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“What’s in it for me?” The importance of the ‘built environment’ for living well with dementia
Strangely enough, with the focus of drugs, drugs, and yet more drugs, there’s been relatively scant attention for the environment in which a person living with dementia finds himself or herself in.
Improving wellbeing for a person is essentially about understanding the past and present of that person, and building on that person’s beliefs, concerns and expectations about the future. But the idea that you can ignore the environment is simply science-fiction.
The design of care homes maters. The design of hospital wards matter. The design of towns including pavings and signs matters.
Such an approach sounds ambitious and joined up, but not impossible. There’s been a long and proud history in England of understanding the social determinants of health, including housing.
The Attlee Government also extended the powers of local authorities to requisition houses and parts of houses, and made the acquisition of land less difficult than before. In 1949, local authorities were empowered to provide people suffering from poor health with public housing at subsidised rents. That very same year, unemployment, sickness and maternity benefits were exempted from tax.
Recent research suggests that wellbeing in later life is closely related to the physical environment, which is an important mediator of ageing experiences and opportunities. The physical character of the built environments or neighbourhood in particular seems to have a significant impact on the mobility, independence and quality of life of older people living in the local community.
According to a “Greenspace Scotland” report from 2008, “Trust for Nature” is a community-based conservation organisation that focuses on the protection of private land of high conservation value in the state of Victoria, Australia.
In recent research by Inclusive Design for Getting Outdoors (ID’GO), 15% of questionnaire respondents (a large sample, nearing 1000 in sample size) had stumbled or fallen outside within the last 12 months. The real figure is likely to be higher, since past-year falls are often under-reported. Many of the environmental risk factors associated with outdoor falls appear to be preventable through better design and maintenance; factors including pavement quality, dilapidation and kerb height.
Abstract experiential qualities such as perceptions of ‘safety’ and ‘attractiveness’ have been identified as important factors in stated preferences for parks and green spaces and there has been much written over many years on landscape aesthetics and how this might influence preference and use.
By contrast with research on environment and health, arguably this is a domain rich in theoretical concepts for the mechanisms behind engagement with the environment but poor in terms of tools to measure the detailed spatial and structural qualities of different landscapes in relation to how people actually use and experience them. For landscape designers, this is of crucial interest. There have been, historically, attempts to develop guidance based on general principles, but few tools actually to measure the dynamic spatial experience in practice.
A built environment for all ages is conceptualised as one that has been designed so that people can access and enjoy it over the course of their lifetime, regardless of ability or circumstance. Such environments are said to be designed “inclusively”. The I’DGO (Inclusive Design for Getting Outdoors) consortium was launched in 2004 to investigate how outdoor environments affect older people’s wellbeing and to identify what aspects of design help or hinder older people in using the outdoors. Their focus is on identifying the most effective ways of shaping outdoor environments inclusively. They support the needs and preferences of older people and disabled people, always seeking to improve their independence and overall quality of life.
I’DGO was set up to explore the ways in which being able to get out into one’s local neighbourhood impacts on older people’s wellbeing and what barriers there are to achieving this, day-to-day. The project asked the crucial question: why do we need a built environment for all ages? The first phase of research, which finished in 2006, involved over 770 people aged 65 or above. Participants were asked about their wellbeing and quality of life, how often and why they went outdoors and what features of their local neighbourhood helped or hindered their activity. Researchers also physically audited 200 residential neighbourhoods to look for barriers and benefits to getting around as a pedestrian.
The I’DGO research found quickly that older people went outdoors very frequently to socialise, exercise, get fresh air and experience nature. If they lived in a supportive environment – one that made it easy and enjoyable for them to get outdoors – they were more likely to be physically active, healthy and satisfied with life. Walking was by far the most common way that people spent their time outdoors, whether for recreation or transport (‘getting from A to B’). Participants in the I’DGO study who lived within 10 minutes’walk of an open space were twice as likely to achieve the recommended levels of healthy walking (2.5 hours/week) as those whose nearest open space was not local.
A major research goal has been to examine the specific attribute of neighbourhood streets – tactile paving at steps and crossings – and asks how this affects the biomechanics of walking and risk of falling in older people (the project run by the SURFACE Inclusive Design Research Centre and their colleagues in Health, Sport and Rehabilitation Sciences at the University of Salford). The benefits of tactile paving for blind and visually impaired people have been well established yet the system is not without its issues.
Tactile paving is not a policy area without its concerns, and a few in particular emerge from a report by the UK Health and Safety Executive. This report suggested that there is a need better to understand the extent and implications of incorrectly designed and laid tactile paving, and the toe clearance of an individual in negotiating paving ‘blisters’ and potential slip hazards. These factors appear to be crucial to older people, since many of the first phase ID’GO interviewees expressed concerns about falling?or feeling unstable on tactile surfaces and fall-related injuries are associated with loss of independence, morbidity and death in older people.
If we are to understand what qualities of the environment are important to an ability of individuals to ‘live well’, we need perhaps to acknowledge the diversity that exists in people’s capabilities, experience, desires and needs. This overall is a huge challenge for designers; the response conventionally has been to look for factors in the environment that matter to most people, or to a defined group of people, and to address those factors as if they were equally important. Yet for any individual, different qualities and elements in the environment may be a matter of indifference (e.g. certain colours if you are visually impaired) or vitally important (e.g. proximity of an accessible toilet if you have a weak bladder).
Such an approach builds on the concept of “affordance” and the reciprocal relationship between perceiver and environment. The concept of affordance links environment and human behaviour, or opportunities for action, and is therefore of particular interest in understanding how the environment might encourage or support people to be more active—a primary goal of public health policy. This is an insight of key relevance to investigating human behaviour in the landscape. As Appleton has put it, more succinctly, for any individual considering their landscape context, it helps us understand “what’s in it for me?” (Appleton, 1975).
Key text
Appleton, J. (1975) The experience of landscape, New York, NY: John Wiley.
