A Doctor’s Dementia Primer

Doctors are trained to cure patients, or, rather, cure diseases.

They assess symptoms, diagnose, and decide treatment.

Surgeons cut and sew. They mend people. As a cardiothoracic consultant said to me the day before my coronary bypass…

‘The bad news is, you are going to die. The good news is, I can save you.” And he did.

Anaesthetists make it possible for surgeons to cut and sew you. They see a body as a system and understand how everything is linked and interdependent.

I imagine physicians do too. They seem to be, well, just experts on everything!

Psychiatrists work out what is going on in the brain and endeavour to deduce treatment for symptoms that are not the norm or expected, or that cause misery or pain.

General practitioners know enough about almost everything to be able to point us in the direction of an expert, when we need one, and to provide low level treatment when we don’t.

Palliative care doctors…now, they are interesting. They deal with terminal illness. They know they cannot cure, and work to give patients best possible quality of life, free from pain, until death.

Think about dementia.

It’s a physical disease in the brain. And it is terminal. Incurable.

Cells in the brain die or connections between cells tangle and stop working. At the moment this cannot be stopped or even slowed.

There are some medications which speed up healthy areas of the brain which then compensate to an extent, in some forms of dementia, notably Alzheimer’s Disease.

For some people, higher levels of education, IQ, or intellectual training, create ‘cognitive reserve’, and this helps balance against the deterioration in cognition resulting from dying brain cells. So symptoms become evident more slowly and later.

Imagine you are a doctor who has been trained for ten or fifteen years to know everything about an area of disease, such as kidneys. Or orthopaedics. Or bowels. You will not know anything about dementia, beyond your few hours at university on the subject, or your day to day experience of meeting patients. And of course what you pick up and ingest from day to day ordinary life.

Imagine you are a doctor who sees things as right or wrong. As healthy normal, or diseased. Your job is to change diseased into healthy. Or at least to remove or stop the disease.

Imagine you know very little about dementia, except that it is incurable.

Imagine your knowledge of dementia is that it affects memory, and that a diagnosis therefore means a person cannot remember anything.

Imagine you are a GP who sees a dozen patients a week who live with dementia. And another few who may exhibit or report cognitive difficulties.

‘There is no cure for dementia. What is the point of referral for assessment?

‘Dementia is about loss of memory. Dementia means you cannot drive. Dementia means I cannot do anything to cure you.

‘What the hell do I do?

And, of course, there are almost no services or support out in the community for the patient in front of you.

‘This is insoluble. And it pisses me off. And I am helpless.

……..

Luckily things are rarely as green or red (sic) as this. How many GPs actually don’t want to do their very best for their patients? Thankfully very few. Yes, they are being ground down, but they are humans!

But the question remains, what in reality can they do for their patients?

And what difference would a full understanding of life with dementia bring to any of the doctors in any specialty?

Well here is a list of what every doctor should know, and what they can do, to help people living with dementia, diagnosed or not, live as well as they can.

……..

1 Dementia is not about just memory.

2 Terminal, irreversible, unstoppable, brain disease results in dementia.

3 Every single tiny action is controlled by the brain, and will be disrupted if that particular bit is diseased. This includes things that happen without active thoughts…like digestion and bowel control.

4 Brain disease therefore may and does affect any element of a person’s physical and mental existence, from balance, to continence, to word finding, to mood, to memory. And much more.

5 Brain disease can present symptoms at any age, even though most cases will be at 70+. 5% of people with dementia are aged between 30 and 65. Watch out for these, who you may think are stressed or depressed.

6 People with a diagnosis often retreat into isolation and despair. They feel bereaved. This makes their symptoms worse, and their lives miserable. Your job is to enable them to get back into their communities, to socialise, to do what makes them feel good and smile. If you do that they will not be visiting you so often.

7 You cannot expect to understand a person living with dementia in eight minutes. The person needs time to gather thoughts, find words, reflect, communicate. And you need to ‘hear’ them, so give them double appointments. Fetch them back for a proper session. It will save you time in the future.

8 Remember, above all, that just like any other disease, there is no one template that fits all. Surgeons find variations in anatomy which they work round. A person with dementia is like no other person with dementia. Who knows which of the 50 billion brain cells are affected? You certainly don’t. Understand/see the person in front of you, not a stereotyped label.

9 Do not assume that if a person has difficulty remembering things (and that does not affect us all) there is no point in telling us to do something. Do, however, help us to recall what you said. Write it down for us, or ask us to do so. Ask us whether we use any tricks at home to remind us, like Alexa, or post it notes. Help us get these invaluable aids to living.

10 In a hospital, when you talk to us come down to our eye level. Sit on our bed. Draw up a chair. Come close. Let me read your lips. Talk to me. Allow me time to take it in, reflect, and answer you. Allow me time to ask my questions. If it’s noisy take me to a quiet area for our conversation, or get others to be quiet. Write things down for me to keep and read later.

