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In the latest of our series of blogs looking at personal health budgets, we hear from Kevin Shergold, who uses his budget to live at home with his family, despite needing 24 hour ventilation:
When I came out of hospital after having a tracheostomy three years ago, it was assumed that I would need to go into a residential nursing home so that my need for 24 hour ventilation could be safely managed. Believe me… that was never going to be an option.
I was much more concerned about how I could get back to work and on with my life, than having to be cared for in a nursing home. Thankfully the opportunity to have my own Personal Health Budget has made living at home, with my family, possible.
I have a long term progressive condition called Cervical Myelopathy, which was diagnosed in 1987, and now means that I am quadriplegic, and require 24 hour nursing care. I am luckier than most, as my wife is a very experienced nurse with 38 years of experience supporting people with complex health needs, so if anyone was going to take this on, it would be us.
Quite honestly, our experience with the personal health budget so far has had ups and downs – it hasn’t been plain sailing. Because my care package is so large, we decided to go with a third party budget, meaning another organisation specialising in care has taken on the budget and managed the employment of care staff on our behalf. In theory this should work fine, but there have been a few issues with the particular organisation we’ve been working with, so we’re just about to change over to another arrangement which we’re already feeling much more positive about.
The new organisation has already been able to work with us to put together an excellent new care and support plan, which takes account of all of my health needs, but also what our needs are as a family so that we can live our lives together, better. We are accustomed now to having people in our home all hours of the day, but it’s really important that they realise that this is our home. We’ve had nurses who have told us we’ll need to move our furniture or make adjustments, instead of understanding that we need people to be able to work around us, and how we’ve chosen to live our lives.
We are very optimistic people, so for us we’ve seen getting used to this new plan, simply as a steep learning curve, and it’s great that there is flexibility in having a personal health budget to find the level of responsibility and choice that you are happy with, and review whether that’s working.
There are different options for managing the budget. People can receive a direct payment from their CCG or ,like us, you can arrange for a third party to manage it on your behalf. There’s also the option of a notional budget where the clinical commissioning group (CCG) keep the money but organise care based on what’s been agreed in partnership.
In fact, I am just about to embark on a new venture as a disability consultant, as I feel the knowledge and experience my wife Ann and I have gained over the past few years, puts us in a great position to be supporting other people who have similar health needs, particularly those who require ventilation as I do.
We’ve recently joined our local peer network for people who hold a personal health budget, which led to being invited to the national peer group run by peoplehub, and it’s great to see how people are linking up to share their stories and learn from each other.
- You can follow Kevin’s journey managing his personal health budget on the peoplehub website, and find out more about his experiences as someone living with a tracheostomy on www.kreass.net
- Peoplehub is a national organisation bringing together people who have direct experience of managing a personal health budget.