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How do we interpret the significance of living well with dementia?
Strange through it may seem, I have been most influenced in my philosophy of living better with dementia by the late Prof Ronald Dworkin who died in 2013 at the age of 81 (obituary here).
One recent campaign has the tagline ‘Right to know’ from the UK Alzheimer’s Society – about the right for you to know if you have dementia as a diagnosis, a right to treatment, and right to plan for the future.
I feel that people newly diagnosed with dementia have other rights too. I would say that, wouldn’t I. Above all, I feel that people who have received a diagnosis of dementia have a right to live well. This is truly a legal right, as this is not negotiable under the Universal Declaration of Human Rights. Recent case law, in the judgment from Lady Hale in R v Cheshire West and Chester Council (et al), re-emphasises that human rights are inalienable. And given that dementia is a disability under law, the right of that person with dementia is a right to dignity, reinforced by our universal human rights.
Focusing on a right to treatment further consolidates the biomedical model which I think is utterly unjustified. We have just seen the peak of one of the most successful campaigns ever mounted by Pharma and large charities for dementia to raise funds for pharmaceutical approaches to dementia. But at the expense of offering jam tomorrow there was very little on offer for people currently living well with dementia. The answer given to Helga Rohra by the World Dementia Envoy gave little in the way of concrete help for people currently trying to live well with dementia. And the ignorance of this is not benign – for the millions of dollars or pounds sterling spent on molecular biology and orphan drugs for dementia to meet the deadline of 2020, this amount of money is being taken out of the pot for developing the evidence base for and for strategies for living better with dementia in a non-pharmacological way.
Just a minute. Look at the evidence. The medications known as cholinesterase inhibitors are generally thought not to slow down the progression of Alzheimer’s disease in humans, even if they have a short valuable time window of use for symptomatic treatment In the UK, and across the world, there has been a drive for reducing the number of inappropriate prescriptions of antipsychotics for people living with dementia; there is now a growing consensus that where symptoms exist they often are due to a fundamental failure in communication with that person living with dementia, and often other therapeutic routes are much more suitable (such as psychological therapies).
The great FR Leavis, intensely under promoted at Cambridge, reminded us that criticism had to be free and flexible: and hence the famous description of the ideal critical debate as an ongoing process with no final answer: “This is so, isn’t it?” “Yes, but …”
Criticism of the English dementia policy may seem like criticism of senior clinicians, senior personnel in charities or senior politicians, but Leavis gives us a powerful reminder to stand up for what it is right. Surely, people living well with dementia have a right to comprehensive high quality dementia care and support? The evidence in support of multidisciplinary teams, including social work practitioners, speech therapists, doctors, cognitive neuropsychologists, occupational therapists, speech and language therapists, working to produce pro-active plans is now overwhelming. There is now increasing evidence that specialist nursing could prevent many acute admissions to secondary care.
As the late Ronald Dworkin asked us to consider, we might think about what makes an “interpretation” true. As Dworkin notes, psychoanalysts interpret dreams, and lawyers interpret contracts. I would go as far as to say clinicians, of various backgrounds, interpret whether a person presenting with a particular cluster of mainly psychological symptoms is presenting with a dementia. I don’t think the diagnosis of dementia is necessarily easy to make. Given that you’re giving a diagnosis of dementia not just to a person with possible dementia but also to his friends and family it is essential to get right; not to misdiagnose depression as dementia for example. My gut instinct is that doctors of all variety do their utmost to get this diagnosis correct. I think there is also a degree of interpretation in how much a person will successfully adapt to their diagnosis in taking an attitude of ‘living well’, or how they will put their faith in pharmacological treatments. The drugs do work for some people for part of the time after diagnosis, so their importance must not be diminished either. I think there is also a degree of interpretation of how disruptive a diagnosis of dementia might be for that person and his or her community.
