I hope the additional winter team we have put on in Leeds helps ensure we have the capacity to ensure this is always the case. We are also over-recruiting to district nursing in a bid to build resilience of this under-appreciated and sometimes overlooked vital service. These experts in managing risk, health and social issues are – with their therapy colleagues – another vital piece of the future of the NHS.
We know the world will be different in the future and that the culture in the NHS will “need to change”. That change needs to be specific. It needs to be much more about how we treasure the compassion of front line staff given the time to care while opening ourselves up to harnessing the assets of patients, carers and families. It works and the results can make your hair stand on end.