Policy

People with dementia should not be the audience, but the main actors

Shibley Rahman 1 Comment

I must admit that I always feel like throwing something at my computer screen when I see a steering group for people with dementia run by people without dementia but with big financial grants.

For some reason, I used to conceptualise the way some people had approached ‘dementia friendly communities’ like a zoo. Event organisers serially wheeled out a star ‘person with dementia’ like a spectacle, akin to the ‘push me pull you’ of Rex Harrison.

The boot is on the other foot now.

It’s like this.

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The thing is communities which are ‘dementia friendly’ should in fact be suitable for all. This means inclusive to all. This means accessible to all.

A major problem with the term ‘dementia friendly’ is that it implies that you can identify immediately  person with dementia by the way he or she is behaving in the community. No person with dementia has a sticky adhesive label on his or his forehead saying ‘I have dementia’.

Dementia is an invisible disability. It’s a disability where we can identify the exact problem, say problems with hearing in a noisy room, or problems with memory, or problems reading. Like all disabilities, it requires a sensible approach such as identifying if the problem causes an impairment and subsequent handicap.

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I’ve seen this referred to as ‘cognitive ramps’ – but any level of analogy might be suitable such as ‘cognitive wheelchairs’. The basic point is that you’d expect employers to build wheelchair ramps (or simple) for young employees with a physical disability to allow them to get into the building to do their work in the first place; such an attitude is needed for people with young onset dementia too (this is dementia below the age of 65).

The other big way in which the term ‘dementia friendly communities’ is wrong is that it implies a very static process, which ironically is not how the UK accreditation scheme works at all. The UK standards (really specifications) necessitate sustainability, i.e. that the community will be friendly in the future, and is always ‘learning to be friendly’.

This gets to the heart of a tension which exists in policy. That you often hear from many diverse people with dementia that they’re living for the present, and yet there’s one dimension of policy that aspires for a better world for tomorrow – whether this is in the form of dementia friendly communities, or better treatments for the future (disease modifiers or symptomatic treatments).

The policy which crystallises the imperative for the world to build ‘dementia friendly communities’ for the future actually comes under the WHO sustainable development goals. They’re pictured here.

Sustainable Development Goals_E_Final sizes

 

It’s clear that people living with dementia need access to the UN Convention on Rights of People with Disabilities (UNCRPD), as all the preamble and articles of that convention apply directly to people with dementia.

Both these instruments are very closely linked to the implementation of a rights-based approach for dementia. Human rights lie at the core of this phase of supporting people with dementia to live in the community after their diagnosis. Even if the UK takes the step of repealing its existing human rights legislation, implementing the European Convention on Human Rights, the global policy tools remain.

The question is of course how people with dementia can best advocate for them. The safest way to make this manageable is to make sure human rights remains in the international conversation, as demonstrated, for example, by Marc Wortmann in the PAHO Plan of Action summit in Washington.

Human rights became serious business when mentioned by Kate Swaffer, Chair of Dementia Alliance International, at the WHO Summit in Geneva last year.

But we do also need local leads which integrate dementia and disability policy drivers together. This, for example, might be facilitated by organisations such as Alzheimer’s Europe participating in the work of the European Disability Forum to make sure that the achievable ‘UN sustainable goals’ and UNCRPD are indeed implemented as ratified.  Yesterday, the EPSCO Council adopting the Luxembourg EU Presidency conclusions most helpfully took Europe down the route of rights-based advocacy, as faithfully reported by Alzheimer Europe.

But I feel that we shouldn’t lose sight of the main issue: people with dementia are no longer in the audience. They’re the main actors.

Working groups must be a source of collective action not funding dependency

Shibley Rahman 0 Comments

The Scottish Working Group for people with dementia and the European Working Group for people with dementia have been hugely successful, however you choose to measure success. They have witnessed remarkable individual advocates for dementia in people living with dementia, for example Agnes Houston from Scotland and Helga Rohra from Germany.

It is essential that policy in dementia is driven organically by people living with dementia and those closest with them, rather than people who are perceived somehow to have a sense of entitlement in a body corporate sense. That is not to say that the influence of the body corporate is a bad one: it is an important mechanism for financial sustainability and confidence for the future.

