Author: Shibley Rahman

My new profile (Dr Shibley Rahman) for the England Centre for Practice Development

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I am very honoured to become a Fellow with the England Centre for Practice Development this week. The work of this centre is very much up synchronous with mine.

Fellow Dr Shibley Rahman

My profile:

Dr Shibley Rahman

Dr Shibley Rahman became a Queen’s Scholar in 1987, and he graduated from the University of Cambridge in medicine in 2001, where he also received a Foundation Scholarship. A major finding from his Ph.D. research conducted there under Prof John Hodges was the identification of a novel, innovative, cognitive neurological technique for diagnosing at an early stage the behavioural variant of frontotemporal dementia. This influential finding has been replicated extensively in the subsequent decade, such that it is even cited in the current Oxford Textbook of Medicine. Subsequent post-doctoral research was successfully published by him from the Institute of Neurology at Queen Square, in the behavioural and cognitive neurology of idiopathic Parkinson’s disease in the laboratory of Prof Marjan Jahanshahi; he had also done his junior neurology training under Prof Martin Rossor at the National Hospital for Neurology and Neurosurgery, Queen Square. He is a current member of the Royal College of Physicians in London, having completed his Membership in 2005. Notwithstanding a coma due to meningitis in 2007, Rahman subsequently went onto complete, newly physically disabled, his Bachelor and Master of Law, obtaining a commendation in international corporate law. He subsequently completed his MBA at BPP Business School, where he excelled in economics and markets as well as innovation management.

Originally, Dr Rahman was a supervisor at Cambridge in finals for experimental psychology and neuroscience, but latterly he has grown to be a popular (and invited) speaker at numerous public events both nationally and internationally, including at the invitation of the King’s Fund, Alzheimer’s Europe and Alzheimer’s Disease International. He has become influential in English dementia policy, being a keen proponent of rights-based advocacy for dementia, given his substantial medical and legal training. Dr Rahman’s contributions have been particularly well respected by people living with dementia, as well as by global groups in the third sector and by academics and practitioners alike.

A major drive behind Dr Rahman’s work is doing participatory research collaboratively and inclusively. He is passionate about ensuring the public are both aware and knowledgeable what current trends in dementia research are, and how they impact on policy developments. For example, his first book entitled ‘Living well with dementia: the importance of the person and the environment” was generally accepted to be a thought-provoking, original contribution to the field which won best book award for health and social care for the BMJ Awards in 2015. He has also been instrumental in helping to establish an innovative MSc programme in dementia care and leadetship at BPP Health School, aimed at busy professionals who wish to advance their practitioner skills in dementia.

Selected papers

Rahman, S, Dening, K. (2016, in press) Clinical specialist nurses are still desperately needed in English dementia policy, Nursing Times.

Rahman, S., Griffin, H.J., Quinn, N.P., Jahanshahi, M. (2011), “On the nature of fear of falling in Parkinson’s disease”, Behav Neurol, 2011;24(3):219-28.

Rahman, S., Sahakian, B.J., Nestor, P.J., Hodges, J.R., Robbins, T.W. (2005) “Methylphenidate (‘Ritalin’) can Ameliorate Abnormal Risk-Taking Behavior in the Frontal Variant of Frontotemporal Dementia”, Nature (Neuropsychopharmacology), 31(3): 651-8.

Rahman, S., Sahakian, B.J., Hodges, J.R., Rogers, R.D., Robbins, T.W. (1999) Specific cognitive deficits in early frontal variant frontotemporal dementia, Brain, 122 (Pt 8):1469-93

Selected books

Rahman, S. (2016) [foreword by Prof Sube Banerjee, Lisa Rodrigues and Lucy Frost] Enhancing health and wellbeing in dementia: implementing person-centred integrated care, London: Jessica Kingsley Publishers (in preparation).

Rahman, S. (2015) [foreword by Kate Swaffer, Chris Roberts and Beth Britton] Living better with dementia: good practice and innovation for the future, London: Jessica Kingsley Publishers.

Rahman, S. (2014) [foreword by Prof John Hodges, Prof Facundo Manes, Sally Marciano] Living well with dementia, Oxford: Radcliffe Health.

**Winner of the Best Book for health and social care in BMA Book Awards 2015 **

A response to a radio interview

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radio

 

Original soundtrack here

 

Mixed feelings about this.

Some blatant unintentional mistruths and misdirections.

I didn’t like the primacy of the diagnosis and the ‘doctor knows best’.

In a way what you call dementia is irrelevant in that your focus should be on enablement for problems people have – irrespective of name. On the other hand, knowing the type of dementia is worth knowing from the perspective of anticipating symptoms (e.g. in vision or language) – and in the specific case of lewy body dementia drugs to avoid.

Also memory problems are NOT ESSENTIAL to make a diagnosis of dementia. I assume he’s getting confused with the NINCDS-ADRDA criteria for Alzheimer’s disease. In a sense, he represents what academic physicians in dementia dislike – conflation of all dementia as Alzheimer’s disease. For example, posterior cortical atrophy can be purely vision, behavioural variant frontotemporal dementia can be purely behaviour and personality, logopenic PPA can be purely language, semantic dementia can be purely language.

The idea of diagnosing pre-dementia 30 years before onset of symptoms is hard sell by research sponsored by Big Pharma. A ‘positive’ Pittsburgh compound result he talks about is not a guarantee you’re developing dementia – and I suspect his is extracted from cerebrospinal fluid involving a painful spinal tap with a big needle in your back.

Talking of which – why NOTHING on living beyond a diagnosis of dementia? The tunnel vision of some in the medical profession is truly astounding. There could be have been a discussion of enablement for example or rights of people with dementia.

 

And none of the wonder drugs have got approval here or anywhere else, further to the usual suspects e.g. cholinesterase inhibitors and memantine, which have limited efficacy.

As for the idea of seeing patients on their own, for cognitive testing, possibly, but for neurological history a definite no no – an informant history is essential and even more so for the behavioural variant of frontotemporal dementia where there may be no insight initially.

The neuroscientific inaccuracy of the ‘bookcase analogy’ in the Dementia Friends campaign

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bookcase

I am a ‘Dementia Friends Champion’.

I love the campaign as it goes some way into providing basic information about dementia for the general public.

I strongly approve of this, given the stigma and prejudice surrounding dementia from some in the English population

I do not wish in any way to undermine the brilliant ‘Dementia Friends’ campaign from the Alzheimer’s Society and Public Health England, described here.

But please do allow me to say a few words.

 

I know of the history of the bookcase analogy as used in the ‘Dementia Friends’ campaign.

A description of the crux of this analogy is given by Gemma Jones (2005).

A description of this analogy is given here. The actual drafting of the analogy for Dementia Friends is slightly different albeit precise. I do not a have to reproduce it here.

 

Problem 1: This bookcase does not hold memory for skills.
Please note that the script of the bookcase analogy does not refer to skills.

