Redesigning Health and Social Care

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?

If you watch BBC TV over the next two weeks you will not escape the
Wimbledon phenomenon, where even the most dedicated couch potatoes in the viewing public become obsessed with fine physical specimens like Andy Murray throwing themselves around the courts. Meanwhile, if previous years are anything to go by, the public tennis courts in my local park will suddenly be full of people not looking anything like so fit trying to emulate their sporting heroes.

Some months ago, quite by chance, I used tennis as an analogy for life in some materials I was writing on health and wellbeing for the Open University’s forthcoming new 2^nd level health and social care course.

“Not surprisingly health and social care services tend to focus on what is going wrong in the lives of their service users, as they have to try to find ways of tackling their problems. However, in order to recognise what constitutes a ‘problem’ it is useful to have some understanding of what a good quality of life might look like, as this provides a point of comparison between what might be and what is. To use an analogy, if you wanted to improve your ability to play tennis it would help to know what a good game of tennis is like, what makes for a good tennis court and for your coach to know how successful tennis players operate, as well as having an understanding of the circumstances under which people play tennis poorly. Knowledge of quality of life and the factors that contribute to an individual’s wellbeing can similarly be useful to those who provide and use health and social care services.”

What I didn’t consider at the time was that, in comparing ourselves to the likes of Andy Murray or Venus Williams, whilst we might be inspired to greater things we could also become dissatisfied with our less than perfect bodies and with our less than optimal performance. The balance between inspiration and desperation is a delicate one. How do you react to this week’s Radio Times cover?

I I am currently writing some course materials on identity, health and wellbeing. I have not given much attention to thinking about my own identity in relation to health until now, but on reflection it seems quite important. Before being diagnosed with asthma in my mid-thirties, and borderline high blood pressure in my forties, my contact with health professionals was minimal, whereas now there are regular check-ups with practice nurses and occasional consultations with doctors. Whilst these encounters are usually reasonably satisfactory, I often feel that my sense of identity in the consulting room is quite different to that in many other aspects of my life.  

As time is limited in these appointments there is necessarily a focus on the medical aspects of my being. Should I happen to mention something else that is going on in my life it might at best be briefly acknowledged, or at worst ignored as irrelevant to the business in hand. One practice nurse, who thankfully has now moved on, was terribly patronising and would make generalised statements starting with phrases like ‘I find that asthmatics …..’. I used to leave those appointments simmering with anger and feeling thrown back into a frustrated child-like state of weakened identity. In the end I started wearing a jacket and tie to appointments with that nurse to try and assert a more powerful identity for myself in the room! 

I can also remember experiencing annoyance with well-meaning friends who suggested that these long-term conditions were probably brought on by suppressed anxiety, anger or other emotions which could be sorted out with one brand of psychotherapy or another. Now I do agree that mind and body are linked and I know that the role of genetic factors in physical health is still being debated in some quarters, but this just did not fit with my sense of identity and I resented the implications of emotional vulnerability suggested by these people. Whatever the causes of my medical conditions (as I am choosing to view them) my sense of identity clearly plays an important role in my willingness to engage with others in finding ways of managing them so I can get on with my life.

On the 29th of November, 2009, Barry Baker called 911.  He was having a heart attack.  The 911 phone controllers had left the line open.  They heard the paramedics arrive and then decided not to act.  The reasons for the inaction were not given by the BBC.   The Mail reported that the paramedics, seeing an unkempt man living in untidy conditions had decided that he was ‘not worth saving’.  Barry Baker died.   As Deborah Orr puts it, he was ‘not perfect enough to be treated.’

How do services prevent this sort of thing from happening?  Workers will receive training, of course.  Also, like any professional, these paramedics will be aware of their duty of care that requires them to act.  Services will also try to screen out any ‘bad eggs’ – people who are wrong for the job.

All approaches are important but is there room to move beyond training, rule following and staff recruitment.  Is there a need to talk about what Aristotle called ‘virtue.’  As Aristotle explains, virtue is not just a matter of having a good heart.  It is something that must be worked at.  It involves thought, reflection and maybe even trial and error as you try to work out what it is the right thing to do – ethical issues are rarely black and white.

Services have a role in nurturing ethical decision making among their staff just as they are involved in training.  I’m wondering then, to what extent are discussions about ethics part of discussions about practice?

Here at the OU we have lots of meetings and at the end of one of those meetings last week I mentioned to my colleagues that I would be writing this blog this week, and did they think that it was appropriate to be talking about swine flu? I was really surprised by the feedback I got (most of it very impassioned) and thought I’d share with you some of the concerns that were raised.

First of all, is the concern about swine flu a useful distraction for politicians (and the media) who have had to focus so much energy over the last few months on the dire news about the economy? Second, does the reporting of swine flu actually meaning that we are taking our eye off the ball with regard to the very real threats to health, for example heart disease? And my own thought – what is the role of the World Health Organisation (WHO) in all this? The WHO is a well established global organisation, and I’m not disputing its legitimacy, but it is now one of many, many agencies telling us what to do with regard to our health – so perhaps this current concern is also a way for the organisation to re-assert its authority?

All these lead me to wonder if swine flu is a health story or a political one. Time will tell as to whether or not a pandemic does occur, but in the meantime high levels of anxiety as a result of sensationalist reporting might turn out to be a real threat to health.