It would however be churlish to deny that bodies corporate can become focused on their brand. The brand identity is a major source of social and financial capital, known as brand value, and leverages the competitive advantage of the body corporate. Clearly bodies which have higher revenues are able to allocate resources into branding, often including sophisticated marketing and legal protection, in a way that smaller minions can’t manage.

With well known brands comes responsibility. The voluntary sector is extremely important in providing capacity for the service provision in dementia in England and Wales, but it is too easy for entities in the non-statutory sector to abuse a dominant position.

Working groups with sufficient momentum can have a beneficial impact on policy, and very often co-production is necessary to give policy legitimacy and authority. There is no doubt at all that dementia advisers and dementia support workers have a critical rôle to play in service provision, although we do need to build on the current published validations of these roles. There is very little commentary on the efficacy of these roles in the peer-reviewed academic literature, which must cause grave concern. On the other hand, the literature on the value of clinical nursing specialists is quite formidable. And yet corporate power and their ambassadors can sway the debate in a direction not in the best interests of persons with dementia.

But working groups if too large can deter against diversity. They are especially dangerous if their primary purpose, especially if argued through the prism of the business sense, is primarily to promote corporate brands, encouraging a sense of funding dependency. This can filter down to a dependency on an individual level where advocates in dementia ‘get gigs’ through their membership of an advocacy organisation.

An unintended consequence also is if national working groups containing ‘revolving door’ members of people who get themselves onto the same committees with relative ease, facilitated with funding bodies who are happy to feather their own nests, at the expense of other ‘entrants’. If the pool for these people is limited, then international initiatives can suffer. This, in my view, would be hugely damaging with important international policy streams, such as in dementia inclusive communities or the UN Convention on Rights for People with Disability.

I, overall, feel the ‘call to action’, while overused, is a good way for people not just to complain, but to ‘do something’ about the situation. Complaining and not offering an alternative can be a particular approach of people from a certain political inclination. And not all funding is bad: funding does not necessarily set up an evil axis of influence, and it is important for clear boundaries to be maintained even in strategic alliances to avoid inadvertent exploitation from either party.

I also do believe that the whole is greater than the sum of the individual parts. One of the weakest parts of the empowerment approach has been a lack of sustainability, at worst encouraging a culture of dependency. It would be a disaster, in my view, if this leaked into the formation of national working groups in dementia.

 

In the “war against dementia”, where are our “boots on the ground”?

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army_boots

In my quest for knowledge about what is working and what isn’t working in dementia service provision, I often ask Agnes Houston MBE for advice.

“Scottish allied health professionals are brilliant!”, she once said.

Agnes, herself living with dementia, is in a good position to evaluate how good service provision has been in Scotland. This brings up to date the old adage from Sir William Osler, “Always listen to your patient“.

Of course, things have moved once since Osler’s day. Patients using the NHS when they’re ill also aspire to live in healthier times as a person in the community.

In September 2012 the organisation of International Chief Health Professions Officers (ICHPO) provided an agreed definition of an Allied Health Professionals:

“Allied Health Professions are a distinct group of health professionals who apply their expertise to prevent disease transmission, diagnose, treat and rehabilitate people of all ages and all specialities. Together with a range of technical and support staff they may deliver direct patient care, rehabilitation, treatment, diagnostics and health improvement interventions to restore and maintain optimal physical, sensory, psychological, cognitive and social functions.”

After my own coma due to meningitis in the summer of 2007, I could not walk or talk. I could not make a cup of tea, let alone plan a shopping trip in a local supermarket. With the help of a superb physiotherapist and occupational therapist in the neurorehabilitation ward of the National Hospital for Neurology and Neurosurgery, I was able to relearn from scratch these skills. I had in fact been a junior doctor there.

I think it’s easy to get wound up in processes in policy to do with allied health professionals, and only to view them within the never-ending prism of ‘vanguards’ or ‘new models of care’, but anyone with reasonable clinical experience will know of their pivotal importance in healthcare.

That is not to say we should overlook the opportunity of how they can operate in the community, including primary care settings, hospitals, hospices, and care homes, best to promote continuity of care and wellbeing. The driving force for this might indeed be reducing the ‘financial gap’, but my perspective is very much on reducing the ‘wellbeing gap’.

Today brought very conflicting news internationally. On the one hand, the UK Government were able to secure from parliament a mandate for bombing ‘ISIS’/Daesh in Syria with military air strikes. On the other hand, it was the International Day for Disabilities in celebration of enabling people. I have written about the latter issue here already.