11 If I am upset and behave in ways you don’t understand, it’s because I am frightened or in pain, or just don’t understand what’s going on. Find out what it is. Don’t drug me. Don’t tie my wrists. Don’t lock me in. There is always a reason, and you can do something about almost every cause.

12 Learn about my life from my family and make sure you read my This Is Me document. If I don’t have one make sure I get one! Use what you know about me to talk to me about what I can remember from my past, and to find out what gives me pleasure. My preferences and habits.

13 Remember that if you take time to understand me I will stay in your hospital for a shorter time, and you are less likely to see me back again. It will be good for me too!

14 Every time we meet, tell me who you are and what you do. If you need to do something to me, like take blood, manipulate my leg, palpate my tummy, take time to explain to me before you start. I may not understand if you cause me pain. I may think you are attacking me. Or you might remind me of a horrible experience from childhood, like abuse.

15 Be patient. Smile. Take your time. Even if you are run off your feet and knackered.

16 Assume first that, given time, I CAN understand. Assume I have capacity. Assume I can make decisions. (Even if you disagree.) Only if it is clear after trying that I cannot, talk to my family carer or friend. But check first that this is the person I trust and who knows me best. This might be my neighbour if family rarely visit.

……..

I could go on, and on…but these are what every doctor or other health professional should remember and live by.

You CAN help us to live well, as well as we can, and to enjoy happiness.

We CAN continue to socialise, to do what makes us smile, with a little help and understanding.

And towards the end you CAN enable us to die well.

Exponential chaos. What the hell is going on?

I attended my local CCG monthly public meeting this week.

I go now and then, usually if there is a current furore over something.

The maternity investigation at my local hospital? 900+ cases over 50 years now being looked into. Avoidable deaths, damage and awful experiences for mothers and babies.

The farcical reorganisation of our hospitals in Shrewsbury and Telford, the cost of which has risen from £312m to £498m before the business case has been approved. Including at least £100m for backlog repairs in a 50 year old concrete hospital.

(Dur. Build a new one!)

226 12+ hour trolley waits for admission through A&E in two weeks this month. Exponentially catastrophic trajectory since the last reported (worst in England) of 60 in November!

Those poor staff trying to stop the tide. And those poor patients getting, obviously, poor, probably unsafe, care. Dying sooner. In pain. Discomfort. Frightened.

I no longer know who is to blame.

Apart from lack of planning and funding over ten or more years. Lack of facing the future. Lack of social care. Lack of decision makers capable of doing their job.

And that comes down to government and health and care system leaders.

We are where we are. But we/they do not seem to be able to grasp what needs to be done NOW.

When asked why the acute hospital is failing so spectacularly, our CCG says ‘because of increased demand’.

Dur. Yes. And…? What are the causes of increased demand? And why have you (and other system leaders) not been working on this and reducing demand since the pattern started?

Yes, you are developing Care Closer to Home, to manage a small number of high risk patients out of hospital.

But if the population is getting older and becoming more frail in later years, (instead of dying!), could you not see this coming?

Why the huge exponential increase in the last two years?

If there is nothing that will prevent this, we need a lot more beds and staff. (Well we probably do anyway, as bed and staff numbers gave been falling (whittled away) for years, in the name of efficiency (and funding reductions).

If there ARE things that can be done to prevent need for admission, and attendance, why on earth have we not made serious efforts to do these?

We are, I think, shoals of fish floundering in an ever receding sea. No one knows what to do.

In the American system, sick people who cannot afford insurance simply don’t get treated. So in a sense the system can never fall over.

In our system, we expect everyone to be treated, but refuse to pay in the funding that such numbers require.

Result? Chaos. We get what we pay for. We get what our government gives us. We get what our system leaders can manage to organise.

(And perhaps what the Tories secretly want to happen.)

……

Why did I waste three hours of my life?

The reason I sat for three hours in the front row of the public seats this week at my system leaders’ (CCG) meeting, was to protest silently about the continuing lack of care or support for people living with a diagnosis of dementia.

I wore a tee shirt that told them they were ignoring 3,800 people with dementia in Shropshire, who live with ‘terminal brain disease’.

And on the back? ‘Equality Act’.

And, yes, they ignored me. There were some looks and smirks. No one approached me. No one asked me about it. And dementia received the usual accolades in the Performance Report.

71% diagnosis rate…above target.

80% of those diagnosed had care plans and had had a face to face review in the last 12 months.

And that was that.

Only, they are lying.

We do NOT have care plans. And we do NOT have face to face reviews of our non existent care plans.

How do they get away with this?

GPs get paid for these fictional reviews.

And we do not get any meaningful support to live well with our brain disease. We do not exist unless we are likely to be admitted to the mental health dementia ward. At which point a crisis team intervenes.

And 35% of inpatients in our overstretched hospital have dementia and stay three times longer than those without.

What the hell is going on!

I know who I am

I have banished alcohol from my life.

I am an alcoholic, and I have decided that I will be a better, happier, more productive person without alcohol.

