The big day has arrived. Bring it on! #kfdementia

Today is the big day.

It’s our day at the King’s Fund, “Leading change in dementia diagnosis and support”.

The programme is here. If you feel that something is reported which is complete garbage, make sure you get a chance to give feedback using the hashtag #kfdementia.

I had dinner last night with Chris Roberts, Jayne Goodrick and Tommy Whitelaw in a pub in Euston. It’s well known I don’t drink alcohol any more, but I had a fantastic time!

We thought Tommy’s talk at King George’s Hospital Ilford started at 6.30 pm. We got there in good time at 5.59 pm.

In fact it started at 6 pm!

BHRUT tweet


Chris gave the ‘warm up’ talk – which was a talk I hadn’t heard before. As ever, I was intensely proud of Chris, and what he contributes to the community.


I have pledged to go through the thousands of letters with Tommy and bring them the key themes in a book. When people wrote their letters, they had no one to turn to. They would have been ‘processed’ by Government in the usual way.

This would not done justice to them. They’re not ‘complaint’ letters, but they contain information and experiences which are gold-dust. It’s likely that these wider messages will extrapolate to the care system across a number of jurisdictions. It’s likely an overall theme will emerge that people are not actually alone in their experiences, and just one small thing might have made a difference.

I told Tommy at the end of the evening that I had intended to make a polite comment at the end of his talk. But actually I actually wanted to comment on how outstanding it was. We all had joked about how it had ended up being mission impossible for me getting there taking a bus ride (I haven’t taken a bus for ten years), and climbing two flights of stairs. But, like L’Oreal, Tommy was “worth it”.

Like the NHS Change Day in England, it was absolutely great to see staff and other people involved in the NHS become truly feeling pride in what they want to see the NHS doing – which is of course great for me to see the NHS in a refreshing light.

Thanks especially to Dr Hilary Marmot, who is a person of significant sincerity, depth in knowledge and gravitas, in real life, with impeccable manners and kindness; Hilary had expressed to me in private how she had made a number of timetable “reconfigurations” to be there.

The talk has “mellowed me” out today. Instead of going to the King’s Fund in full wonk mode, expecting to spit policy bullets at people, I’ve decided to go there unscripted after all, listen and learn, and reflect on it all for my panel discussion this evening. I am looking forward to meeting many further friends and colleagues today, too many to name, but I will be especially looking out for Beth Britton, Tony Jameson Allen and Gary Rycroft.

And why not Chris and Jayne? Am seeing them in Oxford St before we begin!

A special thank you to Matthew Hopkins (@M_J_Hopkins) and his team for looking after us so well as his Trust yesterday. The pride in what you do really showed.


Tommy Whitelaw, Alzheimer Scotland and “Dementia Carer Voices”: caring about the carers

There is no doubt that Tommy Whitelaw is totally genuine in his driving ambition, of giving carers a voices. He doesn’t care about technocratic busybodies or career types who don’t actually care about dementia. Tommy is all about giving people who are probably the most vulnerable in society the support they deserve. Unsurprisingly, there is much love for what Tommy is doing.

According to the charity Alzheimer Scotland, some 82,000 Scots have dementia, 3500 of them under the age of 65.  The number is expected to rise to 164,000 by 2036. Tommy Whitelaw, who toured Scotland raising awareness of how dementia affects sufferers and their carers, by asking carers to write letters telling their stories that he presents to the Scottish Government.

Alzheimer Scotland provides a wide range of specialist services for people with dementia and their carers. They offer personalised support services, community activities, information and advice, at every stage of a person’s life with a dementia.

Dementia Carer Voices is a Scottish Government Project funded project to 2016 to engage with Health and Social Care professionals and students to promote a fuller understanding of the carer journey, provide a platform where carers can express their views and experiences of caring for a loved one with dementia and to harness the awareness raising activity undertaken by Tommy Whitelaw.

In the film below, Tommy – who before he began to care for his 72-year-old mother, Joan, toured the world several times, selling official merchandise for such groups as U2 and the Spice Girls – says that Celtic Park, Ibrox, Hampden and Fir Park would together not be enough to house all the sufferers, their carers and their families.

Tommy has had an “amazing journey” since doing his walk around Scotland and believes he can now speak up on behalf of other carers, and the struggles they face.

“I’ve been overwhelmed by the carers I have met – husbands caring for wives, wives caring for husbands, daughters and sons caring for parents – but behind their stories are difficulties similar to mine. But I’m broken-hearted by the sheer scale of the problem.

This project

  • Captures the experiences of carers across Scotland with a view to informing future policy and service provision
  • Raises awareness of the issues around caring for someone with dementia including among health and social care professionals, students and the wider public
  • Highlights the role of carers as natural resources; carers as people with needs; carers as people with independent lives
  • Empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia

Tommy recently writes:

“It breaks my heart opportunities missed along the way that would have helped mum and myself and helped us keep crisis at bay. We are on the most part private people at heart, we keep our private matters to ourselves and often crisis is reached. I reached a crisis point myself and can tell you it’s the most dreadful place to be.”

“We have to do all we can to keep improving care, keep promoting and signposting initiatives and support already out there in our communities locally and nationally.”

“For every person we let reach crisis as a society we fail them, for every one looking back like me opportunities missed are painful to look back on.”