At first, it might seem the military analogy of dementia might have a lot going for it. For example, a Doctor from a distance might authorise a prescription of a cholinesterase inhibitor, at a comparable distance in the air for a military strike. It is not clear what the borders of dementia are, in the same way geographical boundaries in Iraq/Syria have been argued to be poorly described. There is a need to form a geographical coalition to defeat Daesh, in the same way that countries around the world, including the G7, are “defeating dementia”.

But are the foot soldiers, indeed, “allied health professionals”? If the enemy is dementia, these foot soldiers in the absence of an outright cure thus far or effective sustainable long term treatment are potentially encouraging people to co-habit with the enemy.

So there are clearly limitations with the military analogy.

But the foot soldiers can give people with dementia the ‘tools’ to function well, such as access to exercise or assistive technologies, broadly in keeping with a reablement or rehabilitative approach for any long term condition; or they may come in the form of Admiral nurses to empower carers with coping strategies.

So what’s the problem?

We don’t have enough of these ‘boots on the ground’ for dementia.

Dementia as a disability needs to encourage sustainable achievable goals

Shibley Rahman 1 Comment

Earlier this year, Jessica Kingsley Publishers published my book ‘Living better with dementia: good practice and innovation for the future’.

As in previous work of mine, I wished to emphasise that the ‘nothing can be done for people with dementia’ philosophy is wrong. In fact, there is currently a legal obligation in England and Wales for any entity subserving a public function to obey the regulations of the Equality Act (2010). At an international level, the significance of viewing dementia through the prism of disability is further emphasised in a joint statement from Alzheimer’s Disease International and Dementia Alliance International published today.

Under this instrument, it states clearly that dementia is a disability. The consequences of this legally is there’s an obligation to make ‘reasonable adjustments’ for people living with dementia, treating any cognitive disability on par with a physical disability. In the same way you would implement wheelchair ramps to allow equal access to your buildings for your employees, you’d also give them the best way for them to do their job – if they needed, say, aids in reading out text on a computer.

Not all rights are enshrined in law, by any means, and there is the unintended consequence that laws which are not enshrined in law are perceived as not worth worrying about. But this is actually far from where we are on disability law. The United Nations in fact observes the International Day of Persons with Disabilities on Dec 3, 2015, and it can be tempting to see this arm of work as somehow totally different from other work such as “age friendly cities”. Rights are an important basis of advocacy, and I was determined to emphasise the rights agenda in my book – here’s an extract to explain.

This year, three themes are highlighted in the agenda: making cities inclusive for all, improving disability data and statistics, and including those with invisible disabilities in society and development. Of course, we don’t just have ‘age friendly cities’ or ‘dementia friendly cities’. You can develop a dementia at any stage, though the risk of developing dementia gets bigger as you get older. Dementia is not just something ‘old people get’. And we should be thinking about making all communities not just cities ‘friendly’, but a better philosophy is to require communities to be accessible and inclusive.

This cartoon conveys the sentiment felt by many of us: “dementia friendly communities” should be good for everyone, and the label jars uncomfortably with the aspiration not to label persons by their label – or specifically medical diagnosis.

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These themes echo the specific mention of persons with disabilities in five of the Sustainable Development Goals (SDGs): education; economic growth and employment; creation of inclusive, safe, resilient, and sustainable cities; reduction of inequalities; and data collection related to monitoring the SDGs. I think this is particularly important as dementia does not just affect people in more economically developed countries. All of us in policy need to make better links between the sustainable development goals and the ‘dementia friendly communities’, and to think especially how people living in low and middle income countries (LMIC) may also benefit from current initiatives too. I think the ‘care for today, cure for tomorrow’ oversimplifies the current situation, but through the sustainable development goals we have a means of achieving something sustainable and measurable.

Having your cake and eating it

Shibley Rahman 0 Comments

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People still want to have their visions, and also their key performance indicators, in the modern NHS and social care. This is otherwise known as “having your cake and eating it”.

For all the ‘feel good factor’ of power transitioning ‘to the edge’, it is still nonetheless the case that people with the long business titles will be invited to give talks at conferences as speakers, and those who don’t won’t (and can’t often attend due to the ensuing financial barrier). Often these are not the people who know the day-to-day running of health and social care.

