I will be speaking at #WHIS16 London on 25 June 2016

The World Health Innovation Summit (WHIS) now moves to the Royal College of Obstetricians and Gynaecologists on the 24th & 25th June 2016. This follows the success of the inaugural WHIS summit that took place in Carlisle, Cumbria in March of this year (23.7 million twitter impressions achieved).


WHIS is an unique and innovative forum in that it supports our health services by bringing communities together to innovate and share knowledge to improve health care for all.

The World Health Innovation Summit aims to bring all members of our communities together to support and help our health services by providing a platform for us to come together as a community to innovate and share knowledge so we all benefit.

As with the first Cumbrian summit, the London event has a range of expert patient innovators, clinical leaders, health commentators, academics and members of the business community speaking and working with members of the community to inspire innovation in healthcare.

I sadly was unable to make it up to Cumbria in the end, due to unforeseen circumstances, but my ‘here’s one I made earlier’ specially prepared talk on innovation and dementia was shown (and received good feedback).

#WHIS16 Innovation as a response to dementia from Shibley Rahman on Vimeo.

The programme is as follows.


Programme Day 1 – 24th June 2016

9.00am Registration & Networking

10.00am Welcome Gareth Presch, Founder

10.05am Opening Address Dr Amir Hannan, Chairperson

10.10am Olive O’Connor, Patient Innovator

10.40am Deirdre Munro, Founder Global Village Network & Soni Cox, Counsellor MBACP Accred. Supervisor. Creator & Director of My Way Code

11.30am Coffee Break

11.45am Prof Minesh Khashu

12.25pm Jacque Gerrard, Director & Joy Kemp Royal College of Midwives

1.00pm Steve Turner, MD & Founder Turn up the Volume “Patient led Clinical education”

1.30pm Lunch

2.15pm Panel Discussion Women’s Health Chair Deirdre Munro

Soni Cox (Global Mental Health), Chris McBrearty (Medical Leader), Hriitu Rana (India), Asia Omar (Sudan), Sally Godwin, Jacque Gerrard, Joy Kemp RCM Global Midwifery , Prof Minesh Khashu (Health Systems), Carmel McCalmont (Student Twinning), Natalie Corden (Student Leader), Martyn Blacklock (Wellbeing)

3.00pm Manjit K Gill, CEO – Binti Period

3.30pm Coffee Break

3.45pm Prof Glenn Roberts, Quality & Innovation Kings College London

4.15pm Carmel McCalmont, Head of Midwifery UHCW

4.45pm Founder Gareth Presch

4.55pm Closing Remarks Dr Amir Hannan Chairperson


Day 2 – London 25th June 2016

9.00am Registration & Networking

9.30am Welcome Gareth Presch, Founder

9.35am Opening Address Dr Amir Hannan, Chairperson

9.40am Dr Alyaa Gad, afham.TV

10.10am Paul Watson, Children’s Mental Health Nurse (special interest military children)

10.45am Martyn Blacklock, WHIS KIDS & WHIS at Work

11.30am Coffee Break

11.45am Briefing sessions  – Guest Speakers (Mummy’s Star, SilverFit and more)

12.30pm Panel Discussion Solution focused – Special Guest Chair

1.00pm Lunch

2.00pm Dr Chris McBrearty, CEO Strive Clinic

2.40pm Christiana Gardikioti, Founder Meraki People

3.15pm Coffee Break

3.30pm Hala Jawad, Community Pharmacist


4.10pm Dr Shibley Rahman, Author


4.50pm Carrie Jackson, Director, England Centre for Practice Development

5.20pm Sanchita Islam, Artist, Writer, Film maker

5.40pm Closing Remarks Dr Amir Hannan Chairperson
#togetherweinspire ‪#‎WHIS‬ ‪#‎togetherweinsprie‬


#ADI2016 The force awakens

I enjoyed the opening ceremony – though some delegates remarked to me how ‘fit’ the dancers were, maybe indicative of long plane flights to get to the conference venue.

