There were many reasons to be cheerful this year for me. One of them was going down at the invitation of Lisa Rodrigues (@lisasaysthis) for Prof Sube Banerjee’s inaugural lecture as Chair of Dementia at Brighton and Sussex Medical School.
Reasons to be cheerful
Sube called his lecture, a timely view on where we’ve got up to in English dementia policy, “reasons to be cheerful”.
Kate (@KateSwaffer) is a world class advocate for people living with dementia.
I have found Kate’s work on stigma and language particularly interesting. Kate is Chair Elect of Dementia Alliance International (@DementiaAllianc), and I expect this group, consisting in the vast majority of people living well with dementia, to be extremely influential in 2015. As this group becomes more influential, I am sure it will attract more scrutiny, and it will be necessary both to manage people’s expectations and not be unduly swayed by externalities.
The University of Wollongong (@UOW) is where Kate did her Masters of Science degree in dementia care. I only received a Commendation for my Master of Law, but that was in commercial and corporate law, and not really my strongest love. For Kate to receive a Distinction is no less than Kate deserves, and I was genuinely utterly thrilled for her.
Chris and Jayne
I tried to get out more this year, fuelled by seeing friends Chris Roberts (@mason4233) and Jayne Goodrick (@JayneGoodrick). Louise and Rachel from the Dementia Action Alliance Carers Call to Action (@DAACarers) have worked amazingly hard, and I have nothing but the utmost respect for this arm of English policy. Here’s a picture of me, Chris, Sally (@nursemaiden) and Ken Clasper (@ken_kenc) at the Methodist Central Hall in Westminster.
I do strongly believe that ‘experts’ are a potentially false concept in dementia. I certainly don’t believe in experts by longevity – people who’ve professionally been studying dementias for ages. I do agree with Chris though – people living with dementia do become experts in their own experiences at their particular times. We all can learn from this.
Here’s Chris holding the Dementia Alliance International flyer. This was in a crowded foyer during the conference. I am not sure what we were doing at that precise second. I reckon I might have been panicking about the poster session on my findings of the use of language in the G8 summit. That poster session was very enjoyable for me, as I got a chance to chat with Prof Mary Marshall whose influence on design and dementia has been enormous at Stirling. Mary remembered me from a workshop I attended in Notting Hill once. And I remember her. She spoke with me for ages, when she had no need to at all.
Dementia policy in England and Scotland
I thought this was a parody of a Monty Python sketch until one of my bright Twitter followers advised me it was a parody of the Two Ronnies sketch. That’ll learn me. Anyway, here I am with Chris and Tim Lloyd Yeates (@alivetim) whom I am confident to report is one of the most polite and well mannered persons I have ever met in my life.
Ultimately, I have limits to my understanding of dementia, having not lived with dementia myself to my knowledge, and definitely not been involved in a family caregiving way. I am all the time mindful there is close to a million unpaid family caregivers in the UK, who are the backbone of dementia policy. They are central to care and support. Sally Marciano is a very experienced nurse, but also knows from the closest of family connections how dementia can affect someone. Prof Alistair Burns (@ABurns1907), the national clinical lead for dementia, often remarks that when a diagnosis of dementia is disclosed, it’s not only given to the person with dementia, but to his or her friends and family. This, I feel, is absolutely true.
I first met Toby Williamson from the Mental Health Foundation (@MHF_tweets) when he chaired a groupthink session in one of the fringe meetings of the Alzheimer’s Europe conference in Glasgow. We were discussing stigma in dementia, and thinking of possible strategies for overcoming stigma. Toby is at the Mental Health Foundation, and I find him extremely interesting to talk with. He shares a number of policy interests with me, namely human rights, equality and personal budgets. I name dropped Toby in a comment on Prof Julian Hughes’ excellent presentation on ethics at the annual meeting of the Dementia Action Alliance.
Thanks to Sam (@yeweestoater) for her unending support. I really value this – and I had a great time when I met Sam for the first time at the Beardmore Hotel in Glasgow earlier this year, for the clinical research network day hosted by Scotland.
I was invited by Norman Macnamara (@norrms) to a talk on global positioning systems and people living well with dementia. As it happened, I got lost on the way back to the lift of the Queen Elizabeth II conference centre, and Norman was very helpful! The Purple Angels continue to be an enthusiastic force of people raising awareness of issues to do with dementia.
I have decided I am no longer going to take photos on my digital SLR camera, as something always go wrong on them. Here’s a photo of Suzy (@suzysopenheart) and Jayne not taken on my iPad as it should’ve been (like Tommy Dunne (@tommytommytee18), I adore my iPad).
I was really pleased that Lucy Jane Masters (@lucyjmarsters) was able to make it to my book launch of ‘Living well with dementia’ earlier this year.