I am basically hoping that the discipline of ‘change’ will now become paralysed through being over-analysed. The discussion of change, I am sure well intentioned, has become so overcharged with terminology and jargon such as ‘boat rockers’ and ‘change catalyst’, so as to be exclusionary, non-accessible and non-inclusive.

There is little which is certain about life other than death and taxes. But I am sure that junior doctors are too overworked to think about their work as being ‘rebels’. Junior doctors do not enjoy being in a hierarchy, but they are. Otherwise, it would be the case they do not need to go on strike to achieve fair terms and conditions for their huge work commitments.

Contrast this to my experience.

I really enjoyed our ‘meet up’ last week in Llandudno, North Wales. In one session, we were sitting on different tables, with a non-contrived mix of people living with dementia, carers, academics, commissioners, and other interested parties. I found that people living with dementia and carers easily found themselves rising to the top of the most valuable contributions, despite all the talk of ‘flattening hierarchies’.

I think the ‘flattening hierarchies’ narrative is misplaced.

I believe that people with dementia and those closest to them ought to be listened first, when it comes to working out whether processes and systems for research and service provision are working.

I think the ‘don’t ask for permission’ meme is inadvertently wrongly positioned.

I think the ‘don’t ask for permission’ meme inadvertently assumes that the wounded party is necessarily already having to ask for permission. I know plenty of people living with dementia who do not need to be told that they are allowed to be leaders. They are not sitting around waiting to be told – otherwise they would be taking on a rôle of submission.

A ‘call to action’ is fine, but not what is fine is the bandwagon effect of people absorbed into a massive groupthink making it harder to make a very small change at a local level. The group think of becoming ‘dementia friendly’ according to one large organisation can easily see wilful blindness to the closure of respite services or provision of a service of clinical specialist nurses locally.

For me, ‘change’ has become a cult. You can spot identical memes on Twitter, and it is getting nauseating. I dread to think what would have happened if Martin Luther King and Mahatma Gandhi had processed mapped their struggles onto a ‘call to action’.

Likewise, people living with dementia and carers beware.

Do you see what I see?

Shibley Rahman 0 Comments

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VR

Over time, I’ve learnt that you can do a lot more harm than good in being critical over other people’s initiatives in dementia. I really do believe it’s essential to be supportive, and to give recognition to other people’s efforts and hard work. The ‘virtual reality centre’ is of course no exception to this for me.

This news article will give you a good introduction to the innovation (as well as the video above).

“Aged care workers can now experience what it feels like to live with dementia at an Australian-first dementia learning centre that uses light, sound, colour, visual content and serious gaming technology to create a virtual reality.

The Perc Walkley Dementia Learning Centre is a key feature of Alzheimer’s Australia Vic’s new facility in Parkville, Melbourne, which was opened by Alzheimer’s Australia National President Ita Buttrose on Wednesday.

The training centre features doughnut shaped mood lighting, a 10 metre by two metre projection wall, an interactive touch screen and gesture-sensor technology.

It allows students to be immersed in the virtual world of someone with dementia and experience the cognitive and perceptual difficulties they might face in their daily life that can make ordinary tasks challenging or dangerous.”

There is much to laud here. How persons living with dementia and carers, very often family members including spouses, deal with risk in the community is of huge interest worldwide. Take for example the brilliant work of the Cognitive Decline Partnership Centre based at Sydney which has this as one of its research goals.

The description of course seems perfectly plausible.

“Aged care workers can now experience what it feels like to live with dementia at an Australian-first dementia learning centre that uses light, sound, colour, visual content and serious gaming technology to create a virtual reality.

The Perc Walkley Dementia Learning Centre is a key feature of Alzheimer’s Australia Vic’s new facility in Parkville, Melbourne, which was opened by Alzheimer’s Australia National President Ita Buttrose on Wednesday.”

But sorry to be the first to rain on this parade but we currently have a very scant knowledge of the perception of objects in dementia.