That drafting of the Dementia Friends analogy is CORRECT.

Park for a moment in the link above – the description says ‘memory or skill’.

This part is very untrue.

Skill learning is thought to take part in the brainstem of the brain – and most affected in parts of the brain called the sub cortex not cortex. Therefore skills learning is most likely to be affected in the dementia from Huntington’s disease (compare in contrast Alzheimer’s disease).

See reference here.

Skills learning is what we refer to when, say, riding a bike – it’s not memory for facts or events. It’s thought to be quite old in evolutionary terms.

 

Problems with the actual Dementia Friends analogy

My ‘beef’ with the analogy as given in the current Dementia Friends below I summarised in a Facebook post.

The post is here:

bookcase

To start off, you have to understand the difference between the organisation of episodic and semantic memory in the brain.

Problem 2 – The issue with the description “memory or facts”

I could immerse you in lots of complicated neuropsychology, but this handy definition I got off Google is accurate and will suffice for the purposes of the blogpost.

This itself is controversial – but say personal facts here include events relating to my past. But you see the point you can’t just conflate this all as “memories and facts” as per the wording of the analogy in ‘Dementia Friends’.

Google

This matters as the part of the brain thought to be implicated in loss of semantic information is in a totally different place to begin with with that implicated in the loss of episodic information.

Semantic memory is really important for our knowledge about categories of things, aka facts.

See this description:

“In contrast, the term semantic memory applies to our ‘knowledge of the world’, including the meaning of vocabulary, concepts and facts: information which is retrieved without recalling when and where it was learnt (Patterson and Hodges, 2000). Tulving (1972, 1983) proposed that these two types of memory were psychologically and neurologically distinct and that amnesia was the result of damage to the episodic memory system. Moreover, Scoville and Milner’s data suggested a critical role of the medial temporal lobe, in particular the hippocampus, in this type of memory (Scoville and Milner, 1957).”

Problem 3 – the issue to do with loss of memory for facts and where this takes place

The bookcase analogy as drafted in Dementia Friends talks about the hippocampus being where “memories or facts” is pretty wrong – episodic memory fine though.

Semantic dementia is thought to start off around the anterior inferior temporal lobe, whereas episodic dementias like Alzheimer’s disease (initially) start off around the hippocampus.

atrophy

And as I say earlier in this blogpost there are different ‘gradients’ of memory loss according to different types of dementia. The bookcase analogy refers to ‘dementia’, but as we know there are at least a hundred different causes of dementia – not just Alzheimer’s disease.

lobar atrophy

It’s OK-ish to call it the central part of episodic memory loss “the  hippocampus” – though it’s really the general area of the hippocampus (in the medial temporal lobe) – as shown in the classic paper here.

 

The wider use of analogies in teaching

I don’t have any problem with Gemma Jones’ analogy.

You can read it in her excellent book ‘Care-giving in dementia’ here.

My only problem is that “Dementia Friends” is meant to be a social movement – and not where you literally have clones of volunteers learning a script albeit to fulfil the purpose of an information session.

There is a philosophy that Dementia Friends is delivery of a ‘product’ – conveniently commodified in a standard way to raise ‘awareness’ and to reduce stigma and awareness.

I think the original analogy is useful.

If it is so important for the wording to be homogenised, so that every information session is delivering the ‘same product’ albeit neuroscientifically somewhat wrong, why not just allow playing an official DVD of it?

But there comes a point where versions of analogies can be actively misleading, and does not actually portray accurately what happens in the dementias.

For some not others the truth will matter (particularly if ‘you do research’ another government aim).

 

Community based rehabilitation provides the vision in dementia care where weak words do not

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The term “challenging behaviours” was a very unfortunate import from the field of intellectual disabilities to dementia, necessitating the query “for whom behaviours are ‘challenging’?” Many people with dementia find behaviours of the medical profession ‘challenging’, being polite.

But a ‘good import’, arguably, would be the notion of “Portage”.

The name Portage comes from the town of Wisconsin, USA where the a home teaching scheme was developed in the 1970’s.

Portage is a home visiting educational service for pre-school children with additional needs. These may be learning difficulties, developmental delay or physical difficulties.

The “Portage Home Visitor” works with parents in their home because young children initially learn best in the security of their own environment, with the people who know them. In this way the best teaching programmes can be developed for every child.

Interesting ‘success stories’ exist elsewhere in the world too.

Founded in the Netherlands in 2006/07, Buurtzorg is a unique district nursing system which has garnered international acclaim for being entirely nurse-led and cost effective.

Prior to Buurtzorg, home care services in the Netherlands were fragmented with patients being cared for by multiple practitioners and providers.

Ongoing financial pressures within the health sector have led to home care providers cutting costs by employing a low-paid and poorly skilled workforce who were unable to properly care for patients with co-morbidities, leading to a decline in patient health and satisfaction. This is a problem which England shares too.

Indeed, a recent report last week from the International Longevity Centre discussed again the significance of co-morbidities in dementia Buurtzorg’s solution has to give its community district nurses far greater control over patient care – a factor which it attributes as key for its rapid growth.

There is huge interest as to whether ‘the Buurtzog model’ can be adapted for the English system.

Until recently, neither persons with dementia nor national dementia societies had used their right of access to UN Convention on Rights for People with Disabilities to which they are legally entitled defined by the scope of Article 1.

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Prof Peter Mittler CBE, Advisor for Human Rights for Dementia Alliance International, writes:

“At the recent WHO Ministerial Conference on Dementia, Kate Swaffer [Chair of Dementia Alliance International] set the ball rolling at the opening session by including ‘Access to CRPD’ as one of DAI’s demands.”

In addition, a robust, human-rights based resolution submitted by Alzheimers Disease International on behalf of 38 national Alzheimers Associations was reflected in the first of the General Principles of the Call for Action by WHO Director Dr Margaret Wang.

It was remarked that an aspiration should be that “policies, plans, programmes, interventions and actions are sensitive to the needs, expectations and human rights of people living with dementia and their caregivers“.

The concept of ‘post-diagnostic support’ (soothing, but in reality weak words for England’s policy in dementia) needs to be re-configured as a rehabilitation pathway.

Essential to the re-framing of the whole discussion is getting rid of the idea that ‘post diagnostic support’ is a haphazard AFTER THOUGHT – and that the medical model is KING through the strategic placement of ‘diagnosis’. Sure, without the diagnosis, nothing further can happen, but the issue is that even with the diagnosis some people are experiencing next to nothing in care in England, and even if they experience some care it is fragmented and disjointed.

There is no better introduction into how the sequelae of the dementia diagnosis can be so positively destructive than Kate Swaffer’s own description of ‘prescribed disengagement™’ in a prominent journal here.

This pathway begins possibly even at the time of contemplation of the diagnosis with extensive support to after when the diagnosis has been given. At all times, the recipients of that diagnosis (including immediate closest) should be opportunities to ask questions and discuss ways in which care and/or support can be given.

