Who on earth are you?

In a scene from series three of House of Cards, a supreme court judge with worsening dementia is complemented on the sharpness of his mind.

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He replies that his clerks had written the “opinion” that he had just published.

“Yes, my mind is still sharp. The trouble is, I can’t remember the name of the person standing in front of me.”

I can’t get that out of my mind. Just keeps coming back.

In recent months lots of people have said to me…

No one would ever think you have dementia…

You can still remember all about this…

Sharp as ever…

But then, at the last Shropshire Dementia Action Alliance meeting a lady walked in whom I had met a week or two previously.

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“I’ve met you before but I can’t think who you are.”

She had every right to feel offended, but on reflection probably understood.

And last night I dreamed vividly of being at a university, round a seminar table, unable to remember names, what I’d read, or even decode quickly what was being said.

In recent months I’ve started to wonder whether my diagnosis was right. Have I really got dementia, or just mild impairment and depression?

“Remember, we did all those tests, and we didn’t make the diagnosis lightly,” said my outreach nurse.

I’ve read of others who have had diagnosis confirmed then reversed years later.

But then I see that scene again…I can’t remember the name of the person standing in front of me.

Social groups, interactions, meetings…getting more difficult to tune into and remain tuned.

I take a long long time to catch up if I miss the start of a meeting. Like fifteen minutes to get my head around what is being said, make sense, find the context, work out what has been said before, to make sense of what’s being said now…

Know the feeling?

Last weekend my family and two partners came over. Plus a big lab.

I was overwhelmed after a few hours. Could not cope at all.

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The quick banter, the names, my concerns over getting the food right, keeping the house tidy…

I can do banter, but on my terms, at my instigation. And then I have to drop out.

Half a day great, next day useless.

I felt so bad and guilty for spoiling their weekend, after their efforts and cost to get here.

Their dad a zombie. Elsewhere. Unsmiling.

How long will they want to come?

And so it returns, and reruns, just when you are thinking it’s gone away.

When do I say to family, no you can’t all come together again?

No you can’t have a party here again.

I don’t want to go there, to that lonely place where no one wants to follow.

So I’ll keep trying.

These are the thoughts of a person with dementia who does not want to withdraw (see Kate Swaffer). Who likes the idea of being with people but can’t quite cope with social occasions. Who wants to go out in the evening but can’t stay awake. Who needs routines and the familiar. Who can no longer be arsed with polite chit chat.

A person who has a wealth of experience and a sharp brain, and is frightened of all of this turning to mush.

Normal ageing? At 64? No.

It’s not time yet to give up.

But who is this I’m talking to?

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Pathway of ‘care’ vs disAbility support for people with dementia

Kate Swaffer describes the current pathway…medical model…fir people with dementia, as against the social model which many of us look for.
There’s just so little support post diagnosis to live well.

Creating life with words: Inspiration, love and truth

The following are the two pathways of support published in my book, (Swaffer, K 2016, What the hell happened to my brain?: Living beyond dementia, Jessica Kingsley Publishers, p.p. 165-166) that many have recently asked me for. So, in case you simply wish to refer to them, I am adding them from a set of power point slides that I used recently!

Slide1 Swaffer, K 2016, What the hell happened to my brain?: Living beyond dementia, Jessica Kingsley Publishers, p165.

Slide2 Swaffer, K 2016, What the hell happened to my brain?: Living beyond dementia, Jessica Kingsley Publishers, p166.

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Co-producing Dementia Support for Shropshire

Shaping the dementia landscape in Shropshire.

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I left my sickbed yesterday to hear the first reports of our wonderful co-production project to learn what people affected by dementia in Shropshire thought about support they do receive and should receive.

I was involved in two of the six co-production meetings of the project. There were gatherings of young onset people, carers, providers, our SURP group, Shropshire Dementia Action Alliance, around the county, where people were asked simple questions.

What is working well for you? What is not? What would you like to see?

