I am often asked whether it is difficult - if not impossible - to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public. My answer is that it might be difficult but it can be done. And the benefits can be significant. The real challenges … Continue reading A lab-based environment should be no barrier to public involvement in research #userinvolvment
Of all the dementia initiatives announced by the Prime Minister, David Cameron, this weekend it may prove the pivotal one. It may not grab headlines in the same way as £ commitments to research or new institutes (although it is doing pretty well). But, without it, this expenditure will be worthless. For other patient populations it … Continue reading Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia
The Alzheimer's Society has published a new booklet entitled '15 years of the Research Network.' http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2261 It looks at the work of their Research Network of 250 people with dementia and carers in shaping and advancing the charity's £5.3M research programme, some of their achievements, and a short history of how it all got started.The … Continue reading Lessons I learnt from the Alzheimer’s Society story of public involvement in research
The charity Pancreatic Cancer Action have caused a storm with their new 'cancer envy' advertising campaign in which patients are pictured saying things like: 'I wish I had breast cancer.' So if it's shock tactics they were after, and public attention to go with it, then they must be delighted. As must the advertising company … Continue reading My view on that pancreatic cancer ad campaign
It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not … Continue reading A nod to Nelson Mandela on the eve of the G8 Dementia Summit (agenda published)
This time next week they will be laying the tables and giving the carpet at Lancaster House in London one last hoover. All in preparation for the G8 Dementia Summit on 10/11th December 2013. I expect the current stream of articles and stories about dementia will become a veritable flood ahead of the big day. … Continue reading Comment: Is the G8 Dementia Summit about scaling new heights or making base camp?
First off, an anecdote inspired by the Secretary of State for Health, Jeremy Hunt MP's, announcement to mark the 65th anniversary of the NHS, that all older people will have a named clinician responsible for their care. This is absolutely good news. But it's the view down the narrow end of the telescope. I wonder how things might … Continue reading Wither research into the needs of older people [sic] ???
We were decluttering the flat this morning and I came across this picture. It had been on my boys' bedroom wall until it was replaced by a Crystal Palace FC 2013 calendar a few weeks ago! In the late nineties I was living in the United States. Off and on, I volunteered for the Cincinnati … Continue reading Blog: How the painter’s brush can help us see the person behind Alzheimer’s disease
Expect lots of news pieces this week about Alzheimer's disease ahead of World Alzheimer's Day (WAD) which takes place on Friday 21st September. This is one of the better ones I have seen, from the Observer yesterday. Interesting how the language has changed although the message has not - what was once called a timebomb … Continue reading World Alzheimer’s Day – from timebomb to tsunami (PLoS an update on patient information and placebos)
This morning's news bulletins are full of stories trailing the Prime Minister's speech in London later today, when he is expected to launch a national challenge on dementia - from accelerating research funding and setting up a new academic science centre, to establishing a national screening programme and encouraging people to donate their brains to research. … Continue reading From crisis to challenge: PM to spell out new dementia plan including research boost
This piece from Forbes Magazine is worth reading as a critique of the Obama Presidential Advisory Group draft framework on Alzheimer's published this week. The Group have set a goal of effectively treating and preventing Alzheimer's by 2025. Obama and Nixon would make strange bedfellows. But the last paragraph of the article is perhaps the most salient in pointing … Continue reading Obama echoes Nixon’s ‘war on cancer’ with pledge to Alzheimer’s families
Science fear not. Those of you disappointed that the EU summit on 4th Feb only got round to the subject of 'innovation' at a late hour and to little discussion should take heart from the fact that patients have been used to being at the end of a conference/meeting agenda etc for most of the … Continue reading The NHS reforms and patients…and EU research shake-up?
The BBC's Fergus Walsh wrote an excellent blog this week about the prototype blood test for vCJD (Variant Creutzfeldt-Jakob Disease). But there is another story implicit behind it that is worth telling - what has been achieved through the fortitude of patients and scientists working together in the face of insurmountable odds. I can not do justice … Continue reading Some reflections on the vCJD blood test story