Introduction by Sally Rennison:
A couple of weeks ago, a mutual connection introduced the Patients Know Best team to Peter, believing that his vision to improve the experience of patients and their carers navigating the complexities of utilising a personal health budget would be of interest to us… and he was not wrong!
Patients Know Best was founded from our CEO, Mohammad’s, personal experience as a patient navigating a complex care pathway. This experience enabled Mohammad to know both, how this can be improved for patients and the important role the patient can play when they are properly educated and included in this pathway. Similarly, Peter’s personal experience resonated as someone wanting to improve a particular part of a complex care pathway, and we felt compelled to share his vision as others have shared ours.
For anyone with an interest in Personal Health Budgets, patients, carers or clinical teams, please find Peter’s vision, story and voluntary services to support improvements to this pathway below.
Peter writes in a personal capacity as a guest ...
Peter Glick – Parent, carer and researcher
The National Health Service in England has committed to delivering a Personalised Care policy and I believe that technology has a role here, supporting families to co-produce and manage their care alongside their local healthcare authorities. As part of this, I’m working at national, local and citizen levels to deliver change. With NHS England to co-produce their technology, with a Co-production Group I have co-formed to bring culture change to local healthcare authorities, and finally, performing participatory research with citizens so they can gain the support they need.
Personal Health Budgets – the What and the Why
When you are disabled, or, have a disabled child or other family member that needs a great deal of healthcare at home, NHS England can create a Personal Health Budget for you. This is where you decide your healthcare outcomes and a budget is set up to enable those outcomes. Sounds great. And it is. Instead of a care agency sending you ‘stranger carers’ of unknown skills, backgrounds and beliefs to your front door every day, you get to interview and decide who you allow into your home, and then you have control of what they do and how they do it.
A Personal Health Budget can be delivered in several ways. The method a lot of people choose is a “Direct Payment”, where the money for your care is paid directly to you and you decide how best it is spent.
Great, but . . .
A Personal Health Budget sounds great, and it can work like that, but gaining a Personal Health Budget can be a long, distressing process, and when you do gain one, overnight you change from being a carer to a care home manager – with little in the way of support and a great deal of new responsibilities and accountabilities. This is not the way NHS England have designed them and we are working to bring change, but for now, you’re on your own.
I know this from my family. A Personal Health Budget was a transformation for the care of our son, who has lifelong complex disabilities. He is now a happy person after the local care services failed him for so many years. But . . . managing a team of six paid carers, on top of everything else in your life, is very hard. Especially when there is no support, no training or even a warning of what is ahead of you.
Research and The Idea
This motivated me into running a research project at Newcastle University, to see what the problems are and what I can do about them. I talked to a lot of holders of Personal Health Budgets, advocates and healthcare professionals, and arranged for them to talk to each other, many, many times.
To run a care team you need paperwork. From staff contracts to a staff rota, to a cleaning list, to how to operate the washing machine… Some of the employment documents required are out there on the internet whereas some you have to pay for, but even knowing you need them is an unknown when you start out.
So how about a wiki! You know, the same as Wikipedia but it holds all the documents you need. And the people that use them are the people that place them onto the wiki. And the people that use them are the people that design the wiki.
So we now have www.mycarebudget.org
This wiki already has over 75 documents ready to be downloaded in Microsoft Word, PDF, or Google Docs formats. You can browse without even signing in. If you do register and sign in, you can then download them. The home page offers three main routes to browse: for those starting out with a Personal Health Budget including a set of useful links; a selection of templates; staff policy documents. The wiki is a living space, that is growing all the time from the documents and comments we receive. There’s a discussion forum too.
It is a wiki which means anyone, yes, that is you as well, can change it, add to it. You can create your own page, upload and share your documents. Sounds too much? Not a problem, just email us and we’ll do the work.
Our aim is for a publicly available resource for anyone to access and update. We look forward to seeing you there.