Wednesday, 20 May 2015

Wheelchair Services - the Current Intolerable Situation

So I've been working on a larger piece about my experiences of being a new wheelchair user, and that necessarily includes talking about the problems I have had with Wheelchair Services, but the issues with Wheelchair Services are really national ones and I owe it to myself to address those too.

My Own Experience

Here is a quick summary of my own experience:
My initial application for a wheelchair assessment in September 2014 was immediately refused, there was no response to my second application for an assessment in December 2014 until I got a call from a contractor in early February 2015 saying 'Can we deliver a chair tomorrow?' - in other words I have now got a chair but I still haven't had an assessment.

The chair delivered is a heavy folding design, despite my noting in the application and at length in the covering letter that I have Hypermobility Syndrome, particular issues with seating, and problems with my shoulders, and really needed to talk about postural support. The lack of rigidity is so bad I have actually partially dislocated a hip when the chair flexed under me as I crossed a kerb-cut. On top of that the chair's wheels aren't quick-release while the footplates were held on with cotter-pins - Wheelchair Services seem to be adamant if you want to get it into a car you should lift the whole 20Kg at once, or not at all (and never mind the whole disabled thing).

There was no training provision at all - the guy who delivered it was in and out the house in 10 minutes, most of that adjusting the footplates to the right height - never mind that crossing raised kerbs can easily become a safety issue - I've already flipped the chair at least twice while working out how to do it, in both cases that involved me being ejected ass over teakettle out the back, in the second case directly into a door post - a wheelchair using friend, with an identical disability to me, suggests that the set-up of the chair is partially responsible. I've done Quality Assurance work, if I came across a situation like this in my professional capacity I would have had to advise the organisation responsible that by failing to provide even basic training they potentially had a serious legal liability exposure if users injure themselves.

Nor was there any follow-up. I've been having a lot of hospital appointments lately for various reasons and after every one I'm immediately pestered for follow-up: was the service good, was I seen on time and so on. After Wheelchair Services, nothing. Of course I've still not actually talked to anyone at Wheelchair Services to have an opinion of them.

The Nationwide Situation

There are 1.2 million wheelchair users nationwide, two thirds of those rely on a chair for frequent use. The core issue is that Wheelchair Services nationwide are run at a fraction of the budget they need, and with a less than adequate level of service.  There are some points that seem true nationally:
  • It's a Post Code lottery, the service you receive will be heavily dependent on which NHS Trust/CCG you fall within.
  • Unless you fight, you will be fobbed off with a cheap, low-end chair that may not be suitable.
  • Similarly a wheelchair cushion is likely to be thin and cheap, if one is provided at all. Non-wheelchair users don't appreciate how vital a cushion is to a wheelchair user, if you develop a pressure sore it may mean up to a year in bed, in the worst instances it can kill. The NHS say approximately 50% of wheelchair users will get a pressure sore at some point in their life, at potentially massive cost, and then provide the cheapest cushions they can find.
  • You will frequently be told the cheap, low-end chair is a 'lightweight' chair, this is a blatant lie. The chair I was supplied with (Sunrise Medical Lomax Uni 8) weighs 19Kg (probably nearer 20Kg given it was supplied with solid tyres), this is even worse than the 15Kg Action 3 or 4 most people predicted I'd get. A true lightweight chair can weigh as little as 6Kg, 4Kg if you pop-off the quick-release wheels. 
  • If you can stand, even if you can't walk, a very large proportion of Wheelchair Services departments will not consider you for an electric wheelchair, even if you are physically unable to propel a manual chair.
  • The physical dimensions of your house will frequently be used to deny you an electric wheelchair, even if you actually need it for outdoors use, not indoors. I've even heard of one Wheelchair Services department that redefined what constituted a house to only include certain rooms.
Many people will have heard of the charity Whizzkids, which exists to supply disabled children with appropriate wheelchairs; rather fewer will have thought through what the existence of Whizzkids implies - a less than adequate supply of wheelchairs for disabled kids from Wheelchair Services. And carrying on from that, the question of what happens to those disabled kids when they grow up to be disabled adults.

I have heard a string of ludicrous stories about Wheelchair Services from wheelchair using friends, the worst tend to be from those who need powerchairs, but have some limited ability to stand, or live in a house which Wheelchair Services deem unsuitable, as Wheelchair Services tie themselves in knots to justify refusing them the only chair that might be suitable, but in the end it is difficult to beat the friend who was told the only cushion Wheelchair Services would provide was a thin 18x18" one, even though the seat on their chair is 15x17".

Waiting times for assessment are another issue. I would comment on my own experience, but that would presume I had actually been offered an assessment! I have been told in relation to a family member that the waiting time for an assessment in Wear, Tees and Esk Valley NHS Trust is a whole year. The NHS admit that, across the country, getting a chair from Wheelchair Services takes a full year for 15% of service users, but for just the assessment to take a year suggests a substantially longer wait for delivery in the Dales.

Fiddling While Rome Burns

There are attempts to improve the service underway, however seeing as attempts to improve Wheelchair Services have been nearly constantly underway since 1986, with no demonstrable effect, we probably shouldn't hold out much hope. According to this BBC piece NHS England says that since last year it has been working towards three targets:
  • improving the data held on wheelchair provision,
  • piloting a new way of paying for them,
  • providing support and resources to local commissioners
In a statement it says: "None of these areas are 'quick fixes' and each requires extensive testing and engagement to ensure maximum impact and success."

I'm not surprised none of them are a quick fix as none of them actually address the customer experience or the chair provided! The phrase that unavoidably comes to mind is fiddling while Rome burns.

And that seems to be an optimistic interpretation given the opinion of one of the disabled people asked to be involved who states of his experience "Service users are generally treated and given as much respect as a piece of dog muck."

National Wheelchair Leadership Alliance

The NHS have also set up a National Wheelchair Leadership Alliance as part of the ongoing initiative, which is chaired by Baroness Tanni Grey-Thompson. I'm encouraged that their terms of reference acknowledge "the current intolerable situation", and are supposed to lead to a campaign called 'Right Chair, Right Time, Right Now', but I can't help noting that there really isn't an explicit point of making the system more responsive to service users, ensuring that the range of chairs supplied is adequate (I'd really like to see a move to true lightweight 'active user' chairs as the default provision), and that appropriate training is supplied. The Alliance is supposed to produce a one page charter, but Baroness Grey-Thompson herself admits she can't see why it is taking so long, while Bert Massie (former chair of the Disability Rights Commission amongst other stuff), who is working on a related (but non-NHS) initiative around disability equipment provision in general is far more negative, noting “I think there is something very distasteful about this. I can’t work out what is going wrong. I can’t work out why it takes nearly a year to write a charter.” Concerns have also been raised about the influence of Whizzkidz in all of this as the charity is positioning itself as an adviser on wheelchair services in at least a dozen NHS trusts, while it's chief exec is pro-Conservative to the point of appearing in the Tory Manifesto (which earned the charity a slapped wrist from the Charity Commission for breaching rules on political endorsement).

It's probably too early to tell if the initiative will result in any real change, I trust Baroness Grey-Thompson to work for that, her ability to shift the attitudes of the entire NHS I'm not so sure of. But in the end for once we can leave the last words to the NHS, and trust (and hope) they won't allow the continuation of the current intolerable situation.