Are you ready for this? The dark side of English dementia policy.

All that glisters is not gold.

The progress in the English dementia policy jars inconveniently with the funding crisis and poor performance of some (not all) parts of the National Health Service.

The main issue is that the whole system is not working. For a start, it is not always possible to get people with dementia into hospital in a timely way as it is impossible to discharge ‘fit for discharge’ patients into the community due to the destruction of social care.

Earlier this year, we were also greeted by this cheerful headline:

public health

And we know that social care has been on its knees for some time.

Richard Humphries, hugely respected at the King’s Fund, gave this unequivocal appraisal in December 2015 concerning the smoke and mirrors of the social care settlement, clouded by talk of the ‘precept':

“Instead of a fundamental root and branch review of how entitlements, as well as funding, are aligned across the NHS and social care, as proposed by the Barker commission, the government has chosen an opaque and messy hotchpotch of measures, which fails to address the short term pressures on social care; it does nothing to place funding on a more sustainable footing in the longer term.”

Dementia policy is currently running in two parallel universes. One universe is the poor state public health and social care find themselves in. The other is the multi-million pound ‘transformation fund’ for drugs for dementia, which may even be too expensive for the NHS to offer in a comprehensive way.

So what’s new in dementia that the Prime Minister can possibly get his teeth into?

The think tank Reform wrote some time ago their perspective about the situation:


Nick Seddon used to be the Deputy Director of ‘Reform’.

He wrote in the Telegraph back in 2010, just as the intense political debate over the much criticised Health and Social Care Bill erupted, the following:

Seddon 1
And the solution, unsurprisingly, is framed in terms of a hybrid insurance model.

Seddon 2

Lord Warner was the only Labour Peer to vote in favour of the Health and Social Care Act (2012).

And, of course, there was the ideological legacy from the New Labour era, exacerbated a million times worse in the Health and Social Care Act (2012) due to the introduction of default competitive tendering under s.75, of competition as a tool to improve quality. There is very limited evidence to support this, whereas there is quite substantial evidence to show that competition in health markets worsens health equity, and is very costly.

In the Guardian in 2014, a description was given of his new Jerusalem on the NHS based on co-payments and an emphasis on prevention.


So fast forward to the current framework of the NHS underlying the ‘vanguards’ and the ‘new models of care’.

This all cosily fits in the structure of the ‘three gaps’ of the ‘Five Year Forward View’ from Simon Stevens, whose new Labour background is well known. In 1997 he was appointed policy adviser to two Secretaries of State for Health (Frank Dobson and Alan Milburn) and from 2001 to 2004 was health policy adviser to Tony Blair. He was closely associated with the development of the NHS Plan 2000.

Closing the ‘prevention gap’ is still “big business”. There has been an increasingly tendency to pedal the ‘we’re all patients now’ meme with the Big Charity creations of ‘pre-dementia’ and ‘pre-diabetes’, for example. Reasonable clinicians are of course running a mile from this. And – guess what – prevention of dementia means big money.

However, res ipsa loquitur.

A lot of dementia is NOT preventable – hence the workstream of ‘non modifiable risk factors for dementia’.

PowerPoint Presentation

There is one huge reason why the mechanism of us pooling risk together through general taxation is the best way to look towards the future of dementia care. The alternative, through private insurance, would be an unmitigated catastrophe. But this is an ideological war against the National Health Service, and various devices such as the insidious introduction of the personalised budget through the Care Act (2014) have seen this subtle rationing of resources to the individual level, under the deceptive marketing of the word ‘choice’.

It is no accident that Simon Stevens is a huge fan of genomic medicine. With the possibility of your entire genome being scanned, for risk factors for dementia, you could be aware of your risk for dementia and be inclined then to take out private insurance. But the research into genetics in dementia is advancing quite rightly, as it is hoped that efficacious interventions for a suitable subset of genetic +ve persons might exist in the future.

But Alison Cameron has described very elegantly, recently in “Healthcare Manager” magazine, how the patient movement views itself as more than data points as a bit part for others’ agendas.

This creation of new private markets is the ultimate nirvana of those propose privatisation.

But it is a hugely slippery slope.

You could find out you’re at high risk of dementia and decide you’ve got nothing to lose, as the insurance company will pay out, and blow your lifestyle on all the unhealthy risk factors. Or if you’re at low risk you could decide that paying into the NHS is not for you, and opt out for a relatively cheaper private insurance system.

In 2008, in the US the Genetic Information Nondiscrimination Act (“GINA”) was passed into US law, prohibiting discrimination in the workplace and by health insurance issuers. One wonders whether a genetic phenotype should be considered one day for an amendment in the Equality Act for overseeing such claims under discrimination law.

GINA prohibits issuers of health insurance from discrimination on the basis of the genetic information of enrollees. Specifically, health insurance issuers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.

What has genetic discrimination in the US looked like?

Pretty ugly, as for example this:

“Jacob, a boy who carries a gene for a disorder called Long QT Syndrome (LQTS), was denied coverage under his father’s health insurance policy because of his pre-existing condition. LQTS is a rare and little-known genetic disorder that sometimes triggers sudden cardiac death. Those who carry the gene may be healthy until they suffer an attack without warning, but carriers can control their risk of cardiac arrest with preventive beta-blocker therapy. Jacob’s father wanted Jacob to be insured, but even after their state enacted a law prohibiting genetic discrimination, Jacob’s insurance company still refused to cover him.”

