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Clinical nursing specialists for dementia put the precise rôle of the third sector to the test

Ed Miliband, most people agree, is set to be the leader of the largest party at Westminster next year at least. This would give him overall charge of the legislature and the executive on 8 May 2015.

He has also pledged to produce 20,000 extra nurses, though talk is cheap. George Osborne has failed on virtually all ambitions that were set for the economic performance of the current Government. The Conservative-Liberal Democrat coalition therefore bequeath the next Government with a society with a terrible frail economy.

This UK economy is essentially a bargain basement one. It is easy to spot the major fault with ‘the record number of jobs’ meme, as the actual till receipt income is very low. And yet the Conservative want to pay for tax cuts – we’ve gone from an over bloated state to an under nourished one.

I had the enormous pleasure, with two other Dementia Friends Champions Chris Roberts and Jayne Goodrick, of giving a Dementia Friends information session at my law school yesterday. I can’t praise enough the amount of support we were given from the people who run Dementia Friends.


Forgive my photography. I am no David Bailey*. We actually had a good turnout, but I managed to capture the part of the audience which was very lean. Chris Roberts (@mason4233) lives well with a mixed type of dementia, thought to be a mixed Alzheimer’s disease and vascular dementia.


Somebody came up to me at the end of the audience and said, “It was absolutely brilliant as it was just incredible to see for my own eyes somebody living well with dementia.”

The “Dementia Friends” initiative has been a successful one. From the Alzheimer’s Society, and supported at a distance by Public Health England, it is modelled on the Japanese ‘caravan befriending’ movement. Its aim in policy terms was to break down the stigma, prejudice and discrimination which can happen against people living with dementia. These factors can contribute to the social isolation often experienced by people on receipt of a probable diagnosis.

“Dementia Friends” has been brilliant for myth busting, with actual facts about dementia too.

Recently, Kate Swaffer (@KateSwaffer), leading international advocate living well with dementia, and working with Alzheimer’s Australia, leading  for the Dementia Alliance International, met Dennis Gillings this week in a small group of people for dinner. Gillings is the newly appointed World Dementia Envoy.

For reasons which are completely inexplicable, there is no established substantial representation on that panel from the communities of people living with dementia or caregivers, although Hillary Doxford was  documented in the Communiqué of the last meeting just gone.

When Dennis met Kate recently, Kate quipped, typically characteristically in a beautiful tongue-in-cheek manner, she had not ben dribbling into her soup (Kate’s blogpost here).

But “Dementia Friends” is an interesting example of a private-public initiative with a £2.4 million funding base. Had this been left entirely to ‘market forces’, it is unlikely there would have been national outreach for this unique project.  Inevitably the topic in policy terms is whether the substantial cost of Dementia Friends is offset by the value of raising the profile of dementia and caregivers. Where it might fail on its outcomes, and time will tell, is how the pledges of turning communication into action are actually hard evidenced through the number of pledges (irrespective of whether it will hit its target of one million within an extended deadline of the end of 2015).

In my opinion, it has been.

Two days previously, I enjoyed being at the Methodist Central Hall for a day for the Dementia Action Alliance.

Us in DAA

And yet it is also true that social care is on its knees.

You don’t have be a great story teller to communicate a tale of the NHS on its knees.

This is somewhat cognitively dissonant with MPs wearing their Dementia Friends badges with pride, one could argue.

balls miliband DF

I agree with Jeremy (tweet here) in that the third sector should not need to apologise for fundraising.  Making a surplus for a charity is a raison d’être for a charity akin to the duty to maximise shareholder dividend for a business.

Jeremy Tweet

But larger charities share many operational and cultural characteristics with corporates conceivably, and therefore the principles of a good ‘corporate citizen’ could easily apply to large charities with substantial revenues.

Sube Banerjee, long time supporter of the Alzheimer’s Society, and, perhaps more significantly here, co-author of the previous 2009 English dementia strategy came to the Dementia Action Alliance table with some noteworthy criticisms of how the current strategy had been executed.

Firstly, Sube, now a Chair of dementia at the Brighton and Sussex Medical School, commented on the devaluing of the ‘cost’ of a diagnosis to £45, and commented specifically on the culture of a ‘high quantity low quality’ approach to diagnosis.

