Thank you for inviting me to speak. A great conference yesterday and more today. Loads of shared learning from clinicians, researchers and importantly those with lived experience. #dementia#SDRC2025@AlzScotDRC
Where are we for disease modifying therapies and Parkinson's? Why not take some lessons from multiple sclerosis? Fantastic paper by Lorraine Kalia and colleagues in @Nature Reviews Neurology. Can you say MRI?
Key Points:
- Guess what? ~18 disease-modifying therapies or DMTs for relapsing multiple sclerosis (MS).
- One now for primary progressive MS.
- None for Parkinson's!
- MRI has been a game changer for MS for both diagnosis and measuring outcome.
- Reliable outcome measures for progressive MS (which still needs DMT's) and PD will be top priorities.
- Animal models and dish based models will be critical as well as of course human trials.
- Imaging and other modalities to understand early stages are critical.
- Subtyping is hard in both MS and PD.
- MS and PD have many different forms/presentations and understanding who to apply which therapy will be important.
My take: Love the perspective of learning from another disease. I think it is important in Parkinson's that we learn from MS. Reflecting on how important using MRI has been for MS I beleive is an important lesson in the story. Reading this article gives me inspiration that we are on the right track in Parkinson's. It also gives me hope for those suffering from more progressive forms of MS; help is on the way.
nature.com/articles/s41582-0…#Parkinson#multiplesclerosis#MS
Caring responsibilities could fall on any of us tomorrow, in a few weeks, a few years....Those responsibilities could last a few weeks, years or even a lifetime.
#CarersEmployment24
Nothing justifies what we have witnessed here’: the doctors returning home from Gaza.
British doctors Mohammed Tahir and Omar El-Taji thought they were mentally prepared to help treat people in Rafah. But what they and other foreign volunteers faced was beyond anything they could have imagined
theguardian.com/global-devel…
A little younger than my daughter & with the same #raredisease - deteriorating in Gaza. As fellow parents we are desperately trying to get an urgent medevac. Please share my friends (and fellow amazing AHC parents) interview with @SkyNewsnews.sky.com/story/in-washin…
AGAIN - we urgently reiterate our call to stop the attacks against hospitals, for an immediate ceasefire, and for the protection of medical facilities, staff and patients, and to allow people who wish to leave the hospital to do so.
Just now on @AJEnglish, the co-founder of @GazaMedicVoices, Dr. Tanya Haj-Hassan, begged for a #ceasefire - as live images showed #alShifa hospital being directly bombed;
"Over 5,000 dead children is enough."
"Over 5 hospitals targeted by a military in the past days is enough."
#Oliverscampaign
This powerful animation Codesigned Coproduced with autistic people & people with a learning disability It is aimed at helping staff & employers across Health & Social Care to understand Oliver’s training & why it is vitally important
youtu.be/ouhKSOGm49g?si=s6FN…
I visited the Learning Disability and Autism team at @BlackCountryNHS and heard just how much of an impact they have in their community.
All NHS staff are responsible for improving patient care and the Oliver McGowan training helps us do that. ➡️ hee.nhs.uk/our-work/learning…
“Dozens of young autistic people have died after serious failings in their care despite repeated warnings from coroners”
We know what the problems are. We’ve known for decades.
This is why programmes like #NATPmentalhealth are so important.
bbc.co.uk/news/uk-66731265
“Young autistic people still dying despite coroner warnings over care - BBC News.” Seeing the face of my sweet Sammy here is💔💔💔💔. (Also BBC NEWS 6pm, RADIO 4 PM Show 5pm, BBC NEWS CHANNEL also 5pm.) bbc.co.uk/news/uk-66731265
“…yet again, an example of a leadership culture that seems to plague the NHS time and time again– where organisational reputation is put above safety.”
Some reflections on the ghastly news this week in Today’s Sunday Times.
#Letby
Dr Ravi Jayaram is one of the consultant paediatricians who tried & tried & tried to raise concerns about Lucy Letby.
His trust stonewalled, threatened & gaslit him - then forced him to attend mediation with Letby & apologise to her.
Please read his words 👇
A lot of people asking why the drs never went outside the trust. Not to the police, media, other agencies. It is a legitimate question....but our report shows the culture of the org didn't really encourage this. How true is this of other NHS trusts? #lucyletby
🚨 INVESTIGATION: How #LucyLetby - Britain's worst child killer - was promised a role at Alder Hey Children's Hospital by managers who dismissed fears she was a killer.
The Sunday Times has the definitive story of how she almost got away with murder thetimes.co.uk/article/lucy-… 🧵1/7
Medics working with Letby:
• Raised concerns in Month 1
• Conducted an internal review
• Flagged it to bosses repeatedly
NHS Management:
• Ignored them
• Made them apologise
• Threatened them with the GMC
• Offered her a new job a funded Masters
We need to listen.