Lucy is a specialist nurse in dementia, and also studying at the Brighton and Sussex Medical School. Like me, Lucy shares a passion for the positive rôle specialist nurses can play in proactive case management in dementia, which I anticipate will be an important service provision change innovation shortly.
Travelling back to Glasgow was highly emotional for me; so was meeting people who’ve become a big part of life through Twitter. You certainly can’t fault Tommy Whitelaw (@tommyNTour) for the sheer dedication he has shown to raising awareness of lending a hand of support for caregivers. Besides, he’s a Glaswegian, and given that I was born in Glasgow in 1974, Glasgow is a special part of my own personal life.
There are people I met in 2014 – and I wish they’d come into my life earlier, really. I was always aware of the huge amount of work Agnes Houston in the Scottish Dementia Working Group was doing as well as Donna. It was only until I saw Agnes (@Agnes_Houston) and Donna whizzing around in the Alzheimer’s Europe (@AlzheimerEurope) conference in Glasgow that the penny finally dropped.
I don’t think I ever met Tommy Dunne until this year. Meeting Tommy and Joyce were definitely highlights of my year – and I think Suzy Webster is genuinely fantastic too. With them, there’s no bullshit at all. They exhibit kindness. They are not distracted by others – their focus and attention is a clear indication of their dignity and the amount of respect they command. I think some of the happiest times I had in total in 2014 were through the Dementia Action Alliance Carers Call to Action (@Dementia_Action; @DAACarers). They’re the sort of occasions where you do genuinely feel you’ve known people for ages – like weddings without any of the family traumas!
Twitter can bring with it some degree of mystique. But a general enduring trend of mine was that the people I met in real life were invariably even more impressive than how I knew them from Twitter. One clear example of this was Darren (@mrdarrengormley). I think I share attitudes and values with Darren. Darren really ‘gets it’. A real privilege to know – I’ve got a lot of time for Darren.
To say Charmaine (@charbhardy) is ‘strong’ would be to do Charmaine a disservice. I am completely in awe of how Charmaine doesn’t ‘complain’. Charmaine thinks she’s doing her best, but she’s doing infinitely more than that. I am extremely grateful for the time I had this year in going to Robertsbridge and seeing for my own eyes the garden that Charmaine works so hard on. And I am proud of everything Charmaine does. I am proud of her community. Her friends adore her (look at the bunch I met for example at the Ostrich and Tony especially). I loved meeting G who spontaneously showed me his PhD thesis from around the time when I was born (I was born in 1974). This photo of Charmaine and me was taken at University College London, where completely thanks to Charmaine I was able to attend a support group for carers of people with frontotemporal dementia. There, I had a long chat with Katy Judd. It was great to catch up with Katy, whom I remember working with at the National Hospital for Neurology and Neurology, at Queen Square, more than a decade ago. Prof Martin Rossor (@martinrossor), whom I think is wonderful, was the head of the clinical firm.
I’ve learnt a huge amount from the support groups this year. It also reminds me what an enormous privilege it is to know something about dementias in a professional and academic capacity, and what an honour it is to use this knowledge for the public good.
I’d love to go to the Ostrich in Robertsbridge some time in 2015 for a holiday; not least as it will give me an excuse to see Charmaine G and family.
The international forum
Before I got a chance to finish my sentence, ‘My name is…‘, Marc Wortmann (@marcwort), CEO of Alzheimer’s Disease International (@AlzDisInt), explained to me that he knew ‘exactly who (I am)’. I had a chance to thank Marc twice this year for the work of the ADI – once for the work on national strategies in dementia, and one for his report in which the ADI recommended avoidance of the word “institutionalisation”.
Helga in many ways is larger than life. Helga Rohra (@ContactHelga) just beams encouragement, drive, wisdom, leadership, principles, justice, realism, and charisma. A real joy to spend any time with. Here’s us in Glasgow.
Prof Facundo Manes (@manesf) was in the same research lab as me at Cambridge. He is one of the world experts in frontotemporal dementia now. I have extremely fond memories of his friendship at Cambridge, and he has become a lifelong friend. He is a ‘proper neurologst’, and has a huge amount of common sense as well as a real talent for research. I love his attitude to life, and the fact that he is so clearly very bright. He has taken the field of decision making in dementia into parts I could have only dreamt of, and of course I am eternally grateful for that. Facundo, as well as being a Professor at the University of Favorolo in Buenos Aires, leads at INECO – a huge tour de force in cognitive neurology and cognitive neuroscience in South America; and he is Co Chair of the research division of dementia, aphasia and other cognitive disorders for the World Federation of Neurology.
