We should be ashamed of lack of post diagnosis support

I met a group of carers of people living with dementia. Lovely bunch of people. Very positive and unsentimental, but very aware of their loss of the loved one they had known for many years.

Some of the cared for had died, some were in care homes, and one was at a day centre to allow the carer respite time. Probably very good social activity for the person with dementia as well.

Their stories were heartfelt and touching. They spoke highly of the memory service outreach staff who supported them whenever they could, however they could. Those in Telford had high praise for their Admiral Nurses. (Shropshire does not commission Admiral Nurses, though I have yet to get a satisfactory or clinical explanation from the CCG.)

I asked about the support they get. Their peer group meets every month, quarterly for lunch. They can talk to memory service staff if they need to, though not always the same day.

Do you get respite? Very little. British Red Cross and another charity provide some now and then for an hour or two, but little else.

“We just want a few hours here and there so we can relax, unwind, garden, shop, whatever, without worrying constantly.”

Does your cared for attend a day centre? Some do, perhaps a half day a week. But day centres are having funding cut so they are more expensive and less available.

Have you had any support from a dementia navigator or adviser?


Never heard of one.

But commissioners have told the ADASS survey recently that most providers have dementia advisers for every person with dementia who wants one.

Hmm. Never heard of that.

What have you found difficult and needed or wanted help with?

Bureaucracy and barriers. Especially with getting Continuing Health Care (CHC).

The council just say no all the time, and give you another form to fill in. They make it so difficult most people give up trying to get benefits or support.

“When my wife was assessed for CHC, there was only a social worker present. There’s meant to be a nurse as well, to provide clinical assessment. I objected but it did no good.”

Now, in Shropshire there are an estimated 5,000 people living with dementia, of whom around 60% have a diagnosis. A third of those with diagnoses live in care homes, ie around 1,000. (Figures updated from 2013 Shropshire Dementia Strategy.)

Which leaves 2,000 people with a diagnosis in the community with around 2,000 carers. (And 2,000 more who are undiagnosed and therefore unsupported.)

How many peer support groups are there in Shropshire for carers? I know of one. Perhaps there are three.

How many dementia cafes and diamond centre drop ins are there? Around six or seven I think.

How many carers attend these? Max 100 I suggest, perhaps 150.

How many carers get precious little support?


And the same goes for the people with the diagnosis.

1,850 carers and people with a diagnosis are unsupported.

Another 2,000 people are undiagnosed, many of whom will have carers looking at after them.

In total, shall we say 4,500 people with dementia or caring for people with dementia.


So where does that leave support post diagnosis?

Well, nowhere really.

We should be ashamed.

We are nowhere.

What has our dementia strategy achieved so far?

Pretty much zilch.

If I am wrong please tell me.

But we’re not very sexy, us old’uns.

Mental health in general, is not very sexy.

Hide us away, like the good old days.

Ignore us, cos we always manage, don’t we?

And if we’re unhappy, well, just pull your socks up and get out more. There’s plenty worse off in the world.

And we can’t afford to spend any more.

Dementia is not cancer

People with an early, timely diagnosis of dementia have time to make the best of their lives. They can plan finances, power of attorney, a care and living plan…


Then what?

There is still precious little support provided across the country post diagnosis, until crisis.

Many providers and councils say they provide care co-ordinators for all people with a diagnosis of dementia. But we know they usually don’t. (Initial findings of a survey by ADASS in the West Midlands). There are a few proud exemplars, far between.

There are excellent peer groups scattered across most areas but few people with dementia get to them.

People with dementia, and remember it can happen young, are generally left to their own devices. They lose jobs. They meditate on their forthcoming decline. They become depressed. They lose social contact and community interaction. They may descend into living with misery.


Yes, we talk about living well with dementia. But it’s very hard to feel good about life when sitting around thinking about the future and meeting few, if any, people to talk to.

To live well with dementia you need support, information, contact, when, where and how you want it. You need to be active, engaged, doing things, talking to people; living well saves the country money.

And how many carers get respite from their caring role? Hardly any.

If I had cancer I’d have support, counselling, peer groups, Macmillan nurses every day I needed them.

But dementia is not cancer.


(This is an article I have written for the conference magazine of the International Demwntia Conference in Telford in November where I will be speaking about whether care of people with dementia has improved in the last ten years.)

Where on earth is right?


Well, I seem to have lost it.

When I want to say right I say left.
When I want to say left I say right.

I even write it wrong while thinking it right.

So right is wrong and left is right.

Just started happening a couple of weeks ago.

I’m still fine on knowing which way to turn, walk, drive…

I just can’t give instructions reliably.

So don’t ask me.

The other thing that’s started – or stopped – is

I can’t answer direct questions.

Don’t ask me where I’ve just been.

Don’t ask what I think about a choice.

I stare back, wonder, peer through the fog, get lost.

I’m fine on my own agenda.

Talk about something and I’ll join in with my experiences, my choices, my views.

Just don’t ask me straight. Direct.

If you want an answer in a hurry, that is.

And so it goes on, eating away a bit more.


Bloody dementia.

Live the change you want to see in the NHS

I’m at Expo15. Member of the People’s Panel. Blogging/rocking all over the place.

What’s it about?

Innovation and change in healthcare. Doing things differently.

There’s lots of talk of patient co-production and engagement.

Great pilots and projects around the country.

Vanguards bringing services, providers, sectors together to deliver great care seamlessly.

Moving towards new models of care for a sustainable future NHS.

Then last night a whole lot of us went out to a “eat all you can” “restaurant”.

Not sure it has earned that description.

What were we eating?

As much salt packed, grease dripping, fat laden, mass produced mess as we could put in our stomachs.

Which swelled.

And which will cost the NHS a penny or two before long.

You see, we’ve got this huge mismatch.

We speak of good things but our deeds do not match our words.

And it’s us doing it, we people who work to improve the future of the NHS, people who work in The NHS, people who the NHS looks after.

Time to get real.

To match great words with great deeds.

“Live the change you want to see”

image image