Steering Group

The 3 Nations Dementia Working Group are a friendly group of people diagnosed with dementia who want to make a difference whilst we still can.

Chair

George Rook

I have worked to improve patient experience and outcomes in Shropshire for eight years, since…

I have worked to improve patient experience and outcomes in Shropshire for eight years, since I stopped working full time. I live with several long term conditions and have had a number of operations in the last ten years. I have a diagnosis of early onset mixed dementia at a fairly early stage, and medication means you probably would not notice, at least on good days.

I helped establish the Shropshire, Telford and Wrekin Dementia Action Alliance, of which I am Chair, in 2014, and I led the development of Healthwatch Shropshire back in 2013.

I worked on a Patients in Control project to co-design and co-facilitate workshops for commissioners across Midlands and East, to influence the way services are designed around patients in the future.

I am Co-Chair of the Dementia UK ‘Lived Experience Advisory Panel’ (LEAP). I am setting up groups in the DEEP network in Shropshire, and I am a diarist in the Dementia Diaries Project.

I am passionate about putting patients at the heart of everything the NHS does, through co-production at national and local levels, and through my work I hope I can influence change. I think I prefer the term patient activist to patient leader, but perhaps I aspire to be both.

I blog about ‘Living as I choose’ with Dementia.

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Co-Chair

Shelagh Robinson

I was diagnosed with Alzheimer’s eight years ago, and was fortunate to get a quick…

I was diagnosed with Alzheimer’s eight years ago, and was fortunate to get a quick and early diagnosis because I had a GP who really listened. I’ve been a volunteer for the Alzheimer’s Society since they sought me out following a Facebook post, and have discovered a talent for public speaking that is well used.

Like all those living with dementia, I am aware that I have a limited time to be active and want to do all I can to improve life for those who live with this devastating disease.

I am passionate about good support at the time of diagnosis, and good end of life care – and of the course all the rest of the journey too.

I’ve discovered it is possible to live a full rich life with dementia, rolling with the bad days and grateful for the wonderful support that the Alzheimer’s Society offers.

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Co-Chair

Nigel Hullah

My name is Nigel and I live in Swansea; I was diagnosed with early onset…

My name is Nigel and I live in Swansea; I was diagnosed with early onset dementia in 2013. I have become fully engaged with social justice and human rights of people with Dementia as the slow drip of being considered a lesser person because of my Dementia was made obvious to me.

I don’t believe a diagnosis turns a vibrant hopeful person to someone who can’t see himself out the fog. It does happen sometimes but not always. I intend to hold people to account where I see social injustice applied to me and others with Dementia.

It is my intention to use political connections and the Human Rights and Equality Act to bring injustice into the light and work with likeminded people across all agencies and convince those who may be reluctant.

I will keep on doing as much as I possibly can, for as long as I can. My hope is that my progression will be slow and I will have lots more priceless experiences.

I don’t intended to go quietly. If we all work together we can effect change.

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Chris Roberts

I was diagnosed with mixed dementia; Alzheimer’s and vascular dementia. I keep as busy as…

I was diagnosed with mixed dementia; Alzheimer’s and vascular dementia. I keep as busy as I can, concentrating on what I can do and know, supported by my wife and family. I try to live as well as I can alongside my diagnoses.

We took part in a documentary for BBC Panorama called ‘Living with Dementia, Chris’s Story’.

Some of my other roles include: Honorary Lecturer and MSc in Dementia Studies, Bangor University; member and Co-Founder of the 3NDWG; Vice-Chair of European Working Group of People with Dementia (EWGPWD); Co-Founder of DEEP Policy Think Tank group; Alzheimer’s Society Ambassador; Join Dementia Research Champion; Alzheimer’s Research UK Champion.

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Hilary Doxford

I was 53 when I was diagnosed with early onset Alzheimer’s Disease. Since then, unsurprisingly,…

I was 53 when I was diagnosed with early onset Alzheimer’s Disease. Since then, unsurprisingly, I have become passionate in supporting research into dementia and dementia care.

I am also deeply saddened by the loneliness of so many people living with dementia; they are very brave in trying to manage and not receiving the support that they deserve. As a result, I am now an Ambassador for the Alzheimer’s Society, and a member of their Research Network.

Amongst other things, I champion ‘Join Dementia Research’ and do whatever I can to assist researchers in their work, including participating in clinical and non-clinical research myself. I also sit on the World Dementia Council and the European Working Group of People with Dementia (EWGPWD).

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Keith Oliver

In 2011, after coming to terms with my diagnosis of Alzheimer’s Disease aged 55, I…

In 2011, after coming to terms with my diagnosis of Alzheimer’s Disease aged 55, I was determined to try and use my remaining skills alongside drive and enthusiasm to further the cause of improving the lives of people affected now by dementia.

I developed the role of Kent and Medway’s Dementia Envoy and am also an Alzheimer’s Society Ambassador. I speak widely at conferences and have delivered the opening address at UK Dementia Congress. I serve on a wide range of national and international panels, steering groups and boards including the national Dementia Action Alliance.

Following the success of the book ‘Welcome to Our World’ in 2014, I published ‘Walk the Walk, Talk the Talk’, my memoirs, in November 2016, which aims to raise over £6000 for the Alzheimer’s Society and Innovations in Dementia. I am delighted to serve as a representative on the 3 Nations Dementia Working Group.

