In May 2011 I sat very nervously in a room crowded with strangers. Lots of people there knew each other and no-one else on my table spoke to me, they were all too busy catching up with conversations. I didn’t mind. I wasn’t there to chat with anyone, I was there to listen and to learn.
The room was large and we were seated at round tables, ten people per table. We all faced the stage and the speakers. The first speaker gave us some basic figures about PLMD (profound and multiple disabilities) to start us off with and introduced the other speakers. I dutifully wrote it all down. I also wrote down her name – “Beverley Dawkins”. It meant nothing to me at the time. How was I to know that within 18 months I would be going through hell with her at my side?
The main speaker of the day was Professor Jim Mansell. He was a most compelling speaker and hearing him speak that day was something I’ve never forgotten. I took his speech down verbatim and have referenced it many times since, including in the many meetings we had with the staff of the supported living home where Nico died, while we tried to improve the quality of care for him there. I know that Jim Mansell was a beacon for many; a man who has inspired countless people and I am only one person on that list, but one of the things he said on that day has stayed with me ever since.
“Good services cost the same as poor services. Good services are not more expensive, they’re just better”.
If we take a minute to think about that simple statement, it’s a big idea. In these times of austerity cuts, this lion of disability equality told us that it’s not about the money, it’s about how you spend it and understanding why you’re spending it that way.
“Good services are individual and person centred. They treat the family as experts and they focus on the quality of the relationships which the staff have with the person they are supporting. Good services are cost effective. The care package needs to be sustainable by the care provider. Good care begins with good management – its top down.
It’s not difficult to tell the difference between good, well run services and poor ones. As soon as you walk through the door you’ll know the difference. There are some real give-aways with poor services; staff often don’t seem to know what to do unless they’re told and they spend too much time talking with each other as opposed to talking to the people they’re supporting. If you walk into a home where the staff are chatting to each other while they’re watching the TV and the people they support have just been put in front of the TV too, you know you have a problem.
You find care staff talking about how they support people in their care by doing things to them, not doing things with them and often they don’t even mention the idea that really they are there to enable their clients to do it for themselves. They find it quicker to just do it to them. Even those people with the most complex needs can benefit from personalised services and Local Authorities should focus on improving the range and the quality of care, particularly with adult services. So what does good service look like?”
To answer this question, Professor Mansell was joined on the stage by James, a young man with PLMD and using an assisted communication device (a computer talker), James made it very clear to all of us what he thought good service and good care looked like.
He said “My needs are complex. I have choice over who supports me. I want to have fun. I want to be safe and secure. I need total support with everything but I want all decisions to include ME. Ask me what I want. I enjoy being with people. I like being part of my local community. This is MY life and you are here to support ME”
The good care James received was achieved in simple, obvious ways. Ways that didn’t cost anything extra and weren’t difficult to arrange. He and his parents are part of the staff selection process so James meets everyone who might be going to support him and has the chance to say whether he likes them or not. If he doesn’t, they’re not used.
His parents are treated not as “those annoying parents” but as experts in the field of James. Any new support workers are shadowed by existing support workers for as long as they think they’re needed. All personal care is tailored to be the way that James has asked it to be. His support is reviewed monthly and James and his parents are part of that review as the management thinks it’s important that no-one gets complacent and that any new changes needed are incorporated into his support.
Lastly, they never talk about James needing “care”. They talk about him needing “support”. A subtle difference, but a very important one as it shows the mind-set that they are there to enable James to have the best life he can, not to just wipe him, feed him and put him in front of the TV while they watch a programme they want to watch.
I’m lucky. I really do know what good care looks like because Nico spent almost 17 years at Penhurst School (the last 4 in their young adult college style unit) and we were part of something wonderful. All the staff were there for one reason only, to make sure that everyone they supported there had the best, happiest, most fulfilled, interesting and healthiest life possible. The place rang with laughter, friendship and hope. The people who worked there and the people they supported were a group of good friends who enjoyed spending time together. But this could only happen because it was really well managed. Staff were not only well trained, but training was on-going and they were given clear, achievable goals and plenty of management back up. Everyone knew that they were expected to be the best of the best and they were proud of how good they were at their jobs and that their school was flagship for the rest of the UK. Everyone there knew what “good” looked like.
This week I’ve been talking a lot with Yvonne Newbold (via Twitter). She has come so close to being another hard breaking story of the mother who lost her much loved child because he was in the wrong placement with poor quality, misguided care that was harming him. But I’m happy to say that instead she has become a mother who has successfully moved her son into a far better place, where he is now happy and thriving. We’ve also been discussing what “good” looks like and in fact this was the inspiration behind my blog.
After reading Yvonne’s story I wrote to her and said that I thought one of the main differences between her son’s old placement and his new one was that in the old home the staff saw “the job” as working there and running the home. They saw the people they cared for as additional to “the job” and therefore weren’t interested (or didn’t understand they should be) in supporting them on an individual level that made each person feel most happy and safe.
In her son’s new home the staff make the people they support the most important thing. Not the paperwork or the meetings, not the budget or the cleaning or the cooking. Not driving them to their many appointments, but the people they support. They ARE the job.
It sounds so simple and obvious, as many good and true things often do, but it really all begins from excellent management. It’s top down. It begins with a CEO with a clear vision, a love for what they do and a burning desire to do it well, excellent leadership skills and a strong moral compass. That then goes down to the manager of each home and from them to every support worker. It requires understanding of their role; it requires training and re-training, awareness of new innovations, pride in your work and genuine empathy and liking for the people you are there to support.
This is what good looks like.