Kenya remembered, and Russia too.

A few years ago I was fortunate enough to spend 2 weeks in Kenya working on an intensive programme for nurses who wanted to top up their qualifications to Degree level in order to start on a Master’s programme at the University of Dundee. It was an extremely interesting and sometimes challenging experience. The usual classroom props, power point projectors, electronic white boards, books and so on were completely absent. The closest there was to anything more modern than a flip chart was a battered overhead projector used to show acetate slides to the students.

The electricity would often go off, and stay off for hours at a time. Time tables were extremely flexible with classes running all morning or just for an hour. The students, who came from all over Kenya, stayed in a hostel and worked from 08.00 through until 18.00, with a short lunch break in-between. They were hugely competitive and loved group work and presenting their ideas. Many students would work late into the night and greet you the next morning with long lists of questions. I very much enjoyed the experience and often recall the trip as it occurred around this time of the year as I celebrated my birthday while out there. Well the students helped celebrate – they organised a cake, and at the end of the day we had an impromptu tea and cake birthday party.

I also recall the trip because while I was there I was able to visit the Mathari National Hospital. The Mathari Hospital was established in 1904 as a small pox isolation centre but then became a mental health unit called The Lunatic Asylum. In 1924 it was renamed Mathari Mental Hospital. In 1978 a Maximum Security Unit was opened, and it was this that I wanted to see as my recent experience in clinical practice had been at a large Forensic Unit for Adolescents which included a secure unit. What I saw at the Mathari unit was humbling. As a mental health nurse what I witnessed challenged my understanding of mental health care. The memories have stayed with me ever since.

People had been admitted there and had been patients for years, often forgotten by friends and families. Male and female adults were cared for in the same ward as children, and there was a complete lack of ‘designed in’ security, but plenty of bars on the windows and locks on the doors. Patients were locked into dormitories at night, often in very over crowded rooms. Many showed signs of being sedated. In 2011 CNN ran a documentary on the conditions that was hard hitting and emotionally challenging. These days, although the erratic electricity supply continues to make life difficult, there have been significant improvements in the care and conditions provided.

Yesterday, all of these memories came flooding back when I read the dreadful story of the fire last Thursday night at the Psychiatric Hospital No 14, Ramenskiy, Russia. 38 people, aged 20 -76 years old died in the blaze; 36 were patients, sleeping behind barred windows and were heavily sedated. The fire was believed to have been started by a patient who ignored the smoking ban. There have been many fires at Russia’s state health care institutions in recent years, all with heavy loss of life. In 2006, a fire at a Moscow drug rehabilitation centre killed 45 women, 63 older people died at a nursing home in Krasnodar in 2007, and in 2009, 23 people died at another nursing home in Komi. The sad news from Ramenskiy certainly puts lasts weeks somewhat at times arcane RCN congress discussions into perspective.

Sex Drugs and Rock and Roll

Actually there isn't anything about sex or rock and roll in this blog, but now I have your attention, let me tell you about drugs – and I am not talking about the illicit ones – no these are drugs prescribed usually by doctors, increasingly by nurses, that we take to solve our health problems. Well last week my Mother ended up in hospital as a consequence of being given medication for one condition which then in classical Illichian style resulted in the iatrogenic consequence of promoting a completing different and more worrying medical condition.

Ivan Illich, was a former priest and latterly a philosopher who in the 1970s wrote brilliantly polemic books critiquing the major social intuitions of the industrialised world. The opening words of his exploration of the expropriation of health in his book Medical Nemesis are ‘the medical establishment have become a major threat to health’. Of course we know that is not completely true, there are other villains (not least might be ourselves and the life style choice we choose to make).

Allegedly, the pharma industry might also be thought of as villains. Last week Emmanuel Stamatakis, Richard Weiler and John Loannidis published their paper: Undue Industry influences that distort health care research. It makes for an interesting an frightening read. Their starting point is to remind us that a universal characteristic of most western health care systems is the over reliance on pharmacological approaches for treating and preventing chronic disease. This focus is often linked to high financial returns for successful drugs.

For example Lipitor (the cholesterol busting drug) – something I use every day- has over the past decade generated £85 billion in the US. This is an amount that is higher than the gross-domestic product of 129 of the 184 countries in the world.  The annual UK NHS budget is £104 billion Stamatakis et al argue that with such fantastic sums of money available, and the associated political lobbying power it is perhaps not surprising that the pharma industry can dictate the rules of the health care game to serve its own interests. They argue that the industry’s interests are often at stark contrast to those of patients and society.  

I am not entirely sure this is the case, although they may well be creating an Illichian iatrogenic dependency.  In a report published by the Kings Fund last week I found out that 60% of people think that the NHS provides UK taxpayers with good value for money, although less than 50% believe that NHS is doing everything it can to reduce waste and efficiency. However, 79% of the respondents dealt that the NHS should be protected from spending cuts. Amazingly 40% felt that there should be no limits on what is spent on the NHS.

Arguably, the reluctance that many people have to even thinking about reducing the resources available to fund the NHS or to accept that there should be limits placed on spending perhaps indicates the priority the public place on health care. Thankfully, my Mother has been rescued from the clutches of both the medical profession and the pharma industry, and is back home and feeling much better.

Death, Dementia, Drugs and Daffodils

I was sad to hear of Margaret Thatcher’s death last week. And sadder still to witness the hugely divisive response her death evoked. I only met her once and that was in a large group, but like Tony Blair, who I also met once, she had a hugely powerful presence in the room and drew you in whatever once political beliefs. She endured much ill health in her later years, and in 2005 her daughter revealed that her mother was living with dementia.