This year, I got put onto the International Advisory Board of the ADI conference to be held in Perth, Australia, this year. I really enjoyed reviewing about fifty abstracts mainly on stigma, younger onset dementia and dementia friendly communities. I look forward to these being presented, when I attend in person next year.
One of the biggest honours I had this year was being asked onto the Board of Governors of the BPP Students’ Association. Prof Carl Lygo (@carllygo), Professor of Law, and CEO of BPP, has been of massive support to me personally. He’s supported me through the stormiest of weather. Also, Shahban Aziz (@ShahbanAziz), CEO of the BPP Students Association, has become a true friend of mine. I get enormously proud of them both whenever I see them in real life, or on Twitter.
In one part of my life, I thank enormously for the happy times I’ve had at BPP Law School. I not only studied for my ‘graduate diploma in law’ (and bachelor of law), but I also did my legal practice course there. This was via brief detour of doing my MBA at BPP Business School and my Master of Law at the University of Law. BPP has been a massive part of my professional and personal rehabilitation. Now, my understanding of business strategy and law make complete sense.
Here I am with Shaun (@DiasShaun) and Shahban.
I had the pleasure of talking to Gary at great length this year twice. Our conversations ranged from conflicts of interest to conspiracy theories. I think it’s fair to say I have met few people as thoughtful or as intellectually versatile as Gary Slapper (@garyslapper). We share very similar values. I am looking forward enormously to his new edition of ‘English legal system’, which reminds me of the second love of my life – the legal profession.
I have enormous respect for Prof Wendy Savage (@wdsavage). Wendy Savage and I share not only a passion for the NHS, although Wendy’s campaigning is in altogether different level to mine (being far superior). And Wendy, I suspect, shares similar feelings about the medical regulator, the General Medical Council, as me.
This year saw me trying to get out and about a bit more. I met Sharon (@SharonAvraham) outside the Harold Wilson room for a meeting which Jos Bell (@jos21) had brilliantly organised. Jos has worked so hard as Chair for the independent Socialist Health Association London division this year. Jos has also been a real rock of support this year, which has been tough for me. I am inevitably eternally grateful for this.
I saw Andy Slaughter (@hammersmithandy) speak for the first time in Portcullis House. I am of course fully aware of the West London hospital reconfiguration, and I thank Andy enormously for campaigning on this issue. I am also grateful for Andy’s lead against that nasty Legal Aid and Sentencing and Punishment of Offenders Act (2012) which saw legal aid being throttled. I am a firm believer in access to law and justice, as well as access to medicine. Of course I am mindful that Sadiq Khan, currently the Shadow Justice Secretary (@sadiqkhan), will have a difficult year ahead.
For the first and only time this year, I had an amazing smoothie and cheeseboard selection in the restaurant of the National Gallery. Like the late Baroness Thatcher, I have developed a habit of turning up to everything early. I turned up to the event in Trafalgar Square to support the NHS early. Jos knew I would. I had a great time, though.
A poor start
The very beginning of my life I don’t feel was a poor start.
I am Scottish. I went back to Glasgow twice this year in fact.
Glasgow is where I was born in June 1974.
Undeniably I feel I’ve come a long way since that I day I had an epileptic seizure at the Royal Free Hospital due to bacterial meningitis in 2007. Things got worse when I had a cardiac arrest, and then had six weeks in a coma. While I am physically disabled now, I am happy of course that I have been in recovery from severe alcoholism for about seven and a half years now. I feel strongly that anything can happen to anyone at any time.
I went up to Manchester several times in 2014 to see the GMC – my meeting with them was adjourned the first time around.
I ended up, therefore, contemplating in Starbucks.
With the free Wifi, it was like being on holiday.
It was amazing to meet @kyrakee who found me there. Kylie had just hopped off a tram, perhaps having worked out the clues from my cryptic Twitter clues?
I know this Starbucks now, like the Arnedale Centre, like the back of my hand
2014 was an opportunity to apologise to the medical profession which I strongly feel that I had let down previously. My late father amongst many others would have wanted me to have made this apology to the GMC (@GMCUK).
It was a massive honour to be put back onto the GMC register. I don’t think I have ever been happier. To be put on the UK register having lost the opportunity to be there is a massive deal. The GMC oppose all restoration requests not because they’re fundamentally difficult; but because the burden of proof must be on the applicant to prove that they can fulfil their duty of patient safety. There is therefore a necessarily high threshold for this, and now that I am in recovery, I don’t underestimate the enormous privilege to be regulated by both the medical and legal professions.