Dworkin also notes you would be prone to sack a Judge who said, “I am not sure if this person is guilty or not guilty. I think he’s guilty, but you could probably find great many judges who finds the person not guilty.” It is possible that in the more complicated cases a Doctor might find a person living with dementia, another one not living with dementia. Dementia is presented as a definite diagnosis, a binary decision; but this would be to ignore that even the diagnostic criteria, such as the critical importance of memory (or not), has changed with time. Likewise, there has been a growing conflation of whether you fail a series of tests is the same thing as having a diagnostic label; see for example how some people recorded as having ‘delirium’ in the medical notes have in fact, strictly speaking, failed a specific set of screening tools.
But we can say that there are non-medical routes which are not an idle exercise but are of a person flowing from the diagnosis of probable dementia. This is there is much which can do to enhance the living environment of a person, whether a hospital ward, home or town. Or somebody can be directed towards advocates who can help persons with dementia communicate decisions. Or a person can be directed to inexpensive assistive technologies or lifestyle adjustments that can allow a person to live with dementia just like any other disability. This is framing long term care as living with a condition, rather than the single hit treatment.
Dignity, independence and a vast array of other values will, I feel, are a very necessary outcome of this more helpful approach to dementia. The person who has received a diagnosis of dementia is as much of a need of an acknowledgement of uncertainty as a water-tight explanation. The person who has received a diagnosis of dementia needs to be partnership with the people who wish to share that diagnosis with him or her.
I feel it is now time to unmask the medical professional who may simply be not be able to cope with this cultural shift. The medical profession does not know all the answers, nor indeed do all the people who’ve signed up to the Pharma script.
People who want to live better with dementia can be secure in the knowledge that that is their human right. They have a right to this solution, wherever it comes from.
Reference
Is there truth in interpretation? Prof Ronald Dworkin
GPs “as businessmen”: from ‘Ready Mix Concrete’ to the NHS
This article is not peer-reviewed. You are advised to read this article in bits, according to which parts interest you. If you would like to engage constructively in some of the issues here, I can easily be reached on my twitter thread @legalaware_coys.
“Ready Mix Concrete”
Part of the strategy employed by agents in the media in convincing the general public that a new privatised NHS is not vastly different from the NHS prior to 1 April 2013 has been to emphasise that GPs have “always been businessmen”. GPs are, however, clearly not businessmen in that you don’t see adverts for them on Google or the internet at large. They do not, as yet, spend time advertising in local newspapers or other media, such as local radio. It is a dangerous proposition, however, to suggest that they are businessmen rather than primarily professional clinicians, who are concerned more about how they can minimise spending in their budget, or how they could make a surplus. They are not, as such, directly selling anything to patients.
I asked Dr David Wrigley (@DavidGWrigley) about this media curiosity of ‘GPs as businessmen’. David replied to me as follows,
“Hi Shibley, It comes up all the time. In public debates I have had with MPs and radio/TV interviews it is a question that is always levelled at GPs. Usually it is from those who are keen to promote private sector encroachment onto the NHS. I always say GPs are totally different to the private sector. We work in a community for a whole career and invest in the local people and the practice. We are self employed and make an income from the NHS but we don’t move on when the going gets tough – as the private sector do. The breast PIP scandal shows what the private sector does when the profits dry up – they move on and wash their hands of the patients and leave the NHS to pick up the pieces.I try and keep getting the message across and hope you can help to do so too!”
Looking at the precise legal status of a GP is possibly more productive. Self-employed GPs have been held to be “workers” for the purposes of the Employments Right Act (1996). It had been widely reported that the term that “GP-led companies” is a myth (for example here). The issue is that self-employed GPs are not individually operating as as private limited companies; if they were, they would have shareholders and be obligated as directors to ensure success of the company, and generate a profit consistent with the Companies Act (2006). In the absence even of any formal agreement, they can indeed be a traditional partnership, but a traditional partnership lacks limited liability (link here).