Wendy Mitchell, living with dementia, was asked at a recent dementia ’round table’ at the Department of Health:

‘How are things changing on the ground?’

The answer is: probably not as fast as they’re going in Whitehall.

The new question is: “Are you ready for this?”

Conducting an emotional debate about a diagnosis of dementia in primary care will fail

It’s now clear that much dementia policy in England quite simply has appeared from nowhere.

It has the veil of consultation, but we all know there has been little dialogue about the case-finding approach for people with dementia. There has been virtually no academic scrutiny of the dementia prevalence calculator.

I do not believe that the solution of a workable policy will be won through the pages of the British Medical Journal, especially when it is alleged that certain authors either have little clinical experience in dementia (and graduated in a humanities subject) or others are not disclosing their potential conflicts of interest. In as much a debate is waged in the academic journals, it nearly always becomes a ping-pong of article, reply and counter-reply. It possibly serves no real function other than to massage the egos of the people involved in the debate.

Public dissatisfaction with services is for a number of reasons. There’s a perception that complaints aren’t acted upon. The 2009 national dementia strategy for England “Living well with dementia” is very clear about the need for the diagnosis of dementia to be in the right hands.

See page 37.

“The message from those responding to the consultation exercise was that these are reasonable concerns, and that the primary care role should be that of identifying those with worrisome symptoms that might mean that their patient has dementia, excluding any other explanatory disorder, and referring on to a specialist service for that individual to receive a definitive diagnosis, not only of dementia, but also of the sub-type of dementia. This would require that such services are available for the GP to refer to and, in the large majority of the country, this is not currently the case. The focus of old age psychiatric services is on the severe and complex end of the spectrum, leaving early diagnosis and intervention largely unaddressed. Equally, geriatric and neurology services are saturated at present with their current work with those referred to them with dementia and complex physical co-morbidity and younger and atypical presentations respectively. This strategy is not intended in any way to minimise or undermine the role of primary care in the diagnosis and management of people with dementia. It is instead an acknowledgement of complexities that have become apparent in the last 10 years, and is designed to support primary care by generating services that they can use in a clear explicit care pathway. The primary care role following diagnosis can therefore be informed by the clinically important information as to whether or not that person has dementia, and of what sub-type, and treatment modified to take account of that. “

We need to know how easy it is for GPs to refer concerns about dementia onto specialist medical services, however defined.

It’s very difficult to ascertain what harm takes place through an incorrect diagnosis of dementia – though this is undoubtedly a concern, it is unlikely this would command a headline in the Telegraph or an editorial in the Lancet. It is simply not the case carers feel supported by the greater awareness of dementia. The G8 Dementia Summit barely mentioned carers, as it was intended to address the concerns of Big Pharma in finding a new market for new dementia drugs primarily.

At the end of the day, it is a race to the bottom to be satisfied with any degree of dementia awareness. We need to think about what type of awareness we are achieving? Are people actually better off in their understanding of what the different types of dementia are? Are people clear that the anti-dementia drugs known as cholinesterase inhibitors have a limited time window for some modest therapeutic impact on symptoms, with having no consistent proved impact on slowing the progression of disease?

Another ploy used is to harness the confusion of what a ‘memory clinic’ might be, and what support is available. It is now known a lot can be done to promote living well with dementia, but the medical profession is perhaps not best placed to do this, relying on some medications which simply don’t work well. It might be better to use the term ‘specialist clinical dementia services’, because then at least we get round the heterogeneity of what a ‘memory clinic’ is. A memory clinic might be one psychogeriatrician, or it might be a full blown multi-disciplinary clinic, hosted by a neurologist, general medical physician, social care worker, clinical psychologist, or psychiatrist to name but a few.

There has to be some sort of ‘third way’ between a 10 minute ‘chat about memory problems’ and the full tertiary referral unit workup of 2 x history, 2 x examination, CT, MRI, cerebrospinal fluid/lumbar puncture, psychometry, EEG and (very rarely) a brain biopsy.

There should be an easily identifiable mechanism for GPs to refer to those people best placed to make a working diagnosis of dementia, otherwise talk of diagnosis and ongoing support is simply going to promote anxiety if no such support is available. Just because diagnosis of dementia might be at floor level is not a carte blanche to produce lots of incorrect diagnoses of dementia. To say it should be a good way to encourage education is to combine an Aunt Sally approach with motherhood and apple pie. And we have to be clear why a diagnosis of a subtype of dementia does matter at all, and not in any way luxurious. This should be a basic demand of the English dementia policy. Some people, misdiagnosed as having Alzheimer’s disease, in fact have diffuse Lewy body disease, and can behave particularly badly in response to antipsychotics.

The notion that this policy merits incentives should be aggressively questioned. Any implications that GPs are complacent end up sounding like a patronising slur on a professional arm of the medical profession, whoever makes them. There is no doubt that primary care in England is under strain. Producing lots of cack-handed diagnoses of dementia, with insufficient resources in specialised medical dementia clinics, is not the correct solution. Rather than adopting a ‘there is no alternative’ approach, opinion and clinical leaders have a long way to build up trust over a failing dementia policy in England.

But sadly I do expect this potentially flawed policy to continue.

But to amuse myself, I will put in a freedom of information request to find out how much NHS England has budgeted for specialist clinical dementia services, in response to the anticipated increase in ‘potential’ dementia diagnoses being made in primary care.