Where is the policy generally heading?
he most ‘perfect’ scenario for dementia screening would be to identify dementia in a group of individuals who have absolutely no symptoms might have subtle changes on their volumetric MRI scans, or might have weird protein fragments in their cerebrospinal fluid through an invasive lumbar culture; and then come up with a reliable way to stop it in its tracks The cost, practicality and science behind this prohibit this approach.
There are well defined criteria for screening, such as the “Wilson Jungner criteria“. Prof Carol Brayne from the University of Cambridge has warned against the perils of backdoor screening of dementia, and the need for evidence-based policy, publicly in an article in the British Medical Journal:
“As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse. Dementia screening should neither be recommended nor routinely implemented unless and until there is robust evidence to support it. The UK can play a unique role in providing the evidence base to inform the ageing world in this area, whilst making a positive difference to the lives of individuals and their families in the future.”
However, a problem has arisen in how aggressively to find new cases of dementia in primary care, and a lack of acknowledgement by some that incentivising dementia diagnosis might possibly have an untoward effect of misdiagnosing (and indeed mislabelling) some individuals, who do not have dementia, with dementia. Unfortunately there are market forces at work here, but the primary consideration must be the professional judgment of clinicians.
Diagnosing dementia
There is no single test for dementia.
A diagnosis of dementia can only be confirmed post mortem, but there are ‘tests’ in vivo which can be strongly indicative of a specific dementia diagnosis (such as brain biopsy for Variant Creutzfeld-Jacob disease or cerebral vasculitis), or specific genetic mutations on a blood test (such as for relatively rare forms of the dementia of the Alzheimer type).
Memory vs non-memory functions in CANTAB
CANTABmobile is a new touchscreen test for identifying memory impairment, being described as a ‘rapid memory test’. The hope is that memory deficits might be spotted quickly in persons attending the National Health Service, and this is indeed a worthy cause potentially. In the rush to try to diagnose dementia quickly (and I have explained above the problem with the term “diagnose dementia”), it is easy to conflate dementia and memory problems. However, I demonstrated myself in a paper in Brain in 1999 using one of the CANTAB tests that patients with behavioural variant frontotemporal dementia (bvFTD) were selectively impaired on tests sensitive to prefrontal lobe function involving cognitive flexibility and decision-making. I demonstrated further in a paper in the European Journal of Neuroscience in 2003 that such bvFTD patients were unimpaired on the CANTAB paired associates learning test.
bvFTD is significant as it is a prevalent form of dementia in individuals below the age of 60. The description given by Prof John Hodges in the current Oxford Textbook of Medicine chapter on dementia is here. Indeed, this chapter cites my Brain paper:
“Patients present with insidiously progressive changes in personality and behaviour that refl ect the early locus of pathology in orbital and medial parts of the frontal lobes. There is often impaired judgement, an indifference to domestic and professional responsibilities, and a lack of initiation and apathy. Social skills deteriorate and there can be socially inappropriate behaviour, fatuousness, jocularity, abnormal sexual behaviour with disinhibition, or theft. Many patients are restless with an obsessive–compulsive and ritualized pattern of behaviour, such as pacing or hoarding. Emotional labiality and mood swings are seen, but other psychiatric phenomena such as delusions and hallucinations are rare. Patients become rigid and stereotyped in their daily routines and food choices. A change in food preference towards sweet foods is very characteristic. Of importance is the fact that simple bedside cognitive screening tests such as the Mini-Mental State Examination (MMSE) are insensitive at detecting frontal abnormalities. More detailed neuropsychological tests of frontal function (such as the Wisconsin Card Sorting Test or the Stroop Test) usually show abnormalities. Speech output can be reduced with a tendency to echolalia (repeating the examiner’s last phrase). Memory is relatively spared in the earl stages, although it does deteriorate as the disease advances. Visuospatial function remains remarkably unaffected. Primary motor and sensory functions remain normal. Primitive refl exes such as snout, pout, and grasp develop during the disease process. Muscle fasciculations or wasting, particularly affecting the bulbar musculature, can develop in the FTD subtype associated with MND.”
Memory tests, mild cognitive impairment and dementia of Alzheimer type
Nobody can deny the undeniable benefits of a prompt diagnosis, when correct, of dementia, but the notion that not all memory deficits mean dementia is a formidable one. Besides, this tweeted by Prof Clare Gerada, Chair of the Royal College of General Practitioners, to me this morning I feel is definitely true,
A political drive, almost in total parallel led by the current UK and US governments, to screen older people for minor memory changes could potentially be leading to unnecessary investigation and potentially harmful treatment for what is arguably an inevitable consequence of ageing. There are no drugs that prevent the progression of dementia according to human studies, or are effective in patients with mild cognitive impairment, raising concerns that once patients are labelled with mild cognitive deficits as a “pre-disease” for dementia, they may try untested therapies and run the risk of adverse effects.
The idea itself of the MCI as a “pre-disease” in the dementia of Alzheimer type is itself erroneous, if one actually bothers to look at the published neuroscientific evidence. A mild cognitive impairment (“MCI”) is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).It is claimed that on the CANTABmobile website that:
However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: only approximately 5-10% and most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).
An equally important question is also the specificity and sensitivity of the CANTABmobile PAL test. Quite a long explanation is given on their webpage again:
However, the reference that is given is unrelated to the data presented above. What should have appeared there was a peer-reviewed paper analysing sensitivity and sensitivity of the test, across a number of relevant patient groups, such as ageing ‘normal’ volunteers, patients with geriatric depression, MCI, DAT, and so on. A reference instead is given to a paper in JAMA which does not even mention CANTAB or CANTABmobile.
NICE, QOF and indicator NM72
A description of QOF is on the NICE website:
“Introduced in 2004 as part of the General Medical Services Contract, the QOF is a voluntary incentive scheme for GP practices in the UK, rewarding them for how well they care for patients.
The QOF contains groups of indicators, against which practices score points according to their level of achievement. NICE’s role focuses on the clinical and public health domains in the QOF, which include a number of areas such as coronary heart disease and hypertension.