Yesterday, I remarked to the CEO of Alzheimer’s Disease International (ADI), Marc Wortman, as Marc was leaving the hotel, that the Alzheimer’s Disease International conference had ‘interesting dynamics’.

What I actually mean is this.

Speakers from Dementia Alliance International were outstanding. I think Prof Peter Mittler’s talk on how people with dementia must demand access to their rights under the UN Convention for People with Disabilities was a game changer for many. For me, it was the best lecture I’ve ever attended in my lifetime.

I mentioned to some separately that for me Prof Peter Mittler was the equivalent of a premiership footballer, in terms of lecturing ability, when many lesser mortals in comparison look in lower divisions.

I reckon I would’ve actually made it to Dennis Frost’s talk on time especially, not wandered through accidentally half-way through by accident, had Dennis not been advertised as ‘A person with dementia’. This billing on the programme was complete nonsense – as ridiculous as having ‘A person without dementia’ to describe the billing of someone like a policy wonk from WHO.

This was a worthy project which caught my eye.



It was lovely to be recognised by so many at the conference – people whom I had never met before, as well as longstanding close friends of mine. The conference expectedly did have the atmosphere of a family wedding – with people I like and respect there.

I think Jeremy Hughes and George McNamara, senior people at the Alzheimer’s Society, gave excellent presentations. George’s one is particularly relevant to my next book, and contained many many useful avenues for future directions. I think Dementia Friends on principle has good aims, but a real concerted effort must be put now into making meaningful sense of this high cost campaign.

Dementia Alliance International (DAI) is a group essentially run by people with dementia to advocate for people with dementia. But the sheer individual brilliance of the presenters shone through – including Prof Peter Mittler and Prof Mary Radofsky whose contributions were incredibly interesting. There’s no doubt ADI hugely benefited from their presence in the conference, including in the programme list. But I do also feel this is a beginning.

The mood music has changed. DAI has a scarce resource other people want – individual expertise by people with dementia – which many people do not have. It’s clear that the future direction of dementia policy now can be ‘no decision about us without all of us’, and can move from dinosaur lobbying techniques and hospital-dominance to representing the sincere views of people living with dementia.

A day before the first full day, Glenn Rees AM, Chair of ADI, let us know that his Board had approved DAI’s proposal to promote Convention rights, and this would now become their official policy, such that it would be left up to individual national organisations as to how best implement rights-based advocacy. Rights-based approaches, including rights to independent living and right to health, have huge implications for dementia care and support worldwide.

Helga bust a gut to help me with my book signing session.


Thanks very much to Peter Macfarlane from Wisepress for his help for this. Dale Goldhawk, Vice Chair of ADI, even bought a copy!

I had great feedback from my presentation on the awareness of international human rights. Thanks very much to John O’Keefe for chairing this.

Some photos I took are here.

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I suppose my favourite ‘times’ of conference was when Agnes Houston made a ‘selfie’ photo of herself for the first time.

And also I think Agnes and Nancy McAdam talking about how they felt really included in Scottish dementia research (#whywedoresearch) on a boat on the Danube was much fun too. A sort of “Alas Houston and McAdam” moment.

The dementia conference is dead! Long live the meet up.

Fran O’Hara, Pam Luckock, Chris Roberts and Jayne Goodrick, about 15 people with dementia, at least 15 family carers, various people in various disciplines in dementia care including the third sector promoting living better with dementia, and other interested parties, proved it this week.

The dementia conference is dead. Long live the meet up.

We got off to a flying start. There was no ‘conference dinner’. We instead all sat where we wanted to in a rectangular circle (you get my drift). My best friend, Chris Roberts, sat next to Jeremy Hughes. I was about to take a photo of Chris talking to the person on his right, whom he really liked a lot, until I realised it was Jeremy. And I thought I’d leave Jeremy in peace – he is after all the CEO of the Alzheimer’s Society!