There’s no doubt that cognitive neurologists have not given due regard to sensory perceptual effects of living with dementia. Agnes Houston and Donna Houston have been educating others about how dementia can affect the senses, in remarkable work which the Life Changes Trust have supported. The feedback from other people living with dementia has shown that many people have experienced sensory phenomena, with the medical profession barely batting an eyelid. Sensory phenomena can indeed be marked phenomena of some young onset dementias, though I am not one to define any person by their medical label. For example, in diffuse lewy Body dementia, sensory hallucinations can be common. In the posterior cortical atrophy, there can be some marked differences in the perception of space. I feel, in common with many others, what we call the posterior cortical atrophy is one common presentation of the dementia of Alzheimer type in an earlier age group (typically 55-60).

But likewise, not everyone living with dementia experiences marked sensory changes early one. It would be very unlikely for somebody with the behavioural variant frontotemporal dementia, known for changes in personality and behaviour, and relatively normal cognition otherwise, to experience marked perceptual changes. In my own Brain paper from 1999, indeed, I found no evidence for sensory disturbances. This would be entirely expected, as this type of dementia affects early on the very front of the brain, very far from the parts of the brain further back which process vision and other senses.

So the sentiments expressed in these paragraphs came somewhat as a surprise to me:

“Aged care workers can now experience what it feels like to live with dementia at an Australian-first dementia learning centre that uses light, sound, colour, visual content and serious gaming technology to create a virtual reality.

The Perc Walkley Dementia Learning Centre is a key feature of Alzheimer’s Australia Vic’s new facility in Parkville, Melbourne, which was opened by Alzheimer’s Australia National President Ita Buttrose on Wednesday.””

The project sits uneasily with the conflation of dementia and ageing. Not everyone with dementia is old, and yet it is an altogether different thing to say someone has visual problems due to cataracts (common causes being age, diabetes and smoking). This can cause fogging of the image and colour changes, as Monet himself noticed. It’s unlikely for somebody just to be living with dementia; for example, somebody might be living with dementia as well as with a previous stroke, and the stroke might cause visual problems of their own such as field defects.

I do not deny the value of public-private partnerships, but I feel I have to raise the scrutiny with which scarce resources for dementia care are allocated into projects such as these with questionable scientific and clinical merit. The initiative raises concerns for me with the due diligence with which other professionals are involved. I feel any reasonable cognitive neurologist would have come to the same conclusions as me. I am more concerned about the ‘engagement’ (suboptimal term) of people actually living with dementia. Sure, it’s not possible to consult all 47 million people living with dementia around the world, but people living with dementia have different ‘faces’, depending on how much a cause of dementia has affected the brain; and there are at least 120 different causes of dementia, medically, depending on how you count them,

So unfortunately this project for me, and freedom of expression is important, raises the grim reality of ‘the wrong type of awareness of dementia’.

But I do agree with the write-up that this is fun, and – ironically – this is the bit of the pitch which has the most scientific validity for me.

“While conventional video games are made to entertain, serious games use traditional gaming technology and techniques to create tools for education or a particular purpose, said Norman Wang, the founder of Opaque MultiMedia, which is developing the virtual dementia experience (VDE).

“Normally people can understand dementia at an intellectual level. We are using immersive virtual reality so people can understand it at a visceral level,” Mr Wang said.”

There’s indeed a lot in ‘gamification‘ to recommend.

The issue here is we are much better at learning stuff if it engages neural circuitry involved in arousal, emotion and motivation (this is simply because it engages different parts of the brain which help to consolidate memories).

And it’s important not to throw the baby out with the bathwater in this case. For any innovation to take off, you need to see what real adoption is like. For all I know, this innovation will be really helpful to carers.

I have noticed that people living with dementia, of whatever background, can have real issues with features in the environment, such as ‘garish’ carpets. This is utterly genuine, and explains the rationale of the global approach of ‘dementia friendly communities’.

This makes sense to me.

““We can create special effects, such as have surfaces that ripple or change colour,” Mr Wang said.”

But above all this innovation does not get round the somewhat philosophical problem of ‘Do you see what I see?’ This problem, often articulated as ‘Will you hear an apple dropping in a forest the same way as me?’, is a very difficult question of philosophy of mind, a favourite of undergraduate finalists in philosophy exams all around the world. We should be very wary of attributing perceptions to people with dementia, in the same way we attribute other functions of the brain, on the one hand. On the other hand, identifying what may be ‘deficits’ in the thinking of others may help us best to retrofit ‘reasonable adjustments’ entirely consistent with the attitude (and legal fact) of dementia as a disability.