The QOF gives an indication of the overall achievement of a practice through a points system. Practices aim to deliver high quality care across a range of areas, for which they score points. Put simply, the higher the score, the higher the financial reward for the practice. The final payment is adjusted to take account of the practice list size and prevalence. The results are published annually.”
According to guidance on the NM72 indicator from NICE dated August 2013, this indicator (“NM72″) comprises the percentage of patients with dementia (diagnosed on or after 1 April 2014) with a record of FBC, calcium, glucose, renal and liver function, thyroid function tests, serum vitamin B12 and folate levels recorded up to 12 months before entering on to the register The timeframe for this indicator has been amended to be consistent with a new dementia indicator NM65 (attendance at a memory assessment service).
Strictly speaking then QOF is not about screening as it is for patients with a known diagnosis of dementia. If this battery of tests were done on people with a subclinical amnestic syndrome as a precursor to a full-blown dementia syndrome with an amnestic component, it might conceivably be ‘screening’ depending on how robust the actual diagnosis of the dementia of those individuals participating actually is. As with all these policy moves, it is very easy to have unintended consequences and mission creep.
According to this document,
“There is no universal consensus on the appropriate diagnostic tests to be undertaken in people with suspected dementia. However, a review of 14 guidelines and consensus statements found considerable similarity in recommendations (Beck et al. 2000). The main reason for undertaking investigations in a person with suspected dementia is to exclude a potentially reversible or modifying cause for the dementia and to help exclude other diagnoses (such as delirium). Reversible or modifying causes include metabolic and endocrine abnormalities (for example, vitamin B12 and folate deficiency, hypothyroidism, diabetes and disorders of calcium metabolism).
The NICE clnical guideline on dementia (NICE clinical guideline 42) states that a basic dementia screen should be performed at the time of presentation, usually within primary care. It should include:
- routine haematology
- biochemistry tests (including electrolytes, calcium, glucose, and renal and liver function)
- thyroid function tests
- serum vitamin B12 and folate levels.”
It is vehemently denied that primary care is ‘screening’ for dementia, but here is a QOF indicator which explicitly tries to identify reversible causes of dementia in those with possible dementia.
There are clearly issues of valid consent for the individual presenting in primary care.
Prof Clare Gerada has previously warned to the effect that it is crucial that QOF does not “overplay its hand”, for example:
“QOF is risking driving out caring and compassion from our consultations. We need to control it before it gets more out of control – need concerted effort by GPC and RCGP.”
Conclusion
Never has it been more important than to heed Prof Brayne’s words:
“As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse.”
In recent years, many glib statements, often made by non-experts in dementia, have been made regarding the cognitive neuroscience of dementia, and these are distorting the public health debate on dementia to its detriment. An issue has been, sadly, a consideration of what people (other than individual patients themselves) have had to gain from the clinical diagnosis of dementia. At the moment, some politicians are considering how they can ‘carve up’ primary care, and some people even want it to act as a referral source for private screening businesses. The “NHS MOT” would be feasible way of the State drumming up business for private enterprises, even if the evidence for mass screening is not robust. The direction of travel indicates that politicians wish to have more ‘private market entrants’ in primary care, so how GPs handle their QOF databases could have implications for the use of ‘Big Data’ tomorrow.
With headlines such as this from as recently as 18 August 2013,
this is definitely ‘one to watch’.
Further references
Beck C, Cody M, Souder E et al. (2000) Dementia diagnostic guidelines: methodologies, results, and implementation costs. Journal of the American Geriatrics Society 48: 1195–203
Mitchell, A.J., and Shiri-Feshki, M. (2009) Rate of progression of mild cognitive impairment to dementia -meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand, 119(4), pp. 252-65.
Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.
National Institute for Health and Clinical Excellence (2006) Dementia. Supporting people with dementia and their carers in health and social care. NICE clinical guideline 42
Many thanks to @val_hudson for a useful critical comment about an earlier version of this blogpost.
Andy Burnham's "whole person care" has a huge academic and practitioner literature, and demands discussion
“Whole-Person Care” was at the heart of the proposal at the heart of Labour’s health and care policy review, formally launched this week, and presents a formidable task: a new “Burnham Challenge”? It may not be immediately obvious to people outside of the field, but whole books and a plethora of academic papers have been written on it. I agree its consideration is very timely, given the special set of challenges which the NHS faces, and it is yet another failure of the national media that this speech has not been discussed at all by the national media. Whatever your particular political or philosophical inclination, it does demand proper scrutiny.
It is described as follows:
“Whole-Person Care is a vision for a truly integrated service not just battling disease and infirmity but able to aspire to give all people a complete state of physical, mental and social well-being. A people-centred service which starts with people’s lives, their hopes and dreams, and builds out from there, strengthening and extending the NHS in the 21st century not whittling it away.”
Andy Burnham did not mention the Conservatives once in his speech yesterday for the King’s Fund, the leading think-tank for evidence-based healthcare policy. He did not even produce any unsolicited attacks on the private sector, but this entirely consistent with a “One Nation” philosophy. Burnham was opening Labour’s health and care policy review, set to continue with the work led by Liz Kendall and Diane Abbott. He promised his starting point was “from first principles”, and “whatever your political views, it’s a big moment. However, he faces an enormous task in formulating a coherent strategy acknowledging opportunities and threats in the future, particularly since he suffers from lack of uncertainty about the decisions on which his health team will form their decisions: the so-called “bounded rationality”. The future of the NHS is as defining a moment as a potential referendum on Europe, and yet the former did not attract attention from the mainstream media.
Burnham clearly does not have the energy for the NHS to undergo yet another ‘top down reorganisation’, when the current one is estimated as costing £3bn and causing much upheaval. He indeed advanced an elegant argument that he would be seeking an organisational cultural change itself, which is of course possible with existant structures. This lack of cultural change, many believe, will be the primary source of failure of the present reorganisation. He was clear that competition and the markets were not a solution.
