Redesigning Health and Social Care

A few weeks ago, it was announced that from 2013, all new nurses will need a university degree.  There followed a gasp of horror from many pundits who predicted disastrous consequences for the quality of care.  The cartoon on the cover of The Week conveyed many fears– a prim nurse, little nose in the air and officiously ignoring her patients was presented with the caption “too clever to care.” Degree educated nurses will be less willing to do basic tasks and therefore care will suffer.  A hole where care should be will be created in the ward.

There is much to debate about the role of nurses and the structure of their education (for example, how much of it will continue to be practice-based?).  But what also needs to be recognised is the way in which the health care assistants who do provide much care, are rendered invisible and presented as inadequate in such debates even though they are often trained and highly experienced.  The health care assistants’ role and abilities must be part of the debate on care rather than presented as a hole in the ward.

Today there is speculation that the government’s guidance on salt intake has been set too high. Last week there was confusing informaton on calorie intake. The week before that there was the fall out amongst the government’s advisors on the danger of various legal and illegal substances.

Bearing this in mind, can anyone be held responsible for an ‘unhealthy’ lifestyle when there is a myriad of such confusing advice and guidance? And how can resources be allocated to support those who develop conditions as a result of misleading guidance (if indeed, it is misleading)? When will come the day when someone is refused some kind of treatment and argues that they have only been living within all these varying guidelines? Will all this quantification of what constitutes a ‘good’ lifestyle and what falls outside of that create a two tier system of access to support? Should we scrap all this lifestyle guidance altogether or will it help to stave off problems in the future?

Today we have learned that the government plans to introduce a Bill that will ensure free personal care at home for a number of older people and disabled adults. Crucially, this will not be means-tested, but instead offers the prospect of care based solely on an individual’s assessed needs, regardless of income. It is undoubtedly good news for those people who want to access care services at home. It is likely to reduce the numbers who feel pressurised into residential care and subsequently lose their savings – and often their homes – as a result. For years the sector has campaigned to get social care higher up the political agenda. And here we are, with personal care tipped as Gordon Brown’s flagship domestic policy for 2010. Not only that, he must view social care as a potential vote winner, with a general election just round the corner.

But I’m confused. The government has only just finished consulting on its Green Paper on the future of adult social care, which sets out a plan of action far more complex than what is presented in the Queen’s Speech. Andy Burnham, Health Secretary, has commented that the new bill would be an ‘interim measure’ – something to help people out whilst the final decisions are taken on the ‘National Care Service’ of the future.  But in a system that already baffles most who come into contact with it, does the government’s decision not just add another layer of complexity that will ultimately make it all the more difficult to initiate full-scale reform? It could be enough to make some of us a little cynical about the whole consultation process surrounding the Green Paper. Political expediency over the sector’s views? Now there’s a thought!

I also wonder what this bill says about the nature of residential care. Current policy discourse tends to promote the idea of ‘independent living’ as meaning staying in your own home. This is what is ‘normal’; this is apparently what we all want for ourselves. But for some, staying at home can become a lonely existence in older age. So whilst acknowledging what is good about this bill, let’s not forget that we should also be striving to ensure that people receive quality care in residential and nursing homes too.  And this must also be central to debates about adult social care funding.

 On Wednesday a petition was presented at Downing Street containing the signatures of key figures including Jo Brand, Stephen Fry and Tracy Emin, calling on the government, NHS and medical research institutions for mental health to be a research priority. Whilst 1 in 4 of us will be affected in some way by mental health issues, it currently receives just 5% of the budget for health research.

This is in part down to the stigma attached to mental health yet, the petition organisers point out, it has profound costs not only for those individuals affected, but for wider society and the economy as a whole – to a tune of £100 billion a year according to yesterday morning’s Today Programme on Radio 4.

Radio 4 were clearly interested in this petition, and the Today programme devoted some considerable time to it. Tom Feilden, the Science Correspondent, was very interested in the emphasis that was being made on the link between mental health and physical disease. Those who suffer from mental health issues are likely to suffer more adversely and recover more slowly from a range of physical problems, including migraine, heart disease, diabetes and asthma. But also the root of many physiological diseases lies in mental health.

