My book launch of ‘Living well with dementia’ at the Arlington Centre, Camden

Well done to Dr Peter Gordon who was great in giving out my ‘Welcome Packs’.

Almost Specialist Registrar standard…

But more seriously it was good to see so many good #Twitter friends in my audience, as I played personal messages by Kate Swaffer and Norman McNamara, and films by Beth Britton and Peter Gordon.  It was a huge delight to catch up with Gill Phillips who gave a superb gift from the group. I especially enjoyed talking to Darren Gormley, whom I’d never met before. It was brill to meet Lee to, for the first time. I really felt amongst research friends too, with Neil Chadborn and Jo Moriarty in attendance. I completely was at one with feelings expressed by Lucy Jane Marsters about aspects we must get right in future, and James Murray-White had a sense of humour I won’t be forgetting in a hurry (top bloke, I hasten to add!)  I learnt a lot from Zoe Harris, and felt I understood her innovation for care, and I felt I had executed my duties in describing the support given by carers.

Whenever I had a despondent moment during my talk, I looked at Shaun Naidoo who at least had the grace to talk at my jokes. It was a honour that Margaret Kilby made it too from Stafford to represent, like Beth, the lived experience of caring for someone extremely close with a dementia.

Above all, the afternoon was dedicated to Charmaine Hardy, Sam and Ben. I organised with some of my guests that we would arrange for Charmaine to come up to London to see us, as we missed her so much today.

I really couldn’t have been happier.

I1I2I3I4I5I6I7I8I9I10I12I11 I13I14I15I16I17I18I19I20I21

My statement in response to Norman Macnamara’s status this morning

For those of you who haven’t seen it, this is Norman’s statement from this morning on Facebook.

“Good morning all,

Yesterday was a hard day for many reasons, but i stood my ground!!And On more than one occasion !!!!. I was questioned about the GPS Systems, the ethics of it and how many people we will reach and are reaching now. Questions were raised about how some people thought the Purple Angel campaign was just a one man band and will fizzle out after my demise (Their words not mine!!) and the locality of the reach we have!!

This hurt as i felt it was undermining all the great work you have done around the world, something they are having trouble grasping!! Being as protective of you all as i am, i let them know, in no uncertain terms how STRONG we are, how BIG we are and how our Arms all reach around the globe in complete unison and that i will not, or will ever, have people talking (Gossiping) about something they quite clearly no nothing about!!!

Days like this will come, i know this, and i can deal with it without favour or fortune ( i fight a bigger battle of my own as you well know) but please know i will always defend the work we do , you do, and everybody does in this wonderful organisation. For all who like a bit of a read this is what i wrote in my feed back to all attendees yesterday when i arrived home last night, much love to all and always remember
“Together We Are Strong”
XXXX

FEEDBACK LETTER

Good evening all, just a little feedback from todays meeting. As a person “Living with Dementia” can i just say a huge thank you to each and every one of you for your attendance today under such difficult circumstances regarding the weather.

Now, onto my feedback, after the “Lively” discussion Ian Sheriff and myself had regarding the locality of what we do under the banner of the Purple Angel Campaign i would just like to clear a couple of things up. As much as Ian pressed what we do is a local thing just in Torbay, nothing could be further from the truth.

The Purple Angel Campaign is a Global movement with over 100 Dementia Ambassadoors worldwide. We have huge swathes of the UK covered and reading the material we provide for free, the links at the bottom of this e mail me show just this. The Urban MYTH that all this will collapse when i become worse is just that, and URBAN MYTH. We have Succession protocols in place and not only that the 100 ambassadors i talk about the majority also have their own teams to take this forward when i am long gone. I will say passionately, that whilst others have been discussing this, talking about oty for months and the ethics of it, doing research will last months and months, we have just got on with it and got the job done, and in the process of carry on doing so.

As for the GPS `s being a local thing, this is also UNTRUE!! The call centre in Torbay is now a NATIONAL CALL Centre for the whole of the uk. The GPS`s are being posted to those who request them from the 1st of Feb 2014 and are being activated ALL over the UK as we speak. They will begin to save lives The call centre employees are all ex Dr`s, Nurses, Firemen and paramedics who are all versed in Triage and emergency situations !! All protocols have been passed by the NHS and devised by Devon and Cornwall police. How other forces respond will have to be worked out at their own local level but these are now “LIVE and “Active ” across the UK

Without having what we call a sideways dig at anybody, the Alzheimers society are not the Dementia police and are not the only ones who can make a difference to people with dementia and their carers!! And certainly not everything has to be okayed by them. I was so happy to have the support there today of my fellow Purple Angel dementia ambassador Hilary Cragg who is also a solicitor and i was only to happy to hear that she also is mystified by the “Ethics ” argument regarding GPS SYstems. Nobody is forcing these on anybody, and if anybody gets to the late stage where they aren’t responsible to say yes or no then there is usually a Power of attorney involved or a need for care, it really is as simple as that and its the media and the general public who are making hard work of it as usual!!

That said we dont have to PROVE to anybody what we are doing, and whatever the outcome will just carry on doing what we do best. The invitation to ALL of you is here to ask any questions you want too and our offer of help still stands to all who need it. I hope the weekend is a lot kinder to you than it was to us all today.

Best wishes, Norrms and family”

I would like to make a brief statement on this status.

I have met Norman and Elaine:

Norman

Elaine

The idea that Norman is a ‘one man band’ is science fiction.

My personal Facebook is populated full of ‘Purple Angels’ who genuinely adore Norman.

