Of all the issues facing society, there is possibly not one medical issue which affects more systems in the body more? Alcohol misuse or abuse is a risk factor for various pathologies of the gut (e.g. liver cirrhosis, pancreatic cancer), for the mind and brain (e.g. alcoholic dementia, depression), the nerves (e.g. peripheral neuropathy), and it can exacerbate skin conditions (e.g. porphyria cutanea carda). It is also a massive societal issue as the work of Prof David Nutt on harm has shown. Alcohol abuse is also a risk factor for disability, as referred to in this description on the WHO website:
The harmful use of alcohol is a global problem which compromises both individual and social development.
It results in 2.5 million deaths each year. Alcohol is the world’s third largest risk factor for premature mortality, disability and loss of health; it is the leading risk factor in the Western Pacific and the Americas and the second largest in Europe. Alcohol is associated with many serious social and developmental issues, including violence, child neglect and abuse, and absenteeism in the workplace. It also causes harm far beyond the physical and psychological health of the drinker. It harms the well-being and health of people around the drinker. An intoxicated person can harm others or put them at risk of traffic accidents or violent behaviour, or negatively affect co-workers, relatives, friends or strangers. Thus, the impact of the harmful use of alcohol reaches deep into society.
In many ways, the various effects of alcohol on the health and social care service is an interesting policy consideration to seeing how ‘whole person care’ might work in future for the NHS. The problems with the ‘health maintance organisation’ and an approach driven by privatisation are well known across the pond, for other multi-system conditions such as diabetes and rheumatoid disease. If a future health system is ‘fit for the future’, it will need to overcome these problems, and “whole person care” possibly could not have come at a more helpful time for policy here in England and Wales.
Much heat has gone into the ‘pressures’ facing the NHS, with the limelight having been hogged by Sir David Nicholson and his ‘efficiency challenges’ and the “the funding gap”. While such discussions, mainly centred around the ageing society and the increased costs of privatisation can become rather repetitive and definitely tiring, the NHS is arguably facing its most challenging period since it was created in 1948. While much of the focus has been on the government’s reforms in England, there are a host of other factors that make the coming years crucial. Demands on the national service, ideally comprehensive and universal and free at the point of need, are rising, as are costs. The McKinsey analysis unhelpfully does not factor in all the sources of income of a national economy; it seems almost to assume that appreciable growth will not be an issue for the UK economy, and there is an absolute veto on voters wishing to fund a NHS adequately. This of course is a fault of the analysis of the current government, but “living within our means” has been a worthy factor of all political parties here in England and Wales. One of the great success stories of the past century has been the almost continuous rise in life expectancy. Since the NHS was set up life spans have increased by a dozen years for both men and women – and this trend is predicted to continue. This also means that people with medical conditions are living longer, and it possibly has been striking how disability and ageing have become ‘medicalised’ in recent years in policy strands driven by non-medics.
A massively tiring slogan has been ‘the need to think differently’, misused by some to justify ‘cutbacks’ in the name of ‘sustainability’. Liam Byrne and Jenny Macklin recently wrote a very powerful article on how best to empower disabled citizens ‘to fulfil their potential’. There is undoubtedly a need for “assessments that work”, but it is a simple fact at the moment, hundreds of thousands of the assessments are wrong. Years are wasted in court, where eventually 40% of appeals around employment and support assessments are won, and some disabled citizens have experienced huge mental distress and anguish (thus indirectly adding to the ‘demands’ on the NHS). Like the bedroom tax, the ideological onslaught perceived by disabled citizens, as per the “bedroom tax” (or more correctly described as “the spare room subsidy”), it is a “false economy”. As Bryne and Macklin describe, “it is a monumental waste of money – £74m, according to evidence provided to the public accounts committee by Disability Rights UK. We spend £900m on Atos. We’re about to spend £540m on Atos and Capita.”
In their very helpful article, they further describe:
It’s time to end the labyrinth. We’ll be looking at how we take the radical ideas of “whole person care”, developed by Andy Burnham, to bring services and benefits together to support disabled people in a new way. And we’re delighted that in Britain, Sir Bert Massie, a great pioneer of disability rights, will be working alongside us to make sure ideas are co produced with disabled people every step of the way. Labour will be publishing a green paper on the idea next summer. It’ll be far stronger for the advice from down under.