So whilst lung cancer is caused by bodily responses to environmental toxins introduced to the lungs in the form of cigarette smoke, the addiction to smoking in the first place lies in the brain – both in the neurological make up of that brain, but also fundamentally in terms of the psychological basis of why that person is smoking in the first place and the circumstances which mean they fail to give up.

The whole thing seemed to quite excite the Radio 4 team, and I am very pleased about that. As an individual whose life has been touched by mental health issues in more ways than one, I can only praise any efforts to raise awareness and increase funding for research, treatment and ultimately prevention.

What surprised me however was that they were presenting this as a brand new and groundbreaking idea, whilst as a social scientist I know a lot of this research is already going on. It is being funded not by medical research councils, but as part of the work of sociologists, geographers and other social scientists.

For years we have been saying that physical illness is as much about the emotional and psychological environments people find themselves in, as it is about the biological processes that go on in the cells of the body to manifest disease.

There is already a basis of knowledge and understanding which could be drawn upon to complement the very valuable ‘medical research’ that this group are petitioning for. A starting point might be Tony Gatrell’s and Susan Elliott’s ‘Geographies of Health’, or Alison Williams’ ‘Therapeutic Landscapes’. Or there are a host of shorter articles focused on more specific contexts of how the mind is linked with physical health experiences and outcomes (try my staff page for a few!).

A lot of this existing research and understanding feeds into the new Open University course we are designing ‘Adult Health, Social Care and Wellbeing’ – which this blog is a part of.

So keep reading and keep yourself at the forefront of exciting and innovative thinking about health and wellbeing in context!

Part of my personal approach to good physical and mental health is to go for a brisk walk in the early morning before sitting down at my desk. This morning there was the first frost of the season and there were noticeably more leaves on the ground. Perhaps because of the particular atmospheric conditions of a cold still morning I was very aware of the air quality which felt good as I walked alongside a local sports field. However, as I walked on there was a pall of smoke from an enormous bonfire in someone’s garden and then traffic fumes from the long line of stationary cars in the city street I had to cross to get home. Having had occasional bouts of asthma in the past I was starting to feel uneasy and was relieved to get back indoors! What had started well ended up being rather disappointing.

This brings home to me how interconnected we all are. Whatever lifestyle choices I make for my own health and wellbeing my individual actions can only go so far when other people’s lifestyle’s impact on my own. Similarly, but less immediately visible I’m sure that the standard of living I have come to expect as an inhabitant of a relatively prosperous country has a significant impact on the populations of poorer countries who supply us with our material goods. So while health may seem to be an individual concern, my morning walk suggests to me that we should see it as a collective responsibility.

I wanted to start here with this clip  from the Who at Live 8.  I love the idea that a band who once sung ‘Hope I die before I get old’ are now well into their sixties not just demonstrating mastery born out of 40 years of honing a craft but so obviously enjoying themselves.

Just as The Who leave me feeling optimistic about what I can offer in older age, so too does a recent Academy of Medical Science (AMS) report suggesting that average life expectancy in the UK is increasing at more than five hours a day, every day.   Contrary to a popular belief that these added years may not be of what AMS call ‘chronic disabling disease’.  Rather healthy life expectancy is increasing at least as quickly as life expectancy. Optimistically, increasing longevity becomes an opportunity rather than a threat, with more people enjoying longer, healthier lives that allow them to contribute more to society.

Yet, a recent court ruling reinforced compulsory retirement at 65 (http://news.bbc.co.uk/1/hi/business/8274328.stm) which, set against the way that the recession has eroded savings and pensions for older age is somewhat concerning.  It’s just as well that Labour plan to review the retirement age in 2010.  Though it’s unlikely they will be in power then, the Conservatives announcement that they will raise the pensionable age suggests that such a review will be necessary.

In any case, as the ASM argue the challenge from here is to ensure that the positive messages from medical research are reflected in public perceptions of ageing and older people.  It may not be health that will force withdrawal from life or dependency but exclusion from the labour market, economic situations forcing them into a more basic standard of living or simply an attitude that they should move over and make space for the younger generation.