Enablement should be the goal now.

Other jurisdictions, for example Queensland in Australia, have been outstanding in leading – see this report, for example, here.

Recent, rather limp words recently even seemed to miss out ‘caring well’ altogether – making English policy on this close a bit strange to put it mildly.

A ‘pathway’ is a somewhat cranky technocratic word, and could be considered entirely inappropriate in the context of an English government intent on cutting state provision of a ‘safety net’. But at best it might provide decision points which might be legitimately and reasonably expected at points in a personal integrated care and support plan following diagnosis.

The lack of national adoption of pathways, entirely due to entirely political reasons, and despite a plethora of evidence to prove pathways can promote health and wellbeing for patients with dementia and carers, has been noteworthy here in England, tragically.

Notwithstanding, a rehabilitation pathway would provide access to a wide range of specialists. These might include, for example, the following personnel, no one part of the ‘workforce’ being “more important” than others, promoting independence as part of an inclusive, accessible community for all.

People with dementia and those closest to them themselves have an important rôle to ply in co-designing pathways in genuine co-production, if they are working on an equal and reciprocal basis.

Specialist clinical nurses who can act from the point of diagnosis providing continuity of care are important are sufficient in themselves. They are especially helpful in applying palliative care principles. For too long, it has been dismissed that dementia is a terminal condition, thus denying many people with dementia equitable access to palliative approaches.  Furthermore, it has been insufficiently addressed that people with dementia have a right to the highest standards of health from the NHS, regardless of setting.

These trained clinical nursing specialists are also extremely well placed to sort out issues arising from co-morbidities in health and illness, helping to head off avoidable acute admissions to hospital, or premature inappropriate transfer to residential care. Admiral nurses are also pivotal in helping coping strategies, essential in averting ‘crises’ in dementia care.

Other specialists might include:

  • Occupational therapists are pivotal, I feel; this rôle could include wider implications of he diagnosis and a discussion possible adaptations to the home and domestic appliances, and various forms of technology and innovations. A particular challenge, for example, might be to negotiate higher order problems in processing of the senses, including vision, as per posterior cortical atrophy.
  • Physiotherapists to maintain mobility and promote physical exercise.
  • Speech and language therapists to promote language and communication, especially important in Alzheimer’s disease and temporal forms of frontotemporal dementia, as well as to ensure safe swallowing following particular vascular events.
  • Clinical neuropsychologists to advise on adjustment to diagnosis, improving and maintaining cognitive functioning, promoting thought diversity and an ‘assets based approach’ where people’s skills can be best utilised.
  • Dieticians: a healthy diet is relevant in the progression of dementia, and especially so arguably for vascular dementia and Alzheimer’s disease. Also, latterly, particular attention has been given to optimising eating environments as part of the ‘healthy eating’ ethos.
  • Social workers are much utilised in my opinion, and I should like to see a much wider rôle than in safeguarding or crises, though I think capacity building in the workforce of social workers with a specialist interest in mental health issues might be helpful. I think social work practitioners are vital in the promotion of wellbeing, in enabling and protecting people with dementia, and provide access to community resources perhaps including personal budgets for some,
  • Pharmacists. Many medications can worsen cognitive symptoms potentially and act as risk to physical health indeed, and inappropriate polypharmacy needs to be reviewed by specialists in pharmacy.

Certainly medical professionals in primary and secondary care are vital where another plank of integration is needed, to ensure people with dementia and their closest genuinely do get the right care in the right time at the right place. I have no doubt primary care, with their wide experience of medicine, and upholding a proactive stance too, would be vital in community based rehabilitation, including general practitioners. But the current service issues in resources for, recruitment to, excessive regulation of, and access to general practitioners in England cannot be ignored.

The UN 2016-2030 Sustainable Development Goals were launched with a commitment to “Leave No One Behind”, a similar theme having been ‘no decision about us without us’. I have a concern that the poorly named “dementia friendly communities”, being aimed at being politically inoffensive by the chief cheerleaders in England, and being so cost neutral, does not do enough to resolve social inequalities in reality.

We know this is a danger, say, for housing. But worldwide extrapolation of inequity would be disaster, particularly when we consider the number of people thought to be living with dementia in low and middle income countries around the world.

All too easily ‘dementia friendly communities’ can become a strapline as a sticking plaster for cuts elsewhere in the Big Society, to secure a quickie competitive advantage in marketing – this is indeed addressed in this briefing from March 2015 here:

“There have been concerns that the target created incentives for governments to focus on‘low hanging fruit’ rather than those most in need.”

As a consequence of sustained advocacy, persons with disabilities are now clearly included in the 17 SDGs and 169 implementation indicators. Although the needs of older persons are recognised, persons with dementia are in grave risk of being overlooked.

It is likely that, if Big Pharma are successful in producing orphan drugs capable of being regulated and distributed, there will be an inequity regarding domestic recommendations about making these drugs available. The ‘economics of rescue’ doctrine means that there should be no stone unturned in providing medications in palliative care; but NICE will have other views on the greatest benefit for the largest number of people in their econometric ullitarian cost-benefit analysis.

It is indeed likely that persons with dementia in Low and Middle Income Countries should be able to benefit from the long established WHO Community-Based Rehabilitation (CBR) Programme described here.

“Community-based rehabilitation (CBR) was initiated by WHO following the Declaration of Alma-Ata in 1978 in an effort to enhance the quality of life for people with disabilities and their families; meet their basic needs; and ensure their inclusion and participation. While initially a strategy to increase access to rehabilitation services in resource-constrained settings, CBR is now a multisectoral approach working to improve the equalization of opportunities and social inclusion of people with disabilities while combating the perpetual cycle of poverty and disability. CBR is implemented through the combined efforts of people with disabilities, their families and communities, and relevant government and non-government health, education, vocational, social and other services.”

As a clear example as what could be achieved by engaging trained professionals too into English dementia policy, the Royal College of Physicians of London have been leaders too.

See this interesting case study:

“This Future Hospital Programme case study describes how the Torbay and South Devon NHS Foundation Trust is fulfilling their aim of achieving stroke rehabilitation 7 days a week in both the Stroke Rehabilitation Unit and surrounding areas.”

Stroke care, like cancer care, is in a different place to dementia.

And we know why. The only hope in English policy appears to be some chosen ones selectively adding fertiliser to a few flowers blooming when the entire garden had actually been devoid of being watered for several years. And this needs fixing the gardener.

Unfortunately, people who are less skilled – but who are ‘advising’ or ‘supporting’ – might possibly insufficient alone to service needs of people living with dementia and carers, even if they meet the needs of certain charities, but they do serve a useful function in service provision. Quality is essential for enablement.

 

 

–

Please come to see my talk in the policy stream of the Alzheimer’s Disease International conference this week in Budapest.

Why I decided to launch my own society on dementia

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blades-of-grass-png

It was with a rather heavy heart that I decided to launch my own society on dementia earlier this week.