Burnham identifies the societal need to pay for social care as an overriding interest of policy. This comes back to the funding discussion initiated by Andrew Dilnot prior to this reorganisation which had been kicked into the ‘long grass’. Many younger adults do not understand how elderly social care is funded, and the debate about whether this could be a compulsory national insurance scheme or a voluntary system is a practical one. It has been well rehearsed by many other jurisdictions, differing in politics, average income and competence of state provision. The arguments about whether a voluntary system would distort the market adversely through moral hazard and loss aversion are equally well rehearsed. Whilst “the ageing population” is not the sole reason for the increasing funding demands of all types of medical care, it is indeed appropriate that Burnham’s team should confront this issue head-on.
It is impossible to escape the impact of health inequalities in determining a society’s need for resources in any type of health care. Burnham unsurprisingly therefore suggested primary health and preventative medicine being at the heart of the new strategy, and of course there is nothing particularly new in that, having been implemented by Ken Clarke in “The Health of the Nation” in the 1980s Conservative government. General medical physicians including General Practitioners already routinely generate a “problem” list where they view the patient as a “whole”; much of their patient care is indeed concerned with preventive measures (such as cholesterol management in coronary artery disease). A patient with rheumatoid disease might have physical problems due to arthritis, emotional problems related to the condition or medication, or social care problems impeding independent living. Or a person may have a plethora of different physical medical, mental health or social needs. The current problem is that training and delivery of physical medical, mental health or social care is delivered in operational silos, reflecting the distinct training routes of all disciplines. As before, the cultural change management challenge for Burnham’s team is formidable. Also, if Burnham is indeed serious about “one budget”, integrating the budgets will be an incredible ambitious challenge, particularly if the emphasis is person-centred preventive spending as well as patient-centred problem solving spending. When you then consider this may require potential aligment of national and private insurance systems, it gets even more complicated.
The policy proposed by Burnham interestingly shifts emphasis from Foundation Trusts back to DGHs which had been facing a challenge to their existence. Burnham offers a vision for DGHs in coordinating the needs of persons in the community. Health and Well-Being Boards could come to the fore, with CCGs supporting them with technical advice. A less clear role for the CCGs as the statutory insurance schemes could markedly slow down the working up of the NHS for a wholesale privatisation in future, and this is very noteworthy. Burnham clearly has the imperfect competition between AQPs in his sights. Burnham is clearly also concerned about a fragmented service which might be delivered by the current reforms, as has been previously demonstrated in private utilities and railways which offer disproportionate shareholder value compared to end-user value as a result of monopolistic-type competition.
The analysis offered by Andy Burnham and the Shadow Health team is a reasonable one, which is proposed ‘in the national interest’. It indeed draws on many threads in domestic and global healthcare circles. Like the debate over EU membership, it offers potentially “motherhood” and “apple pie” in that few can disagree with the overall goals of the policy, but the hard decisions about how it will be implemented will be tough. Along the way, it will be useful to analyse critical near-gospel suggestions that competition improves quality in healthcare markets, if these turn out to be “bunkum”. Should there be a national compulsory insurance for social care? How can a near-monopolistic market in AQPs be prevented? Nonetheless, it is an approach which is well respected in academic and practitioner circles, and is potentially a very clever solution for the NHS, whatever your political inclination, for our time.
'Whole-Person Care' A One Nation approach to health and care for the 21st Century
Andy Burnham’s speech to The King’s Fund – ‘Whole-Person Care’ A One Nation approach to health and care for the 21st Century
Andy Burnham MP, Labour’s Shadow Health Secretary, said on 24 January 2013 at the King’s Fund:
Today I open Labour’s health and care policy review.
For the first time in 20 years, our Party has the chance to rethink its health and care policy from first principles.
Whatever your political views, it’s a big moment.
It presents the chance to change the terms of the health and care debate.
That is what One Nation Labour is setting out to do.
For too long, it has been trapped on narrow ground, in technical debates about regulation, commissioning, competition.
It is struggling to come up with credible answers to the questions that the 21st century is asking with ever greater urgency.
I want to change the debate by opening up new possibilities and posing new questions of my own, starting with people and families and what they want from a 21st century health and care service.
For now, they are just that – questions. This is a Green Paper moment – the start of a conversation not the end.
But what you will hear today is the first articulation of a coherent and genuine alternative to the current Government’s direction.
It is the product both of careful reflection on Labour’s time in government and a response to what has happened since.
Everything I say today is based on two unshakable assumptions.
First, that the health and care we want will need to be delivered in a tighter fiscal climate for the foreseeable future, so we have to think even more fundamentally about getting better results for people and families from what we already have.
Second, our fragile NHS has no capacity for further top-down reorganisation, having been ground down by the current round. I know that any changes must be delivered through the organisations and structures we inherit in 2015.
But that can’t mean planning for no change.
Those questions that the 21st century is bringing demand an answer.
When the modern condition means we are all living with higher levels of stress, change and insecurity, how do we give families the mental health support they will need and remove the stigma?
How will we ensure we are not overwhelmed by the costs of treating diseases linked to lifestyle and diet?
And how can we stop people fearing old age and have true peace of mind throughout a longer life?
Huge questions that require scale and a sense of ambition in our answers.
When a Labour Opposition last undertook this exercise, the world looked very different. But it had to be similarly ambitious.
People were waiting months and years for hospital treatment, even dying on NHS waiting lists.
So Labour set itself the mission of rescuing a beleaguered NHS which was starting to look as if it was on the way out.
A big ambition and, by and large, with help of the professions, we succeeded.
We left office with waiting lists at an all-time low and patient satisfaction at an all-time high; a major turn-around from the NHS we inherited in 1997.
But that doesn’t tell the whole story.
I can trace the moment that made me think differently, and challenge an approach that was too focused on hospitals.
In early 2007, my sister-in-law was in the Royal Marsden dying from breast cancer.
After visiting one night, she called me over and asked if I could get her home to be with her four children.
I told her I thought I would be able to.
But, after a day of phone calls, I will never forget having to going back to Claire and say it couldn’t be done.
And I was a Minister who knew how the system worked, so what chance have families who are at a low ebb and don’t know where to start?
