The politically enlightened were outraged by the Chancellor’s proposed cut on tax relief on charitable donations. This is not surprising considering how much charitable giving occurs in the UK. It is clear the charities are having a tough time.
A large number of MSers are angry about the spiralling costs of medications and feel that Big Pharma is being greedy. I supported Big Pharma in my debate and tried to explain why drugs are so expensive. I doubt I was effective and my position will probably backfire with readers accusing me of being in the pocket of pharma. I would, however, advise Pharma to run a public engagement programme to explain their pricing strategy and get the community on side. If not this issue will continue to escalate; MSers have shown that they can be militant so the consequence of non-engagement could be very interesting.
Despite efforts such as “Meet the Scientists”, our “MS Research Days” and this blog the majority of MSers I spoke to yesterday don’t understand the complexities of MS, in particular the difference between the pathogenesis of relapsing and progressive MS. It is clear we need more education that is pitched at the right level.
I was reminded yesterday that I take too much of my knowledge for granted. I will try and change this position.
MSers and their families were very grateful and appreciate the efforts we made to come to the meeting. More should do it!
MS services across the country remain patchy. For example, one MSer was unable to be assessed for functional electrical nerve stimulation or FES for her dropped foot; apparently her local PCT don’t pay for FES. It is obvious that post code prescribing is still alive and kicking; kicking poor MSers.
A large number of MSers on disability benefits are being reassessed and are being threatened with benefit cuts. One medically retired teacher was told that he should go back to teaching. This was clearly ridiculous when it was clear that his cognitive problems would prevent him from being an effective teacher.
The CCSVI lobby was small and relatively quiet; it was clear that the majority of MSers and the mainstream MS community are moving on. Until new data appears the CCSVI arguments appear threadbare; all I heard yesterday was anecdote after anecdote. Some MSers think anecdotes are evidence. This is not how science works. It was clear that a large number of MSers who have had CCSVI procedures have not seen any significant and sustained benefits. The silent majority? May be a UK register or CCSVI non-, or partial-, or temporary-responders should be opened?
Feedback on my talk was good and a lot of MSers thanked me for giving them hope. Unfortunately, I made one young lady cry in the 3rd or 4th row; I think this was triggered about my discussion about MS being a bad disease and the fact that it reduces life span. I never got to meet her, which I regret. I would have liked to explain to her that the survival data predates the DMT era and that survival figures will almost certainly be better in the future.
MSers still believe a cure is restoration of lost function, most expect to get back to normal. This misconception needs to be addressed.
Stem cell treatments remain overhyped; they are still being viewed as being the wonder or miracle treatment. This is another misconception that needs to be addressed.
Some MSers think neurologists are conspiring with the government and NICE to deny them treatments. This is not the case.
Most MSers view NICE as being a rationing body preventing them from getting access to effective treatments. NICE needs to engage with the MS community a lot more. The need to explain to them what value for money is and why indirect costs are not being factored into their cost-effectiveness assessments.
A large number of MSers and their families don’t know what “evidence-based” medicine is. We need to do more explaining.
Too few MSers know about the NHS “Expert Patient” programme and what it can do for them; this is something neurologists and clinical nurse specialists need to rectify.
Staff members of the MS Society are very jittery about how they are perceived by the MS community; there seemed to a “them-and-us attitude”. Some change is needed to make MS Society staff and the MSers feel part of the same team, which they are.
MSers do not appreciate the important political role the MS Society plays; lobbying for policy changes etc. The MS Society needs to communicate this better, possibly with examples of how they are helping MSers at a policy level.
Overall yesterday was a very positive experience; I will certainly volunteer to participate at the next MS Life meeting in 2 years time; that is assuming the MS Society do another meeting.
Just completed a 10 mile run; I have no idea how I am going to do 26 miles next Sunday.