Martin Rathfelder (@SocialistHealth) took great care of me in my numerous visits to the GMC in Manchester this year. I have very happy memories of the numerous Chinese restaurants we frequented too. Martin was a crucial component in me trying to think positively about the whole experience. Manchester, after all, had been a very sad place for me and my father back in 2006. On a different note, I currently enjoy being on the ‘central council’ of the Socialist Health Association.
I am completely in awe of the GMC. I would say that, wouldn’t I?
Happiness at last
All these life experiences encourage me to try to take life easy when I can. Like a Koala, I can present #KoalaKlaws. I can even, if pushed, go for the #KoalaKill. I therefore have natural affinity to the Koala.
The man on the right of course needs absolutely no introduction. I think it’d be impossible for the English dementia policy to be universally liked by everyone. That I say not as means of an excuse, but because I am genuinely in admiration of how Prof Alistair Burns has served as the clinical lead for England. I met for the first time this year Alistair (here at the DAA Carers meeting at Smith Square, Westminster). I also met Sally Greengross (the Baroness Sally Greengross) for the first time this year. Sally’s the Chair of the All Party Parliamentary Group for dementia. I promised Sally in fact that I would include a chapter on arts, music and creativity in my next book. I like Sally would like to include some of the positives too in the narrative, and looking into this for Sally was a huge delight.
Next year will be a gruelling one. The last few years have not adequately safeguarded against causing misery for disabled citizens. Legal aid was murdered. Criminal barristers were in uproar. The NHS saw a piece of legislation which imposed a heavy penalty for the first time for NHS contracts not put out to competitive tender in all cases other than a sole bidder. The record waits for A&E were a disgrace for the operational management of the NHS in England. We now have a situation where it is difficult sometimes to discharge people in a timely fashion to social care. Bringing together health and care next year, if there is a majority Labour government in the UK, as “whole person care”. The repeal of the Health and Social Care Act (2012) which turbo-boosted the privatisation of the NHS, defined as the transfer of resources from the public to private sector, is now desperately needed. I wish Andy Burnham MP (@andyburnhammp) well. I sincerely hope he can start work as Secretary of State for Health and Care in 2015.
Conferences: a necessary evil?
I really didn’t know what to expect in the Alzheimer Europe conference in Glasgow. I must say that people with dementia and carers were certainly not involved in any tokenistic way. I was happy to be there. Thanks to all at Alzheimer Europe for such a brilliantly run conference; including the work done by Gladwys and Jean (@JeanGeorgeAE).
The conference brought me back to my academic roots – which is no bad thing.
As I grew in confidence this year, not just personally, but also in my opinion of the national train service providers and the London termini, I wanted to travel to conferences about dementia more. As the year progressed, my attitude changed from conferences wanting to sell you something, to conferences being happy places where you shared knowledge and experiences. Besides, they for me became happy places for me. Here’s James Murray-White (@sky_larking) and Chris at the Future Inn, Bristol, just shortly before our day hosted by Alzheimer’s BRACE (@AlzheimersBRACE).
Tommy Dunne and Chris Roberts were sat right at the front of my talk in Manchester. The turnout wasn’t massive, but it meant a lot to me that they were there. There was also somebody in the front row who was very nice to me; his mother had just been diagnosed with a dementia. To make a small difference to just one person means a lot to me. I’ve also felt this about ‘Dementia Friends’ (@DementiaFriends) – it’s not the quantity of the actions, it’s the quality.
Getting a chance to fill a void in print about living well with dementia meant a lot to me this year.
I straddle currently two professions, but I’ve been attending out of support (but not participating in, due to my disability) the legal aid walk for the last few years. Thanks so much to Bob and Natalia who invite me every year. I volunteered once pro bono in the North Kensington Law Centre, the oldest law centre in England, in welfare benefits. I had a brilliant time, and I would strongly recommend this type of work to any law student.
This was a bit of sneaky product placement for my book, of course.
I was totally amazed to see my book in print. I dedicated my book ‘Living well with dementia’ to my late father, but of course without both of my parents this book would’ve been impossible.
Thanks to Prof John Hodges in NeuRA, previously Chair of Behavioural Neurology at the University of Cambridge, for the support he’s given me for my first book ‘Living well with dementia’ (where he indeed kindly wrote a Foreword), and also for my second book ‘Living better with dementia’.
Above all, I was reminded from Truthful Kindness (@truthfulkindnes) this year not to worry about things which were clearly out of my control. This mantra, the “Serenity Prayer”, is how we conclude each meeting for people who’ve had alcohol problems. There comes a time when some people, having successfully survived a period of abstinence, go into a period of recovery. That’s when you get used to life in the absence of alcohol, and it’s normal. You don’t get cravings – you don’t notice alcohol – you can go into pubs without it even being an issue. So if things don’t go my way, invariably out of my control, I don’t fret about it any more.