And I will be a better husband, father and grandfather too.

I might even live longer, though that is a mixed blessing.

I am posting this blog because I believe that part of changing my life is admitting in public that I have been addicted to alcohol all my life.

My parents drank too much, I drank too much. I learned from them that the way to escape from the stress and upset of unhappiness was to drink.

My parents were very unhappy with their loveless relationship and with their lives. My childhood and schooling were abusive, and I have never escaped the consequences. I was born into the comfortable, professional middle class, sent away at 11, bullied mercilessly, and totally lacked the skills and confidence to stand up to it all.

I adopted tactics. Keep away from groups, teams. Do solo activities. Be alone. Drink. Hide. Forget.

Chronic lack of self esteem, fear of male environments, anxiety…I have managed them, lived with them, but they have nearly destroyed me.

I am not alone in this. Either in alcoholism or abusive, loveless childhood. There are many others.

I have tried to change many times. During a long illness 25 years ago I stopped drinking for four years, without much difficulty. Then I slipped back. Slowly but inescapably. Work pressures, stress, anxiety…

I can go a few evenings without a drink, but then I may get a little elated and can’t stop. Or I just think, why the hell not?

I usually have had a drink every evening, while cooking, sometimes before. Not during the day.

And after a drink I lose my ability to control my decisions. So I do unwise things.

I buy things I want (but may not be able to afford). And doesn’t the internet make that so easy!

I say things which are a little (or a lot) rude or unhelpful.

I eat more than I need and should. And then more.

I have another drink. And another.

I lose my conscious control.

And my dementia is part of all this. Because that too has loosened my conscious control.

Luckily, after diagnosis I was prescribed donepezil, and this restored my ability to control my language and actions. My conscience or my inner voice of control was restored. But alcohol damages it again.

Alcohol also destroys my balance. I just fall over after a few drinks. Wobble doesn’t come into it. And again my balance has deteriorated with brain disease.

So I need to push alcohol out of my life.

I have moved all alcohol out of my house now, given to my son to store, so we can use it at parties or give it away. But there is none in the house. And that is important. I am not strong enough if it is readily available. Yet.

This is not going to be easy. I know.

I will probably have many occasions when I gasp for a glass.

I gave up smoking in 1979, after six years or so. That was relatively easy, but I still have occasional urges to buy tobacco and papers.

Alcohol will be the same.

I read a piece in the paper over the weekend about a woman who similarly removed alcohol from her life. Lots of what she said chimed with me.

The pretence that just one glass was really not having a drink at all that day.

The fear of being dull socially if sober.

The lost mornings (and sleep) when I have been pretty useless. Even just a little bit.

Not being as sharp as I might.

So, it’s gone.

And I have to keep my mind in equilibrium to make sure I can do this. I will find ways of being calm, of reflecting, of enjoying simplicity and quiet.

My five ways of wellbeing mantra will keep me going, as long as I remind myself regularly.

And I thank my wife for supporting me in this, as well as tolerating me for so many years. I have given much cause for misery.

Of one thing I am sure.

Dementia and alcohol do not mix well. My fragile hold on reality and physical control cannot survive the numbing effects. And having used alcohol to escape my demons for 60 years I have to face them.

And I have written this in order to publicly admit that I am banishing alcohol from my life, and to apologise for the times when I have allowed alcohol to change my behaviour into boorish, rude, foul mouthed, bad manners. If you haven’t seen this, you are lucky, and I am glad.

But I know who I am.

Onwards, upwards, in yer face

Well, I suppose it was to be expected.

Nearly two weeks off. Family home. Christmas feasting. Diet broken.

Our Christmas day was lovely in its way, but the noise and people drove me crazy.

And articulately crude. (Sorry)

Then some lovely weather. Dry, good to walk in. Birds confused and singing spring song.

Out in the garden, digging a new patch for more flowers and veg.

Ordering seed, dahlias, gladioli, chrysanths.

Always a great feeling of spring round the corner…

And now it’s nearly time to start again on the other stuff.

I haven’t done nothing. My CCG got a long analysis of their board papers since April 2017, looking at references to dementia.

Searching (acrobat made it easy) for any mention, any statement, that dementia is on their radar, in their plans.

Searching too for any equality data or statement relating to dementia.

Of which there was none. Of course.

I asked by FOI last month for every Equality Impact Assessment carried out in relation to dementia since January 2017. The answer was: none, because there was no need. Qualified by saying that, of course, the CCG had carried out many Equality Impact Statements in other areas during that time.

No need? For God’s sake!

So I have asked how they know that they are complying with the Equality Act 2010 in relation to people living with dementia, and how providing dementia companions (navigators/advisors) in 20% of the county but not the rest counts as equality (equity) of care.

There is no EDS2 assessment in the board papers over 33 months. Having been a member of the CCG group that looked at EDS2 and public participation until 2016, when the group folded, I rather think none has been done at all. So I have asked the question.

What do these people think they are doing? Rights are not optional. Fairness is all we ask for.