I cannot say just how the report will report. But the headlines are something like:

People want trained dementia advisers, probably working out of, though not necessarily employed by, GP practices, to support them consistently through their journey.

Carers need respite from their caring responsibilities and stresses, both regular and reliable short periods in their own homes or at peer groups, and the longer crisis driven periods, perhaps in other places.

All people affected by dementia value peer groups highly, but few exist or are readily accessible. Often these should be single sex, and carer or cared for, not both together.

People want information to be tailored to their individual needs…in the form and and at the time they need it.

Lots more dementia friendly community groups and activities that we can all join in…not groups for people with dementia! Walking/ambling, bowls, knitting, walking football, film showings, tea dances… you name it – let’s do it.

Better sharing of our information between organisations in health and care so we don’t have to keep repeating our stories.

Better quality carer assessments with real support offered when asked for and needed to prevent crisis.

And we all want more openness and honesty, less stigma, about dementia.

……..

I suppose I could say

“…told you so.” image

This is not new. It’s what research and pilots have found and evidenced.

It’s what I said at NHS Citizen last year.

(NHS what?…where?…um…)

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It’s what so many of us have been saying.

But the great thing is we now have absolute certainty that it is what people here in Shropshire who are affected by dementia say.

Commissioners at health and care (together?) can now have certainty about what is needed.

The health and wellbeing board can no longer pretend that its superficial strategy and action plan of the last two years was any more than just that. Superficial.

This is how local care for local people should be evolved. With the people, by the people, for the people.

Let’s hope that this low cost, co-productive project, admirably led by our local Healthwatch Shropshire, will be the model for future service development for all sorts of care. Diabetes, IBS, COPD…

Incidentally, thanks to Public Health for funding this project. No one else would! Commissioners? Nah.

It’s all about individualising and personalising care and support. Providing a range of services and support, through a range of providers, that are easily accessible (and known about) by those who need them when they need them.

That is the future of health and social care.

Support when you need it, to enable you to live well with your conditions.

Then we can disinvest from expensive acute care because we won’t be visiting hospitals as often, or lying in their beds deteriorating while they scrabble around for expensive care and support packages that they think we need.

See the big picture. Be creative. Use the voluntary sector. Create a range of social prescribing type support for self support and wellbeing.

A social model of care.

Demedicalised.

This is just the start.

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Oh Brother SATH, you’ve let me down

Oh brother

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You have let me down.

So let me down.

I’ve worked with you for, what, six years now.

I’ve challenged you to improve the experiences we have when in your care.

I’ve supported you in public and in private when I’ve known of your failings, because I believed that most of the time, most of your people were trying to do their best.

You’ve thanked me nicely for my work. “We rely on patients to tell us how they see it through their eyes.”

I’ve sat through meetings, endless meetings, meetings without visible or tangible outcomes. Meetings where you have taken us through your agendas of your chosen items.

I’ve been through two fiddled patient chair elections, where you were determined I would not be chosen.

I’ve listened at listening events, to your staff and your patients.

I’ve walked the GEMBA walks with your directors, consultants, matrons.

I’ve sat and seen, and 15 step challenged.

I’ve agreed to be the rep member of your environment committee, but you’ve never confirmed nor sent me invites.

I’ve offered numerous times to provide dementia friends sessions for staff and to help you become dementia friendly.

I’ve attended board meetings, read the papers, understood the complex issues you face, many not of your making, and made supportive public comments.

I’ve asked for five years why patient experience metrics have not improved for five years.

I’ve met your Chief Exec and directors from time to time and they’ve thanked me for my time and efforts.

You’ve all explained how you’re addressing poor care, badly performing wards, A&E pressures, your ever increasing deficits…

You’ve teamed up with Virginia Mason to become lean and mean and solution focused.

You’ve been baled out with millions and millions.

You’ve blamed the rest of the health economy.

Again and again and again.

Your non execs have shaken their heads and sighed and coughed and chuntered.

But you’ve all hidden away in your corridors.

You’re invisible. Staff don’t see you. Staff don’t talk to you. They can’t.