I adore Prof Bob Woods – his advice to Chris when he left on the last day was, “Watch out for this man!” (laughing, but pointing at ME). Bob is basically an encyclopaedia, but very nice with it. I mentioned to Bob how in fact I was citing him during my own PhD – which was a very long time ago. Bob said, “Good! Cos I started when I was 5.”

I asked Bob whether he ‘believed in’ meaningful activities – “very much so – they’re better than meaningless activities” came the reply.

I can’t really explain it – but there is a huge bond and solidarity when friends of mine living with dementia meet up and their closest ones. You can’t ‘fake it’.

Kate Roberts, Chris Roberts and Jayne Roberts did a wonderful initial session. In a brilliant talk (and it was apparently totally scripted by her), Kate (=Chris’ daughter) included, “Mum is my rock and Dad is my hero.” You could hear Jayne’s voice croak audibly with emotion.

I won’t give the ‘game away’, but George Rook gave a wonderful talk on the communication and disclosure of the diagnosis from a patient’s perspective:


Agnes Houston’s work, discussed too by Donna Houston, was a real hit. Agnes said it had all been possible through people with dementia giving up their precious time, and with generous support from the Life Changes Trust. You see Agnes MBE is the best – Agnes will be going with family to Buckingham Palace on 18th December 2015 – and I’ll be supporting from afar.

Olwen Williams gave a very good mini-speech on a topic which I have a strong interest in – the “Future Hospitals” initiative from the Royal Colleges of Physicians, which looks at the rôle of the hospital in an integrated person-centred care system which sees people in the right place, right time and right way.

Really loved chatting with Ruth Eley for a long time for the first time. Am a big supporter of TIDE, to support family carers (like I was of the previous Dementia Action Alliance Carers Call to Action). Had a lovely chat too with Louise Langham who is the best too. Anna Gaughan, Jean Tottie and Pat Broster were of course supporting on Twitter. Good luck to the book some of them are involved with on life story – I am sure this will be an unique high quality contribution next book to be published by my own publishers of “Living better with dementia”, Jessica Kingsley Publishers.

This meeting was not as good as a conference it was much better. There was a completely flattened hierarchy – that means people who weren’t catalysts or officers in change. People addressed people as people. Simples.

There was mutual respect for other people’s background and experiences, diverse and substantial. People with dementia and closest were pivotal in the table-top activities in co-producing dementia care pathways.

Isabel and John were amazing in their graphic and technical support for their event.

The token slot for the person with dementia or carer was discarded (which often makes the situation of engagement and empowerment worse in fact.) There was no shitty question answer session where the ‘selected few’ asked their questions. No – we all had a chance to contribute.

5o% of the places of this meet up were free of charge. All people with dementia and carers were offered a chance to attend for free.

And we got a lot done.

See – it is possible!

Loved Llandudno and North Wales in general.

Well done to “Framela”, Chris and Jayne (see a previous blogpost for the full programme).

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An outstanding conference on dementia is next week in Llandudno

Next week promises to be an outstanding conference on contemporary issues in dementia care.

This will be a two day programme (24-25 November) of activity, speakers, spaces and opportunities ‘to bring real, rapid change and improve dementia care and support in North Wales, and to create more informed, inclusive communities.’

It’ll take place in Llandudno, Wales, in a beautiful venue by the seaside.

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I am looking forward to it hugely.

Persons who’ve received a diagnosis of dementia are at the heart of the event’s organisation, including Chris Roberts, Wales ambassador for the Alzheimer’s Society, George Rook and Agnes Houston MBE, Scottish Dementia Working Group.

Here’s the ‘Eventbrite’ page, but please do email the organisers in advance as there will be a high proportion of tickets for interested citizens.

It is a spectacular programme, not least because Jeremy Hughes CEO of the Alzheimer’s Society will be speaking. Given how busy Jeremy is, this is wonderful.