A few years ago, I applied to be an information officer in a well known dementia society. I wasn’t shortlisted, and at the time it felt to be a personal setback. Nonetheless, I was determined to do something for education about dementia. Last summer, I also applied in good faith for a non-paid position in another dementia charity, which was equally a waste of my time.

I have been a junior physician at the National Hospital for Neurology and Neurosurgery at Queen Square coming close to nearly 15 years ago. I remember as part of my training learning about patients of mine, such as a young man with a progressive decline in memory and change in personality. His diagnosis was HIV dementia.

A few years previously, I completed my own doctoral thesis in Cambridge in quite a common type of dementia for people aged 65, called the behavioural variant of frontotemporal dementia . I was lucky in that my big result from this thesis has now been replicated by many research groups around the world and is even occasionally cited in specialist textbooks in dementia.

In my personal life, a lot has changed for me. I became physically disabled in an acute event nine years ago, and I nearly lost my life. The whole experience, and numerous other events and experiences, has made me quite resilient now. Undeterred, I went on to obtain postgraduate degrees in management and in law.

Some time ago though, I feel I had decided to walk away from the ‘greasy pole’ anyway. I am regulated by both the medical and legal professions – but personal circumstances mean that my goals are very different now to fifteen years ago.

Like many people, I would like to make a difference, but, like some people, I have very limited scope for doing so. Financially challenged, I have saved up money to go to the Alzheimer’s Disease International conference in Budapest in fewer than ten days’ time. I’m giving a talk there on human rights, and my best friend Kate Swaffer arrived there today.

But I have been thinking a lot about Paul Mason’s work entitled ‘PostCapitalism’. It is an epic I feel and definitely an intellectual tour de force.

It has made me think about paid jobs and the public good. There are people who write open source software for hardly any money, and the quality of their work is good.

There is a mismatch between income and performance. I don’t think people who get the highest salaries in dementia and given recognition societally are the people who have contributed most value to dementia. In fact, I think the relationship is sometimes (but not always) the opposite.

There are people who have written Wikipedia pages for nothing for much of their life. As a comparison, I nearly ended up making a financial loss in royalties in my second book on dementia because the index which I paid for myself cost so much. I enjoy writing about dementia though – my first book won best book of the year award in the BMA Awards for the health and social care category.

I do think I.T. has totally changed things around. It is easy to disseminate material for free now; some “goods” are not unreplaceable. If I park in car parking space, that takes up the space for somebody else. If I eat a banana, that deprives somebody else of a banana. If I share pdfs on the internet for free, I deprive no-one.

Back to the main issue, I do not need validation through being important. There are personal issues about the approach of the harnessing of opinion I dislike strongly. Co-production should be equal and reciprocal, not effectively ‘asset stripping’ of social capital to make a profit as Alison Cameron put it earlier today. (I thank Alison Cameron for  bringing out the best in me in focusing on codesign and coproduction particularly.)

But while I am still alive, I would like to give something back. Anything can happen to anyone at any time, so I am going to build from scratch a website all about dementia and those closest to them.

I am lucky I have some knowledge about dementia, and I will see where this takes me. I can spot blind spots in policy through medical training which many people in Big Charity can’t. If you have any views on what should be on this website, please do feel free to contact me. I ultimately want to make a society, not concerned with, or looking for surpluses or profits, so any thoughts on that are welcome too.

 

Where English dementia policy needs to go now: a personal view for #AlzDebate

Shibley Rahman 1 Comment

Dementia wordie

I am an academic physician specialising in dementia. I write this blogpost as a guide to people who might be interested in my views on where English dementia policy needs to head.

I spend most of my time studying the latest papers around the world in dementia and other cognitive disorders from here and around the world. I also seek out the views of people who’ve received a diagnosis of dementia, and live daily with the condition. I haven’t ‘engaged’ them, or ‘involved’ them. They’re my friends, and I chat with them. I am also interested in the beliefs, concerns and expectations of those closest to them.

I’m slightly fed up of people promoting themselves in English policy to be blunt. These are people who feel their own self importance is more important than the needs of people with dementia and those around them. I am sick of how dementia has become an ‘industry’.

Conversely, people who have a diagnosis diagnosed below the age of 65 need professional help and guidance to help them navigate through the effects of the diagnosis on their social networks and/or employment.

We can’t leave people languishing with such little support in parts of the country – and we don’t just need a high volume of low quality diagnoses. All diagnoses have to be correct as far as possible, and I suggest committing resources for training up GPs or specialist nurses who already have a good knowledge of general medicine to assist with this.

The policy thread of ‘dementia friendly communities’ is well intended. For me, however, it smacks too much of the ‘does he take sugar?’ phenomenon. Maybe it’s the case that I am indeed supersensitive to this. I am physically disabled, and do tend to notice how people’s attitudes can be incorrectly formed on this basis.

One of the most inspiring talks I heard recently was by Simon Baron-Cohen, a chair in psychology at Cambridge. Simon was talking at the LSE, but he was my first ever supervisor at Cambridge. He was talking about his own specialism – autism and Asperger’s Spectrum conditions.

He mentioned Gary Mackinnon – and how despite hacking into the US top security systems Gary wasn’t (and isn’t) intinsically a bad man – Gary had left electronic post it notes every level he had breached for the benefit of the CIA.

Simon urged a reframing of autism as a condition which presented both disabilities but aptitudes. I feel we need a similar reframing and reforming of English dementia policy. I don’t wish to get into an aggressive discussion of social v medical model,  but the framing of our policy is poor. The term ‘post diagnostic support’ for many does not inspire confidence. What would inspire confidence is a practical infrastructure for enablement, comparable to what would be provided in rehabilitation following a physical disability.

We need to harness the opportunities of non-medics, but who have a huge amount to contribute – ranging from occupational therapists who can help with assistive technologies, or speech and language therapists who can help with communication or swallowing difficulties?

Dementia not being treated as seriously as cancer is a real problem. We can’t go on producing policy annually for the benefit of one Big Charity, producing one million, then two million, then three million “dementia friends”. We need to have clearly signposted choice points in enablement. Dementia policy needs a substantial consensus on care pathways – to give some certainty, but also to include some flexibility.

There needs to be some structure too. Society should be inclusive, but there are limitations to overegging the ‘dementia friendly communities’. Communities should be inclusive and accessible to all. You can’t “spot” a person with dementia in the community by a sticker on his head, or by the way he’s acting.

Research needs to be more balanced, including good quality research into care as well as the brilliant cellular and molecular research. But humility is needed to accept that all research is worthy in itself, irrespective of whether drug therapies are found.

People who say we don’t have to choose between cure and cure need to factor into their views that social care funding is on its knees. The NHS also has insufficient monies to perform optimally. All persons with dementia are entitled to the best quality healthcare, whether they’re in hospital, at home, in a hospice, or in  a care home. Cosying up to government and then complaining to fix dementia care is – no ifs or buts – weak leadership.