Thatcher’s husband Denis, had died in 2003 and she was said to have missed him dreadfully. However, unlike the 62% (over 250,000) of people with dementia who live on their own, she was unlikely to have been lonely. Last week the Alzheimer’s Society published their report Dementia 2013: the hidden voice of loneliness – and it’s a compelling read. This report looks at how well people with dementia are living. 70% of those living with dementia said they had stopped doing things they once did due to lack of confidence, not ability or opportunity. Most felt anxious or depressed and 35% said they had lost friends since being given a diagnosis.

Despite the current Prime Minsters Challenge – to fund more research into dementia; to address the quality of dementia care; to increase the public’s understanding of dementia; and to create more dementia friendly communities – this report shows that many people with dementia feel disconnected from society and that for many of those who live alone, they are truly isolated.

In a related story this week, I got to read the Prescriptions Charges Coalition report: Paying the Price. More of which in a moment, drug treatments for some kinds of dementia (Alzheimer’s) have made a significant difference to the quality of life for many people in the early stages of living with dementia. However, up until 2011, people were denied access to these drugs on the basis that National Institute for Health and Clinical Excellence (NICE) declared the drug clinically effective but not cost effective. The NHS spends £8.8b a year of drugs although £500m is thought to be wasted due to ineffective use of medicines.

What the Paying the Price report showed however was that many people today cannot afford to get their prescriptions filled. On the 1^st April 2013, prescription charges in England rose again to £7.85 per item (prescriptions are free in Wales and Scotland). The report showed that 35% of those participating in the survey (4000 people with long term conditions) had not collected at least 1 item due to the cost. It’s got to be wrong in this day and age, particularly where in other parts of the UK there is no charge, that people in England have to stop or ration their medication because of cost. In health economic terms it also doesn’t make sense. The more difficulties individuals experience in managing their own care the more likely it is that their health care needs will require further intervention and increasing the cost to the NHS and society as a whole.

Yesterday was a gardening day. I planted last year’s Christmas tree, trimmed back the ivy, swept the drive, and made a start on clearing the beds of dead leaves and the general debris left over from the winter. The whole garden has burst into bud. Standing there for a pause, I thought the daffodils this year have been magnificent. Each seems to me to be like a drop of sunshine. 

A slightly inconclusive posting on human interaction and bird flu

Last Thursday was a kind of Red Letter Digital Day for me. First thing in the morning it was Twitter that dominated my news – a 'lost load' of insulation material on the M62 first thing, one of my brothers announcing to the world he was just off to have a full English Breakfast, an ex-colleague recently relocated to Strathclyde University agreeing with my impression of the wonderful morning Thursday started off as, and another ex colleague, now living in New Zealand, who told  me that he had just seen a White Faced Heron in his local river. The latter, in response to my letting the Twitter world know of the 14 Herons I can see from my front window busy nesting in the trees across the estuary. 

Later on I had an email from a colleague from Australia due to come to visit the School in early May, wondering how she might get from Manchester Airport to University of Salford, and there were a dozen emails from colleagues at work, all seeking responses to issues and concerns  important to them. I belong to 8 or 9 e-bulletin boards that also daily send me many different views of the world. On Thursday morning, James Salwitz (an American Oncologist working out of Florida - see http://sunriserounds.com/) posted a blog on Kevin MD’s bulletin board (kevinmd@aweber.com) a brilliantly informative blog on the world of medicine – a must sign up for site . Reading his blog, it was for me, a stop, think and reassuring narrative to read.

Salwitz posited the idea that both marriage and medicine are not exact sciences. Salwitz was sharing the lessons he says he has ‘learnt’ during 32 years of marriage. His top 3 tips, well the first 2 were hardly surprising – listen carefully, wives and patients need to be heard; 2nd prepare and think before you speak – but the 3rd tip resonated more seriously – he suggested that the hardest lesson of all is, that when necessary, we should be 100% inconclusive in our communication.

His argument is that in successful relationships, sometimes the best communication, the best approach to decisions, the best way to argue, is not to absolutely communicate, definitely decide, or take a rigid stand. The delicate art of effective human interaction requires balance. Being prepared to being inconclusive at times in the conversations and views we express was his way of describing how to achieve this balance.  

I have for a long time suggested to students that they need to learn to write tentatively – I am not sure there is anything that can be described as an absolute truth so why write as if there is? And I am passionate about advocating that our best work (in terms of working with others in health care) occurs when we work at the edges of knowledge and knowing – that is a place of not knowing.

On Thursday, Salwitz’s thoughts of the power of sometimes being inconclusive in our responses to others absolutely resonated with me. I have increasingly become fed up with having to respond to the fantasies of others and their sometimes distorted perceptions of reality which were often at odds with mine. Inconclusiveness, uncertainty and not knowing, are difficult, frightening places to be for many, but they can also be creative, liberating and satisfying places to inhabit.  

Thursday also saw my local pub (the Anchor) celebrate its own Red Letter Digital Day – Thursday was the day that 'free wi-fi' arrived. Sitting eating a huge bowl of Asparagus and Mushroom Risotto I was able to watch the emails land on my Ipad (there are other tablets available). One caught my eye sufficiently to stop me eating – China was reporting an increasing number of cases of people coming down with the H7N9 influenza virus (a new form of bird flu) – as regular readers of this blog will understand – the influenza virus is one close to my heart and in the forefront of my thoughts – as it will be for many others - the previous version, H5N1, claimed over 300 lives in 2003. Unfortunately as I write this post, my 17th month old grandson has spent a 2nd night in Bolton NHS Trust, with what will be his 4th admission since Christmas with influenza virus related problems. With the best science based evidence available, no one seems to know why it keeps happening – and as I say, inconclusiveness, uncertainty and not knowing can be difficult places to find one’s self in.