The significance of the #juniordoctors dispute is far greater than the #juniorcontract

Shibley Rahman 0 Comments

JH

The main rule of the game is simple. No main political party in the UK will wish to enter a general election stating an intention to privatise the NHS. Jeremy Hunt has even laughed away on many occasions the notion the NHS is being privatised, despite overwhelming evidence to the contrary.

The tragedy about the fact that some doctors want to go to Australia is that this possibly will help the vision of the NHS to be dragged out of the public sector kicking and screaming.

I would be very surprised if Jeremy Hunt wished to negotiate on behalf of the Department of Health about the current contract. The fact that Hunt does not particularly care about resolving the current pay dispute is graphic in his absence in the House of Commons this week to make a statement on the issue.

Love him or loathe him, Jeremy Hunt is in a long line of Secretaries of State for health who has seen (and, indeed, exacerebrated) the unwinding of the National Health Service from proper funding by general taxation in the public sector to private sector beneficiaries. This process is otherwise known as privatisation.

In as much as there are a number of ways to skin a cat (and of course I should never  wish to do due to my love of cats), there are a number of ways to shoo-in the private sector into the running of the NHS.

One might be to have the private sector involved in aspects of procurement. The defence of the privatisation of NHS Logistics by a previous Labour government was magnificently tried by Andy Burnham in front of Iain Dale in one of the LBC election debates. Indeed, that news was at the time, 2006, reported as “Privatisation sparks biggest NHS strike in nearly 20 years”.

This was roughly the same time as the alleged gaffe by the now Lord Warner, also of the Labour brotherhood, presenting a £64bn NHS Privatisation Plan.

Other ways include the private finance initiative, originally worked up under the John Major government at about 1993 but fully torpedoed by the Tony Blair government following his election thereafter. The NHS Trusts saddled with colossal debt are a testament to this legacy, ably continued by subsequent governments.

In ‘balancing the books’, in what is referred to erroneously as ‘lack of sustainability’ (meaning in fact the Government no longer prioritises a well funded NHS and social care), corporate-sympathetic think tanks have largely pointed at the need to cut staff costs to solve the ‘productivity challenge’. The alternative, of course, would be to do something altogether more fundamental: that is, value and invest in staff, and renegotiate the crippling PFI loans. The NHS cannot burn off all bridges of sources of capital for the future.

‘Privatising’ the NHS is unlikely to be achieved in a ‘Tell Sid’ type flotation (initial public offering) in the City. There are no adverts on the telly for you to buy shares in the NHS. Jeremy Hunt and his minions are well aware of that.

But outsourcing the NHS is of course the Trojan Horse par excellence, as Oliver Letwin well knows.

But transferring entities within the NHS comes with its own legal considerations, such as ensuring the employment conditions of outsourced employees do not suffer. TUPE (2006) is the Act of parliament which is supposed to take care of that, harmonised through the corresponding EU directive.

I wouldn’t be at all surprised if Jeremy Hunt simply wants to tear up the current contract, and build from scratch his “privatisation-friendly contract”. NHS employees will want to protect their pensions, derogatively called ‘gold plated pensions’ by others. Current legislation will protect the pension rights of current employees being outsourced to the private sector, but it is possible HM Treasury will want to reduce this pension load by a legal carve out in a new NHS contract.

In other words, even though it would be vehemently opposed by the BMA and Royal Colleges, Jeremy Hunt could somehow impose a brand new contract by effectively making the entire workforce redundant and getting the workforce to apply for new jobs. This would be politically dynamite, as the recent solidarity of the BMA poll confirms, but technically possible if (a) Jeremy Hunt really does not care about his or his government’s popularity (in the face of a possibly weak Corbyn-led opposition), (b) Jeremy Hunt gets ‘reshuffled’ sideways onto something different (no SoS health has ever gone to lead his or her political party, to my knowledge) (c) parliament votes through the legislation for brand new NHS contracts.

Despite all the noise from Baroness Williams recently, the Liberal Democrats were instrumental in voting through the disaster-laden Health and Social Care Bill/Act. A possible and likely interpretation of this is that introducing competition promoted privatised markets consistent with a neoliberal interpretation of the doctrine of free movement of capital.

