Living a full and happy life thanks to personalised care

Legislative changes at the end of last year mean that 100,000 more people are set to receive a personal health budget over the coming years.

With latest figures showing 88,953 people now have a personal health budget in England, in this blog mum Joanne shares the impact that this type of personalised care has had on her son, Tom.

Thanks to his budget, Tom can live a full and happy life, supported by personal assistants, in a way that works for him and his family.  

Tom, my son, is a 23-year-old young man, he has an amazing sense of humour and loves a bit of banter.  He is obsessed with premier league football and watches Wigan Athletic. He goes to the gym, is part of a gaming circle, attends a community art group and a media college.

As I write my story, Tom is out with a sewing group (Busy Bees) delivering handmade comfort bags filled with toiletries to the homeless. Supporting the community makes him feel good.

He also happens to have a number of significant physical disabilities as a result of a genetic disorder. He has a tracheotomy, is peg fed, is on ventilation at night and is a wheelchair user. He has 24/7 care needs. However, his needs are well managed in the community.

His medical condition doesn’t stop him from living a full and happy life – he has only had one hospital admission in the last 12 years.

We put this down to personalised care – he receives a personal health budget which means the NHS provides him with an amount of money to support his health and wellbeing needs – planned and agreed between him and our Wigan NHS team. It allows him to manage his healthcare and support such as physio, treatments, equipment and personal care, in a way that suits him and our whole family.

Tom’s personal health budget funds 2:1 support each week day. A diverse team of personal assistants (PAs) keep Tom healthy and safe, enable him to be independent, be part of his community, to follow his interests and be kept busy.

It does take more work to manage his team of staff ourselves but we are able to recruit people who are appropriate and ensure they come when we need them to come and for the length of time we need, adapting and responding to Tom’s needs.

We always knew his team was great but last summer, when he had that one hospital admission, the nurses were really impressed by the level of care and support his PAs provide. This was a real boost for me. I have three young grandchildren now and having the confidence in Tom’s staff team has meant I can spend time with them.

What we’ve learned is that it’s important to be a good employer to retain staff (one of our PAs has worked with Tom for 15 years, and several for over 5 years). Because of Tomʼs NHS funding, we are able to differentiate pay, paying more to those taking more responsibility. We always pay on time, and ensure our staff take all the holiday they are entitled to. We have also had lots of advice and support from Embrace, an organisation that supports people with disabilities and their families. Tom and his PAs are giving back by volunteering with Embrace one day a week making courtesy calls to people. I’m really proud of all the good work Tom and his staff are doing, he’s achieving so much.

I frequently hear people say there’s nothing out there for people like Tom, but I don’t agree – the key is good community connections, you need to be supported by people who can help you make the most of every opportunity.

I wanted Tom to benefit from a holistic approach, where care was centred around him, not his illness; a personal health budget has given him, and our family, that control and happiness. And for that, I am grateful.”

Across Greater Manchester, 3,741 people get a personal health budget. The team there are working to ensure these people all have as positive an experience as Tom and his family, and that personal health budgets are supporting them to lead good lives – whatever that means to each individual.

Further information:

Joanne and Tom

Joanne Barrow lives in Wigan, Greater Manchester. She is the parent to three adult children. Her youngest son Tom has a personal health budget which she manages. She is chairperson of Embrace Wigan and Leigh, an organisation which provides support to disabled people and their families. Through personal experience, Joanne believes that personalisation has been extremely positive both for her son, and for her family