By Colin Royle, Personalised Care Manager (Lived Experience), NHS England
In 2008 I took on a role of caring for my father, Malcolm. He had been in hospital on a mental health ward for a number of months and a presumption had been made by healthcare staff that he would spend the rest of his days in a nursing home.
He had been placed under section 3 of the mental health act in February that year. In just a brief, two-year period his world had transformed from one full of plans after taking early retirement, to one he barely understood anymore. He had been diagnosed with right frontotemporal dementia, which is one of the rarer forms of dementia and often affects people at a reasonably young age. My dad was only 62 years old when he received his diagnosis and was a fit and healthy man.
As a family, we wanted to make sure that he received the best possible care and support so made the decision to bring him home and take on a caring responsibility ourselves. This wasn’t easy as the only support we had was through a daycentre. Then we were approached about being involved in a small pilot in 2009. We were introduced to the concept of a personal health budget. We could manage the care my dad received ourselves as a family, and spend the money in times and in ways that made sense to him, as agreed in his care and support plan.
The personal health budget proved a tremendous success and life changing for my dad and also ourselves as a family. We employed our own PAs to support him in his own home – people he liked and trusted and had things in common with. Over time, I wanted to tell more and more people about it and the difference it had made to our lives. I wanted other people to have the opportunity to benefit in the same way.
By the end of 2009, I was so sold on the benefits my dad was receiving from having personalised care, that I wanted to work with the system to really help ensure that other people got the same experience that we had. People with lived experience have such a vital role to play in developing services and national policy to ensure that they are fit for purpose.
“In theory there is no difference between theory and practice. In practice there is.” (Yogi Berra)
Fast forward several years and I now work in the Lived Experience Team within the Personalised Care Group at NHS England & NHS Improvement. Personalised Care has become one of the 5 main practical changes to be delivered in the NHS long-term plan over the next 5 years. The goal is for at least 2.5million people to benefit from personalised care by 23/24. But in order to ensure that this is done well, it needs to coproduced with people with lived experience both nationally and locally.
That’s where Peer Leaders come in. A Peer Leader is ‘a person with lived experience who is committed to working collaboratively with the system to shape and influence how health and care is delivered.’ It makes sense that the only way to ensure that our NHS meets everyone’s needs, is to involve people who use our services, and especially those who are living with a long-term health condition, disabled people and family carers. So, 2020 sees the launch of an exciting and innovative new programme called the Peer Leadership Development Programme that aims to develop 500 Peer Leaders by 2024.
The programme has three main aims:
- To tell people what personalised care is and how people in England can benefit
- To develop new Peer Leaders who can support the development of personalised care
- To develop Peer Leader Facilitators to provide leadership and support to Peer Leaders
The course is delivered in bite-size chunks using language that is easy to understand. We’ve also included videos with sub-titles and transcripts. There are plenty of opportunities to discuss your thoughts and experiences with other learners and to ‘like’ and ‘comment’ on what you’ve heard. You will also hear from people who’ve experienced the benefit of personalised care and inspiring stories from Peer Leaders who are actively influencing how personalised care is developed and delivered.
The programme is now live, so if you are interested in becoming a Peer Leader, or simply want to learn more about the health and care system, and in particular about personalised care, then why not sign up on Future Learn.
We look forward to seeing you over on Future Learn.