If it were cancer…! Yep, you know that one.

And this is the CCG that has stopped all public questions at their meetings. Only advance written submissions are accepted, and responses are printed papers left on chairs at the meeting.

That is how much they welcome public participation and information sharing.

Yes, they have had a really hard bashing over our hospital reconfiguration plans…for four years…which no one in Shropshire has the ability to sort out properly.

(Cost of £312m during consultation is now £490m and unaffordable. And they didn’t see that coming? Methinks they hid that one away the day it dawned. And they want to refurbish a crumbling hospital with £100+m outstanding repairs! Rather than just build a new one on a better, fairer site.)

As I say, the CCG has had a bashing for years, so they closed it all down. That’s the way to earn your public salary providing healthcare for your public. Close us out.

Do to us, not with us.

[Did you notice that this morning I have really bad back ache? Must have tweaked something lifting a large pot yesterday. Feels like I have a large rusty nail sticking in/out. So perhaps I am a bit crotchetty today.]

So what will 2020 bring for me and my kind?

Shropshire CCG may decide to fund Dementia Connect (Alzheimers Society), ie dementia advisers, across the county.

Or they might decide to extend Dementia Companions (navigators) across all Shropshire.

They just might require the Memory Service to provide meaningful post diagnosis support for everyone, rather than just those on dementia related medication. (And it’s not meaningful, by the way.)

They might work with ‘us’ to introduce co-produced living plans that focus on what matters to us.

They might carry out an equality impact assessment to establish whether people living with dementia are discriminated against though their CCG choices/decisions. (‘They are’)

They might insist (and monitor) that dementia advisers/companions/navigators are fully skilled up to work effectively with us. (As committed in the Dementia Strategy, but never followed.)

They might, even, choose to meet some of us and work together to devise better care after diagnosis (palliative care from diagnosis of terminal disease), ongoing support when we need it.

We are getting well up the richter scale here, of course…

[I need to say, since he may read this, that our CCG dementia lead Tom is great, and working closely with us. (I taught him English for a year, so it’s understandable.) The question is whether he will be listened to?]

And then, away from the CCG, what else is going to happen?

There will be the local health economy dementia steering group, which will try to get decision makers (to attend) to improve our services, and introduce new Living Plans.

The local DEEP groups project to establish up to a dozen DEEP groups across Shropshire market towns. Five so far. Ten would be a real success.

Our Admiral Nurse research project with DEEP groups across the country. The questionnaires will go out later this month.

And, for me, the Dementia UK LEAP group which comes together to provide insight and critical friendship for the organisation as it grows the band of Admiral Nurses across the country. Over 300 now I think. (Not, of course, across Shropshire yet, though one care provider group has employed one.)

I have almost joined my acute NHS trust’s new Equality and Diversity public involvement group. Almost, because it has not yet met and I have to attend some training sessions first, it seems.

Then there are other things I have been thinking about…

There’s the local DAA, which is forming a steering group with officers, in order to run a little more formally as a small charity. I shall probably ask to join the group without an official role.

Things will come up. Conferences, speaking opportunities. DEEP area meetings. Perhaps a DAA conference here in Shropshire/Telford.

I love those speaking slots. Yes they feed my ego, but they are exciting and I always meet lovely people, some I know, some I don’t.

….

And there is the garden, the grass, and Lupin. And getting to a beach for that exhilarating salty air, and inspiring views over the archetypal rhythms of waves.

And someone (who will remain anonymous) has suggested I write a book. Thanks for sowing that thought worm in my head!

It’s like back ache. It goes away and you stop thinking about it, and then a few days later returns, a rusty nail in your spine. And you spend an hour at 2.00am wondering what the hell it will be, contain, look like.

There’s lots to do, and time is running out. The hour glass is emptying.

Clive James’ recent death touched me. A fine, supremely intelligent and witty man who left us some wonderful poetry.

Forgive me, I don’t think I am about to die. I just recognise that every day I gets closer to being unable to do things that really matter to me. Like all of us, I must make good use of every day.

And as the labour politician Tom Watson, who recently resigned, wrote in the Guardian this week, I must surround myself with people who are relentlessly positive, rather than those who sap your energy and will to live!

Onwards, upwards, in yer face! Game changers. Hell raisers. Let’s get to it.

Are your marbles sparkling?

What am I thinking?

Just now, my thoughts are jumping around.

Like a bag of marbles dropped on a stone floor, they bounce around, knock into each other, scatter, and then lie still in little groups or pools.

Until someone disturbs them and sets up another knock and scatter, and they settle again, in a different pattern.

I remember playing marbles at school, ooh probably aged ten. Rolling them across the rough playground asphalt, trying to knock the others out. Winning. Losing. Beautiful roughly round glass baubles, with curious star shaped colour within.

2019…

Did we disturb the marbles?

Well I kicked mine around a bit.

Stepped away from chairing two groups.

Started a local project to establish a dozen DEEP peer groups around Shropshire.