The programmes is as follows.

DAY 1: 24 November 2015
9.30am      Refreshments, exhibition viewing, quiet space time, Dewis
10.00am    Welcome, Chris, Jayne & Kate Roberts ‘Creating inclusive communities,
a place for everyone – what matters to us’.
Kate Swaffer will also join us via webcast from Australia.
10.30am    Jeremy Hughes, CEO, Alzheimers Society UK ‘Dementia Friends’
10.45am    ‘Using what we have’ asset-mapping dementia care & support in N Wales
Group discussion activity 1
11.50am    ‘Dementia care pathway – Identifying issues & gaps’  Group discussion activity 2
12.35am     Prof. Bob Woods, Bangor University ‘Arts and Dementia’
1.50pm       Agnes Houston, Dementia and Sensory Loss
2.05pm       George Rook, patient activist ‘In an Ideal World’
2.20pm       First participant choice session: a choice of themed workshops,
informal hosted table conversations, quiet space, exhibition, Dewis
• Young carers • Being a dementia champion/voice • Dementia choirs
• Dementia and the natural environment • Dementia + transgender
• Dementia faith /ethnicity • Dementia and memory tasks/music
• Dementia + sensory loss • Late diagnosis •
Dementia and care homes • And more…
3.40pm       Second participant choice session
4.45pm       Chris, Jayne & Kate Looking forwards together

DAY 2: 25 November 2015
9.30am     Refreshments, exhibition viewing, quiet space time, DEWIS
10.00am    Welcome – Chris and Jayne Roberts ‘Creating change together’
10.15am    Keynote speaker and Multi-sector panel presentation
The current North Wales dementia care landscape
10.30am    Reviewing the asset-map of dementia care and support in N Wales
– developing recommendations for action, group activity.
11.40am    ‘A dementia care pathway – Identifying issues and gaps’
Data review & creating recommendations for action group activity.
1.00pm     Event close – Chris & Jayne Roberts ‘Looking forwards together’

I am staying at the conference venue itself, St George’s Hotel. I have already got an extremely good impression of them from speaking to them on the phone to organise my stay.

Celebrating the best – the National Dementia Care Awards 2015

I was honoured to be invited by Chris Roberts and his family to the National Dementia Care Awards 2015.


Jayne Goodrick, despite the fact the family camper van broke down in full blazen glory, looked dazzling.


I arrived at the Birmingham Hilton Metropole Hotel on Friday afternoon, where I was immediately serendipitously greeted by Lucy Frost and Emma Bulled. I was very relieved to see them both as I knew as I was in the right city. I was pleased that Brighton’s initiatives in acute hospital care had been recognised, in no small part due to Emma and Lucy and their colleagues.


Lucy later that evening introduced me to her friend and colleague Richie who was great to chat with – Richie is a very gifted, thoughtful individual who also works at Brighton.


Entering the event was a bit of a ‘who’s who’.


I feel now as if I’ve got to know Dr Richard Hawkins quite well by now, having spent nearly two weeks back to back in his company (the first week being the UK Dementia Congress in Telford the other day). Richard’s great fun.


At the front of most of our thoughts was Tim Lloyd-Yeates who sadly passed away earlier this year. I really enjoyed the presentation by Alive! which was Tim’s creation.


Was really good to see Zoe Harris and Sally Knocker, longstanding Twitter pals.



It was great to see the Northern Irish contingent, Joanne Agnelli, Jessie McGreevy and Gary Mitchell.



But huge apologies for the accidental photobombing later.


I should like to thank Jessica Harman and Fiona Robb for the huge amount of work they put into the evening, and Jessica especially for getting me access to soft drinks (as I never drink alcohol for various reasons) without any fuss or reservation at all.


I have to say, entirely genuinely, the organisation was immaculate.


We rarely get a chance to celebrate the best in dementia care. Too much of it comes across as firefighting, or even at worst ‘damage limitation’. It was therefore awesome to celebrate people who are at the top of the game.