Access to the right quality care is important. Some of the work can be done by people with not much more than a NVQ in advising or supporting, but we do fundamentally need more properly trained clinical specialist nurses ensuring continuity of care and higher level care (e.g. in caring for those caring, palliative care, incontinence). One reason for this is a reluctance to consider dementia as a terminal illness – but the other sadly is selfish brutal politics. You unfortunately pay for what you get.

Above all, the lived experience of all people living with dementia and their closest is paramount. We don’t need to pour huge amounts of money into middle men into measuring this. We simply need to listen.

The term ‘post diagnostic support’ for dementia is as unconvincing it sounds

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The term ‘post diagnostic support’, as applied to dementia, I feel is incredibly unconvincing. English dementia policy has entrenched itself in a position of the primacy of the diagnosis. I do not wish to rehearse yet again the numerous arguments for and against the timely diagnosis here.

In an ideal world, ideal for Big Pharma that is, you’d invest in an insurance package in the US., or you’d be a patient of the NHS, and, on your diagnosis of possible dementia, your general practitioner would prescribe you a “magic bullet”. The bullet might slow the progression of your dementia right down, or may even stop you getting definitive symptoms.

And there is quite a quaint faith in ‘cures’. You can’t as such ‘cure’ headaches or asthma. And the drugs which were trialled on healthy 30-40 year-olds as single interventions aren’t necessarily going to behave themselves in 60-70 year-olds with a number of other medical complaints receiving polypharmacy.

But the world is not ideal – the cuts in social care around the world are testament to that. If the numerous failures in orphan pharmacotherapy for Alzheimer’s disease is anything to go by, it might be wise not to repeat the same mistake yet further and expect a different result.

The diagnosis disclosure itself is not the simple imparting of information that ‘you have dementia’. It should be a chance for the person giving the diagnosis, whether a physician, GP, specialist nurse or otherwise, to explore the beliefs, concerns and expectations of the recipient of that diagnosis. And if necessary, it should be a chance for the person to have some counselling about the potential implications of the diagnosis.

The phenomenon of ‘nothing can be done’ has a number of repercussions for people. It can lead to a delay in seeking a diagnosis, and lead to a lack of engagement with the diagnosis once given.

It is also untrue.

A correct diagnosis of dementia could lead, perhaps, to the correct care and support mechanisms coming into action.

I have personally problems with the notion of ‘consumer choice’, but not because I am a protecter of the professions’ vested interests. Far from it.

I once asked Prof Bob Woods what he thought of ‘meaningful activities’. Prof Woods replied ‘better than meaningless activities, I suppose, Shibley?’

Likewise, it has to be, surely, the case that choice is meaningful too? Actual choice is scuppered by all of the social determinants of health – and in particular lack of money.

But I do not agree with an overly paternalistic, profession-driven, approach either. I think a person after a diagnosis of dementia should be actively making decisions about what’s best for him or her after diagnosis.

This might include appropriate housing as a personal home, or residential settings. Or it might include help with speech or swallowing from a speech or language therapist. Or it might include preventative strategies for medics for high blood pressure or high cholesterol. Or it might include occupational therapy intervention for assistive technology help, such as memory aids, not all of which is prohibitively expensive.

I think also the ‘enablement’ perspective also recognises that you may not be able to get a person to exactly where he or she was before, but allows for diversity, and allows for the existence of a person equally as valid, at least, as that pre-diagnosis.

Planning for the future also necessarily involves protection; and this could include protection over financial and legal affairs, such as power of attorney or budgets. The social care profession must have a seat at the table there.

I really do feel the term ‘post diagnostic support’ does a disservice to what should and could be happening beyond a diagnosis of dementia. This is evident in the output from some of current clinical leaders in dementia all too sadly.

Am I contributing to a culture of fear about the NHS?

Shibley Rahman 0 Comments

The authors of this piece are Rebecca Myers and Shibley Rahman.

Rebecca Myers (RM) is an Organisational Development Practitioner/Return to Practice Community Staff Nurse).

Dr Shibley Rahman (SR) is a former junior doctor, and currently an academic physician in dementia.

We are posting this on a freely available blog and we welcome any comments you have on this topic. Whilst not specifically related to the focus of this site, this is an important blog which is helpful for people at large to reflect on.

Introduction

  • “We are so sorry but …”
  • “You know that patient you saw last night…”
  • “There’s been a complaint and it concerns you…”
  • “We’ve missed our quality/financial target this quarter…”
  • “If you do/say that your position is untenable…”

These are just some of the phrases that trigger an emotional response of fear, and can affect us all whether we are a member of the public, a health professional, Board Director or the Secretary of State for Health.

How we respond to our feeling of fear can lead to a number of constructive or destructive consequences for patients, staff and the NHS as a whole.

This piece seeks to provoke thought, discussion and change using learning from neuroscience and the social sciences. It is aimed at a wide audience of patients, professionals, politicians, press and the population at large; we believe it is only by a shared/broader understanding of responses to fear, and individual and collective responsibility for our responses and their potential consequences, will we be able to create a possibility of talking openly and honestly about issues that affect the performance and future of the National Health Service.

This in turn can encourage a dialogue with a range of people who might be touched by the issues. We hope that with exploration of the ‘science’ behind fear and responses to it we might head towards a more inclusive and generative set of solutions for the challenges in the NHS for the benefit of patients, staff and the public.

 

 

 

Personal perspectives

Our personal responses are worth some scrutiny to illustrate the theory and the science.

We are, like everyone else, acutely aware of feeling fearful. If you return to clinical work after a protracted period of time out (as indeed one of the authors, RM, has done), you can become engaged into a ‘conscious incompetent/competent’ state. This is where you have to think so much harder to achieve the same result. It also means that, depending on the precise moment-by-moment situation, you can be prompted into a whole range of emotions from curiosity to frustration to enthusiasm and outright fear. Initially described as “Four Stages for Learning Any New Skill”, an influential theory developed at the Gordon Training International by its employee Noel Burch in the 1970s (Adams, date uncertain) offers a framework for understanding and then managing fear in learning situations.

 

An explanation of fear and blame

It is important in exploring fear not to be unhelpfully reductionist. But it has long been recognised that fear can be manifest as an outright ‘flight or fight’ response as per Walter Cannon (1932); it has its biological basis as a primitive survival mechanism alerting us to potential threat and enabling us to respond in a way that keeps us safe.

Damasio (1994) introduced the “somatic marker hypothesis” which suggests structures in the ventromedial prefrontal cortex provide the substrate for learning an association between certain classes of complex situation on the one hand, and the type of bio-regulatory state (including emotional state) usually associated with that class of situation in past individual experience.

The establishment of a somatosensory pattern appropriate to the situation via the ‘body loop’ or the ‘as-if body loop’ both overtly or covertly is co-displayed with factual evocations pertinent to the situation and qualifies those factual evocations. This constrains the process of reasoning over multiple options and future outcomes and ‘shortcuts’ to a judgment of the scenario as either good or bad.