Norman is in fact what management gurus would call a ‘charismatic leader’. This means that he has a vision; he has followers; he’s communicating his vision; and followers believe in his vision.

I think it’s very difficult to find a more relevant stakeholder opinion that that of the person living with dementia.

I think, in fact, and many agree with me, as an academic who has devoted a lifetime to dementia, that they should be at the heart of all service provision decisions about strategy.

I also think they should shape the direction and tactics of our global research strategy.

If anyone would like to discuss with me rationally the ethics and law of wandering mitigation, I am happy to do so. I am a member of the World Neuroethics Society, and have been awarded my Master of Law from the University of Law here in London.

Using words such as ‘demise’ can only be hurtful. As somebody who had a cardiac arrest in 2007, I should like to remind people that anything can happen to anyone at any time.

My aspiration to make life better for those living with dementia has been obstructed by much promotion and spin from those people who have pursuing their own agenda often with a cruel aggression. I salute Norman and his Purple Angels for standing his ground.

All I can say to Norman is that at first they ignore you, then they try to discredit you, and then they attack you.

Norman’s reaction yesterday confirms for me only one thing.

That Norman and Elaine, and the Purple Angels, have in fact won the “battle”. And thanks to them we have made huge advances in promoting living well with dementia.

On international collaborative data sharing and dementia. Surely “it’s good to talk”?

Plans to harvest private data from patients’ NHS files are causing a ‘crisis of public confidence’, the Royal College of GPs said this week. The professional body said it was ‘very worried’ that the public had not been properly informed about the scheme, which is due to begin this spring. Conversely, NHS managers and public health experts say the data will be used for important research and to show up poor care – and that all the data will be made anonymous. But other experts, in information security, say patients will be identifiable from their data – which will be passed on to private companies including insurance firms, and the professional regulatory code for ethics puts valid informed consent as of prime importance.  A growing number of GPs oppose the care.data scheme, and say their patients will refuse to give them information for fear it will be harvested.

In the actual Communiqué from the G8 dementia Conference, the drive of sharing of “Big Data” was formally acknowledged. In the actual webinar, there was in fact screening of a session by corporate investors on the need to minimise risk from their investments to have the regulatory framework in place to avoid concerns over international data sharing.

Big Data

Indeed, BT have taken active interest in dementia.

This eye catching headline is from the BT website:grasp:

This report cites that, “the goal of finding a treatment to cure or halt dementia by 2025 is “within our grasp”, Prime Minister David Cameron has said, as he announced a doubling in UK funding for research into the disease.”

“The London conference is expected to agree to a package of measures on international information-sharing and collaboration in research. ”

These concerns include data privacy and security, and curiously do not feature above.

But the report does not even mention BT’s own Paul Litchfield, who presented even in the G8 Summit.

Last year, leaders from MedRed and BT were invited by the White House Office of Science and Technology Policy to unveil their new collaboration, the MedRed BT Health Cloud (MBHC), at “Data to Knowledge to Action: Building New Partnerships,” an event held at the Ronald Reagan Building 1300 Pennsylvania Ave NW in Washington, DC, on November 12, 2013.

MBHC is a multiyear, transatlantic effort to make available one of the largest open health data repositories in the world. It has been recognized by the Obama Administration as a high-impact collaboration that supports the Big Data Research and Development Initiative.

Designed to meet the converging needs of the life sciences and healthcare industries, the MedRed BT Health Cloud seeks to enhance integration of U.S. public data sets, such as adverse event reporting data from the U.S. Food and Drug Administration and recently released Medicare data from the Centers for Medicare and Medicaid Services, with data from the UK’s NHS and ‘other healthcare systems’.

Data currently available through the system includes several years of deidentified population health data from England, Scotland and Wales, as well as hundreds of other U.K. and data sources. It features data such as physician encounters, acute care interventions, pharmacy history, and health outcomes data.

It is argued that integration of this data with U.S. data and the addition of advanced analytics hold great potential to help speed the development of products and practices that will advance healthcare and improve the health and well-being of people around the world.

The drive for collaboration in data sharing to find a cure for dementia, most agree, is  a worthy policy concern, but so is the current lack of openness in clinical data sharing which has brought about an overwhelming feeling of avoidable mistrust in the public.

The ultimate goal is the use of genomic DNA information for the development of personalised medicine.

A study testing all the DNA in the genome of cancer cells, the first of its kind reported on 7 Februrdy 2014,  has identified individuals that may benefit from new treatments currently being tested in clinical trials.

Metastatic cancer – cancer that has spread from the region of the body where it first started, to other areas – is generally regarded as being incurable. In 2013, 39,620 women died from metastatic breast cancer in the US.

Progress in developing effective new chemotherapy or hormonal therapies for metastatic cancer has been slow, though there have been developments in therapies targeting specific genetic mutations in breast cancer.

We’ve all been shown Facebook adverts containing highly focused suggestions for purchases known on our known habits.

McKinseys have high hopes for the future of Big Data, indeed.

“Patients are identified to enroll in clinical trials based on more sources—for example, social media—than doctors’ visits. Furthermore, the criteria for including patients in a trial could take significantly more factors (for instance, genetic information) into account to target specific populations, thereby enabling trials that are smaller, shorter, less expensive, and more powerful.”

Of course, widespread internet access is an essential part of this technological revolution.

As regards BT, data sharing and dementia, surely it’s “good to talk” with the public who are, after all, central stakeholders?

Somebody had better tell Sid.