Research #psychiatrist #DownSyndrome #Alzheimers disease #genetics #intellectualdisabilities #mentalhealth @londowns @KingsIoPPN @aliveleder @T21RS
London, England
Joined August 2016
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This has been our experience too - dealing with NHSE has often been focussed on political messaging rather than dealing with the issues that affects patients @AliveLeder
London CEO:
“NHS England has got to manage the politics...and therefore the conversations I have with them [are] roughly weighted 60 per cent finance, 30 per cent access, and 10 per cent to do with the quality and safety agenda.”
🫣
hsj.co.uk/policy-and-regulat…
Andre Strydom retweeted
Our #LeDeR deep dive on genetic and chromosomal conditions in people with a learning disability is now available.
kcl.ac.uk/ioppn/assets/pdfs/…
Further work in terms of academic publications is under way and will be updated.
@KingsIoPPN
This thread from the US about the negative impact of reduction in doctor autonomy and administrative centralisation of care rings true here in the UK as well, despite the difference in health systems.
To me, one of the greatest causes of the deterioration of medical care is the consolidation of clinics into centralized administrative units. Clinics have been taken away from departments throughout healthcare systems in the name of administrative efficiency.
Throughout my career I’ve seen this transition occur in many different settings and in each case the quality of care deteriorated substantially.
Unfortunately, this is difficult to study and hard to prove, but I think everyone who works in such a setting and the patients who get their care in these centralized clinics, believe that this is the case
Andre Strydom retweeted
What matters in Early Years
“Early childhood represents a critical window in which families first navigate their child's health needs and developmental supports following diagnosis. However, families describe difficulty reconciling clinicians’ focus on chronic health problems
She highlights some important issues, but why single out “medical professionals” when the issues are systemic? And NHSE and DHSC should not defund LeDeR national reporting when there are ongoing issues with care of ppl with an intellectual disability apple.news/Ab7Crm4swSSOEYPve…
Andre Strydom retweeted
I watched C4’s “ADHD myth” programme.
You can save time by going straight to the closing credits which reveal the unfortunate child has gone back on medication after poor exam results, negating the previous 45 minutes.
People with severe intellectual disabilities live 24 years less on average - The Guardian apple.news/ARyK7-AxrRze2wRtB…
Our new @AliveLeder paper in @PLOSMedicine identifying healthcare inequalities and avoidable mortality for people with severe and profound intellectual disabilities journals.plos.org/plosmedici…
Andre Strydom retweeted
#Oliverscampaign
@andyburnham @YvetteCooperMP can you explain why you are disbanding LeDeR Learning from lives and deaths review into the avoidable deaths of people with a learning disability & autistic people
It is essential that we learn & progress from @AliveLeder findings
Familiar story. These national audits / reports / investigations should be independent of the NHSE if we are to learn from them.
🚨 EXC: NHS England has suppressed the work of investigators carrying out dozens of national clinical audits. NHSE has stopped investigators alerting media, watered down recommendations and limited the way their reports are written, published and used: thetimes.com/uk/healthcare/a…
Andre Strydom retweeted
In collaboration with the Staying Alive and Well Group, full Easy Read and video versions of the new LeDeR 2024 Annual Report are available now
Accessible report (Long easy read): kcl.ac.uk/ioppn/leder/leder2…
Accessible report (Long video): media.kcl.ac.uk/media/t/1_81…..
#LeDeR
1/4
Andre Strydom retweeted
Newest LeDeR figures show 39.0% of deaths reported to LeDeR were considered avoidable. The figure is trending down (41.4% last year) but it remains unacceptably high, nearly 2x the rate seen in the general population (21.1%).
Full breakdown in Chapter 1: kcl.ac.uk/ioppn/leder/leder2…
Andre Strydom retweeted
The new LeDeR report outlines clear priorities for implementation, including strengthened vaccination care, better caregiver guidance on respiratory infection signs, and clear escalation pathways.
See the recommendations: kcl.ac.uk/ioppn/leder/leder2…
#LeDeR
Reviewers should be paid - it’s slave labour otherwise. I have stopped accepting most requests to review some time ago; it may be the only way to change the system
Andy Kulina explaining how our @kingsioppn trial for ppl with PMS was funded by @lifearc1
Excited to announce that we have been awarded funding from @lifearc1 for a trial coproduced with @pmsfuk to test whether intranasal insulin will improve development and mental health in children and young people with Phelan McDermid syndrome @KingsIoPPN lifearc.org/2026/nasal-insul…
Andre Strydom retweeted
Our updated analysis shows a change in mortality patterns for 2023. Diseases of the circulatory system are now identified as the most common cause of death, rather than respiratory diseases or neoplasms. (1/3)
Andre Strydom retweeted
An updated version of the LeDeR 2023 annual report is now available kcl.ac.uk/ioppn/assets/pdfs/…. The revised report includes fully updated cause-of-death information that was inadvertently excluded due to a data-processing error that occurred before we received the data. (1/2)
Andre Strydom retweeted
New post-doc position @KingsIoPPN. Looking for a researcher with qualitative expertise and experience working with people with neurodevelopmental conditions (autism, learning disability) to join our team and deliver an NIHR-funded project. Deadline 22/12!
my.corehr.com/pls/kclrecruit…