Fran’s wheelchair is quite literally the centre of her world. Without it she would be unable to get out of bed, go to the toilet, leave the house and do her job…it is her passport to the world. Because it is used every day, from time to time, it needs replacing. To do this, we have to go through an assessment process. It is this process that will be the subject of that blog.
To say that the process of assessment is both flawed and not fit for purpose would be a monumental understatement based on our experience. Unfortunately, it strikes me as a process that is designed about disabled people rather than for and with them. Therein lies the source of so many problems. You wouldn’t design any other business or process without understanding the needs of the people who are going to use it, so i’m scratching my head as to why that is so different here. It would be like designing a car without a steering wheel. It might look very nice, but there is no way it is going to work.
So this process began when we made a phonecall, explaining that after years of hard work, Fran’s wheelchair was beyond the end of its useful life (a fact illustrated by the wheels being so bare that the brakes don’t even work, meaning Fran had a fall this weekend) and she needed a reassessment. For reasons unknown, Fran’s GP, who doesn’t even know Fran, was asked to complete a form and did so on the basis of a short phonecall.
Fast forward a few weeks (!) and we get a knock on the door. A chair had arrived that was totally unsuitable for Fran and her needs. I couldn’t believe it, Fran had been given a wheelchair without anyone from the wheelchair service actually seeing Fran. It was an approach that Henry Ford would have been proud of: You can have any wheelchair you want as long as its the one we give you. Try doing that with your next car and see what happens when you ask someone to pick it for you.
Fran returned the unsuitable wheelchair, not wanting to waste resources on something that she couldn’t use. A few more weeks roll by and I hear nothing. I telephone the service and am informed that the case has been closed. That was it. No notification. Just closed. So I explain why, saying that by this point the unsuitable wheelchair is causing Fran continuous pain and discomfort and that, perhaps, just perhaps, someone actually needs to take the radical step of *talking* with Fran and assessing her needs.
Fast forward another 3 weeks (the wheelchair is literally falling apart now) and someone actually comes to see Fran and talk with her. Because of her busy working life, Fran needs a robust wheelchair which will last longer and be better value for money as a result. She also needs her ‘e-motion’ wheels. These wheels have revolutionised Fran’s life. During Fran’s sporting career she sustained a shoulder injury which has worsened over time. The wheels have motors in them which means that Fran can get around independently.
Fran is told that she is unlikely to get these wheels but explains why they are needed, as without them, the wheelchair is effectively useless. She doesn’t have the strength or stamina to push herself around without the wheels. A report is written, and then goes to a ‘clinical decision meeting’ without any further input from Fran. She doesn’t even see the final report. She just waits and hopes that common sense prevails.
I get a call today. The wheelchair has been approved, but not the wheels. Why, I ask? Oh this was a ‘clinical decision’ and is ‘policy.’ The letter I asked for a copy of says that the policy is that ‘e-motion assisted hand rims systems are not funded’ because the service eligibility states so. When I ask what the reason for this was, I am told it is because the policy says so. No further reasoning is given. I will have to try and submit a freedom of information request to shed further light on the meeting minutes.
Here’s the rub: had the policy actually been written with a) any common sense element of discretion for exceptional cases such as this or b) any understanding of the needs of wheelchair uses and Fran in particular in this instance, then it wouldn’t be formulated in such a way. So what is the alternative?
Here is where the picture gets really bizarre. As Fran can’t have her e-motion wheels, she will have to have..an electric chair. The thing about an electric chair in this instance is that:
- It gives Fran less independence
- It will cost more than the e-motion wheels!!!
- It won’t fit in our house
- Fran’s car (which is specially adapted for her current chair) will need to be changed
What all of this means is that we are working towards an outcome that is poor, and costs more!! Why then, can’t we compromise and have common sense prevail with the e-motion wheels. The policy says that this is the way things have to be.
Here’s another thing. I am lucky, because, plainly put, I can argue the toss. I am fortunate in that I have the ability to articulate when things aren’t right and try to make them better. Part of the reason I do this is that I know that this isn’t the case for everyone.
I am also fortunate in that I have contacts, and have engaged several people locally who will help us to ensure that common sense prevails here. I will also be complaining about the process, which isn’t fit for purpose and denies people access to the equipment that is the passport to their worlds.
Fran needs her wheels so she can get out of the house, to work and contribute to society. To do her bit. She just needs a bit of help, a bit of common sense, and above all, people to listen to her a bit more in the first place. Let’s hope a bit more of that happens from here.
Ps – For professionals
If you are reading this..it is a good example of how not to run a service. It is delivered in a way that is a prime example of the medical model..with no shred of mitigation in the form of any social model driven thinking. It delivers poor outcomes in an expensive way (it has an appalling reputation locally), is not responsive to feedback or input and does not involve the service user in any way. If you are designing or commissioning a service, it represents a text book example of what to avoid.