According to a news report from Australia, on 3 July 2013, Minister for Ageing and Disability Services Andrew Constance released the “Living Life My Way Framework” which will guide the expansion of opportunities for people to exercise choice and control over their supports as NSW transitions to the National Disability Insurance Scheme (NDIS). People with disability currently receiving disability services who are interested in moving into an individualised funding arrangement in a policy strand mirroring the drive towards personal health budgets I have recently discussed elsewhere. The framework is based on the findings from the extensive Living Life My Way consultations held across NSW during 2011 and 2012. The NSW Government is committed to a service system that increases choice and control for people with disability. For this reason, NSW became the first Australian state to agree to a fully funded NDIS in which we’ll contribute $3.1 billion a year from 2018/19, with the Commonwealth to invest $3.3 billion. As in Australia, here in England and Wales a common cause of disability is stroke, and therefore thinking about how all the services ‘link up’ with each other is going to be essential. For many needs of a patient who has suffered a stroke, there may be care needs, such as speech and language, physiotherapy, social care and dietary, which may not be in the direct specialist knowledge and experience of the hospital physician (or General Practitioner).
Dementia and disability will be considerable policy planks in the NHS in the forthcoming decades, and of course they impact on other important policy considerations for England and Wales such as frailty. In Chapter 7, “Bringing the person back” by Richard Massie in “Together: A vision for whole person care for a 21st century health and care service“, a policy discussion document for the Fabian Society published earlier this year, Massie writes as follows:
“A third of people using care services are working- age disabled adults, and in many areas they take up half of the local budget. With whole person care, Labour could be on the cusp of creating a care system fit for disabled people in the 21st century. But only if some big questions are answered, not least how a health system free at the point of access can be merged with a care system so dependent on eligibility and assessment.
Disabled people across the country were smiling to themselves as Andy Burnham took the stage and spoke of his vision for ‘whole person care’. Smiling because his vision was strong, positive and put disabled people at the heart of health and social care reform. But also because they know how difficult it will be to turn this sentiment into practice.
Burnham’s vision is of active people in control of their health and support, collaborating with the state to achieve better outcomes. Seeing people in the round and increas- ing choice and control are core tenets of the disability and independent living movements. Needing to manage a health condition like MS or diabetes, needing support to wash because you lack manual dexterity, or needing specialist support to communicate with people in your community because you are deafblind should not be limiting, but be the cornerstone of independence. Providing good care and support can enable people to take part in family life, get involved in their local community and go to work.”
You’d be forgiven for thinking that the reform of health and social care was only about our ageing society, so fre- quently are debates only framed as a crisis facing older people. It’s true that there are examples of older people being shockingly treated in our NHS, left undignified in care homes and kept in hospital too long because support isn’t available in their community. Their care crisis rightly needs to be a national priority, but so does the care crisis facing disabled adults. The care crisis is as real for them as older people, and cases like the neglect and abuse of patients by staff at Winterbourne View need to be a wake-up call to decision makers on the need to focus on disability too.
A third of people using care services are working-age disabled adults, and in many areas they take up half of the local budget. Furthermore, the number of disabled adults needing care and support is increasing. In 2010/2011, 1.1 million disabled people relied on the social care system, but by 2020 we anticipate that the number of people in need of care will have risen to 1.3 million. Traditionally this group may not be regarded with as much electoral attraction as the ‘grey vote’, but social care reform that does not have the needs of disabled people at its heart is sure to fail.”
There have been endless discussions about what “integrated care” might mean, further to simply “joined up” or “more co-ordinated care”. A minority still remain convinced that “integrated care”, and in particular individualised personal health budgets is the ‘Trojan horse’ for privatisation of the NHS, akin to the shared care hospital models which are currently active in the US. However, thinking about the needs of two groups of society, people with dementia and people with disability, presents a formidable challenge for how a caring society can look after an individual and perhaps recognise the beliefs, concerns and expectations of that individual. It also poses fundamental questions of what our NHS is there to do. It has long been argued that the emphasis of the NHS should be wrenched away politically and economically from the NHS Foundation Trusts for more shared clinical decision-making in the community. Individuals with dementia or disability do not particularly wish themselves to be considered as a ‘burden on society’, however that debate is framed by society. They do not wish to be seen as ‘ill’ either, although some individuals will succumb to illnesses, on account of their dementia or disability. This is all about a society which is inclusive, and may be in keeping with Labour’s “One Nation” more than people might currently realise.