Started a research project about how much Admiral Nurses and DEEP groups know about each other.

Re-launched and co-chairing our Shropshire and Telford Dementia Steering Group.

Continued to co-chair Dementia UK’s LEAP group of people with dementia and family carers.

Hassled the local acute NHS Trust to start implementing the Dementia Friendly Hospital Charter.

Joined their new Equality and Diversity User Group.

Hassled the local community health NHS Trust to restart a dementia steering group.

Blogged, tweeted, spoke…

And every one of these activities brought me together with wonderful people who are a delight to work with.

Their marbles sparkle!

My collisions with them set off cosmic sparks of pleasure and inspiration.

Together we are more.

And together we will achieve more.

And that is why I do these things.

I am no more special than anyone else.

My comrades in Riversiders DEEP group are all special. And they have grown their voices, and their passion to see change. And they too are hell raisers.

….

The election campaign is now done.

Christmas is near, and then…

2020.

More flicking and kicking around marbles.

Nothing from the new government about restoring cuts to social care. Just a vague commitment to work with other parties to find a solution.

Another one! We already have Dilnott. Do it! Don’t dilly dally again.

Nothing about dementia care. Or preventing postcodery.

The extra funding for the NHS is welcome and overdue, but a lot will disappear into historic budget black holes and repairs.

It’ll take years to recruit and train more nurses and doctors…and let’s not forget the extra allied health professionals we need too…Physios, OTs, Speech and Language, Pharmacists, Radiographers…

And social prescribing ‘agents’. In all GP surgeries.

We will all keep firing off marbles and sparking fires.

For me it will be more local than national. And social media.

Raising hell. Lighting fires. Fanning flames.

Making people talk about people living with dementia and carers.

Making those who hold funds and make decisions account for what they choose…because choices they are. And making choices for us is their (well paid) job.

Holding their feet to the fires.

Invest to save. Prevent high cost treatments and admissions. Keep people where they want to live, their chosen home.

Give better quality of life. Wellbeing.

So let’s rest for a couple of weeks. Be in the moment. Get outside to the park, or the hills, the woods or the fields. Remember the beauty and tranquility of the natural environment. Treasure it. Lock it in your hearts and minds for the coming months.

Do what makes you smile, inside and out.

And good luck to all of us in 2020.

Happy new year.

#dementiaelection2019

So here it is. Four days away. Five years of…what?

I have been asking the three main parties in England, every day since the campaigning began, what they would do for those of is affected by dementia.

38 tweets so far, some in several parts. Mostly retweeted each day too, by me. To get maximum exposure.

And to try to get a response from the parties.

Boris Johnson, Jeremy Corbin, Jo Swinson, Matt Hancock, Jon Ashworth, Luciana Berger…

I have tweeted directly to all of them.

To the Conservatives, Labour and the Lib Dems.

What will you do about post diagnostic support?

What will you do to introduce a consistent model of care…everywhere.

#Fair-Care-Everywhere

What will you do about support and respite and benefits for unpaid family and other carers?

What will you do about the £12bn cut from social care funding in nine years?

Why should we vote for you?

We are legion…we are 1.35 million.

We could swing seats.

We could choose the next government.

…..

And the responses I have received have been staggering

…ly non existent.

I have had an average of 15 retweets a day.

140,000 impressions over 28 days.

I have reached a lot of people. And each retweet has gone to those party twitter accounts.

But, no, they have not replied.

And, which is much worse, and much more depressing, the parties have said almost nothing about dementia.

….

Conservatives say they will double government funding for research. [Pharma may carry out the research; pharma will reap any income from treatments.]

And put £1.5bn into social care (after their £12bn cuts), though with no mention if dementia care. And work on a plan for social care in the future.

Again.

And sometime in the next five years no one having to pay for care will have to sell their house.

[Watch those weasel words…should they have added ‘during their lifetime’?]

….

Labour will make social care after age 65 free, with a lifetime cap of £100,000.

I don’t understand this. Why charge under 65s? As if they have a choice. £100k will bust them.

Labour will repeal Lansley’s Health and Care Act which created independent local healthcare systems/CCGs. They will deliberately create single models or pathways across the country, which would be good for dementia care, as long as the model is appropriate/right/co-designed.

….

Libdem policy seems to be, like the others, to simply (‘simply’?) put somewhere between £30-£40bn into the NHS.

….

So which proposals relating to those affected by dementia should we vote for?

Up to you!

….

But let me just add…

I read a cartoon by an Australian recently (in the Guardian). Aussies would apparently kill for some of the stuff Labour is planning. And the cartoonist could not understand why anyone would choose more austerity and poverty and lying buffoonery over fairness and justice and equality.

And I agree.

Hold your nose if you have to…but vote for what is right.

Rights V Needs

This is a letter I sent to my CCG this week in response to their formal answer to a previous question.

My CCG does not allow questions at their meetings. And written ones receive written answers that are placed on chairs at the next meeting. I had to ask for my their reply to be sent to me.

