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Continuity of care and support is vital in dementia policy. We are a long way from that.
In a way, the second ever English dementia policy poses more of an acid test than the first one. The reason for this is because we already have a set of yardsticks by which the first five years can be assessed, with a view to projecting forewards.
I don’t doubt the enthusiasm with which we have tried to close the ‘diagnosis gap’ in England. The heart of this is the high quality diagnosis, as stipulated in the original policy co-authored by Prof Sube Banerjee at Brighton and Sussex Medical School. What we have tended towards, rather, is a culture of high volume mediocre quality. And people readily admit they would rather wait that little bit longer to get the correct diagnosis.
I do not subscribe to the idea that anyone can easily make a diagnosis of dementia. When a diagnosis of dementia is finally given, it’s given not just to the person with dementia, but to his or her friends, or her family. As Kate Swaffer says, she is not a person with dementia primarily; she is a person with friends, family and feelings.
This approach prioritising the person has to be right from the word go. We are all persons, but we become patients when we become ill enough to present to the health and care services or not. We become paying consumers when we part with money. We are consumers if we spend any resources from the pot of money paid into from national insurance.
And so on. This analysis of money is a sideshow only as far as to how to service is delivered is actually matters. If you have services in dementia and support commissioned in a highly piecemeal manner, at worst from clinical commissioning groups who don’t know what wellbeing is, nor what they’re looking for, it can be a mess.
The hunt is definitely on for effective commissioning as well as any commissioning at all. The next Government will have to provide much better clarity on this, and some objective guidelines on how, say, the delivery of wellbeing might be ensured on an ongoing basis, not just at the start and finish of a commissioning contract.
But it is the fragmented approach from different providers which is a threat. Low pay of carers, not meeting the national minimum wage, or zero hour contracts, is a problem, and the reason specifically why private providers can be an issue here is that large corporates with scrupulous employment practices can hide behind a veil of being unperturbed from freedom of information legislation.
It is very easy to argue that entire health policy, and even dementia policy, is not political. I don’t believe this is justifiable for a minute. How we prioritise care at all is a reflection of our collective solidarity as a society, and our success in ‘pooling risk’. If I know for example I have a high genetic risk of developing a dementia from my genetic make up, my insurance premiums is likely to go through the roof unless there is tight anti-genetic discrimination law in place in England (which there isn’t).
Having a piecemeal system promotes lack of continuity of care. I think this is fatal for any new English dementia strategy. I think this piecemeal system, whether an artefact of private markets or not, or political ideology, can adversely affect people living with dementia and carers in a number of different ways.
First of all, the caregiver relationship, whether paid or unpaid as carer, fundamentally depends on that caregiver knowing the person with dementia. The happiest relatives I have ever spoken to are the ones who report that they haven’t had a regular changing of the guard as regard carers. This is important for building meaningful relationships with time, as people with Alzheimer’s disease for much of their time, even if they have weak memories for events have strong enduring memories for emotions. Besides, change here can be very distressing, and mental distress can impact on lack of physical wellbeing (although ill being is not necessarily the same as lack of wellbeing).
Secondly, continuity of care by a physician or an appropriate specialist in clinical psychology acts as a safeguard to check the actual diagnosis is right. Some initial cognitive impairments do not progress – they remain mild. A ‘wrong diagnosis’ of dementia does not necessarily mean someone has goofed up as such – it could mean that something that was predicted to progress didn’t. The drive to diagnosing dementia, particularly with financial incentives, could mean we accidentally mislabel mild cognitive impairment as dementia, and this is clearly a tragedy for all involved.
Therefore, a diagnosis disclosure can never be a single hit and run event. There needs to be follow up from the system, whether it’s by the same GP, a hospital physician or psychiatrist, a different member of the memory clinic possibly somewhere totally different; a second ‘set of eyes’ to see whether the initial diagnosis is correct. Granted I agree that knowing what the diagnosis is can be the key to opening services, being armed with information and hence empowered, and all the usual arguments, but the diagnosis must be correct. There is no alternative on this.
