My son Andrew was aged three when he had a minor operation which left him with a severe brain injury. The NHS care could be very rigid and left us with limited respite – now 19, Andrew has a personal health budget which has made a huge difference to all of our lives.
Our initial experience of standard NHS care was good: I was able to go back to work part-time and we had a very good nurse providing respite and overseeing healthcare workers. We wanted the NHS to continue in their provision of night care for Andrew because of their expertise in this area but when his nurse had to stop working after an accident and there was reorganisation of the PCTs in our area, things became difficult – especially as he moved towards adult services and the use of agencies. Over a period of around nine months, Andrew had the same number of staff caring for him as he had in total in the previous 10 years. We often didn’t know who was going to turn up, with staff sent to care for him who had not known him long enough to understand him and his needs.
The stress on the whole family was enormous, with a detrimental effect on Andrew’s health.
At that time, we really felt that there was nothing on offer for someone with complex needs like Andrew – some basic care was provided, but we wanted him to have more of a life, doing the things he wanted to do.
We went to a talk about transition, where we heard someone discussing personal health budgets. Jo (Fitzgerald, of peoplehub) helped us from thereon in with the application. We were helped to put together a health plan – we’d employed somebody privately in the past so we weren’t put off by that, and management of the funding by a third party in terms of employing staff, paying wages etc. made things easier than before.
Andrew was able to choose staff he liked and got along with – and the fact that we were employing people directly meant we were able to put together a team of staff with complementary skills, who got on and worked well with one another. We could also arrange our own training for staff – an independent trainer provides them with a steer on meeting Andrew’s specific needs.
What we found most appealing was the flexibility it gave us in terms of the day-to-day practicalities. We could arrange the rotas around Andrew’s life, choosing staff to support him who enjoy specific activities like football or going to see Cheryl Cole in concert – or those who have particular skills like ICT or massage, as well as helping to keep him safe and healthy. At short notice we can ask one of the staff to stay on for a little while, for example, if his dad has suffered a migraine or Andrew is unwell. Any awkwardness with extended family has also now gone away, as everyone knows each other.
We also put the personal health budget to good use to buy things like infrared lined clothing, which help Andrew’s circulation – he sleeps better as a result. We also used it to buy an iPad: he uses a special app on it as a communication aid and we can see videos and photos of his activities on there as well as use it to record mini-training videos for staff!
The personal health budget has meant that the quality of Andrew’s life has changed significantly – he is much happier and more positive with real health improvements. We’ve even been able to buy him the puppy he has wanted for 14 years – prior to getting the personal health budget, we wouldn’t have had the time or energy. That too has the benefit of getting him out more and, since she is so cute and friendly, everyone stops and chats with added benefits for us all.
One of the things that has changed dramatically is that we now all feel much more secure, in control and able to plan for things. The personal health budget has helped staff to better understand Andrew and so cater for his needs effectively. The consistency in his care has made a huge difference to Andrew’s life – and to ours.