There seems to be a denial that ‘rights’ have any relevance, although there is an acceptance of ‘significant dementia need’, which they have singularly failed to meet thus far. Probably like many other, but not all, CCGs.

…………

Thank you for your response to my letter in October. This is what you said:

1. The NHS does not provide services on a rights based approach it operates on a needs based approach. There is clearly significant dementia need as you rightly identify that needs meeting and that is the purpose of current papers and work plans going through the system and SCCG governance at present.

2. We have plans going through CCC working group currently that outline what has been achieved and what is still required against the original strategy. Investment is required and this is proposed within our overall MH short-medium term investment plans at an affordable level. This will be managed through the usual governance process of business cases and will need to be signed off as part of the overall CCG spending plans for the coming period. Dementia is also addressed through the STW long term plan which will be published later this year.

Dr J………

Director of Performance and Delivery

In response to this I challenge your interpretation of ‘rights’ and needs, and your explanation of a requirement to meet these (or not).

I stated that people living with dementia, and unpaid carers, have rights. These are contained in Declaration of Human Rights and in the UK Equality Act, as well as in the NHS Constitution.

These rights include having our needs met, being able to lead fulfilling lives, having family life, and freedom to live as we choose. The Equality Act makes it illegal to discriminate against people who fall into the protected characteristics, which include people with long term health conditions. The NHS Constitution includes our right to appropriate treatment and care that meets our needs that result from a health condition, in this case terminal brain disease.

Taken together, these rights, which are not optional, require you as commissioners to ensure that the support and care we need as a result of our health condition, terminal brain disease, are provided.

You say you provide needs based health care. So, we have needs caused by organic, terminal brain disease. You should therefore be commissioning the care and support to meet our needs.

This is not rights based healthcare…it is needs based, backed by fundamental and legal rights, and these rights are not optional.

Historically dementia has been seen in society as a version of madness, of mental ill health, and incurable. In earlier centuries people with dementia were locked away. They also died young.

In our more enlightened times, we now know that terminal brain disease causes most dementias, and that while there are no cures there are many ways that people with terminal brain disease can be helped and supported to live as well as they can, and to have active, pleasurable family lives, engaged in their communities.

We also know there are therapies that support people living with dementia, which are backed with evidence of benefit. These include drugs that alleviate symptoms and activate healthy parts of the brain, activities that keep people’s minds active, and social prescribing approaches which keep people engaged in their communities, physically active, and which engender wellbeing. (The 5 Ways of Wellbeing.)

When people receive a diagnosis of dementia, apart from being offered a series of cognitive stimulation sessions (which have questionable evidence of success, other than as peer support), they get almost no support. If they are prescribed a drug they will be visited every six months. If not they often get no further support from the NHS or social care unless they hit crisis.

Dementia Information Support Workers, three part time in Shropshire, provide some support to a few, but most of us have nothing.

Dementia companions, included in the 2016 Shropshire Dementia Strategy, are provided only in two towns, Oswestry and Ludlow, and they work closely with some of those with a diagnosis of dementia.

Everyone receiving a diagnosis should be referred to and meet a Dementia Companion, in order to be helped to get the support they need to live as well as they can, and to cope with the emotional challenges they face. Of 4,000 people in Shropshire living with dementia, of whom 67% are diagnosed, only around 150 are receiving meaningful support from a dementia companion.

We know that families and supportive friends who provide unpaid care for people living with dementia find their work exhausting and emotionally shattering, and that they find the care system almost impossible to navigate to get help. When these groups of people reach crisis point they need expert help, in the form of Admiral Nurses. But while Admiral Nurses work in Telford and Wrekin, you do not commission them in Shropshire. So a Telford person in Shrewsbury Hospital can get support from an Admiral Nurse, but Shropshire people cannot. This is discriminatory. Indeed, a political, artificial border between one area and another cannot be used to allow health needs and legal rights to be met on one side and not on the other.

To summarise, people living with dementia have needs that result from their terminal brain disease. These needs are similar wherever they live, and are not determined by geographical or political location.

The CCG has a legal and constitutional duty to provide care which meets the health needs of people living with dementia and is failing to do so in Shropshire. Our needs in Shropshire are the same as those of people in Telford, yet the care they receive is greater. This is illegal within the meaning of the Equality Act, and fails to meet the principles enshrined within the NHS Constitution.

The CCG cannot hide behind their statement about providing needs based care, rather than rights based care. We all have needs caused by terminal brain disease but in Shropshire you are choosing not to meet these needs.

I end with this question: when will Shropshire CCG work with people affected by dementia to co-produce the services we need? There is precious little evidence of any sustained effort to do this at present, or in recent years. While the 2016 strategy document was co-produced to an extent, preconditions were laid down which prevented open consideration of all possibilities.

There is nothing to be afraid of. We will work with you, and help you, and we will not ask for millions to be spent; simply to provide the services we need to overcome the difficulties caused by terminal brain disease.