Say, for example, you are in fact depressed, not living with dementia, and a clinician in a hurry informs you you are living with dementia. You have presented in response to the question, “Do you have problems with your memory?”. Such a misdiagnosis is likely to make you even more depressed; and not receiving effective treatment for depression, whether as a psychological therapy or medication, or otherwise.
Thirdly, somebody who knows a person well will be able to spot when a person with dementia changes in any way. This could be a ‘difference’, such as the development of a sweet tooth, a ‘deterioriation’ such as in memory, or even an ‘enhancement’ as in acquisition of a love of music, or artistic and creative talents. You can only ascertain this with time. This is where the idea of the review has to change fundamentally.
I don’t feel this review should take place in the hands of medics who repeat scans and tests, ask a few random questions, and document the decline (as dementia is progressive if it is not ‘reversible’ such as vitamin deficiency). Implementation of a ‘year of care’ for dementia, or a national network of clinical specialist nurses, will be able to manage a caseload of individuals living well in a pro-active fashion, each with an individualised care plan; where the goal is to live well, not to firefight in a crisis.
Fourthly, the fundamental crunch time for a person living with dementia is an inability to retain information for a decision, an inability to make that decision, and an inability to communicate that decision. The starting point is that we can make decisions or have ‘capacity’. This capacity can come or go; and it’s dangerous if we get into the mindset that capacity is all or nothing, but that is the legal shortcut we have in place.
But this capacity needs review on a regular basis, as it fundamentally changes our view as to whether a person can consent or not. People living with diffuse lewy body dementia, for example, can notice themselves one day they’re performing quite well, other days not so well. If we don’t get into the good practice of reviewing capacity and consent on a regular basis, through continuity of care, we will easily arrive at a situation where people are languishing inappropriately on medications. It’s generally felt that, while appropriate for some, antipsychotics prescribing is too high, often inappropriately; some side effects such as drooling of the mouth can be very distressing. It’s currently, rightly, a plank of policy to address the inappropriate prescription of antipsychotics particularly in care homes.
In summary, the ideal would be somebody to accompany a person from the point of diagnosis to the time of end of life; not chopping and changing. I was told by a senior specialist nurse at the National Hospital for Neurology and Neurosurgery, Katy Judd, that one of the most disturbing phenomena for persons with dementia and families is when their ‘contacts’ have ‘moved on’ on such a frequent basis. There clearly needs to be proper signposting with the system, known as care coordinators, but we need to avoid the situation where there is an abundance of signposts and a dearth of frontline care.
But I feel fundamentally continuity of care and support is critical. Having the same mutual followers on a social network on Twitter has the potential to improve wellbeing, and having somebody there by you that you trust is likely to have the same effect. People living with dementia who are stimulated psychologically by positive experiences are likely to find their experience fundamentally of a different nature to those who don’t.
For these reasons I feel that, whatever tactics are used, and whichever government is in office and/or power in England, for the next few years, an overall strategy of prioritising the continuity of care is pivotal.
Transforming dementia care is long overdue. Specialist clinical nurses in dementia are now vital.
In the G8dementia, particularly by large corporate-like charities, dementia has been compared to the cancers. Whilst there are many problems with this comparison medically, the aim is for research and service expectations to be met in dementia on an equal footing to those for cancer. There are different types of dementia and different types of cancer, and there is, according to NICE, no current treatment for Alzheimer’s disease, the most common type of dementia globally, which slows the progression of disease. The aim however is undeniably a laudable one. In terms of service provision, the hope is that medical conditions can be detected early (and not at the last minute), and over time care and support can be introduced and implemented in a non-panicky way. The low hanging fruit is for providers at the front end of the service to game the NHS QOF/CQUIN system to design ‘innovative’ packages which might diagnose certain forms of dementia, such as the profound short term learning and memory problems in early Alzheimer’s disease. But getting out of this ‘quick fix’ mentality is going to be essential for the long-term sustainability of dementia services in England I feel. I believe strongly that clinical nursing specialists would not just be a big help here: they are indeed vital. England will really benefit from senior people in dementia taking the bull by the horns, in keeping with a refreshing approach to the long term conditions (LTCs) in general, as helpfully described by the King’s Fund in this policy pamphlet from 2010.