When this is overt the somatic state operates as an alarm signal. When covert it operates a biasing signal, which in turn influences cognitive processing.

This suggests that interpretations of situations and learned responses to these (including those laid down in early childhood) guide our reactions to situations we may consciously or unconsciously perceive as fearful.

That the brain processes the precise emotion of fear in a distinct way is indeed supported in cognitive neurology evidence. It has been known for some time that a part of the brain, called the amygdala (so called as it is shaped like an almond), is somehow involved from rare experiments of nature. But the neural network involved might be more extensive than first hypothesised (Khalsa et al., 2016).

 

Why the response to fear is personal

Once the emotion/sensation of fear has arisen we have various conscious and unconscious response options. If we take a Gestalt perspective, we would say we ‘need’ to respond in a way that addresses the original sensation or else we remain in a heightened state of awareness. This would prevent us from ‘moving on’ from the situation we had encountered (this is shown in an adaptation of the ‘experience cycle’ presented by Zinker, 1977).

Figure

How the sensation leads to different emotions, is influenced by the context in which we see ourselves, and the subsequent meaning we attach to them. (See, for example, Gergen’s work on social constructionism https://vimeo.com/15676699.) Using the example of facing a situation back in practice to illustrate, will my actions help or harm the patient, and to what degree? Is there someone supportive nearby to guide and assist me if I get stuck? If I make a mistake what will happen to me?

Whilst we might have a biological predisposition to reacting in a certain way as a learned response, it is possible that our individual childhoods might contribute to these learned responses and adult psychopathology (Rich, 2006). Thus, in my moment of fear, if I define the situation as one of potential failure do I choose to say “I can’t do this” and risk a reaction from the patient of lack of future trust, or my mentor of seeing me as having less ability or potential which in turn affects my ability to practice? Our ability to formulate a constructive response to this in the moment may be hampered by a tendency to fragment and simplify the problems, rather than to see the reality of the situation as a whole. This is demonstrated by the framing of the narrative by the physicist, David Bohm who describes the importance and need for ‘wholeness’ when looking at and responding to situations.

The neurocognitive explanation might appear deceptively straightforward, but in reality involves a complex process map including task selection and decision-making in the prefrontal cortex and related structures (Gleichgerrcht et al., 2010).

 

When the emphasis changes from the individual to broader organisational learning 

If we extrapolate the response of an individual to a fear response to the group or organisational level we can observe situations where in the desire for learning or accountability there is a desire to find someone to blame. There is a concern if no-one is held to account, such as in Mid Staffs or Southern Cross, that any misfeasance goes undetected and so, effectively, unpunished? This can then lead to a sense of things being unresolved or lessons not learnt, which can leave people unable to withdraw or obtain closure.

Again taking the personal to illustrate, becoming a ‘marked man’ by a regulator can also put you on edge, even if you have had your problem mutually resolved between you and your regulator. Somewhat paradoxically for the regulator, if following this experience you are so petrified of making a mistake, you put yourself at greater risk of making a mistake. The aspiration that a clinician (or anyone else) never makes a mistake is of course ideal, but this flies in the face of the reality of life (clinical or otherwise). It’s what is well known by people who’ve faced addictions as the “don’t think of elephants” phenomenon – your first response to not thinking of elephants is to think of an elephant.

The experience of one of us (SR, having been through the entire cycle of disciplinary procedures by a clinical regulator when very sick, and then restored when well), albeit individual, outlines the tension between the rhetoric of organisational learning and ‘learning from failures’.

This experience (for SR) was an utterly demoralising, destructive, experience, but from which a recovery revealed itself, both in mental health and professionally. This personal experience coincided with a period where that regulator had a problem of a number of alleged suicides due to the investigative process (Davies, 2013). It is still not widely understood how the regulation of an individual and the contributory factors for the case are related to the regulation of the system and its working environment and how by focusing on one you might address the other.

What is important to think about is that the essential biological response to fear plays out moment-to-moment wherever we ‘sit’ in the context of the NHS and the consequences that arise from our responses impact not just ourselves but also those around us and, in some cases, the whole system. This is seen not only in high profile clinical/care cases such as the Bristol Inquiry, Mid Staffordshire, Baby Peter and Winterbourne to name just a few but also in the responses to the Health and Social Care Act, funding decisions in the NHS and social services, and approaches to regulation.

 

This issue applies to everyone

 We argue that this issue is of relevance to us all. An inability for any of us to ‘manage our fear’ in order to deal with the issues involved in a reasoned way risks preventing us from moving forward: ‘Insanity is doing the same thing over and over again and expecting different results.’ (Albert Einstein)

It is worth thinking about whether the fear around the NHS serves any evolutionary advantage, which offers an opportunity for something better. Does it make us better clinicians in our normal clinical life? Is it supposed to tune us in sharply in what is deemed unacceptable by the public at large or raise our awareness around the future of a much loved institution? Or is it rather that the moral panic that can ensue is not the best climate calmly to formulate clinical decisions or policy?

For all involved, from ministers to families, events referred to above, understandably evoke a range of emotions of which fear will play a significant part. We ask, and say to, ourselves: “I could have done more”; “How did I allow my loved one to be treated like that?”; “Why didn’t I speak out?”; “Will I lose my job/reputation/election?”. We are not commenting on the hierarchy of these questions or making judgement here on what is or isn’t appropriate but highlighting the commonality around how our emotions are evoked which leads to a response which in turn leads to a consequence. Being able to be thoughtful about the potential consequences of our own reactions in these moments (or, in the case of the type of examples above, significant periods of time) whilst difficult can be extremely valuable.

As Manoj Pawar (2007) notes:

“As a result of the fear-based emotions linked to blame, people tend to shift their energies from understanding and learning processes for the interest of the group toward self-preservation, attacking and defending their individual interests.”

If I respond with the ‘fight’ response by attacking the representation/manifestation of my fear will I push others to defend and fight back or run away (flight)? Will that then help with the situation I, or the system, am facing?

But a slower cognitive process can later modulate what is conceivably an appropriate evolutionary response. It is well known that slower clunky parts of the brain involved in planning act as a check on the faster response (for a discussion of the wider context of this, please see Haidt (2011) and Kahnemann (2012)).

The authors of this piece want to be very clear they are not suggesting not raising issues or questioning mistakes or policy decisions, but highlighting the importance of doing so in a manner that enables people to think and reflect not overwhelm or evoke defensiveness and denial. Perhaps adopting what Edgar Schein (2013) describes as a “humble inquiry”, which advocates asking questions to understand what has happened and why, refraining from judgement and keeping an open mind.

This can guard against the well known psychological phenomena of ‘confirmation bias’.

“When we think that a particular course of action is correct, our tendency is to interpret any available information as supporting that thinking. This is known as confirmation bias.” (Beshears and Gino, 2015).