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Tommy Dunne

I’m 65 years young, and I was the 7th born of 8 children. I met…

I’m 65 years young, and I was the 7th born of 8 children.

I met my wife Joyce when we were both 16 and we got married in 1970. We have two children and one granddaughter.

In 1974 I was able to achieve my boyhood dream when British Rail advertised for Traction Trainees (trainee train drivers) so I applied and was successful it felt like I’d won the pools.

My Hobbies: Football & Golf, and I like to give advice about living with dementia on Twitter.

I was diagnosed with early onset dementia in December 2011. For 3 years I’ve been the Chair of the Liverpool Service Users Reference Forum (SURF) group, I’m a former board member of the national Dementia Action Alliance (DAA). I’m a board member of the Merseycare Design team and I’m a member of the Local transport group. I give talks to 3rd Year medical students, at conferences & events as well as post diagnostic groups about living with dementia.

I’m a lifelong Everton fan and I’m happy to be a volunteer at the Everton Pass on the Memories group, which Everton run for people living with dementia and their carers

In 2016 I was awarded the British Empire Medal (BEM) for my services on dementia to the people of Liverpool.

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Lesley Calvert

My name is Lesley Calvert I now live alone after the death of my husband…

My name is Lesley Calvert I now live alone after the death of my husband Sam eighteen months ago. I have two children and four grandchildren. I trained in Salford and worked most of this time as a district nurse in Salford, which I describe as “the best job on earth”. Around five years ago I noticed difficulties with my memory, and was eventually diagnosed with Alzheimer’s Disease, leading to my early retirement.

I chose to be proactive and now lead the Open Doors Dementia Service part of Greater Manchester Mental Health NHS Foundation Trust as their facilitator. Helping to support others who have recently been diagnosed and advise and support them in their dementia journey.

I have also joined many other local dementia initiatives including becoming a Dementia Associate with Salford University, I welcome opportunities to speak publicly about my experiences and aim to show that with the right support, you can live well with Dementia.

I am a member of the Dementia Champions Group in Salford as well as a member of the research group working with Open Doors and Manchester University, where a co research paper has been printed in the September/October Journal of Dementia Care, about our Neighbourhood and Dementia, and filmed by ITN which was shown in Chicago.

Being a part of the 3 Nations Working Group is an exciting new venture where I feel with my insight and understanding of living with dementia I can make a difference to instigate change for the good and wider network of people.

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Larry Gardiner

I am an associate with Oxford Academic Health Science Network. I have recently been co-opted…

I am an associate with Oxford Academic Health Science Network. I have recently been co-opted to join the Oxford Brain Health Centre hosted by Oxford University and Oxford Health NHS Trust as part of their advisory group.

I have been associated with the Social Care Institute for Excellence since 2010 and have been a member of their steering group since 2015. I was also a co-founder member of the DEEP and later their National Dementia Policy Think Tank. In this capacity I have been a contributor to the both the joint Mental Health Foundation/Joseph Rowntree Foundation report entitled, “A Stronger Voice for People with Dementia” and more recently to a new handbook entitled “Our Dementia, Our Rights.”

Currently I am contributing to the co-production network at the Social Care Institute for Excellence (SCIE) which mobilises and organises people who use services as stakeholders participants and Citizen Advocates on equal terms. Current work involves a coproduced evaluation for Department of Health and Social Care on their Integrated Personal Commissioning pilots. I have also been a regular contributor to the National Tenant Think Tank at the London School of Economics (LSE) and have been invited to present submissions to Parliamentary committees of inquiry at the House of Commons.

Principal interests include social justice; equality and diversity; human rights; advocacy; community development; impact of welfare reform; health and social care; housing reform; mental health reform, and, in particular, dementia and young onset dementia conditions.

 

 

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Patrick Ettenes

I’m originally from Barbados, and have lived in Manchester for the past 8 years. In…

I’m originally from Barbados, and have lived in Manchester for the past 8 years. In 2016, I was the youngest person in the UK to be diagnosed with my specific type of Frontal Lobe Atrophy.

I previously worked as a TV producer, and also at the LGBT Foundation, where I still continue to work part-time. I founded the LGBT Dementia Network, and among other things, I am involved with the Dementia Action Alliance, especially regarding LGBT issues; dementia workshops in Wythenshawe Hospital; giving talks at the Royal College of Nursing; and lecturing at Manchester University.

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Our Team

Project Support Officer

Hannah Fitzgibbon

I provide support and project management for the 3NDWG, helping them to achieve their aims…

I provide support and project management for the 3NDWG, helping them to achieve their aims in campaigning, raising awareness and improving the lives of those living with dementia.

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Head of Dementia Voice

Adele Doherty

I lead the Dementia Voice team, which focuses on involving people affected by dementia in…

I lead the Dementia Voice team, which focuses on involving people affected by dementia in work across the Alzheimer’s Society.

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Get In Touch

If you would like to get involved in any way, please do get in touch.

[email protected]

3 Nations Dementia Working Group
Care of Alzheimer's Society
43-44 Crutched Friars
London
EC3N 2AE