But I have now spoken to two very senior specialist clinical nurses in the NHS. One who has been at the heart of policy for nursing in the last few years, and the other one who has been at the heart of one of the top clinical firms in cognitive disorders here in London for a few decades. They both said exactly the same thing to me: “What we’re fed up about is the fast turnover of services and personnel within them. It’s difficult to find the same person twice. And we’ve got too many people signposting services, and not enough people providing frontline care.” There is undoubtedly a rôle for a trained person who can help to navigate a person with dementia and his or her caregivers around a profoundly complicated system. I’ve heard that “dementia advisers” can be brilliant at a local level, but can easily come to the limits of the skills they can sometimes offer. The system is too bitty and disorganised at the moment; and persons with dementia (some of whom who become ‘experts by experience) and caregivers have a key rôle in optimising design of service and revision provision for dementia in the future.
As a person progresses along “a dementia journey”, a term itself which attracts some considerable criticism, his or her own needs will tend to change from living well independently with dementia to benefiting from increasing levels of support, and then increasing levels of care. Two big events could happen along this ‘journey': the loss of decision-making ability (mental capacity), and the preference to move into a residential home of sorts. The timing of these events can be very hard for people with dementia or their caregivers to predict. There can also be worsening problems in communication between people with dementia and those closest to them, including friends and family. If a person living with dementia needs suddenly to enter hospital as a ‘crisis’ at 4 in the morning, he or she might be blue-lighted in with an infected full bladder causing a deterioration in cognition and behaviour, without a care plan in sight.
Diagnosing dementia is clearly not enough, but a timely diagnosis can be helpful. Professional physicians, nurses and other staff will always consider their professional including moral obligations in how likely the diagnosis is, how much a person wants the diagnosis, and how much to investigate a possible diagnosis. And there are too many cases of the possible diagnosis being given in a busy clinic, often summarised as an ‘information pack'; at worst, some people lost to the system for years before anything new happens.
It is likely that England will develop ‘integrated care organisations’. This does not involve building new departments and new buildings, but is a shift in organisational mindset such that GPs with a specialist skill in dementia service provision can work alongside other trained professionals and caregivers, with the person with dementia. This ‘working together’ is nothing new. It has been brilliantly described in the policy work of the Carers’ Trust in their recent documents ‘A triangle of care’ and ‘A road less rocky’. Caregiving can be intensely rewarding, but can also be hard work with caregivers having specific needs of their own. Caregivers will also be at the very heart of any personalised care plans. A professional who might be involved is a speech and language therapist. There is a national shortage of experienced speech and language therapists which is a tragedy as some forms of dementia, for example logopenic primary progressive aphasia, might be characterised by substantial problems in language in the relative absence of problems in domains such as episodic memory.
As a dementia progresses, a clinical psychologist will be in a brilliant position to work out why a person might have practical problems in real life due to identifiable problems in thinking, such as planning. A planning problem might be manifest as a person being able to make a cup of tea, or to organise a planning trip. Or, a clinical psychologist will be able to tell a team that what appeared to be an optician-related matter with eyesight is in fact a higher order perceptual problem as found in the rarer posterior cortical atrophy type of dementia (where memory can be normal early on.) An occupational therapist can use his or her own expertise here. Whichever way you look at it, dementia service provision needs are likely to be met from clinical teams who are an integral part of the ‘dementia friendly community’, who have been somewhat disenfranchised out of the conversation so far compared to high-street customer-facing corporates. Professionals, even in the context of meeting their regulatory obligations, have, I feel, a massive rôle to play in providing personal communities even if they do not assume legal duty of care. It is now known that activities can not only enhance wellbeing, but can also possibly slow the rate of progression (although the evidence base for this finding is not particularly robust yet.)