The world of social media has opened up the dialogue and given voice to those who often weren’t heard. It is changing the relationship between different groups. The social care blogger @ermintrude2 recently analysed this phenomenon of ‘flattening hierarchies’, and what might actually be behind this meme (@ermintrude, 2015).

 Both positive and negative consequences?

With this brings both positive and negative consequences and there’s a fine line between possible outcomes.

Positive experiences undoubtedly occur around sharing experiences, raising issues challenging assumptions, enabling dialogue, building networks and sense of community. “John’s Campaign” http://johnscampaign.org.uk is one example of a brilliant organic campaign for carers to accompany patients diagnosed with dementia into hospital, which has become a new NHS quality target (known as a CQUIN).

But there is a flip side: trolling, public abuse, combative debate, personal attack and groupthink; all can be fear inducing and again provoke fight – flight responses. At worst, individuals, previously well, can go into a spiral of decline of profound depression, and, if the narrative provides no sense of hope for improvement, we can see a state of ‘learned helplessness’ develop around people’s ability to change the situation (Vollmayr and Gass, 2013).

No one is immune from this – from junior doctors who in statutory law do not have whistleblowing protection (Cooper, 2016), to relatives trying to get answers following a mistake or unexpected death, to senior managers having their personal lives plastered over the front page of the newspapers – codifying just how vulnerable we all are.

People talk about a ‘blame free’ culture or a ‘just’ culture within the NHS as if the culture of the NHS is: (a) homogenous and b) determined purely by those within the ‘system’. But we argue that this fails to recognise the wider ecosystem and what Ralph Stacey (2001) refers to as the complex responsive processes that are set in motion when any of us do something (https://m.youtube.com/watch?v=RTAV7-FZLRs). This can make the discussions about who is to held to account, and how, complex and controversial.

 

A need to be honest about what we mean about ‘shared’ leadership

We would suggest that all of us contribute to this culture either directly or indirectly, and to ignore this is essentially a “wilful blindness” to the harm that is done when patients, the population at large, staff (be it clinical, administrative, social services or managerial) and politicians are not listened to in a blame culture. This will inhibit our ability to learn from experiences, good or bad (Heffernan, 2011). And wilful blindness can occur anywhere in healthcare ecosystems.

Peter Senge (2006) has written extensively on the learning disciplines – we individually and collectively need to foster to create a ‘learning organisation’ and both Sir Robert Francis and, more recently, Don Berwick referred to this as essential for the NHS to not just survive, but also thrive in the current climate of quality and financial challenges (National Advisory Group on the Safety of Patients in England, 2013).

 

So if we always do what we’ve always done…

Arnold Beisser’s (1970) Paradoxical Theory of Change argues, “change occurs when one becomes what he is, not when he tries to become what he is not”. So next time something happens which evokes a sense of fear and anxiety whoever you are or wherever you sit within the ‘system’, remember the chain of complex responsive processes you may set in motion and ask yourself, “am I creating an environment of curiosity, learning and change?”

Or, are you in fact perpetuating a culture of fear and blame, that takes us further from where we want, and more importantly, we believe, need to be?

London, 1 April 2016.

 

 

 

References

@ermintrude2 (2015) Flattened hierarchies (blogpost dated Nov 8, 2015), https://medium.com/@ermintrude2/flattened-hierarchies-ee54e9ba2cfc#.bcin2dknp.

Adams, L. “Learning a New Skill is Easier Said than Done”.Gordon Training International. http://www.gordontraining.com/free-workplace-articles/learning-a-new-skill-is-easier-said-than-done/ (page accessed 11 March 2016).

Beisser, A. (1970) Paradoxical Theory of Change, Gestalt Journal Press http://www.gestalt.org/arnie.htm

Bergias, S. (2013) Truth-Resistant People, Leadership Excellence, March 2013, pp.11.

Beshears, J, Gino, F. (2015) Leaders as Decision Architects, May, https://hbr.org/2015/05/leaders-as-decision-architects.

Bohm, D. (1980) Wholeness and the Implicate Order, Routledge.

Cannon, W. (1932) Wisdom of the Body. United States: W.W. Norton & Company.

Cooper, B. (2016) How the government is leaving whistleblowing doctors to twist in the wind, New Statesman (25 February 2016), http://www.newstatesman.com/politics/health/2016/02/how-government-leaving-whistleblowing-doctors-twist-wind

Damasio AR. (1994) Descartes’ error and the future of human life. Sci Am. Oct;271(4):144.

Davies, M. (2013) GMC launches internal review of suicides among doctors facing fitness-to-practise investigations, Pulse Today, http://www.pulsetoday.co.uk/your-practice/regulation/gmc-launches-internal-review-of-suicides-among-doctors-facing-fitness-to-practise-investigations/20004473.fullarticle (page accessed 11 March 2016).

Gleichgerrcht E, Ibáñez A, Roca M, Torralva T, Manes F. (2010) Decision-making cognition in neurodegenerative diseases. Nat Rev Neurol. Nov;6(11):611-23.

Haidt J. (2001) The emotional dog and its rational tail: a social intuitionist approach to moral judgment. Psychol Rev. Oct;108(4):814-34.

Heffernan, M. (2011) Willful Blindness. Walker & Company, 2011.

Kahnemann, D. (2012) Thinking fast and slow, London: Penguin Books.

Khalsa, SS, Feinstein,JS, Li, W, Feusner, JD, Adolphs, R, Hurlemann, R. (2016) Panic Anxiety in Humans with Bilateral Amygdala Lesions: Pharmacological Induction via Cardiorespiratory Interoceptive Pathways, The Journal of Neuroscience, 23 March, 36(12): 3559-3566.

Mendick, R, Donnelly, L, Kirk, A. Medical blunders cost NHS billions, Telegraph, http://www.telegraph.co.uk/news/health/news/11733719/Medical-blunders-cost-NHS-billions.html 11 July 2015 (page accessed 11 March 2016).

National Advisory Group on the Safety of Patients in England (2013) A promise to learn – a commitment to act: Improving the Safety of Patients in England, https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/226703/Berwick_Report.pdf.

Nenadic I, Güllmar D, Dietzek M, Langbein K, Steinke J, Gaser C. (2015) Brain structure in narcissistic personality disorder: a VBM and DTI pilot study. Psychiatry Res. Feb 28;231(2):184-6.

Pawer, M. (2007) Creating & Sustaining a Blame-Free Culture: A Foundation for Process Improvement, The Physician Executive, July/August, pp.12-13.

Rich P. (2006) From theory to practice: the application of attachment theory to assessment and treatment in forensic mental health services. Crim Behav Meant Health, 16(4):211-6.

Schein, E.H (2013) Humble Inquiry: The Gentle Art of Asking Instead of Telling. Berrett-Koehler Publishers.

Senge, P.M. (2006) The Fifth Discipline: The art and practice of the learning organization: Second edition, London: Random House.

Stacey, R (2001) Complex Responsive Processes in Organizations: Learning and Knowledge Creation (Complexity and Emergence in Organisations), London: Routledge.

