This week National Voices, in partnership with other health and care charities published Personal Budgets as an integral form of NHS care: A discussion paper which argues that the use of personal budgets in health care supports the values of the NHS. Colin Royle, one of the peoplehub directors, shares why he supports this important new publication and welcomes a more informed discussion about the introduction of personal budgets to the NHS as a way to offer more choice and control for people with complex health needs.

Peoplehub CIC is a network of people with lived experience of managing personal health budgets, either for themselves or for a family member with a long-term condition or disability. As people who have made personal health budgets work well, in often very difficult circumstances, the media attention on personal health budgets earlier this year was most unwelcome. The suggestion that we would splash public funds on ‘luxury items’ was frankly very hard to bear, especially as some of us have struggled for years to get the right kind of quality care that we, or our loved ones, need. While caring for my dad, who had a rare form of early onset dementia, I never once felt lavished with ‘treats’. Every penny was spent with careful and thorough consideration of finding ways to keep my dad safe, cared for and enabled to live life as he chose right up until he died earlier this year. Despite the severity of his condition, he was able to live with us, his family, until the end, and sadly that isn’t an option for many people in his shoes.

Personally, I’m really pleased to see this discussion paper from National Voices, and equally happy to be part of ongoing conversations about the future for personal health budgets. I understand that people have concerns, which aren’t helped by misleading headlines, and it’s only right that we should be part of those discussions. Many people who have struggled with long-term conditions for many years have done so without involvement in how their own care has been designed and personal health budgets have enabled them to have more choice and control in their lives. Many of us have helped road-test this challenging culture change for the NHS over the past few years. We recognise that the prospect of giving people NHS funds and managing money themselves might sound unusual? I’m well aware how much that shakes the foundations of the health service and challenges the belief that the professional alone knows best. But honestly, I’ve seen how it works – not just for my family but for many others. Not just for those of us who are the most able or shout the loudest, but with the right support I’ve seen it work for many people who have struggled to manage their condition any other way – people who would have ended up unwillingly in residential care, often miles from home.

Professionals only ever get a soundbite as to how somebody’s condition really affects their life on a day to day basis. As a surgeon once said to me “caring for somebody with such complex needs cannot be done remotely – it needs to be monitored day to day by the people that know them best” So for those of you who think that personal health budgets could be a way of ‘offloading responsibilities’ or ‘dismantling the NHS’, whilst I completely understand those concerns, I urge you to listen to people who are most affected by these changes to the NHS  – those in receipt of care. If I hadn’t seen the way it transformed life for my dad, and the many other people I’ve met through peoplehub, I might be asking the same questions. How do we know it’s a good use of public money? What if people make poor decisions? What happens if someone wants to spend the money on something radical? How do we balance giving people choice with keeping them safe?

All I ask is that you don’t jump to conclusions based on some poorly researched news stories. Please, ask your questions, and we’ll be very keen to join you in the conversation.