In the last few years, since the Health and Social Care Act (2012), was introduced, there has been massive turmoil in the National Health Service (NHS), leading at worst to fragmented services resulting from slick pitches from well funded private providers unable to deliver on their contracts. And yet if the NHS were given the correct management and leadership skills, they could be at the heart of providing world class care in dementia. Economies of scale, with free knowledge transfer, can be advantages of large organisations. Given that there are a million people in the next few years living with dementia, the NHS should be planning ahead for this, not just counting the number of new diagnoses as a manifestation of glorified bean-counting. The drive to diagnosis has been a classic example of where the target has become the means to an end in itself.
Earlier this year in July 2014, it was reported that cancer care in the NHS could be privatised for the first time in the health service’s biggest ever outsourcing of services worth over £1.2bn. The four CCGs were involved, which care for 767,000 patients, are also seeking bidders for a separate £535m contract to provide end-of-life care. Whoever wins the cancer contract will then have to “transform the provision of cancer care in Staffordshire and Stoke”. The prime provider will “manage all the services along existing cancer care pathways” for the first two years after which “the provider will assume responsibility for the provision of cancer care, in expectation of streamlining the service model”, according to details posted by the CCGs on the main NHS procurement website.
Macmillan Cancer Support were able to bring clinical nursing specialists (CNS) to the table: the “Macmillan nurses”. This robust model, which had proper financial backing, has proven to work extremely well in the cancer setting (some details are here). A massive contribution of the CNS is widely thought has been thought to be the “proctive case management”, and not only is this is sound clinical sense but could in the long run save the NHS millions, averting emergency hospital admissions which have been pre-empted. The case for proactive case management has also been established in other neurological conditions such as multiple sclerosis. CNS have been described well for the community, but also have a rôle to play in hospitals. Indeed, continuity of care between the community and hospital will be vital, not least because people living with dementia can find unfamiliar people and physical environments extremely distressing. Warrington has seen the introduction of designs which put people living with dementia at ease and the valuing of specialist trained staff. The service provision there is a beacon of success, and shows what can be done if the NHS has a vision and motivation to succeed in this.
CNS could have been a pivotal component of the answer given to Lorely Burt, Liberal Democrat MP for Solihull, this week to the Prime Minister in the weekly PMQs. But it sadly was not.
Clinical nursing specialists, including the well respected “Admiral nurses” from the ‘Dementia UK’ charity, have been recognised as being crucial to developing world class care in dementia too here from our own English nursing strategy. Over 4o00 have signed a petition for more Admiral nurses on the internet. A much under-reported item of research from the Centre for Innovation and Leadership in the Health Sciences at the University of Southampton, established improved clinical outcomes and significant return on investment from CNS in dementia. Again, work in progress suggests that the proactive case management approach has a lot to offer here. A paper from Prof Steve Iliffe and Prof Jill Manthorpe and colleagues is particularly noteworthy here. The beneficial impact of CNS in averting emergency admissions is being well described for cancer by Prof Alison Leary, Chair of Healthcare and Workforce Modelling, and colleagues (see, for example, here). If in the next five-year English dementia strategy there is a strong commitment to flagship clinical integrated services with well established and respected clinical nursing specialist models implemented, this could really revolutionise dementia service provision. And it’s now becoming increasingly that commonalities in what works well, especially in relation to involving caregivers, is working across a number of LTCs. This is a golden opportunity for senior policy specialists in dementia to put the emphasis on sustainable models of care rather than shiny box gimmicks, and to design a system which will be of real benefit to patients with dementia and their closest ones.