“It seems likely that the medical profession is set for a more federated future and smaller practices in particular may wish to explore opportunities to either merge with other practices or to enter into co-operative or federated arrangements to bring together specialist expertise, share overhead resources and take advantage of economies of scale without totally sacrificing their autonomy. The demands on general practice look set to increase as the trend for care is transferred from hospital to the community. Simultaneously, the increasing commercialisation of the medical profession is likely to inspire more dynamic management structures and possibly greater separation of healthcare provision and management. Opportunities will arise for all natures of practice, but it will be down to each individual practice to harness those which will allow them to reap the greatest benefits for their business and patients. In this environment, investing time to consider the optimum form of legal entity to take forward a practice is crucial and well worth making. “
The trickiest situation currently, in working out the employment status of a GP, is in the GP working under an out-of-hours contract. Such a GP had his claim ‘struck out’ for not being an employee ab initio (link here):
“An out-of-hours general practitioner (GP) who argued that he was victimised for making a public interest disclosure (PID) has had his compensation claim ruled out by the Employment Appeal Tribunal (EAT) on the basis that he was in business on his own account and was neither a worker nor an employee within the meaning of the Employment Rights Act 1996.”
The explanation is very interesting:
“In ruling that his role within the charity did not bring him within the definition of worker or employee under the act, the EAT noted that he also worked for other out-of-hours services, took responsibility for his own tax and national insurance matters and had entered into an agreement with the charity which stated unequivocally that he was self-employed.
The GP contended that he had an overarching contract with the charity and was employed during each separate shift he worked. However, the EAT accepted the charity’s arguments that practitioners on its books were under no obligation to work shifts and that it was not obliged to offer work to any particular GP. Concluding that the GP ‘was in business on his own account’, the EAT ruled that the charity had insufficient control over his work and there was insufficient mutuality of obligation to give rise to an employment relationship.”
“Mutuality of obligations” is all about whether there an obligation on the company to provide work and for the individual to perform work when given it; if this mutuality is not present, an employment relationship will not exist. Traditionally it has been held that if an individual were entitled to send a substitute to perform his duties, this would usually be enough to demonstrate that the contract is not a contract of employment. In “Ready-Mixed Concrete” (case description here), the claimant drove a concrete mixing lorry for the respondent. He had to drive the lorry exclusively for the respondent, he wore the respondent’s uniform and he agreed to submit to all reasonable orders ‘as if he were an employee’. Notwithstanding this, it was held that he was an independent contractor and not an employee. One of the critical features was that he was not required to drive the lorry personally. He could employ a substitute driver to do so. [Note that this lack of personal service would also mean that he would not be held to be a worker under the worker definition.]
The unfortunate description of “GP as businessmen”, arguably encourages the public to consider that they are driven by profit. This is a problem, when you add in three further strands of argument.
- Firstly, that the NHS is able to make £2.4 bn “surplus”, but this is not put in back into frontline care by the Treasury, but is used to ‘balance the books’ for an ever-worsening UK economy.
- Secondly, it has been widely reported that there are GPs on “clinical commissioning groups”, and there are concerns about conflicts-of-interest where the commissioner and commissioned might be one-in-the-same (link here).
- Thirdly, the introduction of CCGs has not made doctors feel more involved in commissioning decisions, a new survey has revealed (link here). Research by Pulse magazine found that out of 303 doctors questioned more than half (55%) said they do not feel any more involved in commissioning services now than they did under PCTs. Only 36% of GPs surveyed said the introduction of CCGs had made them feel more involved in commissioning decisions.
The argument that “GPs have always been businessmen”, mainly advanced by people who are in favour of the “Reforms”, is extremely harmful potentially to the reputation of healthcare professionals, as the General Medical Council’s own code of conduct ‘Duties of a Doctor’ makes it very clear that: “You must make the care of your patient your first concern“. Any suggestion that this priority is displaced threatens to undermine the very heart of the doctor-patient relationship, and this could be very destructive for the new privatised NHS, if left unchallenged.