Indeed, the 2009 English dementia strategy, called ‘Living well with dementia’, refers to the need for high quality diagnosis.

And the English dementia policy as it was then, before it got taken over by the Prime Minister’s Dementia Challenge, due to expire next March 2015, also warned about the lack of post-diagnostic support.

People living with dementia, and their family members, have consistently remarked to me how they have been told by medical professions that their rôle is at the very start and very end of “the dementia journey”. They won’t be there for them in between.

We are all aware of recent findings that 9 out of 10 care homes failing to meet standards set by the regulator the Care Quality Commission, reported not just in the Daily Mail.

So there is an overwhelming sense that people with a possible diagnosis of dementia are being set up for a fall by an inadequate care system, which is disjointed, increasingly privatised, and undervalued.

One of the undesirable consequences of this bargain basement economy is the sheer undervaluing of paid carers on zero hour contracts, some not even getting any travel expenses or the national minimum wage.

This poses serious questions about us as a society. So does the lack of support we appear to be giving unpaid family caregivers, an army of which nearing a million are the backbone of the entire system.

But Jeremy’s tweet does also pose serious questions about what charities could or should fundraise for. I say this as I remember one of own interview questions to read medicine at Cambridge – which I did between 1993 and 2001 – “to what extent should charities take the place of a properly funded NHS?”

Well, this question has taken on a new twist. I do not see there to be a ‘competition’ as such between ‘dementia advisers’ of one charity and ‘specialist nurses’ from another third sector charity. I think they co-exist. ‘Dementia advisers’ are possibly more useful for the more independent parts of the support of “the dementia journey”. ‘Specialist nurses’ are pivotal at all parts, including the care part of ‘the dementia journey’.

It has struck me how not only cost effective clinical specialist nurses are, in providing proactive case management for people with dementia with personalised care plans, ‘nipping in the bud’ complications from medical conditions. I know internationally one of the campaigning for fundraising themes is the substantial co-morbidity of dementia. People living with dementia often have a plethora of other problems, such as in joints, heart or lung.

Sally Greengross has long made it been known that the post diagnostic support for dementia is not good enough. Sally Greengross is the current Chair of the All Party Parliamentary Group on dementia. Her predecessor, Jeremy Wright MP, currently the Government’s Attorney General, launched the highly successful policy here in England of an ambition to reduce the number of inappropriate prescriptions for antipsychotics predominantly in care homes.

Hospitals can be some of the worst places a person with dementia to end up in. Likewise, it shouldn’t be conceived that secondary hospital care is necessarily synonymous with someone who has ‘failed’ somehow. But, say, end of life nurses will be able to provide expert help, wherever the appropriate care setting is deemed to be for a person living with dementia (and his/her friends or family).

And it is therefore possible charities such as Dementia UK and others might be able to fill these gaps in service provision. For a start, clinical nursing specialists comprise an innovative way of delivering the dementia post-support service. And the NHS has a statutory duty to promote innovation.

stat duty 14XHowever, I should say that that statutory clause (14X) on CCGs is from the much loathed Health and Social Care Act (2012), about to be repealed by the next Labour government.

It is sometimes the case innovation can be incubated in places other than the NHS, and we’ve already seen a lot of goodwill and real-life financial support for Macmillan nurses. It would be impossible now to think of palliative care for nursing in cancer to be without Macmillan nurses – and the prime contractor model could be a way of providing sustainability in critical areas of services. This is ONLY provided that the quality and cost effectiveness components are managed correctly and for the benefit of the taxpayer. The next Labour government wishes to bring out a huge systemic innovation of integrating health and care into whole person care. This is long overdue, as, for example, it is impossible in places to discharge NHS patients to social care in s timely fashion. This is not cost effective; it is insulting particularly to patients including frail old citizens who do not wish to be in hospital anyway, and do not deserve the pejorative insulting label of “bed blocker”.

I am sure Alistair (@ABurns1907), or whoever ends up predominantly penning the new English dementia strategy, will wish to give careful consideration to how this post diagnostic support can be provided. Jeremy has a point, but up to a point.




*Joke by @JayneGoodrick.


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