As a Government, we were talking about choice. But it was a painful discovery for me to find we were unable to deliver to this most fundamental of choices.
Concerns about the way we care for people in the later stages of life, as well as how it is paid for, has built and built over recent years.
Stories of older people neglected or abused in care homes, isolated in their own homes or lost in acute hospitals – disorientated and dehydrated – recurred with ever greater frequency.
I have thought long and hard about why this is happening.
It is in part explained by regulatory failures and we will of course learn the lessons emerging from the Francis Report as part of this policy review.
Changes in nursing and professional practice may also have played a part.
But, in my view, these explanations deal with the symptoms rather than the cause of a problem that goes much deeper.
My penny-drop moment came last year when I was work-shadowing a ward sister at the Royal Derby.
It was not long after the Prime Minister had proposed hourly bed rounds for nurses.
I asked her what she thought of that. Her answer made an impression on me.
It was not that nurses didn’t care any more, she said. On the whole, they did.
It was more that the wards today are simply not staffed to deal with the complexity of what the ageing society is bringing to them.
When she qualified, it was rare to see someone in their 80s on the ward after a major operation.
Now there are ever greater numbers of very frail people in their 80s and 90s, with intensive physical, mental and social care needs.
Hospitals hadn’t changed to reflect this new reality, she said, and nurses were struggling to cope with it.
They were still operating on a 20th century production-line model, with a tendency to see the immediate problem – the broken hip, the stroke – but not the whole-person behind it.
They are geared up to meet physical needs, but not to provide the mental or social care that we will all need in the later stages of life.
So our hospitals, designed for the last century, are in danger of being overwhelmed by the demographic challenges of this century.
And that is the crux of our problem.
To understand its roots, it helps to go back to the 1948 World Health Organisation definition of health:
“a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”
A simple vision which stands today.
But, for all its strengths, the NHS was not set up to achieve it. It went two thirds of the way, although mental health was not given proper priority, but the third, social, was left out altogether.
The trouble is that last bit is the preventative part.
Helping people with daily living, staying active and independent, delays the day they need more expensive physical and mental support.
But deep in the DNA of the NHS is the notion that the home, the place where so much happens to affect health, is not its responsibility.
It doesn’t pay for grab rails or walk-in showers, even if it is accepted that they can keep people safer and healthy.
The exclusion of the social side of care from the NHS settlement explains why it has never been able to break out of a ‘treatment service’ mentality and truly embrace prevention. It is a medical model; patient-centred, not person-centred.
But, in reality, it’s even worse than that.
For 65 years, England has tried to meet one person’s needs not through two but three services: physical, through the mainstream NHS; mental, through a detached system on the fringes of the NHS; and social, through a means-tested and charged-for council service, that varies greatly from one area to the next.
One person. Three care services.
For most of the 20th century, we just about managed to make it work for most people.
When people had chronic or terminal illness at a younger age, they could still cope with daily living even towards the end of life. Families lived closer to each other and, with a bit of council support, could cope.
Now, in the century of the ageing society, the gaps between our three services are getting dangerous.
The 21st century is asking questions of our 20th century health and care system that, in its current position, will never be able to answer to the public’s satisfaction.
As we live longer, people’s needs become a complex blur of the physical, mental and social.
It is just not possible to disaggregate them and meet them through our three separate services.
But that’s what we’re still trying to do.
So, wherever people are in this disjointed system, some or all of one person’s needs will be left unmet.
In the acute hospital ward, social and mental needs can be neglected. This explains why older people often go downhill quickly on admission to hospital.
In mental health care settings, people can have their physical health overlooked, in part explaining why those with serious mental health problems die 15 years younger than the rest of the population.
And, in places, such is the low standard of social care provision in both the home and care homes, barely any needs are properly met.
What, realistically, can be achieved from a home care service based around ten-minute slots per person?
On a practical level, families are looking for things from the current system that it just isn’t able to provide.
They desperately want co-ordination of care – a single point of contact for all of mum or dad’s needs – but it’s unlikely to be on offer in a three-service world.
So people continue to face the frustration of telling the same story over again to all of the different council and NHS professionals who come through the door.
Carers get ground down by the battle to get support, spending days on the phone being passed from pillar to post.
So far, I have spoken about the experience of older people and their carers.
But the problems I describe – the lack of a whole-person approach – holds equally true for the start of life and adults with disabilities.
Parents of children with severe disabilities will recognise the pattern – the battle for support, the lack of co-ordination and a single point of contact.
CAMHS support at the right time can make all the difference to a young life but is often not there when it is needed.
Children on the autistic spectrum are frequently missed altogether.
The mantra is that early intervention makes all the difference. But it is rarely a reality in a system that doesn’t have prevention at its heart.
If we leave things as they are, carers of young and old will continue to feel the frustration of dealing with services which don’t provide what they really need, that don’t see the whole-person.
They won’t provide the quality people want.
But nor will they be financially sustainable in this century.
For One Nation Labour, this is crucial. Protecting the institutions that bind us together, like the NHS – the expression of what we can achieve together when everyone plays their part.
Right now, the incentives are working in the wrong direction.
For older people, the gravitational pull is towards hospital and care home.
For the want of spending a few hundred pounds in the home, we seem to be happy to pick up hospital bills for thousands.
We are paying for failure on a grand scale, allowing people to fail at home and drift into expensive hospital beds and from there into expensive care homes.
The trouble is no-one has the incentive to invest in prevention.
Councils face different pressures and priorities than the NHS, with significant cuts in funding and an overriding incentive to keep council tax low.
So care services have been whittled away, in the knowledge that the NHS will always provide a safety net for people who can’t cope. And, of course, this could be said to suit hospitals as they get paid for each person who comes through the door.
In their defence, councils and the NHS may be following the institutional logic of the systems they are in.
But it’s financial madness, as well as being bad for people.
Hospital Chief Executives tell me that, on any given day, around 30 to 40 per cent of beds are occupied by older people who, if better provision was available, would not need to be there.
If we leave things as they are, our DGHs will be like warehouses of older people – lined up on the wards because we failed to do something better for them.