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You aren’t there.

There’s no one at home.

We patients, who are indeed experts at seeing what you do not, are just, well, chaff, in the way, blocking your view of your corporate papers and your metrics.

We tell you month after month after month what we see.

And month after month after month you ignore us.

Or you tell us you are working with that ward on an improvement plan.

Or, yes, this ward manager has always been a bit, well, difficult.

Why do you do this to us?

Is it because you are paid a lot while we do it free? Being paid a lot makes you more important?

Is it because we haven’t done twenty or thirty years work in our health service so we can’t know all that you know?

Is it because you see complexities, subtleties, barriers, difficulties, while we see simple wrongs, bad care against good care, a patient’s one and only chance to have good care.

You see 100,000 patient episodes as one block of money.

We see them as 100,000 opportunities for people to get good, personal care.

You see good care as 95% compliance metrics.

We see good care as every patient getting food they eat, skin assessed, dressings changed, mobilisation every day, a dignified private wash, and being addressed by their name.

Brother, you have let me down.

So let me down.

After six years of giving you my support, time, insights… I have spent four days in an unsafe, chaotic, understaffed, ward in your hospital.

I have seen forged skin assessments.

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I have seen drug charts on the wrong patient’s folder.

I have seen patient folders numbered differently from their bed numbers.

I have been given oxygen through a mask unattached to the supply.

I have had to ask for pain relief within hours of major surgery and then had to wait to receive just paracetamol infusion.

I have asked what my meal is and been told abruptly “whatever you ordered”.

I have seen a patient lying in agony on his own faeces, calling for help, bring told to wait. Again and again.

I have seen a patient with dementia who said he did not want to eat left unfed (and unturned) for 24 hours.

I have seen drug rounds interrupted, stopped, started, drug charts missing.

I have had my own drugs left in a plastic bag for three days on my bedside chair.

I have had to self administer my drugs from my plastic bag eight hours after a four hour operation.

I have emailed the director of nursing and deputy from my bed to tell them about all this and waited two days for someone to say…” thank you so much for telling us about this. The director will meet you in a few weeks when you feel better..”

Oh brother, you have let me down.
So let me down.

I am angry.

I am furious.

How did you allow your ward to become so awful?

What have you all been doing?

You set up this winter urology ward in the day treatment centre 17 weeks ago.

Has no one thought to get the bed numbers changed?

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Has no one observed the interactions between staff and patients?

Has no one audited the drug charts?

Hasn’t anyone cared enough to make sure patients there are safe?

Haven’t you visited it?

Have you forgotten that you are running an organisation to provide safe care for us?

That we pay your salaries?

That you have have a duty to seek out poor and unsafe care and stop it happening?

You have let me down.

You have let hundreds of patients down.

And you should be ashamed.

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Care and Support Planning in the community…a great paper

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Life isn’t a bed of roses, is it?

Are you in control of your life?

Are you in control of your health?

Are there things you want to do that you enjoy?

Or that you just want to achieve before you die?

What makes you want to get up in the morning?

What makes you smile and feel warm inside?

And do you live with ill health which makes these things difficult?

I do. I have several long term conditions that I shall live with and die with. Not necessarily of.

Though if I don’t look after myself I might die of them.

What does looking after myself mean?

Well, in my book it’s about staying active, engaged in my communities, meeting and talking with people, and doing things that give me pleasure. Like gardening, walking, feeling the wind and rain on my face.

And that might also be called maintaining my wellbeing.

What has this to do with the new report published by National Voices’ Wellbeing Our Way programme:

What is the role of Voluntary, community and social enterprise organisations in care and support planning?”

There’s now plenty of evidence that improved wellbeing leads to improved health outcomes. And that investing in community based activities and support for people with ill health (or not) is a way of improving wellbeing.

In fact, as the report demonstrates, many projects around the country are able to demonstrate significant Social Return on Investment.

The traditional model of healthcare has been one of health professionals “doing to” rather than “doing with” the patient to either cure them or to provide treatment. The patient often didn’t get much say in whether they wanted that treatment, or how they might improve their health in other ways.

