The power of personalised health and care

As a high functioning Autistic, Jennifer’s had a personal health budget for about a year. Here she describes her training at NHS England’s Peer Leadership Academy and the important contribution that people with lived experience can make. 

The last month passed in a flash as I found myself travelling back to Loughborough for the latest stage of NHS England’s Peer Leadership Academy co-produced by PeopleHub and NHS England.

Considering how surprised I was by the first session, I had less expectation and more anticipation about what might take place this time around. We had a broad outline, but given the unique nature of the experience, shaped very much by the contributions of my fellow Peers, it was impossible to guess just what could unfold.

In the first two sessions in May the focus had been on introductions, knowledge sharing and understanding just what Personal Health Budgets and Integrated Personal Commissioning are.

This time around, individuals told their own stories to the group, firstly as a means of receiving feedback on how we all did, and also for us to understand more about each other’s own experiences. The diversity of the conditions was vast, including a range of progressive diseases, different accidental injuries, as well as those who care and advocate for family with similar conditions.

The overall aim of the Academy was becoming clear. We were beginning to ‘get’ just how powerful a change the personalisation of care and health was going to be. This was both in the differences it had made to us individually, in terms of control and wellbeing in our own lives but also how transformative and potent it would eventually become in the NHS.

Sam Bennett, the Deputy Director Personalisation & Choice for NHS England presented and answered questions about his team’s work in relation to our own lived experiences. I thought he answered them well and took feedback in good grace. It is a shame that other officials in many of our organisations are less willing to be placed in the spotlight as Sam was by us.

The last afternoon was particularly emotional for me. Hearing the stories of two others in the group, who dealt with more daily challenges than I do because of the physical nature of their conditions, made me realise that there was in fact hope to be held.

For me, much of the last five years has been about a day-to-day existence with little ability to make plans other than getting through the next 24 hours. Seeing the pictures of others who have lived with their conditions for far longer than me, who had set up companies and charities, travelled and developed relationships, had a profound effect on me. The emotion I had been carrying welled up and I broke down.

The experience was very cathartic and shared, as many of us carried similar burdens. These burdens are heavy but their constant presence anaesthetises you to them. A reminder can be like letting the dam go, and I had a good cry. I think that we bonded in a way that was quite unique.

Living with a long term condition which affects every area and the quality of your life is something you cannot comprehend until you have it. Despite the diversity, the similarities in the challenges we had faced and had overcome or were working on, were startling.

We realised collectively the importance of our contribution as peer leaders. Many in the room had overcome personal challenges and are pathfinders for others; forging ahead when what we needed or wanted was not available. Others of us were still finding our feet. Despite being something to be proud of, being an innovator can add to the isolation and loneliness that is already present with a long term health condition.

Integrated Personal Commissioning focusses on the need for peer support networking, and that afternoon showed me how often peer support can be aligned along geographical proximity, or diagnoses for example. The real difference is made when peer support is less contrived and people who have deeply personal shared experiences are brought together with sensitivity.

I am so pleased to have been able to connect with my peers in such a way. It was a deeply moving experience, and one that touched me in many ways. I am still much further behind others whose story I heard that afternoon, and finding the strength to keep going when you don’t know what the end point might be is hard.

Seeing others being where I wanted to be, and hearing the insight they gained along the way reminded me, first to keep positive and second to enjoy what I am learning as I travel to wherever it is I am going to end up.

  • Applications for the next Peer Leadership in the Autumn are now open. For more information and details please see the peoplehub website.
Jennifer Layton

Jennifer Layton is a Fellow of the Royal Society of Arts and also a Fellow of the National Institute of Mental Health.

She works with the Derbyshire Autism Partnership Board as a member with lived experience, to help shape the work being done locally for people on the spectrum.

Jennifer also works with Derbyshire Healthcare Foundation Trust to train and raise awareness of Autism amongst their staff and is beginning a MSc of Mental Health Recovery and Social Inclusion in September 2017.

She also volunteers for Derby Museums Trust as a co-producer. As well as training to be a Peer Leader, she is also a member of the Derbyshire Personal Health Budget Peer Network and is working towards becoming a member of the NHS England’s Co-production Group.

Peers Leaders play a vital role in helping to co-produce key NHS personalisation programmes, such as Integrated Personal Commissioning and Personal Health Budgets, by providing the essential ‘lived experience’ perspective.