But it gets worse. Once they are there, they go downhill for lack of whole-person support and end up on a fast-track to care homes – costing them and us even more.
We could get much better results for people, and much more for the £104bn we spend on the NHS and the £15bn on social care, but only if we turn this system on its head.
We need incentives in the right place – keeping people at home and out of hospitals.
We must take away the debates between different parts of the public sector, where the NHS won’t invest if councils reap the benefit and vice versa, that are utterly meaningless to the public.
So the question I am today putting at the heart of Labour’s policy review is this: is it time for the full integration of health and social care?
One budget, one service co-ordinating all of one person’s needs: physical, mental and social. Whole-Person Care.
A service that starts with what people want – to stay comfortable at home – and is built around them.
When you start to think of a one-budget, one-service world, all kinds of new possibilities open up.
If the NHS was commissioned to provide Whole-Person Care in all settings – physical, mental, social from home to hospital – a decisive shift can be made towards prevention.
A year-of-care approach to funding, for instance, would finally put the financial incentives where they need to be.
NHS hospitals would be paid more for keeping people comfortable at home rather than admitting them.
That would be true human progress in the century of the ageing society.
Commissioning acute trusts in this way could change the terms of the debate about hospitals at a stroke.
Rather than feeling under constant siege, it could create positive conditions for the District General Hospital to evolve over time into a fundamentally different entity: an integrated care provider from home to hospital.
In Torbay, where the NHS and Council have already gone some way down this path, around 200 beds have been taken out from the local hospital without any great argument as families have other things they truly value.
Unlike other parts of England, they have one point of contact for the co-ordination of health and care needs.
Occupational Therapists visit homes the same day or the day after they are requested; urgent aids and adaptations supplied in minutes not days.
If an older person has to go into hospital, a care worker provides support on the ward and ensures the right package of care is in place to help get them back home as soon as possible.
Imagine what a step forward it would be if we could introduce these three things across England.
For the increasing numbers of people who are filled with dread at the thought of mum or dad going into hospital, social care support on the ward would provide instant reassurance.
It is a clear illustration of what becomes possible in a one-service, one-budget world with prevention at its heart.
If local hospitals are to grow into integrated providers of Whole-Person Care, then it will make sense to continue to separate general care from specialist care, and continue to centralise the latter.
So hospitals will need to change and we shouldn’t fear that.
But, with the change I propose, we can also put that whole debate on a much better footing.
If people accept changes to some parts of the local hospital, it becomes more possible to protect the parts that they truly value – specifically local general acute and emergency provision.
The model I am proposing could create a firmer financial base under acute hospitals trusts where they can sustain a back-stop, local A&E service as part of a more streamlined, re-modelled, efficient local healthcare system.
So A&Es need not close for purely or predominantly financial reasons, although a compelling clinical case for change must always be heard and we would never make the mistake of a blanket moratorium.
I am clear that we will never make the most of our £120 billion health and care budget unless hospitals have positive reasons to grow into the community, and we break down the divide between primary and secondary care.
It could see GPs working differently, as we can see in Torbay, leading teams of others professionals – physios, Occupational Therapists, district nurses – managing the care of the at-risk older population.
Nerves about hospital take-over start to disappear in a one-budget world where the financial incentives work in the opposite direction.
NHS hospitals need the security to embrace change and that change will happen more quickly in an NHS Preferred Provider world rather than an Any Qualified Provider world, where every change is an open tender.
I don’t shy away from saying this.
I believe passionately in the public NHS and what it represents.
I think a majority of the public share this sentiment.
They are uncomfortable with mixing medicine with the money motive. They support what the NHS represents – people before profits – as memorably celebrated by Danny Boyle at the opening ceremony of the Olympic Games.
Over time, allowing the advance of a market with no limits will undermine the core, emergency, public provision that people hold dear.
So I challenge those who say that the continued advance of competition and the market into the NHS is the answer to the challenges of this century.
The evidence simply doesn’t support it – financially or on quality grounds.
If we look around the world, market-based health systems cost more per person not less than the NHS. The planned nature of our system, under attack from the current Government’s reforms, is its most precious strength in facing a century when demand will ratchet up.
Rather than allowing the NHS model to be gradually eroded, we should be protecting it and extending it as the most efficient way of meeting this century’s pressures.
The AQP approach will not deliver what people want either.
Families are demanding integration. Markets deliver fragmentation.
The logical conclusion of the open-tender approach is to bring an ever-increasing number of providers on to the pitch, dealing with ever smaller elements of a person’s care, without an overall co-ordinating force.
If we look to the US, the best providers are working on that highly integrated basis, co-ordinating physical, mental and social care from home to hospital.
We have got to take the best of that approach and universalise it here.
But there are dangers of monopolistic or unresponsive providers.
Even if the NHS is co-ordinating all care, it is essential that people are able to choose other providers. And within a managed system there must always be a role for the private and voluntary sectors and the innovation they bring.
But let me say something that the last Labour Government didn’t make clear: choice is not the same thing as competition.
The system I am describing will only work if it is based around what people and families want, giving them full control.
To make that a reality, we want to empower patients to have more control over their care, such as dialysis treatment in the home or the choice to die at home or in a hospice.
We will work towards extending patients’ rights to treatment in the NHS Constitution.
This would mean the system would have to change to provide what people want, rather than vice versa.
The best advert for the people-centred system in Torbay is that more people there die at home than in any other part of England.
When I visited, they explained that they had never set out to do that – a target had not been set – but it had been a natural consequence of a system built around people. A real lesson there for politicians.
So an NHS providing all care – physical, mental and social – would be held to account by powerful patient rights.
But, as part of our consultation, we will be asking whether it follows that local government could take a prominent role working in partnership with CCGs on commissioning with a single budget.
This change would allow a much more ambitious approach to commissioning than we have previously managed.
At the moment, we are commissioning health services. This was the case with PCTs and will remain so with CCGs.
The challenges of the 21st century are such that we need to make a shift to commissioning for good population health, making the link with housing, planning, employment, leisure and education.