But why would Jeremy Hunt want to change fundamentally the NHS contract? Jeremy Hunt, following the well rehearsed principles of massive corporate restructuring programmes for ‘large scale transformation’, presumably will argue that the new contract is necessary to implement a 24/7 service. His rationale for that, to promote patient safety, has been consistently been rubbished by specialists in the area. The General Medical Council will of course give a ringing endorsement to any move to promote patient safety, consistent with their statutory duty, but legally must have due regard to whether the NHS is being properly the correct resources to do the new 24/7 job.

See, for example, this clause of the doctors’ code of conduct GMC ‘Duties of a Doctor':

safety

Ironically, the current ‘mood music’ from the NHS “change gurus” is to encourage disruptive change through change platforms, including Facebook, Twitter or even Pinterest, than large scale bulky costly ‘large scale transformations’. This is consistent with international advice from the leading management consultants McKinseys, for example.

As a Doctor, I have complete solidarity with my colleagues in the medical profession, but I feel instinctively the contract is a bit of a decoy for a much wider agenda. Nothing would make me happier than to be proved wrong, of course.

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Redistributing the flour into a few number of bags for less money is #notsafenotfair. The clinical regulator should have this as their prime concern.

 

 

The curate’s egg of dementia

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curate's egg

The ‘curate’s egg’ first appeared as a cartoon in an edition of Punch in November 1895. It refers to somebody being served an egg with some poor but some excellent parts.

The term ‘curate’s egg’ was famously described in relation to the Health and Social Care Bill as it negotiated the machinery of parliamentary procedure by Hamish Meldrum of the British Medical Association.

Invariably, people given a diagnosis of dementia react in a number of different ways to the news. Much of it depends on their pre-conception of what dementia is, but some of it arises from the way in which the details of a possible diagnosis of dementia are disclosed.

I have found people’s knowledge of dementia very variable. In the main, though, I find that most people’s views of dementia are derived from close family members. No one person with dementia is the same, and your perception of that one person might well be different to someone else’s perception.

The reasonable expectation is that, if someone were to tell you that he or she has been diagnosed with dementia, this might be reciprocated with some understanding of what dementia is.

People are also different in the way they wish to express their views about dementia. No one person is the same. That’s why there’s no such thing as a ‘best campaigner’ for dementia.

Here Tommy Dunne explains why he likes Twitter but not Facebook:

I have concerns about the prevention arm of policy. I do not dispute the value in people leading lifestyles to minimise the risk of developing the clinical symptoms and signs of dementia, or to minimise the risk of fast progression of dementia.

But we have to be prepared to concede that there are people around who can’t tick off many of the risk factors for themselves. Iris Murdoch who was highly educated developed dementia: thus disputing the adage, “use it or lose it”.

But the issue that all individual voices offering a complementary narrative is useful.

Keith Oliver wrote an entire article on this.

Keith frames it as ‘going beyond telling a person’s story’, viz:

“Whilst personal stories are really useful, and make significant impressions, if a service user can go beyond that and target the audience in seeking to inspire change, then so much the better. The phrase “expert by experience”, when connected to living well with dementia, and person-centred care, can, with support, produce presentations which are harder hitting and consequently move people to change.”

These observations are all taken from “Dementia Diaries”. To read more about the project, please go here.

The need for discussion with people with whom you profoundly disagree

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We’ve all done it: preaching to the choir, or pushing on an open door.

Turn back the clock, and you can listen to a recording of a radio programme where Reginald Maudling, Enoch Powell, Michael Foot and Roy Jenkins profoundly disagree on policy.

The timeline is this. It is perceived that the next step of defining the English dementia strategy will be the ‘implementation plan’ for Dementia 2020.

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I am told we can probably expect this plan to surface around January 2016.

It’s worth looking at the document ‘Prime Minister’s Challenge on Dementia 2020‘.

Indeed, clinical specialist nurses are mentioned on page 27 in the section on support after diagnosis. This is where my original discussion had in fact started, on a recent blogpost on the need to define what exactly we mean by ‘post diagnostic support’ [blogpost here].

support after diagnosis

I was advised recently that NICE guidelines are of limited value, as CCGs are free to ignore NICE guidelines and other evidence bases for dementia. There is no obligation for CCGs to contain any expertise in dementia, including from dementia specialists including people living with dementia. CCGs are statutory insurance bodies; it is good marketing, however, if GPs happen to be amongst the personnel of CCGs, it’s a “win win”.