Stop smoking. Drink less. Take more exercise. Eat more healthily.

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Yeh. Easy, eh?

Patients have been passive recipients of care for decades.

In recent years though things have begun to change. The mantra is now “No decision about me without me”. Rightly so, since active participation in one’s health care leads to better outcomes, however you measure these.

What, then, do voluntary and community organisations bring to shared decision making and care and support planning?

For a start, between them they know what resources are available in communities. After all, they run most of the social activities that go on. They also recruit and train the millions of volunteers who give many hours every month to run or support activities, groups and individuals.

VCSE organisations have strong values, putting people at the centre of their work. Volunteers have strong values and motivation. They can also organise community activities and groups in ways which statutory organisations cannot. They use social networks to gather people together to help each other, and that leads to improved wellbeing both for volunteers and for those benefitting from their work.

Voluntary and community organisations cannot run on values, enthusiasm and fumes alone and need financial support, but they are incredibly efficient in making that money go a long, long way.

So, CCGs and Councils all over the country, make sure you all read this report and act on it.

Invest in your local voluntary and community organisations to provide support for people to develop their care and support plans and activities. It’s great value and you really improve the health and wellbeing of the people you exist to serve.

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http://bit.ly/1XVrraM

What is NHS Citizen? I’ll tell you…

So here’s the thing.

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NHS Citizen is an empty tin can being kicked along a dusty road to nowhere

Without anyone watching or listening.

 

It has no visible effect on NHS England.

It has no visible effect on our CCGs who organise health services locally.

It’s an eruption of field voles. Holes everywhere and going round in circles.

I had my doubts about it at meetings in 2014 and 2015.

Now I am certain.

It’s going nowhere.

It’s a waste of money.

I’ve been to a workshop meeting in London to talk about what is good and what is bad an NHS Citizen. What is worth keeping and what should be ditched.

How it should be improved.

Trouble is, at every citizen event or meeting I’ve been to people just spout randomly about whatever they feel angry about that day.

They don’t listen to the facilitator or to what others say. They don’t give others the courtesy of opportunities to speak until forced. They interrupt, speak across. Have meetings within meetings, arguments with arguments…

And the masters who fund this grand project don’t do anything to address what we say.

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I went through a citizens jury and then the full assembly last year. I spent several days on presentations, research, tweaking, delivering, arguing…

“There is little support for people with dementia between diagnosis and crisis”

And what happened to the cause with arguably the highest popularity during the jury stage?

Nothing.

Simon Stevens et al said NHS England can’t tell CCGs what they should do.

(Ahem. I think they can, and do. Cancer and access targets. Dementia diagnosis rates and payments. Reconfiguration and sustainability plans. National CQUINs.)

He said it was up to us on the ground to influence and persuade our CCGs to change what they do.

And today I’ve been told that NHS citizen gather website is not looked at or used by the Board.

So my time and effort, and others’ too, have been wasted.

 

No one knows about NHS Citizen. No one cares about it.

So what next?

I suggest two useful options.

First, use the Citizen Gather website for people around the country to post discussions of best practice in their areas so we can share them around the country.

CCGs could use this to find great ideas that have been tried and tested elsewhere, to look for evidence, to exchange solutions.

Citizens could similarly post about their concerns (like dementia support) and get others around the country to help them.

Of course, there are existing social media type sites that are used for this, but it could work if sufficiently publicised.

It could also be used for local online consultations and networking in CCG areas, for commissioners to see what people are thinking and saying about healthcare.

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Second option…and I will not be popular…

Recruit carefully a group of people (citizens) who are statistically representative of the population (like the citizen jury in Stoke) and who have the influencing skills, behaviours and aptitude to be a scrutiny panel just below the Board of NHS England. Hold them to account. Bring things that are on the Citizen Gather website to the Board and challenge them to take action.

Those are my vision for how NHS Citizen can be turned into something positive and valuable.

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