This approach to commissioning, particularly in the early years, begins to make a reality of the Marmot vision, where all the determinants of health are in play. Improving PH will not be a fringe pursuit for councils but central to everything that they do.
But it also solves a problem that is becoming increasingly urgent.
Councils are warning that, within a decade, they will be overwhelmed by the costs of care if nothing changes.
They point to a chart – affectionately known as the ‘graph of doom’ – which shows there will be little money for libraries, parks and leisure centres by 2020.
One of the great strengths of the one-budget, Whole-Person approach would be to break this downward spiral.
It would give local government a positive future and local communities a real say.
The challenge becomes not how to patch two conflicting worlds together but how to make the most of a single budget.
To address fears that health money will be siphoned off into other, unrelated areas, reassurance is provided by a much more clearly defined national entitlement, based around a strengthened NICE, able to take a broader view of all local public spending when making its recommendations.
It won’t be the job of people at local level to decide what should be provided. That will be set out in a new entitlement. But it will be their job to decide how it should be provided.
That would provide clarity about the respective roles of national and local government, too often a source of confusion and tension.
But I want to be clear: nothing I have said today requires a top-down structural re-organisation.
In the same way that Andrew Lansley should have refocused PCTs and put doctors in charge, I will simply re-focus the organisations I inherit to deliver this vision of Whole-Person Care.
Health and Well-Being Boards could come to the fore, with CCGs supporting them with technical advice.
While we retain the organisations, we will repeal the Health and Social Care Act 2012 and the rules of the market.
It is a confused, sub-optimal piece of legislation not worthy of the NHS and which fails to give the clarity respective bodies need about their role.
This approach creates the conditions for the evolutionary change towards the Whole-Person vision rather than structural upheaval.
At a stroke, those two crucial local institutions – council and hospital – have an alignment of interests and a clear future role to grow into.
But the same is true for social care.
At present, it is trapped in a failing financial model.
The great attraction of the Whole-Person approach, with the NHS taking responsibility for coordination, is that it will be in a position to raise the standards and horizons of social care, lifting it out of today’s cut-price, minimum wage business.
Social care careers would be more valued and young people able to progress as part of an integrated Whole-Person workforce.
Of course, the change we aspire to, particularly in social care, won’t come by simply changing structures. It will need a change of culture including leadership, training, working in teams, better information and seeing patients and families as partners in achieving better health and care.
So Whole-Person Care is the proposal at the heart of Labour’s health and care policy review which is formally launched today.
It will be led by Liz Kendall, and will run alongside Diane Abbott’s separate Public Health Policy Review. Over the next six months, we will be holding events in all parts of England seeking views on two central questions.
First, do you see merit in this vision of Whole-Person Care and support the proposals for the full integration of health and social care?
Second, if you do, how far down this path of integration do you think we should go?
The fact is that, even if we move to a fully integrated model, and shift resources from hospital to home, it won’t be enough to pay for all of one person’s care needs.
We need to be very clear about that.
So this opens up the question of the funding of social care.
It is the case that, with the shift of resources out of hospital, more preventative social care could be provided in the home and, in all likelihood, better standards of social care offered, as we have seen in Torbay.
For instance, we have already proposed that this should include people on the end-of-life register. It would also include provision for those with the highest needs and at risk from going into hospital.
But rather than leave this unspecified, people need to know exactly where they stand. Currently, council care provision is the ultimate lottery.
In a single system, it would be right to set for the first time a clear entitlement to what social care could be provided and on what terms, as part of a national entitlement to health and care.
That would help people understand what is not covered – which is very unclear to people at present.
But the question arises: what is the fairest way of helping people cover the rest?
At present, beyond the £23,000 floor, care charges are unlimited.
These are ‘dementia taxes’: the more vulnerable you are, the more you pay.
As cruel as pre-NHS or US healthcare.
No other part of our welfare state works in this way and, in the century of the ageing society, failure to resolve how we pay for care could undermine the NHS, the contributory principle and incentives to save.
Some people might ask why they should save for retirement, when the chances of it all being washed away increase every year?
In this century, we can’t carry on letting people go into old age with everything – home, savings, pension – on the roulette table.
So there is a political consensus that the status quo is the worst of all possible worlds and it needs to change.
We agree about the need to find a fairer way of paying for social care, but not on what that system should be.
The Government have begun to set out their version of Andrew Dilnot’s proposals.
A cap, not of £35,000 but over the £50,000 Dilnot recommended, and possibly up to £75,000.
This is better than the status quo.
But we all know that setting a cap of up to £150,000 for a couple is not a fair solution.
For Labour, it fails a basic One Nation test.
Offering some protection to the better off, but doing little to help a couple in an average semi in the Midlands or the North.
But it also fails a sustainability test.
By failing to address the shortfall in council budgets, it leaves people exposed to ever-increasing care charges and more likely to pay up to the level of the cap.
This won’t feel like progress to many.
So, as part of Labour’s policy consultation, we will ask for views on other ways of paying for social care.
We will only have a solution when all people, regardless of their savings and the severity of their needs, have the chance to protect what they have worked for.
There are two basic choices – a voluntary or all-in approach – and, at this stage, we are seeking views on which path people think we should take, building on the foundations of a fully merged health and social care system.
Both would represent a significant improvement on the status quo, but both present significant difficulties in terms of implementation.
Andrew Dilnot’s proposed cap and means-test would help everyone protect their savings.
It would mean people only pay as much as they need to, but, in the worst case scenario, could stand to lose a significant chunk of their savings.
If people support this option, we would be interested in hearing views on how it could be funded.
One of the problems with the voluntary approach is it assumes the continuation of two care worlds – one charged for, the other one free-at-the-point-of-use – with all its complexity.
So it is right to ask whether we can move to an all-in system, extend the NHS principle to all care.
This would mean asking people to pay differently for social care to create a level playing field on how all care is provided.
But it would only work on the all-in principle and that is its major downside: all people would be required to contribute, rather than just those needing care.
People’s exposure to care costs in an all-in system would be significantly lower. But, as with any insurance system, people might pay and never end up using the service.
