Thinking the unthinkable. A grand coalition of Dementia UK and the Alzheimer’s Society?

In a crowded space, the Alzheimer’s Society and Dementia UK, two large dementia charities, effectively ‘compete’ as dementia charities. However, in the last few years, funding for the Alzheimer’s Society for initiatives such as ‘Dementia Friends’, costing millions, as a public-not profit partnership has helped to skew this space, such that the Alzheimer’s Society has commanded a relative advantage.

There has been criticism that the clinical nursing specialist approach of the ‘Admiral nurses’ is not an appropriate business model, but it is also true that specialist nursing has been repeatedly marginalised in policy documents in the last few years. It is however generally acknowledged that, despite a widely acknowledged problem in English policy in bridging the ‘diagnosis gap’ of undiagnosed people living with dementia, social care and post-diagnostic support for dementia has been on its knees due to savage cuts in social care spending.

The clinical advantages of proactive case management of clinical nursing specialists have been widely rehearsed elsewhere. That is, despite a need for raising ‘awareness’ from people who are relatively underskilled themselves in dementia, there needs to be input from trained and skilled people in dementia. That the workforce in the NHS and care need to be skilled is widely accepted. As the demands for the acute medical services are likely to remain at fever pitch, it is a priority to keep admissions of people living with more advancing dementia, particularly those also living at frailty, at a minimum as such patients, particularly if unaccompanied by a caregiver, can do particularly badly in an acute admission due to the distress caused by an unfamiliar environment (amongst various reasons).

Politically, we are in a weird territory. It is felt that the most likely outcome of the UK general election to be held on May 7th 2015 will be a hung parliament, particularly if Scotland decides en masse to reject the Labour Party, and to vote for the Socialist National Party in majority. This has led to a former Tory chairman to argue, most recently, that a coalition pact between the Conservatives and Labour after the election may be the only way to keep the UK together if the Scottish Nationalist Party holds the balance of power at Westminster. There was formerly a grand Coalition during the Second World War.

That the Alzheimer’s Society and Dementia UK do different things in itself should not worry people in society at large, but the lack of plurality in this hugely important sector of dementia should. An overly dominant provider in any sector can lead to a dominant position where success begets success, and ‘Dementia Friends’ could be the shoo-horn in for services provided by the Alzheimer’s Society, even if this approach is vigorously denied or officially unintended by the Alzheimer’s Society. Whenever the media refer to dementia these days, it invariably is in the context of the Alzheimer’s Society not Dementia UK, and the Alzheimer’s Society, not Dementia UK, form the Secretariat of the All Party Parliamentary Group in dementia.

Charities could get 10-year contracts to help deliver NHS services if Labour wins the general election, according to Andy Burnham MP, Shadow Secretary of State for Health, to an audience of voluntary sector leaders. Not-for-profit care organisations would be given “a form of preferred provider” status under legislation that a Labour government would introduce to replace parts of the coalition’s 2012 Health and Social Care Act (2012). The move would recognise their contribution to strengthening communities, and form part of the legislative agenda of a new Labour government, if elected. This appears to be intended by Labour give voluntary sector providers “longer and more stable arrangements” than for-profit contractors, but will concern NHS campaigners as further evidence of public sector resources being transferred to non-public recipients.

Addressing the health and social care conference of Acevo, the voluntary sector chief executives’ group, Andy Burnham is reported to have said: “The voluntary sector should have a different status in law when it comes to contracting, in terms of length of contract and the way contracts can be renewed without open tender.”

There is a growing recognition that all those involved in dementia care need a greater level of expertise in managing general health problems. Several cardiovascular disorders have been suggested as risk factors for dementia, such as hypertension, hypercholesterolemia, atrial fibrillation and heart failure; it is generally felt that correct management of these conditions can slow down cognitive decline, reduce the risk for dementia, and a clear focus has to be in future on the interplay of medications for such conditions.

Co-morbid conditions can overlap with each other during the management of treatment, further mandating a case for clinical nursing specialists in “proactive case management”. Patients and caregivers can experience difficulties with the therapies prescribed for each co-morbid condition, reducing adherence to the treatment plan and consequently diminishing its efficacy.

Innovative commissioning, through the “prime contractor” model encouraging plural stakeholders including the third sector, could have a constructive role here in meeting wellbeing outcomes for the National Health Service, which will be critical in the delivery of “whole person care”. (For an overview of the primary contractor model see the Department of Health (2013) document entitled “The NHS Standard Contract: a guide for clinical commissioners“.) There is also a coherent economic case for such proactive case management in the drive to avoid certain acute hospital admissions for people with dementia.

In Staffordshire, the plan currently is for four clinical commissioning groups (CCGs), NHS England and Public Health England are working with Macmillan Cancer Support, and with the support of two local authorities, to redesign cancer and end-of-life care services. They are in the process of co-designing new care pathways with patients and carers.

Under such an arrangement, care is to be managed and contracted through a single provider, which will be held accountable for the entire patient experience and clinical outcomes. Involvement of service users and carers is central in determining the outcomes for this contract. The “prime provider contracts” will replace around 70 separate sub-contracting arrangements. Providers will need to demonstrate they have achieved a pre-agreed set of quality measures within a given expenditure target.

Contracts will be for ten years. In the first two years, the CCGs and Macmillan will support the selected prime providers to improve the currently available data on activity and costs. It is very difficult to deny that the impact of Macmillan specialist nurses has been a beneficial one, and has revolutionised post diagnostic service support and care for the cancers.

Aa key element of the prime provider’s work in the first two years will be to improve the data and analytics in order to provide a basis for a truly outcomes-based contract. They will also be expected to demonstrate real improvement in patient and carer experience.

Patient safety and patient experience are pivotal for the NHS Outcomes Framework. The aim of the NHS is not only to add years to life, but to add life to years. One could argue that the roles of raising awareness and ‘advising’ are important but complementary to highly specialist nursing support. Such specialist nursing support could work in tandem with specialist social practitioner input, as it is acknowledged that liberty and safeguarding issues are especially important for some patients in later stages of dementia in whatever care setting.

A grand coalition of more than provider, such as the Alzheimer’s Society or Dementia UK, and in social care, may be “unthinkable”, but perhaps has to be put on the agenda, especially if serious moves afoot to deliver whole person care are to become a reality. They would need to have meticulous governance arrangements in place. As a comparison, while ‘Manc dev’ arguably gives some financial stability and some breathing space for innovative integration of health and care to flourish, there is an apt concern that the proper mechanisms are not in place if anything goes wrong.

For dementia post-diagnostic support to ‘crash’ due to improper governance of funds would indeed be the unthinkable.

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.

dementia sufferers

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.