Vollmayr B, Gass P. (2013) Learned helplessness: unique features and translational value of a cognitive depression model. Cell Tissue Res. Oct;354(1):171-8. doi: 10.1007/s00441-013-1654-2. Epub 2013 Jun 13.

Zinker, Joseph, (1977) Creative Process in Gestalt Therapy. New York: Brunner/Mazel Publishers.

The UK budget 2016 has exposed convincingly the grim reality of ‘dementia friendliness’

Shibley Rahman 0 Comments

The most significant aspect of yesterday’s Budget was that UK growth is revised down last year, this year, and indeed every year it’s forecast. But it was the day last orders were given – failure to meet most targets, and more borrowing and national debt. The current Government boasts that it is only with a strong economy it can deliver on aspects of life, many of which are relevant to people living with dementia and all types of carers. But it is clear that the UK economy is still inherently weak. The concept of the ‘dementia friendly communities’ has been to the financial benefit of many people without dementia, but the key question remains about its license to operate from the perspective of people living with dementia and their significant others.

 

Instead, as a question of priorities, corporation tax has been cut and billions being handed out in tax cuts to the very wealthy. This is unlikely to be exhibited in any significant improvement in dementia friendliness by multi-nationals and high street chains.

 

It is right that the Chancellor has recognised the funding pressures facing councils and local services over the next few years and has not announced any more cuts to local government.

 

But it is indeed disappointing that the Conservative Chancellor has not accepted calls by councils, the NHS, care providers and the voluntary sector to bring forward the £700 million of new money in the Better Care Fund by 2019/20 to this year. The failure to do so means vulnerable members of the community still face an uncertain future where the dignified care and support they deserve, such as help getting dressed, fed or getting out and about, remains at risk. This is the grim reality of what is marketed as ‘dementia friendly communities’ has come to in the UK, a concept which still continues to benefit some rather than others. This is at a time when the Government is known to be shifting priorities from dementia to diabetes, to which instruments such as the ‘sugar tax’ and obesity strategy might more directly speak to. The morale of people expected to deliver high quality care, including junior doctors and nurses, is at the lowest it has been for quite some time.

 

Vital social care services are relevant to protecting and enable people in society, not just in relieving the massive problem of delayed discharges in the NHS. The threat of a care home crisis is still disturbing. The deficit in the NHS has risen to its highest level ever on record. Waiting times are up, the NHS is in a critical condition, hospital after hospital faces serious financial problems. The NHS should have the resources to concentrate on the health needs of the people, not do budgetary acrobatics to survive. With a distinct lack of influential people speaking truth to power, dementia policy in the UK is in a dire state.

 

At a time when the Public Accounts Committee have only just reported that NHS finances have deteriorated at a severe and rapid pace, we do not just need gimmicks from charities loyal to Government of ‘fixing dementia care’.

 

The whole system needs proper resource allocation so that people living with dementia can have their health and wellbeing enhanced, whatever the care setting. Mistakes here are compounded in a double lock from serious mistakes by Government civil servants in dementia. The recent Implementation Plan for the Department of Health 2020 document on dementia did very little to prioritise the importance of skilled workforce such as clinical specialist nurses in care pathways, and indeed was generally bereft of meeting the needs of people with dementia and carers in clinical settings.

 

We have also seen devastating cuts to public health budgets and mental health budgets, further having a devastating impact on English dementia policy. Previous governments have touted the use of these tools as promoting ‘choice and control’, and yet the rhetoric is clearly mismatched to reality. Earlier this month the Government forced through a £30 per week cut to disabled ESA claimants. As dementia is a disability both under domestic and international legislation, it is hard to see how the UK wishes to promote international policy of sustainable communities and independent living for people living with dementia under the lens of disability rights.

 

Finally, the UK needs to value and acknowledge the social capital of the huge army of upaid carers, as well as paid carers many of whom are afflicted by under-employment and insecurity. Security comes from knowing where your income is and knowing where your job is. We need to value all carers if the rhetoric of ‘dementia friendly communities’ is to have any substance.

 

All in all the UK budget exposed the grim reality of “dementia friendly communities”, and the stark impotence of key individuals now to speak truth to power.

Changing the story will change minds

Shibley Rahman 0 Comments

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The fundamental concern, not true, about many innovative initiatives in dementia care and support, such as engagement and ‘friendly communities’, is the unintended consequence that they act as a sticking plaster, but very little else. Proponents of sticking plasters will be the first to point out that they’re better than nothing.

But is it actually true that they’re better than nothing?

Take for example the scenario of someone being invited along to give a talk in response to a new Government/charity document, and that person has been given a diagnosis of dementia. Imagine, if after four years of intense ‘awareness’ raising and innovative initiatives into ‘friendliness’, including from some of the biggest names in the business, that person was accidentally left off the scheduled programme.

A concern has been for me is that engagement and involvement serves more of a marketing function, as a printing press for grant raising, rather than genuine involvement. That is, rubber stamp tick box ways of working. You can quite simply have a pathological culture and have the semblance of quasi-involvement.

Look past how that document from Government/charity might have been produced. At first, I have been encouraged to think of this as ‘who’s in the room..’ after Alison Cameron educated me on the ‘no more throwaway’ work of Prof Edgar Cahn, and the co-production workstreams from Nef and Nesta. Alison is totally correct. And it’s essential to add ‘…and who’s also listening to those people in the room.’

I am worried that this document would have been produced by the usual ‘big names’ in the third sector; few from people working in this area with a daily understanding of good professional practice and evidence; and not more than one or two living with dementia or carers. And you see this pattern repeated time and time again, say in the formation of “clinical excellence” guidelines.

And it at once becomes perfectly understandable how a person living beyond a diagnosis of dementia, to use Kate Swaffer’s succinct term, could have got left off the timetable. Shocking but not surprising. Whatever the explanation, the emotional effect has been made, but it is time for all of us to move on – until the next time that is.

Time and time again people with dementia or carers, if at all, are given a small slot, more often than not at the end of the day’s programme, exist as an afterthought for event organisers, with other speakers not aware of the defect. Exceptions though exist; a friend of mine living with dementia was given a slot in the morning in an excellent research conference, and was specifically told to take his time even if the government minister overran.

A lot of faith is put into the rules of the game. But sometimes the rules of the game need changing. There needs to be a fundamental change of culture. People with dementia have been advocating for their rights, but this is as useful as the issue of who is listening. A third friend of mine is about to set out the case for human rights and disability for people with dementia in Geneva; but will the relevant non-governmental organisations listen and act?

Like a dog sitting on the word ‘no’ in the phrase ‘no dogs allowed’, we have to concede Apartheid is no longer the law in South Africa. It is not acceptable to have a sign in a B&B saying ‘No Irish, no blacks, no dogs’. There is normally a lag between a moral outrage, and a change in behaviour. I hope that this will happen too in a change in narrative away from the prejudices of society about dementia.