Have your say on Personal Health Budgets

As the first national survey for people receiving personal health budgets is launched, NHS England’s lived experience lead, explains how hearing people’s experiences can have a real impact on national decision making:

NHS England’s Personalised Care Group is focused on embedding personalisation into people’s experience of healthcare, social care and education.

This is so the care they receive meets their individual and often complex needs, and pays close attention to what matters most to them.

We all know that achieving this shift requires a significant culture change in the way the NHS currently operates, since it is a system that was designed 70 years ago. So it makes perfect sense that the Personalised Care Group has taken an innovative and holistic approach to genuinely co-producing the future of personalised care with people who have lived experience of the changes we are trying to make.

The Group has a committed, informed and collaborative Strategic Coproduction Group who work closely with the team. This helps ensure that what is being offered through personalised care is clear, empowering and makes sense to people.

They bring to the table invaluable and experiential learning that balances what matters to system leaders and commissioners with what matters to people. The Group also has five NHS England Lived Experience Advisors whom I support, which further embeds the voice of people with lived experience into development of policy, strategy and good practice.

The success of our coproduction approach is down to a number of factors, which can serve as helpful pointers for other organisations that are working to embed co-production. People often hear me say that whilst ‘we are all equal as people, we are not equally able to contribute if we don’t have the necessary knowledge, skills and confidence.” It’s absolutely crucial to make a significant investment of time and resources so that people are enabled to contribute ‘on a level playing field’.

So how does our approach genuinely make an IMPACT? 

Insight: The Strategic Coproduction Group and Lived Experience Team provide invaluable insight for the team, so that colleagues understand what matters most to people about personalised care. The team has developed a personal health budget experience survey to gather information from people across the country to understand their experience of personal health budgets.

Modelling: Fundamental to our co-production approach is modelling the changed relationship between people and the NHS that is central to personalised care and is necessary to embed real culture change. The Strategic Coproduction Group proactively shape and influence key decisions and have led important developmental work including the ‘Key features of personalised care and support planning’.

Proof: We all know how important it is to gather proof of what works, so the Lived Experience Team are leading work to build up a network of over 200 personal health budget holders who are happy to share their experiences of personalised care. This will help the team to continually update case studies and the evidence for personalised care. Who better to do this work than people who have lived experience themselves?

Active Champions:  In a recent survey, 54 per cent of people who didn’t yet have a personal health budget said that, more than anything else, they wanted to hear from another personal health budget holder. That’s why the Lived Experience Advisors are actively connecting people at a national and local level to share the difference a personal health budget has made to their lives. We know that hearing from people who already have a personal health budget can help other people feel confident to do the same, so we’re running an event on Wednesday 9 May when we’ll be launching a new hashtag: #myPHBstory. This will be a way for people to share their stories of having personal health budgets. For more information and to download an expression of interest form, go to the Peoplehub website.

True to purpose: we help ensure that the team’s work stays true to purpose.  We help colleagues remember why we do what we do. The Strategic Co-production Group recently developed the ‘Personalised care key features’ that describe what a person would expect to see if they were receiving personalised care. By using these key features as personalised care becomes more mainstream, we are helping to ensure that what is being developed remains value-based.

There’s a line in a song which says ‘it’s not what you do, it’s the way that you do it’, and for me this really epitomises the work of the Personalised Care Group and our approach to co-production.

We are passionate about ensuring that personalised care works well for people, because we know the difference is has made to our own families’ lives.

Jo Fitzgerald

Jo Fitzgerald is the Lived Experience Lead for the Personalised Care Group at NHS England.

Her role recognises the importance of co-producing and co-designing personalised care and raising the voice of people with lived experience at a national, regional and local level.

Jo’s life was profoundly transformed when her eldest son, Mitchell, was born in 1992 with a severe learning disability and complex health needs. The experience of being Mitchell’s mum has largely influenced the direction of her life; it has shaped her beliefs, values and life choices.

Mitchell became one of the first people in England to have a personal health budget which enabled him to live at home and lead a full life until his death in March, 2015.

Jo is a qualified counsellor and was awarded an MA with distinction from the University of Manchester in 2008.

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