As with the voluntary option we would be interested in hearing people views on the pros and cons of the all-in principle and options for how this could be done.
It is an open question whether a broad consensus can be found on funding social care on either a voluntary or all-in principle.
But Labour is clear that this must not stand in the way of progress now to get much more for people from what we currently spend on health and care.
To Beveridge’s five giants of the 20th century, the 21st is rapidly adding a sixth: fear of old age.
If we do nothing, that fear will only grow as we hear more and more stories of older people failed by a system that is simply not geared up to meet their needs.
A One Nation approach to health and care means giving all people freedom from this fear, all families peace of mind.
Whole-Person Care is a vision for a truly integrated service not just battling disease and infirmity but able to aspire to give all people a complete state of physical, mental and social well-being.
A people-centred service which starts with people’s lives, their hopes and dreams, and builds out from there, strengthening and extending the NHS in the 21st century not whittling it away.
A service which affords everyone’s parents the dignity and respect we would want for our own.
There will be many questions which arise from what I have said today.
I don’t yet have all the answers.
But that’s why Labour is opening this discussion now.
It’s an open invitation to anyone who has anxieties about what is happening to the NHS right now to help us build a genuine alternative – integrated, collaborative, accountable.
I don’t want to do the usual politician thing of pulling a policy out of the hat at the time of the next manifesto that takes people by surprise.
Instead, I want to involve as many people as I can in shaping an alternative they can believe in.
The task is urgent because the NHS is on the same fast-track to fragmentation that social care has been down.
The further it carries on down this path, the harder it will be to glue it back together.
Unlike the last Election, the next one needs to give people a proper choice of what kind of health and care system they want in the 21st century.
That’s why I started by saying it’s time to change the terms of the debate and put more ambition into our ideas.
Labour is rediscovering its roots and its ability to think in the boldest terms about a society that cares for everyone and leaves no-one behind.
People need One Nation Labour to be as brave in this Century as Bevan was in the last.
That’s the challenge and we will rise to it.
LibDems have failed to notice their cookie jar is empty
Somebody’s been at the Coalition Cookie-Jar again, and the LibDems have failed to notice – yet again.
The Tory-led government was proposing to scrap primary care trusts and give councils responsibility for public health and joint working between NHS and other services.
Health Secretary Andrew Lansley’s white paper also set out plans for local GP consortiums to take on the PCT role of commissioning hospital treatments. As expected, strategic health authorities will also be abolished.
Lansley reiterated the Department of Health’s target of £20bn savings by 2013/14. According to this article, he said abolishing PCTs would save £1bn, helping to slash NHS management costs by 45%. All the measures in the white paper, Equity and excellence: liberating the NHS, will affect health services in England only.
Why do the Liberal Democrats seem impotent in pointing out obvious discrepancies? This is what the Coalition Agreement said:
- We will ensure that there is a stronger voice for patients locally through directly elected individuals on the boards of their local primary care trust (PCT). The remainder of the PCT’s board will be appointed by the relevant local authority or authorities, and the Chief Executive and principal officers will be appointed by the Secretary of State on the advice of the new independent NHS board. This will ensure the right balance between locally accountable individuals and technical expertise.
- The local PCT will act as a champion for patients and commission those residual services that are best undertaken at a wider level, rather than directly by GPs. It will also take responsibility for improving public health for people in their area, working closely with the local authority and other local organisations.
It’s therefore an odd situation where the Coalition had been wishing to extend the powers of the PCT. Now, it seems that they do not wish to preserve this for the sake of deficit reduction. Anecdotal reports suggest that Croydon is phasing out its PCT. What is really happening? Speaks for itself really.
David Cameron is wrong on the NHS corporate restructuring for these reasons
In an interview where David Cameron tried to tell John Humhrys he was wrong, Humphrys identified that Cameron was showing no leadership on the bankers.
The interview can be heard here:
http://news.bbc.co.uk/today/hi/today/newsid_9363000/9363655.stm
David Cameron is wrong about the NHS restructuring for the following:
It is wrong simply to focus on outcomes at the treatment end; much more could and should be done at the diagnosis end (health policy analysts find outcomes useful, but what they’re actually measuring are objective benefits). Much of the fundamental issue for the next decade will be the early diagnosis of the disease especially cancer, and there needs to be some focus on the efficacy of screening methods at the other end too (e.g.for colon cancer, breast cancer, COPD).
It is no good just talking about length of survival times, because there has to be a proper analysis of the quality-of-life and well being of patients with chronic morbidity including dementia.
The Doctors were not asking for the changes – the BMA is opposed to it, and to my knowledge the Royal College of Physicians shows little interest in it in a very positive direction. The King’s Fund certainly think it is a calamity.
2-3 years is a very short time to produce ‘the biggest reorganisation’ in the first time; it will involve £1.4 bn in the first year. John Humphrys was right to correct the figures that Cameron produced on the basis of actual evidence from the Kings Fund.
Satisfaction is at an all time high now with the NHS – this cannot be divorced from the record spending by Labour in the last parliament.
David Cameron denied the NHS IS getting better. This must means that he thinks that all aspects of it are getting worse. THIS IS A LIE.
John Humphrys asked that the NHS was in fact changing to a Federal Health Service. Cameron saying that there are already regional variations is frankly irrelevant. Humphrys is correct saying that an analogy between GPs and free schools is an extremely poor analogy; I am shocked that David Cameron is idiotic enough even to suggest it.
There’s no point Cameron trade-union bashing, as there are many ordinary nurses, doctors and other health-professionals who are non-Labour members who are highly critical of his insane policy.
If Andrew Lansley is so well respected, why does the whole of RCN disagree with him? The man is not well respected amongst the health professionals.
Dr Shibley Rahman Queen’s Scholar; BA (1st Class), MA, Bachelor of Medicine, Bachelor of Surgery, Doctor of Philosophy, Diploma of the Membership of the Royal College of Physicians (MRCP(UK)); FRSA, LLB(Hons).
Member of the Fabian Society.
