Simon Wheeler
@simonwheeler.bsky.social
1.2K followers 760 following 1.4K posts
Health information specialist working for leading UK dementia charity | Loves good science and good policy that changes lives | I only engage with real people on here so please don’t be offended if I block you. #dementia #medsky #alzheimers
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simonwheeler.bsky.social
It feels a bit like during the miners' strike back in the 80s when Thatcher sent the London Met Police up to coal-mining communities in the North because they wouldn't empathise with the local populations as much, particularly when they beat them shitless and arrested them on trumped up charges.
simonwheeler.bsky.social
Interesting idea - a classic updated for the 21st century.
I think it's fair to say that it needs a lot more testing though. So far only tested in n=60 on a very wide range of conditions.
simonwheeler.bsky.social
Basically you’re right but also it needs far more political capital than anyone sensible has right now.
simonwheeler.bsky.social
It’s a hard sell to withhold marginally effective cancer drugs so you can spend the £££ on vaccinations, smoking/alcohol cessation, environmental health, Healthy Start, and statins/weight loss drugs for the obese.
Everything is political and not all QALYs have the same currency, politically.
simonwheeler.bsky.social
I mean he’s brown and foreign which is bad but on the other hand he’s rich and a Christian so it all works out.
simonwheeler.bsky.social
Yes, it does feel like a shakedown. But it's hard to know if they're bluffing and Starmer/Reeves are in a weak enough position that they might well fold.
simonwheeler.bsky.social
To some extent I think it's a reflection of how difficult it is to come up with good new drugs using the same old bench to bedside methodology. It's increasingly expensive with ever-decreasing benefits. @nicolecrust.bsky.social makes this point really well in her book Elusive Cures.
simonwheeler.bsky.social
That's a contentious point and hard to engineer with just UK policy change, given the global market is still very much working on the model of "great drugs need huge investment with high risk, and that needs a predictable payback period before either patent expiry or the licensing of a better one".
simonwheeler.bsky.social
And then of course there's the dire need for the UK to retain high-value pharma tech jobs and investment, which being 'cheap' does threaten.
And keep DT happy, which is now sadly something we have to concern ourselves with. ☹️
simonwheeler.bsky.social
Are you starting a YouTube channel? 😆
Lots of politics vs. health economics but I get your point. The public is fine with staff shortages, poor training, decrepit hospital estates and hollowed out public health and social care, but won't tolerate cancer delays, op waiting lists, or drug 'rationing'.
simonwheeler.bsky.social
I mean by all means say it to each other as it’s *hopefully* true (given history is always written or rewritten by the winners) but don’t consider it a tool of persuasion in of itself.
simonwheeler.bsky.social
Lots of people talking to right-wingers about ‘being on the right side of history’ and while it makes a sense given the events of the 1930s, it’s not an effective way to change people’s positions or perspectives. Activists have thrown it at me and it makes them sound pompous and ignorant.
Reposted by Simon Wheeler
rhi.bsky.social
Dad’s books are full of empathy, common sense, and a healthy suspicion of the powerful. But at its heart his work is also about how systems keep people poor while pretending it’s their own fault. So I hope Kemi’s taking notes as well as reading the jokes.
paulhaine.bsky.social
Kemi Badenoch claiming Terry Pratchett as her favourite author is wild
simonwheeler.bsky.social
The man's basically just a walking, talking timeline cleanse.
simonwheeler.bsky.social
I don’t like to judge a book by its cover but this particular cover says “man never to be trapped in a lift with”.
simonwheeler.bsky.social
Quadruple Entendre of the Day. 👏👏
Reposted by Simon Wheeler
shaunlintern.bsky.social
Six people a day are diagnosed with #MND At any one time, 5,000 people live with the devastating effects, eventually unable to walk, talk or eat etc. One of them is my mum and I've yet to find the words that adequately describe the horror that is MND.
simonwheeler.bsky.social
Any tips or advice for dealing with ear wax in context of advanced #dementia? I've been asked about usefulness of sedation but this seems a bit premature. Are there other ways of getting this done?
NICE/CKS advises ear irrigation contraindicated with 'confusion' but doesn't offer any alternative.
simonwheeler.bsky.social
It's actually a very good analogy. If only someone actually in power could say this. But then it would be a bit like severing your last remaining life support when you're already in the ICU:
simonwheeler.bsky.social
Excellent. I imagine it's potentially quite cathartic, as well as being helpful for problem-solving!
simonwheeler.bsky.social
Hi Samir, could you elaborate a bit on what's changed with the app?
Also, has there been any user testing or validation work that's been published or shared online?
simonwheeler.bsky.social
At this rate I’m half expecting surgeons to be using divining rods to find my veins! 🤣