I said to Joy Watson, an amazing campaigner, and nominee for most exceptional person living with dementia, jokingly, that Tony Husband was enjoying himself at the champagne reception. Joy laughed and said, “Yeah Shibley – he’s driving!”


I think a part of dementia policy which works is ‘dementia friendly communities’. There is no doubt that Nicky Taylor and the team of West Yorkshire Playhouse were deserved winners of best innovation, for the sheer remarkable skill and attention to detail they pay over inclusivity and accessibility.


This is all a fire cry from my memory of clinical training in the cusp of the turn of the millennium where residents with dementia were literally restrained to their chairs, abusing their fundamental human rights, and had set times at which to go to the toilet.

This is not to airbrush bad care, at all, but for us to learn from what works in a constructive manner.

It was an honour to meet Liz Cunningham who won most exceptional person living with dementia, who was praised for her outstanding initiatives in the local community.


I think personally in future it might be sensible for all finalists to be ‘winners’ in this category. All the nominees, including Chris Roberts, Joy Watson, Ken Howard, I personally felt were outstanding – and whilst I am not one for ‘the Dodo verdict’, i.e. “everyone has won and all shall have prizes”, I felt to judge people who have a cigarette paper between them in terms of contribution to campaigning for awareness was unfair to all concerned.

Chris Roberts even got a card later on from the judges praising him for his outstanding work.


But this was a very very nice touch by the organisers of this event.

Meanwhile, here’s “our Ken” – I reminisced with Zoe the old joke, “What do you call a well dressed man in a  suit? The defendant.”



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My impressions of the Dementia Congress conference 2015



First thing’s first, I loved the company up there. I met people properly up there, including Prof Dawn Brooker, Prof Murna Downs, Sally Knocker, Damian Murphy and Philly Hare, whom I hadn’t really met bet before. I ‘get’ Dawn’s work, Murna has a terrific sense of humour, Sally’s completely lovely, Damian’s on the ball with his work and Philly I think has a heart of gold. I can see now why Philly and Wendy (Mitchell) get on so well. I was thrilled to see the leaders of the Lewy Body Society confidently presenting their society – lovely ambassador and work I’m very interested in (having received so many complimentary reports on Prof Ian McKeith’s clinical approach.)

I suppose I did have different expectations of the event. I expected it to be ‘hard sell’ which it wasn’t. I expected the material to be light academically (I don’t mean this in an academic snobby way) – but it wasn’t. There was a real family atmosphere. Some members of the family perhaps were not that thrilled to see me (but didn’t say so), but on the whole I had a very happy time. Some of the family I’ve been around half way round the world with – like Chris Roberts and Jayne Goodrick to Australia.

It gave me great pleasure, from a completely egotistical perspective, to direct people to my book ‘Living better with dementia: good practice and innovation for the future’ to the JKP Press stand.  It happened also to be convenient shorthand whenever somebody asked for my thoughts on an issue.

I had become fed up with the question of ‘what do you do?’ I am bound to feel fed up with this in the sense that I genuinely feel I am not ‘doing’ very much; but what I ‘do’ I enjoy so much, it doesn’t feel as if I’m ‘doing it’.  But this time I was helped along by my name badge saying I worked for ‘Ground Floor Flat’. I said jokingly on Twitter I was hosting at Congress my launch party for  a brand new innovative, person-centred care for people living alone with dementia in relation to ‘Ground Floor Flat’. 11 people retweeted it. I withdrew the tweet. [Note to editors: both my regulators despite offences of dishonesty.]

Suzy Webster and Sarah Reed laughed so much about this. I wish Suzy had been there longer, and I wished I’d been there for Sarah’s session but I think it clashed with Andrea Sutcliffe’s session. I had a coughing fit during my session, which was probably divine retribution for me asking whether dementia policy should be governed by the free market.

