simonwheeler.bsky.social
Health information specialist working for leading UK dementia charity | Loves good science that changes lives | Angry posts instructing me to conform to your world view will just be blocked.
#dementia #medsky #alzheimers #alz
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Perhaps not literally but I gather crowbars were used liberally. Anyway, thanks for Blueskying the joke.
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I think this is happening already in a few of the usual centres of excellence. The planning and development of know how anyway - not infusion centres, as far as I’m aware.
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The point is not to satisfy Farage though. It’s to peel away reasonable voters who feel they’re not getting attention from the mainstream parties on issues that they are concerned about. If we paint all Reform voters as lost causes in the thrall of a cult leader then we’ll end up with Brexit again.
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It’s hard to see how a drug requiring fortnightly infusions and multiple safety MRIs will ever be cost-effective. The one that finally gets approved by NICE will have to be a lot simpler and cheaper to administer, not just have an acceptable list price.
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I don’t think we’ll see investment in treatment/infusion infrastructure. I think they’ll wait for a drug with simpler route of admin + lower ARIA risk (saving £££ on MRIs). Lots in development. But they can improve diagnostic efficiency in the meantime to clear backlog and reduce Dx waiting times.
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Personally I’m not but I totally agree that we need to start moving now towards a system that *could* administer an effective DMT when it comes along. Especially investing in biomarkers + imaging to improve efficiency and precision of diagnoses. Current process is melting under unrelenting pressure.
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There had been some discussion of having a very limited rollout for specific patient types and research purposes but from what I can tell this hasn’t happened. It’s a straight rejection. Fair enough given the longer-term benefit uncertainty vs cost/safety.
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Sorry, Neil. I had no idea the NICE decision was published today! I knew it coming up but wasn’t involved. Looks like we were ‘highly disappointed’.
But hopefully you can see the gist that’s more about infrastructure and diagnostics than these particular DMTs.
www.alzheimers.org.uk/news/2025-06...
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Indeed. I wouldn’t hold your breath for a return to the Hughes/Smith era though.
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M'colleague would like to draw your attention to Hutchinson vs ASDA (2022), though she does concede that most people can't afford litigation (see previous comment re access to legal aid) and most cases tend to be resolved via complaints processes.
www.personneltoday.com/hr/dementia-...
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New CEO soon anyway, so we'll see what difference that makes (no idea who, btw).
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All of that is well above my pay grade, I'm afraid. However, as I said, we compete in other areas - including media space. The selective pressures of trying to maintain a prominent media presence and grow the 'brand' can drive these narratives to some extent. It's a fierce ongoing battle. :(
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Glad to see the FT taking a firm stance on this. Sounds like desperate plagiarising of the MAGA playbook by a party furiously scrabbling for purchase. Whatever it is, we don't want it in our national politics.
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And we're obviously also competitors too. And not just for fundraising. The irony of it is that despite huge amounts of effort put into differentiating our 'brand' from others, almost every health professional I ever interact with refers to us as "Alzheimer's UK" like some F1 hybrid!
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I'm not involved in these collaborations but I think it's far to say that while we do have some shared goals, our values and priorities are very different.
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Although as someone who's been involved as a partner of a claimant in a very stressful yet ultimately successful DDA case, this does not surprise me and perhaps says more about access to legal aid than anything else.
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Goodness. I'm just the health and science guy so can't comment but will run this past my legal expert colleague!
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There are so many areas where I wish we could do more, but the core of the charity involved in this kind of work (rather than dementia support services) is actually quite small. This limits capacity to get involved in every aspect of dementia that needs urgent attention. We have such a broad remit.
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On that last part I concur. We did some really good work on legal protections (including discrimination andMCA) ~10 years ago but deprioritised with new strategy/leadership who decided to not try to do everything all at once but instead be relentless about just a few key, achievable policy goals. :(
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And currently the system is focused almost entirely on diagnosis - and really struggling to keep up with year-on-year increases in referrals (and largely frozen budgets). Hence the constant banging on about diagnostic tech and innovation.
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Yes, true. The idea is that lecanemab and donanemab represent the first tenuous steps towards a treatment with clear functional benefits. They don't cut the mustard themselves, but if a really effective (and safer) DMT comes along in 2-5 years, we don't want to be waiting around to get it out there.
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I can't read it, I'm afraid, but there's definitely a push for the NHS to invest in better diagnostic technologies (e.g. biomarkers + scanners) that will improve dementia diagnosis rates, shorten waiting times, and improve diagnostic precision. This is somewhat related to, but separate from, DMTs.
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I'm not a policy specialist, but I'm not so naïve to think that a government such as this, in the fiscal and electoral position it's currently faced with, is going to be making major decisions based on anything except the absolute necessity to avoid threats. By all means try a different approach.
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I don't understand the premise that we can only either invest in cure OR care OR prevention? We need to invest in all of them and the reality is that any positive change drives hope, greater awareness and ultimately real action. We need to fire on all three cylinders, not one. Any progress is good.
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No idea. I'm not on LinkedIn but I'd agree with the general premise. Our understanding of Alzheimer's disease has been completely transformed over the last 20 years, during which time social care has remained unreformed. We know what person-centred care looks like but the system does not provide it.
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More policy detail here:
www.alzheimers.org.uk/get-involved...
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As for social care, it's one of Alzheimer's Society top three priorities. Intensive lobbying of the Johnson government secured policies to reform the funding of care so people didn't wipe out life savings in a few months. Policies that were later reneged upon.
www.alzheimers.org.uk/news/2024-11...
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Is it typically purely dietary or secondary to another pathology?
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I hate to say it but I think people are missing the point. Russia openly gaslights like this to show the hypocrisy of the US complaining about them invading a sovereign state of Ukraine on the basis of highly subjective security concerns and then allowing it for Iran/Iraq when it suits them.
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Remarkably on the nose.
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This is likely comparing different extremes of the Bristol Stool Chart.
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Incredible that any modern statesman would have the gall to say this, given how well it's repeatedly played out over the last 110 years.
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And it’s not a binary yes/no outcome either. It’s a guide to interpreting results appropriately.
(Sorry, my personal bugbear!)
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It’s three score and ten, not one score and fifteen. That’s an average, not an absolute ceiling.
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Completely agree with your assessment. Pride is the force that underpins a parade march. And fear of letting your oppos down. Then practice (assuming they learned properly during basic training).
Pretty sure I could still march in step after 25 years. Might struggle a bit with double time though.
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Players with most scope for getting further up their curve:
Dragusin: so good for Romania. Clearly v. talented.
Gray: hard-working, flexible. Unlike Lucas though he's not made a strong claim to a midfield spot yet.
Johnson: not bashing but would love to see him develop fully as a winger.
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Also, it's 'West Asia' these days, if you don't mind.