As part of a social media week focusing on Personalised Care, a mother and hospital paediatric neurodisability consultant gives her views on the Universal Care Plan:
I have seen a lot of ‘plans’ come and go over the last 18 years since my son was born with complex disabilities.
In the early years, full of zeal, I even volunteered for consultation events on these plans. But after a while I gave up. There was a sense that the decisions had been made and the ‘consultation’ was purely a cosmetic exercise to tick the public engagement box.
I recall one frustrating event, held at an expensive hotel, where we were asked specific closed questions and there was no scope to voice an opinion. At another we were invited to comment on an initiative with a turquoise plastic box file – apologies to anyone reading this who was involved – it was a good colour at least. I had barely slept for 3 years, often smelled of vomit (my son’s, not my own), was attending multiple hospital and therapy appointments, trying to work on-call shifts and there was no practical help whatsoever available for families with young disabled children. I was unconvinced the answer to any of our problems was a plastic box file. The box, along with many other initiatives, came and went. Nothing changed.
We had no choice but to get on with life and discover for ourselves the things that helped. Most useful ideas did not come from professionals but were stumbled upon by accident or gleaned from other families.
A brilliant stumble occurred years ago in Tesco, when I was spotted, wrestling with a baby, a trolley and supervising my 6-year-old pushing my 5-year-old’s wheelchair. You can’t push a wheelchair and shopping trolley at the same time. Maybe it was for the protection of their other customers and breakable stock, but they offered me something called an ‘assisted shop’. It made such a difference and instead of the weekly shop being a terrifying ordeal, we looked forward to seeing a lovely assistant called Brenda each week.
The things I learned from other families with Lived Experience are too numerous to list but included a wheelchair that enabled us to go on the beach, a more suitable school and, eventually, Continuing Healthcare funding.
There is, of course, far more to the use of Lived Experience expertise than I have described. These are tiny examples of how actions named in the plan work in practice but illustrate their big personal effect.
This is why I do have hope for Universal Personalised Care where other plans have made little impact.
Many of the components originate from people with Lived Experience or from within communities. There has been true co-production of the plan involving people who have been on the receiving end of the system as well as voluntary sector and professional body consultation. At last we may have come up with something practical that enables professionals to work together with people to get to the root causes of their difficulties and come up with workable solutions, rather than wasting resources.
Our personal health budget has been life changing, as it has for many others with severe or complex health needs. The uptake of personal health budgets is accelerating and I hope this will be further enhanced by this plan. But is not just people with the most complex needs that gain. Initiatives like social prescribing and supported self-management can offer benefits to people with a wide range of difficulties that traditional medical models of care often struggle to impact up on.
My sense of optimism is shared with other professionals who have seen these initiatives in action and most of all with people like us who truly understand the benefits.