In the latest of our regular blogs about Personal Health Budgets (PHB), Kevin Shergold shares his frustration at recent negative media coverage and explains how his PHB helps him live at home with his wife:
A few weeks ago personal health budgets were all over the media and, as someone who relies on one to live independently, it made me very cross indeed.
Most of the stories I read suggested that those of us getting a personal health budget are being lavished with cash to buy ‘treats’ and ‘luxuries’, which is far from the reality.
The media quoted a few of the more unusual things that people have spent their budget on which, taken out of context, might sound odd. From personal experience I know that when you understand the whole picture, these things sound like a completely sensible use of money.
I have a chronic, degenerative disease. I am ventilated and quadriplegic which means I require round the clock care, and that’s expensive. My personal health budget is large but that’s because managing a debilitating condition is complex.
If my family wasn’t able to manage my care at home then I would need to be in a nursing home. That’s the best option for some people, but it certainly isn’t for me and, as it would be more expensive, it’s not best for the NHS either.
My personal health budget has given us our family life back and it means that we don’t have to cope with a lot of well-meaning care staff who do their best to help but don’t understand how I like things. Just imagine if you had to share your home with people who move all your possessions around. It’s very frustrating at times!
I live in my own home with my wife, enjoying time with my children and grandchildren and receiving a high standard of care. Privacy is a luxury for someone with my health needs but at least now we get to choose the staff who come into our home and manage how they work with us.
It’s important to understand how the budget works – it’s not a pot of money I’ve been given to spend however I see fit. There have been careful conversations with health professionals and commissioners about my health needs and how the money will pay for meeting those needs in a way that makes sense for us as a family.
It isn’t new or additional money, it’s just a different way to manage the money required for my care. How the money is spent is agreed, accounted for and monitored by medical professionals.
What disappointed me the most about recent media coverage was the attitude of some of the senior health professionals who I saw interviewed on TV, as it showed a total lack of understanding about how personal health budgets work and why they’re so important for families like ours.
The PHB has given us freedom to live our lives as we choose – in a way that’s sensible and cost effective. Developing a severe disability might seem hopeless, but I want people to know that it’s possible to live a good, full, interesting life when you have the right support and choice.
If any of these health professionals want to understand personal health budgets– don’t rely on daft headlines that are more interested in causing controversy than explaining how it all works – come and talk to someone like me. Consider this an invitation.
He has the degenerative condition Cervical Myelopathy, which means he is now quadriplegic and requires permanent ventilation. He passionately believes that life can still be lived to the full, despite his disability.
Find out more about his experiences as someone living with a tracheostomy, and follow Kevin’s blog.