At the moment I am in the midst of writing part of a unit for the new course ‘Adult Health, Social Care and Wellbeing’ (K217) on ethical dilemmas , and have been struck by the reporting of a battle over the closure of a care home in Wolverhampton. On the one hand, it is being argued by the relatives of the residents, there is a risk to the health and wellbeing of residents if they are moved, or split from other residents with whom they have forged close relationships. On the other hand, the local council insist that the home does not meet modern standards for care provision.

So which argument will win? If the care home is difficult to navigate and cannot be fitted with modern equipment,  then is it not in the best interests of the residents to move them into a more appropriate and modern care environment? But what happens if in moving the residents to newer facilities, there is a risk of harm?

This situation demonstrates some of the ethical issues in providing care in the twenty first century, in the context of resourcing and planning for an ageing population, meeting care standards, and the ever shifting sands of local and central government policy. I for one will be watching with interest to see what the outcome from the Court of Appeal is in this case; I wonder if it will instigate similar types of battles elsewhere?

Videogames and sedentary lifestyles have long been blamed for rising obesity rates. But a new generation of interactive gaming promises real benefits can be delivered directly through our television screens, and the arrival of Wii Fit seemed a perfect way to combine a consumer society’s insatiable appetite for ‘the latest craze’ with wider social and political concerns to improve the nation’s health. 

When a Wii arrived in our house it quickly established itself as a hit and even ingratiated itself with my sceptical husband, keeping him amused as he worked to improve his tennis backhand. Wii Fit arrived too and we all dutifully stepped on the board to be measured, assessed and awarded our ‘Wii age’. And it was here I started hearing alarm bells. 

It becomes fairly addictive after a while, and I’m sure it might help some people be more healthy (those who can afford it or have extremely generous grandmothers like we did!). The Wii rewards my ‘Mii’ with the systematic application of encouragement and incentives to improve my performance and hence my health. It gives me new yoga poses if I train with it, it gave me streamers on my 40^th birthday and currently considers my Wii age to be just 28. With flattery like that I’ll be back for more. But I’m also aware of being slightly controlled by this little white box, fearful that the next time I step on, it will inform me that I am unbalanced, I haven’t been training enough or my Mii age is overtaking my real age. Any Mii who fails to check in for regular body tests appears to be sleeping when you enter the programme – designed no doubt to induce guilt in the real Me.  

The other day it questioned my ‘weight gain’, and asked if I could think of the reason I had gained this weight. Was it down to snacking, drinking too much or indulging in late night binges? There was no box to tick for the real reason – I had wet hair, a bulky water-logged towel on my head and a belt studded with heavy metal. I’m not the only one to have suffered at the hands of the over-zealous all seeing Wii Fit – professional fitness trainer James Mitchell was told he was ‘obese’ by this personable living room health advisor, due to the weight of his perfectly healthy muscle mass.  

I have posted before on this Blog regarding my concerns about the way in which particular messages about what it means to be healthy are omnipresent – from our television screens to the school curriculum – and potentially damaging. As social marketing establishes itself as a firm political favourite for health service development – are even apparently innocent home entertainment systems, such as Wii Fit, just another tool for inspiring Foucauldian style self discipline in a society obsessed with the body beautiful?  

“Social marketing takes lessons from commercial marketing…and applies them to the social and health sectors. It puts a detailed knowledge of consumer behavior at the very heart of the development of behaviour change interventions, campaigns or programmes”. It relies on “the systematic application of marketing concepts and approaches to achieve behavioural goals relevant to improving health.” 

(Department of Health, England).  

To me that sounds very much like what Wii Fit does! But it fails to locate the particular ‘behavioural goals’ of performing these exercises within a sensible ‘behavioural context’. There is no advice on preparation for exercise or how to end your session – except to remind you to clear the area of breakable objects incase you should hit a Ming vase with an imaginary tennis racket. Wii injuries are on the rise according to GPs, many of which are probably the result of failure to warm up, cool down or balance muscle groups. 

The development of games such as Wii Fit certainly promotes awareness of exercise and makes indoor physical activity fun for even the most hardened coach potatoes. But it is half baked health policing. Although the Wii can certainly help to foster healthy competition between family members, each trying to beat each other to pole position on the ski jump, how far it can genuinely improve health in context is questionable.  

