In last week’s BMJ they mention that ~15% of NHS patients have to wait more than 12 months for a wheelchair and that over 50% of wheelchair users are likely to get a pressure sore from an ill-fitting wheelchair.
Is this fair?
About a month ago I saw two patients in clinic. One patient had been waiting more than 8 months for a wheelchair and had to resort to buying a second-hand wheelchair on eBay that was clearly too small for them. In contrast, another patient came in with a brand new top of the range wheelchair that could help them stand erect. It had cost them over £8,000. The sad thing is that the NHS wheelchair this second patient had been supplied with was not been used. These anecdotes highlight the inequity of the system we are building.
The wheelchair issue is simply the tip of the iceberg. The following piece from the BMJ tells us that things are likely to get worse.
Should access to a NHS wheelchair be means tested to stop inappropriate waste?
Gareth Iacobucci. Exceptional requests for care surge as rationing deepens. BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3188
Excerpts:
….. Vautrey called for “an open and honest discussion” on this type of rationing. He urged NHS England to set clear guidelines on which treatments should be routinely available and which should require an individual request. “It’s clearly unfair for patients to be subjected to this postcode rationing, and it also adds further to GPs’ workload as they are called on to provide more and more evidence to support each application,” he told The BMJ.
Perhaps the bigger question is why after 60 years of MS research people with this disease are still getting more and more disabled to the point where they need a wheelchair. Neuro-protection, re-myelination and neuro-restoration are pie in the sky. The researchers have concocted measures of drug trial success which bear no resemlance to what people with MS want. I don't care about ARR, or time to a jump up the EDSS scale. I don't want to be slumped in a wheelchair for the last 10-20 years of my life. I have a friend diagnosed with SPMS at 22 years old and at 25 years old is a full time wheelchair user. Neuros / MSologists should hand there heads in shame at such cases. Time to come up with effective treatments for all which prevent MSers from ever needing a wheelchair – that would be real equity.
I think the data supports early effective treatment doing just that, delaying by decades, or even preventing, people needing a wheelchair. However, a large number of pwMS have missed the early-effective treatment boat; we can't ignore them and their needs. This is why we are pushing so hard to extend treatment into people with more advanced MS, including wheelchair users.
People like me with PPMS are not well served by the current selection of immune system bashers. There is a need for an understanding of progression, consensus on the pathology of MS, and neuroprotection. These things are missing. Still. So I feel with Anon above.
I completely agree with anonymous 1058. This is the elephant in the room. That there is not one single treatment available after all these years for neurodegeneration, remyelination and neurorestoration is pathetic and researchers should be ashamed. The new drugs might help curb or slow down progression of disease in relatively newly diagnosed RRMS. What about anyone with later stage RRMS, SPMS or PPMS? Possibly slow it slightly down ~25% above placebo taking into account length dependent and treatment lag theories . The inflammatory bias has setback research in MS years. Hopefully some researchers will now start putting emphasis in the other 3/4 of the treatment pyramid.
If only you knew how hard we've been trying.
MD2, I am not blaming your individual research group as I do know you, as a group, are trying very hard. I do blame governing bodies and money driven pharma with their neurologist's pushing their agendas. How is it that 20 anti-inflammatory therapies are approved and not one for neurodegeneration, remyelination and neurorestoration in all this time? We now have very effective drugs for inflammation-alemtuzumab, ocrezulimab, fingolimod, Tysabri or even BG12. Why are governing bodies approving recycled forms or generic CRABS, Daclizumab, Aubagio? Why do they accept trials of anti-inflammatory vs interferon or Copaxone? If governing bodies stated no drug will only be accepted without comparison to the best known anti-inflammatory out there or to meet an unmet need like neurorestoration, remyelination or neurodegeration then I am quite sure pharma would change its approach while still making its billions.
"I think the data supports early effective treatment doing just that, delaying by decades, or even preventing, people needing a wheelchair."There are no reliable long term data for any drug. No trial has ever lasted more than a decade. The claim above is totally unfounded.
I think it should be a moral obligation to return NHS equipment which is surplus to requirements. If the NHS does not want it then there are plenty of other places that could use this equipment.The consultants know their patients, I hope, so maybe this initiative could start there. This is not a big ask and hopefully it would get people thinking
I buy all my wheeled walking frames and crutches myself, because NHS stuff is so budget and sh**e.