If you provide the relatively modest but appropriate support we need you will reduce hospital admissions, GP consultations, and early admission to care homes. You will reduce the stress on unpaid carers.

Meet us, talk to us, listen to us.

Yours sincerely,

George Rook

Be a game changer

It’s over for another year.

Thanks to the organisers and sponsors, who make sure so many of us can attend, and the organisations like the DEEP Network and Dementia UK who pay for our travel and hotels.

Thanks to the weather gods for tipping me the wink to leave early and avoid floods and cancelled trains.

Thanks to the wonderful helpers and facilitators who are just there when you need them, with a smile, support and kind words.

This year I felt incredible energy and enthusiasm, and passion, to make change happen.

I loved hugging my wonderful friends, and making new ones.

And I come away with renewed determination…

To kick down doors.

To disrupt cosy meetings.

And to make those who should know better do better.

I have always known that much of what we say and hear at Congress is preaching to the converted. But lots of people this year said that after sessions they felt renewed and invigorated to continue our struggle and our campaigns.

So Congress definitely works.

And it was the smaller sessions that were powerful, and which could have been on the main stage. But then the audience would have been distant and discussion limited.

Perhaps fewer, bigger, side sessions? Perhaps repeated, to allow everyone to attend in turn?

The venue was light and convenient, apart from the lift confusion! But I did find the big hall too dark and the sound system difficult to hear clearly. Or was it just the (poor) style of delivery?

Much better than that awful hotel in Brighton, with stairs you fall down, uneven floors, and dark lighting.

What did I learn?

That there is no public record or celebration of hospitals that are or may be doing good things for their patients with dementia. Apparently to list any would be to accredit them and risk discredit if CQC then criticised the hospital. Oh God!

There is a growing number of people who love with dementia who are able and willing to speak up in public and to campaign for change. It is wonderful to witness this growing social movement.

The next great step is to find decision and policy makers, local and national, and break down the barriers they erect around themselves. Like the environment protestors, we must sit down in the roads, glue ourselves to committee doors, interrupt meetings, shout it out…we will not stand for this any longer.

Make them uncomfortable. Make them squirm. Hit them where it hurts…in their heart. Make them feel guilty.

They accepted their jobs and they take their salaries. It is not acceptable for them to say it’s not their fault. There is no money.

Make a stand for what you believe is right.

So let’s get out there, wherever we live, and make our voices heard.

We each have a legal and human right to equity of care and support to live our lives as we choose, as well as we can. Our rights are not optional. They are inalienable.

We can (and do) do a lot ourselves, and we do it well. But everyone of us needs support now and then, and more so as our terminal disease develops.

And those friends, neighbours and family who help us need support too. Or they break.

DEEP groups empower people affected by dementia to speak up, to tell ‘professionals’ about the reality, and about what they need. With 140+ groups now there is huge social power to demand change, especially at local levels.

Take no notice of those who claim that dementia means you cannot do this.

Ignore the professionals who think people with dementia who speak up are wrongly diagnosed.

Stand up and prove that you still have your strength and your life experience and your skills. Brain disease rarely takes everything away, and not for many years.

Keep on going now. Do what matters, and what makes you feel good.

Be a game changer.

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I thought I would give a heads up for my Dementia UK Congress speech on Wednesday.

I know many who look at my blogs may not be attending, and others will choose different sessions on the day. And, well, I just want to get this OUT THERE.

We need to work together.

All of us.

To get what we all want.

A consistent model of diagnosis, care and support for people affected by dementia across the UK.

Care that does not depend on where you live.

Support which is tailored to meet your needs, not those of others, or guessed at by a manager at a desk.

And health and care staff who are ALL fully trained (level 2) in how to support people, living with dementia.

As I write there is another outbreak of canceritis. Liver cancer death increases this time. And yes, they need attention. And much of that needs to be a proper, effective public health approach which provides alternatives to excessive alcohol consumption.

But I am not going to preach on this, as I live in a greenhouse.

No, what gets me, more each week that passes, is the utter refusal or inability of many healthcare commissioners and managers to (want to) work to really provide good, appropriate support for people living with dementia.

Commissioners cannot possibly (or legally) argue that dementia is a local issue with a need for local tailored solutions for their own CCG, ie that dementia in one CCG justifies more support than in another.

Dementia in general varies very little, and then only due to population demographics. Thus, Shropshire should be spending more than average on dementia related support and care. But no…not in this particular wood neck.

People are paid sizeable salaries to manage our healthcare systems, and to ensure that within available resources, and making best use of these, the population is provided with the best possible care.

So I find it utterly repulsive that in some areas we who are affected by our or others’ dementia are ignored, pushed out of the door, and locked out of participation and discussion.

As someone else is recorded as saying,

If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?

Do we not have a disease?

Do we not warrant care and support?

Liver cancer? Oh God! Yes, we must get on with improving diagnosis and treatment, now, goes the cry. Again. Canceritis.

But, back to working together.