It is also possible to cheat. My daughter has discovered you can cheat the Wii into thinking you are running by sitting on the sofa and gently shaking the Wii remote. That’s no solution to the nation’s obesity crisis! And it locks us into the private worlds of our homes instead of encouraging us to get out and meet other people. One of the biggest positive influences on health is the maintenance of strong social networks – the Wii is no substitute for face-to-face interaction. Besides, the Wii tells tales: ‘Did you know Dad hasn’t trained for a while?’ it told me the other evening. 

But my husband is not fooled by the living room health police – he is happy to allow his Mii to fall asleep rather than face the cheeky retorts of the Wii fit trainer. Confident that he has snubbed the all seeing eye he puts on Wii Games instead and starts practising his backhand. But as his skill improves and he progressively unlocks higher levels of challenge, is he any more removed from this subtle social marketing – designed to achieve ‘particular behaviour goals’ – than those of us diligently performing sit ups and sun salutations to curry favour with a little white box..? 

Over the past few weeks I have been writing course material on the subject of advocacy. Following discussion with colleagues, I began to think more carefully about terminology, and specifically whether self-advocacy groups are in any way distinct from other ‘user groups’ in health and social care. Self-advocacy was a term coined in the learning disability field, and describes the process of ‘speaking up for oneself’. Self-advocacy organisations are, in the main, independent voluntary groups, although many are reliant on state funding for survival. Self-advocacy groups provide a space where people come together to develop their skills in advocating for themselves. But they also provide a mechanism for social networks, the development of a collective identity, and a channel for participation in local (and sometimes national) decision-making processes about services. Some self-advocacy organisations (notably People First groups in learning disability) also claim to help people secure their rights, and affect social change.

In this, self-advocacy groups are not much different from the myriad of other user groups in health and social care. In all these groups, peer support is extremely important.  In a blog entry on service users helping each other to produce personalised support, Clare Evans stated that hard to reach service users frequently benefit from direct contact with their ‘experienced peers’ (http://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/07/service-users-help-each-other.html). However, self-advocacy groups for people with learning disabilities employ non-disabled staff to support this process.  Rohhss Chapman wrote about the role of such non-disabled support workers in her PhD thesis, but the wider literature on self-advocacy groups (who often refer to themselves as ‘user-led’ organisations) is notably silent on the issue.

If a distinguishing feature of self-advocacy for people with learning disabilities within the wider context of user groups is the role of support workers who do not have the label of learning disability, is it not time that we looked more carefully at the nature of this support role in practice? I suspect there is reluctance in the advocacy community to do so, because the implication is that such a discussion shifts the focus away from self-advocates. Some may view this as a threat to people’s empowerment. However, with more local authorities drawing on self-advocacy organisations to provide a representative voice for the local population of people with learning difficulties, whilst the threat to self-advocacy funding becomes ever more acute, surely the question of how self-advocacy groups are run and indeed where power lies within these groups, becomes ever more pressing?

Having worked in the voluntary mental health sector for ten years before becoming an academic, and having also faced some weighty challenges to my own wellbeing in the past, I have had a longstanding interest in what makes people happy with their lives despite facing many difficulties along the way. For many years this topic seems to have been the domain of philosophers, religious thinkers and poets. The scientific community appears to have been more interested in exploring what makes things go wrong, looking at ‘pathology’, rather than seeking the ingredients for a contented and satisfying life. 

In recent years this deficit has started to be addressed, especially by proponents of ‘positive psychology’ who have studied the factors which make people happy with their lives. Personally I have welcomed this approach as I think it provides some useful insights into what really makes people happy, offering an alternative to the messages peddled by advertisers that we can buy our way to happiness. 

So, in theory, I should be pleased when politicians embrace the messages coming from positive psychology. Richard Layard is an economist and Labour Peer who has written a popular book on happiness and has promoted policies focusing on increasing psychological and emotional wellbeing. Conservative leader David Cameron has been on record as saying that GWB (general well being) should be as important as GDP (Gross Domestic Product). Both talk about the dangers of thinking that more money equals more happiness. However, in practice I feel disturbed by such messages coming down to the populace from people with positions of power in our society. While they may be genuine in their intent, there is always a danger that positive psychology will become associated with ulterior political motives – a new ‘opium of the masses’. If the move towards being a happier society is to be a liberating experience doesn’t it has to come from the bottom up and not the top down?