Otto is a 21 year old Millwall fan. He likes James Bond and Bob Marley. He loves ham pizza and holidaying in Devon. Otto is an aspiring actor, appearing in local stage versions of Macbeth and The Canterbury Tales and is soon travelling to Las Vegas on a bit of a promotional gig. Like many men of Otto’s age his dream woman is Fearne Cotton, and one day, when he is older and feels ready for the responsibility, Otto hopes to become a father.

Sound like a bit of a catch, ladies? Well apparently not, because Otto, like many young men, is struggling to find a girlfriend, and this month his mother has gone public in the search for a suitable girl for her boy.

‘Mother wants sex for son’ screamed the headlines. ‘Everyone else his age is having sex and enjoying being young adults, so why shouldn’t Otto?’ she asks. She has even been quoted as offering to fund a visit to a prostitute for Otto to lose his virginity. Which is enough to embarrass any young man, but what Lucy Baxter is trying to do is not embarrass her son but highlight society’s attitudes to learning disability. For Otto also has Down’s Syndrome and his mother believes social attitudes towards people with learning disabilities are preventing her son from having a sexual relationship.

Lucy wants her son to live a ‘normal’ life and experience all the things that ‘everyone else’ does, but the story also raises many wider questions:

What is a ‘normal’ sex life if there is such a thing?

Is every 21 year old Millwall fan enjoying a healthy sex life?

Should men automatically assume a relationship with a girlfriend will lead to sex?

Does sex have to be part of a healthy and fulfilling ‘normal’ life?

For a society so obsessed with sex, with sexual images surrounding us on television, advertising boards and magazine covers, we are strangely prudish about some aspects of sexuality. People are happy to see topless models on page 3 but recoil in horror when a woman tries to breastfeed a baby in public; men lust after semi-clad women in the pages of Nuts, FHM and Maxim, yet berate their teenage daughters for going out wearing short skirts.

In fact we are surrounded by sex – usually women, usually heterosexual and invariably without a disabled individual in sight. Yet when it is brought to our attention as something which exists outside the glossy images we see of perfect women in magazines, we shy away from the reality of sex in everyday contexts.  Not everyone experiences sex. Even less experience a loving relationship. Not every relationship automatically leads to sex. Sex is a messy, complicated affair as well as a seemingly vital part of being alive. But some people are either directly or inadvertently excluded from finding this out in the first place. And this is Lucy and Otto Baxter’s point.

Lucy believes her son has every right to have ‘the same opportunities as everybody else’. This he does. But the way the story has been received in the media says a lot more about society than just our attitude to disability and sexuality. In one interview the presenter suggested to Lucy that Otto’s girlfriend would have to be a ‘very special’ girl, because Otto was a ‘very special’ son. Isn’t every son special? Doesn’t every mother want a special girl for her special son? Lucy has brought Otto up to be ‘normal’, so isn’t labelling him as ‘special’ going against this? But the judgements were not reserved for Otto. Lucy has also been judged. She is repeatedly described as ‘single’ and ‘never married’ – what relevance does this have for the story? In one report she was described as ‘a respected member’ of the Down’s Syndrome Association. Was the use of the term ‘respected’ suggesting her behaviour in other matters might not be quite so ‘respectable’? Reports have suggested Lucy is morally-lax because of her unmarried status and open attitude to sex, and both mother and son have been criticised for encouraging a sexist attitude towards women.

With a bit of luck Otto’s plight will promote a long overdue debate about sexuality and disability. But what the case also shows is that disabilities don’t stand in glorious isolation and neither does sex. They are complicated by cultural norms, social opportunity, family relationships, moral expectations, gender inequalities and much more besides. Just like any 21 year old Millwall fan, Otto will have to deal not only with the sex, but with the complicated world it takes place within. This will question his identity not only as a young man with Down’s Syndrome in search of a girlfriend, but as a young man with particular expectations about social relationships, and a young man with many different interests beyond his disability which remained largely unreported in the newspaper coverage. This is a story about much more than Otto losing his virginity.

Cerrie Burnell is a CBeebies presenter with one arm ending slightly below the elbow.  As far as presenting a children’s show is concerned it hasn’t been a problem except that both the print media and blog-o-sphere have been buzzing with some pretty intense comment about the complaints from parents that her appearance may frighten children.   A Facebook group has even been established on this issue.

Certainly, these 9 complaints from parents have been amplified by internet discussion though this in itself is worth looking at to capture the way society responds to disability.  I’m also reminded once  again that the difference between impairment (in this case, the loss of a limb) and disability is that the later reflects the way society operates.  As many in the online discussion have pointed out – it’s the parents’ attitudes not necessarily the childrens’ that is the problem here.

But I’m not suggesting we need more education to address people’s attitudes.  I doubt education will have much impact unless we address the kinds of institutional norms that make it difficult for disabled people to hold down jobs, shop or use public transport – in other words, conditions that challenge the supposed dependency or absence of disabled people.  But the issue here doesn’t seem to be in the way the employer – the BBC – is operating either.  The viewer responses make me think there is something deeper here about television as an medium and the sort of norms it operates by that set up expectations about perfection, beauty and what is considered good for children.