There are many organisations in the third sector that work to raise awareness about dementia and to improve support and care. I will not list them here, even if I could.

But I am struck that some notable ones find it hard to agree to work together. There is a sort of charity testosterone that flows through some organisations which creates misplaced arrogance and competitiveness and prevents partnership.

There are of course the requirements of charitable status and aims. There are also the Daily Mail front page fears, which can create severe risk aversion.

And of course there is the need to create good data on beneficiaries and achievements for the next funding application.

But come on folks, we are pretty much all working for the same thing. Aren’t we?

The best support and care that meets the needs of people affected by dementia?

Every good idea needs to be supported.

Every effort to influence change supported, added to.

And no claims that our idea is best and the only one we will support, or nicking others’ ideas!

Who should we put first?

Who should be at the head, the centre and the whole of what we all do?

Not our trustees, not our staff, not ourselves.

Not our targets, not our funders, not our commissioners.

No.

Those for whom we exist, people living with dementia, and those providing unpaid care.

You are saying I am unrealistic and unreasonable.

That I am living in a precious, intellectual bubble not of this world.

Looking through rose tinted spectacles.

Well, yes and no.

I have worked for a very large charity, and I know how they get stuck in their institutional ruts, and find other people’s ideas hard to swallow. And I know about targets and funders.

And I know that the best trustees want to bend and flex to meet beneficiaries’ needs. And most staff want this too.

I know that there are organisations out there that want to work together. And others that are frightened or arrogant.

So let’s do something about this.

Let’s work together, join forces, harness all our combined passion and resources.

Let’s get change.

Let’s put those who need us before our own needs.

Because if we all work together we will win… for those who need us.

Too difficult

Too difficult

……………….

‘We can’t offer our service to people who may not be able to follow the agreed programme.’

‘People with dementia may forget to do the activities we and they agreed.’

I hear this quite often, talking to social prescribing and falls support services.

Social prescribing involves talking about what matters to a person, what they would be interested in trying, what would help them get started again in their lives, keep engaged, get a job…

And the motivational discussion leads to an agreed plan of action.

Like going swimming, or walking, or to a library. Or trying out a lunch club at a local pub. Or a peer support group.

Trying the local WI or bowls group. Or reading a daily paper. Or learning a new skill like typing or how to use a tablet (IT type of course).

It’s all about getting going again, or meeting people, getting out of the house or flat or bedsit…activity.

And exercise groups like those for people at risk of falls – usually those who have already fallen! – similarly expect people who attend to go away and remember and follow the exercises they have been shown and may have learned.

So where does that leave people with impaired memory?

People living with dementia often have deteriorating balance. They also often develop perceptual difficulties and have frequent trips and slips. 

Especially where floors and pavements are uneven or change colour and pattern.

These people need to keep as strong as possible so they can withstand the wobbles and balance upsets they experience. They need core strength.

Yet they may be the people who do not or cannot get to exercise groups. Or whom social prescribers may pass over because of their forgetfulness.

When I ask providers about this issue I invariably get the same response. 

As above.

Along with…well what can we do about that? We cannot provide that support and help when we are not there. 

Very seemingly reasonable.

And very predictable.

And another example of people loving with dementia being written off because ‘we don’t know really know what to do about that’. 

And we cannot be bothered to work it out!

People with dementia matter. They are not ‘too difficult to care for’. They are not as good as dead so what is the point.

We need to find ways of providing the support that is needed. 

We do it for people in wheelchairs, or with cancer, or special needs. Why not for people with brain disease?

Too difficult.

That is the issue. Too difficult.

Or too expensive.

So what should we do?

Well, if a person needs support or help or care in order to do the specific activities that will help keep them safe they have a right to that support. 

And identifying that as a need identifies what is needed!

It might be using a little Echo for reminders. (£35)

It might be going into a person’s home and writing reminders around the rooms.

It might be making phone calls each day to remind them.

It might be visiting them each day or other day to do the exercises with them.

Shouldn’t the person living with dementia, if they have this need, also have a support plan? And a personal budget for support?

Who is going to make this happen?

A Dementia Companion. An Admiral Nurse? A social prescriber? A GP?

Do we not all have basic human rights? (which are not optional!)

Is there not an Equalities Act?

We must not give in to the ‘too difficult’ excuse.

And we must not leave people with cognitive difficulties brought on by brain disease to just give up and die.

I will never accept the commissioners’ arguments that they have no money. Or that they have no evidence.

Of course there is bloody evidence. Social prescribing works. Exercise works. Activity works. Nature works.

This is proven.

And there is money in the system. Because if you provide the support I am talking about you will save shedloads through reduced hospital admissions and broken bones, and delayed or avoided admissions to care and nursing homes. And family carer breakdown.

Cost of hip or pelvis repair, plus extended stay, plus rehab…say £10,000.

And what about wellbeing? And quality of life? Which are what social prescribing and activity are all about.

It is NOT too difficult.

It just needs determination, vision, innovation, imagination, and 

Compassion.