I have been to meetings of policy where very senior people, who should remain nameless, say that there’s no point having a plethora of good clinical outcomes unless there is a clear business model for a “cost saving”.

As it happens, numerous reports have emphasised the financial advantage of the Admiral nursing approach. The evaluation of the Norfolk Admiral Nurses programme showed a banquet of cost savings, including on avoidable admissions (p. 31).

savings

Yes indeed as Beth Britton identifies here the central issue is ‘facing dementia and getting support’.

Some of the reasoning is as follows.

  1. The person with dementia must be seen as a unit, with a key friend or member(s) of family. This is the case from the very time the person is given a diagnosis.
  2. The Admiral nurse can advise this unit on the symptoms as they arise.
  3. The Admiral nurse network works in a variety of care settings, e.g. at home, in a residential setting, a hospital; this helps to ensure continuity of care.
  4. The Admiral nurse can, later on, guide the unit through palliative care issues.
  5. The Admiral nurse can make specialist referrals, such as if the medication needs adjustment, or some input is needed on a key aspect of ‘life planning’ (e.g. wills, power of attorney).

Two pivotal events might occur at some stage, for which an Admiral nurse can offer expertise: one when the person with dementia loses the legal ability to make decisions (‘capacity’), or when a person with dementia might choose to go into a residential setting – care home or nursing home.

Caring for people with dementia, as included in marriage vows as well, can be incredibly rewarding. However, caring is the equivalent of a full time job and the system is only kept afloat due to the millions of hours put in per year from unpaid carers (as well as carers, often made, on zero hour contracts and barely meeting the requirements for the national minimum wage). All of this is clinically significant as the wellbeing of the person with dementia is intimately related to the wellbeing of a carer (or ‘BUB’ as per Kate Swaffer‘s nomenclature).

The Admiral nurse can educate the unit, and other professionals, on what dementia is, and how a person with dementia can be best supported to live after the diagnosis.

I am sick of calling for a national dialogue, as national policy after national policy fails to make the argument for good clinical practice.

To be frank, I have become bored of looking for people to blame – apart from the fact that I feel that ‘clinical leaders’ in dementia have failed to lead on this crucial area of policy. I think dementia advisers and dementia support workers are wonderful, but you have to worry as they become overwhelmed in their rôle of signposting to ever dwindling services.

Some players in dementia are too tribal, actually putting their ‘tribal-ity’ ahead of the clinical needs of persons with dementia and carers. This is simply wrong.

I truly want all of this to be ‘in it together’. This means that we work and live together, all, for the benefit of people with dementia and carers. Due to stubborn political obstruction, the momentum for Admiral nurses simply is not there – compared to, for example, Marie Curie and Macmillan nurses – and the resources reflect this.

I sometimes think policy debate is somewhat contrived, and theatrical with everybody playing their expected part. I liken this orchestration to ‘The Truman Show‘.

Well, I have no wish to be a silent bystander to this grave error in policy, from the perspective of two professions. I think this political obstruction is getting in the way of fulfilment of s.1(1) Care Act – the promotion of wellbeing.

But I do think you do need to have discussions with people you profoundly disagree. For example, you might wish to have a discussion with Vladimir Putin over investment in our infrastructure, even if you disagree much with Russia’s human rights record.

Same for Modi.

Same for me and the people in charge of dementia policy.

The late Enoch Powell advises in this radio programme, above, that, only if you understand your opponent’s arguments properly can you understand why you are RIGHT and they are WRONG.

My summary. I think all persons living with dementia, and carers, deserve better.

 

 

 

My survey on rights and dementia

Shibley Rahman 0 Comments

This survey, which I am doing, is on rights and dementia.

This might mean rights you have a person living beyond a diagnosis of dementia (Kate Swaffer’s term) or as a carer.

This survey is not intended to make you feel bad in case you’ve never heard of these legal instruments or rights – simply answer ‘don’t know’. There’s no shame in that.

My view is that rights-based campaigning, which is adopted by the Scottish jurisdiction and increasingly by the English jurisdiction, is pretty rubbish unless people have heard of the rights which protect them.

The instruments referred to in this survey are rights includes ones which are automatically available to us, on the basis of being international instruments.

Thank you for your participation. It only takes a few minutes.