Victor & Jo’s story

Photo of Victor and JoVictor

Victor is 22, and currently lives at home with his mum and little sister. Fifteen months ago he had a psychotic episode which resulted in a hospital stay and left Victor feeling more reserved and “less enthusiastic about life”. He describes himself as a home boy who prefers relaxing with friends and family to travelling, and has a real passion for making music.

Things were difficult when he was discharged from hospital and he was grateful for the help that he got from the early psychosis team.

“They reassured me that I was still a person, that things would get better, that I’d been through a tough time but I could still get back to enjoying life again”.

It was his support worker, Jo, who first mentioned the possibility of a personal health budget, and Victor was “happy and surprised” by the idea. He viewed it as a potential boost to get his life back on track by looking at exactly what he needed to be coping again.

While he was in hospital he’d really benefitted from the gym. Many people struggle with their weight when they start on medication, but thanks to regular sessions with the gym instructor Victor left hospital feeling fit and looking healthy. He even won a special award as he’d worked so hard to improve his muscle strength. Now he was home his personal health budget could fund ongoing gym membership which obviously helped him stay well.

During the chaos of becoming ill Victor had moved out of home to live elsewhere, and ended up losing all his possessions, which added to the stress of recovery. Most disappointingly he had lost his laptop, which previously he’d used to make music but also to watch films and keep himself entertained in the evenings. The personal health budget was used to buy Victor a laptop which he now uses to produce music and stay connected to people. He has a part time job in a local pizza delivery outlet, but as he’s only able to work limited hours it would take a long time for him to save up to buy a replacement himself.

Finally the budget is helping him to access driving lessons. Personal health budgets present an opportunity to look not only at the needs of the individual, but at how that affects the whole family.  Victor’s mum is in poor health herself and is unable to work, and his little sister is still at primary school, so getting around is an issue. Learning to drive will help Victor to become more independent, but will also allow him to support the rest of his family so that they are less reliant on external help.

“I don’t like to think about what happened to me and why I ended up in hospital, but the personal health budget has given me a nice cushion. It’s hard to put into words how I feel about it, but it took the pressure off. I could think about what would help me to be ok again and there was the money to actually do it”.

Jo

Jo works for the early psychosis team as a recovery worker. She views her role as supporting people to get back to daily life – whether it’s working, volunteering, or keeping busy with activities. There’s also a health promotion aspect to her job, as she believes that all too often people focus on the mental illness without thinking about someone’s overall wellbeing and health.

“My role is recovery focussed, and that starts with hope. Helping people set realistic goals, so that they can see that it’s possible to get well”.

Part of her role is to support people think through their support plan – work out what they want to achieve and how the personal health budget can help towards their recovery. It gives flexibility in a system that otherwise doesn’t allow people to make real choices.

“It makes those stepping stones between illness and recovery possible. It’s ok coming up with exciting plans that will help people get back on their feet, but if there isn’t the money to make it happen that’s just frustrating”.

Getting the laptop seemed an obvious solution. Victor doesn’t really talk much, and he’s not keen to talk about what happened to him, but he can express himself through his music.  Jo could see what an important outlet it was for him and how much he missed it.

“As he said himself, he doesn’t always sound too positive about things, and he doesn’t recognise how far he’s come and how hard he’s worked to get his life together for him and his family”.

It’s quite common for people to have a first psychotic episode just after starting university or early on in their career, and it can completely turn their world upside down.

“It’s such a tough thing to go through, and suddenly they have to reassess what they’re doing, whether they’ll cope with their course or if they’re doing something that will cause more stress. Often my job is helping people negotiate those difficult decisions about what to do now”

Of course the money spent clearly needs to show that it’s meeting health outcomes. This isn’t about making a wish list of things that would be nice or treats to make life easier. Sometimes that can be a tension as people have an idea how they want to use the budget, and that has led to some tricky conversations for Jo, which could potentially damage relationships. That’s one of the potential risks – and honest, transparent discussions are needed between patient and professional to ensure the personal health budget works well for the person and for the NHS.