I was a bit disappointed with the Ministerial video. It didn’t say much I didn’t already know. I perfectly understand her not being there because of a three-line whip, but wish I had come out of that video of hers knowing something a bit more about this current government’s commitment to dementia policy. I think Jeremy Hughes answered questions very skilfully – including my one asked of a panel on personal budgets.

I have very few criticisms of this event. One session overran, was appallingly timed, not much focus on actual empirical work (very anecdotal), and then did not allow time for questions. But on the whole the sessions were academically rigorous, thought provoking and presented to a very high standard. As I tweeted at the time, the session chaired by Zoe Harris on coordination of care and personalised approaches, featuring the titans Ian McCreath and Helen Sanderson, was the best conference session I’ve ever been to (and I’ve been to very many).

The need for clinical specialist nurses was very very loud in this conference, and so it should be given the overwhelming thumping clinical evidence for their importance in outcomes especially in coordination of NHS and social care. It was totally lovely to chat with Karen Dening, Rachel Thompson, Amy Pepper and Lucy Frost.

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Steve Milton inspired me massively, in doing huge amount of work and refusing to take credit for any of it. Toby Williamson continues to inspire me as being very understated but massively over delivering. I chatted with Toby personally about a common interest in rights and disability (the brilliant Mental Health Foundation report on this under Toby was published earlier this year.) I wish I had spent more time with Peter Mittler at this conference.  But I will catch up with Peter for definite. Peter’s put a huge amount into promoting rights-based advocacy approaches; he himself had a massive rôle in the development of this policy in the inclusion sphere and the UN Convention of Rights of People with Disabilities.

People living with dementia, like Peter, are the stars of the show. I loved seeing my old friends Ken Howard, Agnes Houston, Joy Watson, Tommy Dunne, and Keith Oliver. I see Keith as a very wise man, which he is. I have found Peter Ashley’s comments incredibly useful in the past – I share totally Prof Dawn Brooker’s regret at Peter not having been able to attend conference this year.

The plenary sessions by Prof R0se-Marie Drões and Prof Martin Prince on integrated person-centred care and global perspectives were superb.

My favourite session in the end was probably Lucy Whitman’s one based around her new book ‘People with dementia speak out’. I chatted with two friends of mine I adore, Larry Gardiner and Dr Jennifer Bute. Issues came up such as the impact of the diagnosis, and how it was more important to meet the needs of the person living rather than to get knotted into a diagnostic obsession. I loved speaking with Lucy privately – a terrific force for good.

David Sheard’s talk in the main hall of conference was awesome. It unfortunately produced an Amazon order of significant weight, but was entertaining, informative and educational in equal measure, in producing a thought provoking discussion of personhood in the light of recent trends in dementia care.

I am glad that this conference gave proper conference to the importance of carers in English dementia – TIDE carers were superbly represented by Louise Langham and Jean Tottie. The carers’ influence was also felt from a distance from Rachel Niblock, tweeting furiously, and in complete solidarity with Neil Mapes’ superb presentation on a response for Age UK to provide inclusivity.

For next year, I’d really like a unifying theme for the conference, which this year’s suffered from not having one. I also felt that the conference fizzled out, albeit with outstanding parallel sessions, and maybe there should have been a common plenary for all of us (particularly to stop people getting early trains back home.)

I thought the Hawker bunch were lovely – I spoke with Mark, the editor of Journal of Dementia Care, and Richard, the Editor in Chief, who was all round brilliant. Much missed was Tim Lloyd-Yeates. I remember when Tim phoned me up to tell me of his medical diagnosis, and we chatted about how anything could happen to anyone at any time. Thanks to the organisers of this conference for a brilliant evening event, including a tribute to Tim, showcasing art. Massive thanks to Sue Benson who clearly was a glue for much of this conference of two days.

I did miss Kate Swaffer though. Kate won best leader award at a different conference. Rightly so, as my chapter on leadership in dementia in my book had her in mind.