Sticking plasters

I realise that this title won’t mean much to Americans or people outside the UK, so let me share a small anecdote by way of explanation before I get into the topic I want to discuss. I was on an American airlines flight back from New York in 2003, having done a lot of walking around the city over the preceding week. When I removed my shoes and straightened my socks it transpired that a burst blister had adhered to my sock, and it started to bleed surprisingly profusely. I asked a member of cabin crew for a sticking plaster, and got entirely blank looks in response. When I explained the situation, a steward showed a sudden look of recognition and sighed “oh, a Band Aid! I keep one of those in my wallet for my kids” and provided what I needed. So yes, a sticking plaster is a Band Aid – an adherent protective dressing for a small wound.

I found it quite an insight into American marketing, as I had also tried to buy antihistamine cream in a drug store to utterly blank looks, until someone realised I wanted “Benadryl”. I had also seen the TV advertising persuading people they had adult ADHD (with a symptom list that seemed to encourage false positives, and a link to a small quiz online that seemed to classify almost anyone as having ADHD), or that they needed Viagra (with the almost comical warnings that “erections lasting more than two hours can be dangerous and require medical attention”). Disease mongering is a pretty interesting phenomenon, and well worth reading about – Did you know that the vast majority of viagra prescriptions are “off label” and written for groups in which there is no evidence of efficacy (including women, when there is not a single study showing evidence of efficacy in this population)? And that the pharmaceutical companies are trying to medicalise “Female Sexual Dysfunction” to create mass markets to address lack of desire or lack of pleasure, with minimal consideration of the context or wider issues, because of the success of such marketing with men? Or that “restless legs” has been marketed to the public as a common condition requiring medication? It made me quite glad for our generics, and lack of medication marketing targeting the public.

But the reason I wanted to talk about sticking plasters is that they are a response after the event. A means of short-term management, and covering up of an injury, rather than preventing it. Like my blisters adhering to my sock, there were many stages at which that bleeding could have been prevented – by covering the blister earlier, or better still byby taking the subway more and/or wearing more sensible shoes to explore New York. The problem is that if we become overwhelmed by demand for the reactive response, we lose the capacity to look at what underlies the demand. And if we spend too much time reacting to distress in health services, it can mean that we fail to do the preventative work that would reduce the need for such services. With austerity politics ensuring that the health and social care sector are too underfunded to be proactive, I think that is where the NHS is heading, along with most of the public sector.

Every single day I seem to read about travesties of social justice, and the lack of thought about the people that bear the brunt of them. Time and time again the most vulnerable members of society are being abused and neglected at a national and global scale. Whether it is the man who has paid UK taxes for 40 years who is being denied essential cancer treatment because he doesn’t have a British passport (due to a paperwork oversight when he arrived as a child with his parents from the Caribbean 44 years ago), or the deportation of a humanitarian/academic couple who are being told to leave because they went abroad for too many days – to complete a government study. Or how about the person that tweeted about having waited for over a year for support after a sexual assault, with rape crisis waiting lists closed for most of London for more than a year due to the scale at which demand exceeds supply?

Perhaps we should look at the rapid rise in mortality in the UK so far this year, falling life expectancy (especially in lower socioeconomic groups) or the rise in deaths amongst mental health patients – despite the falls in smoking and improved outcomes in many health treatments. A man/woman in an impoverished estate in the north of England can now expect to enjoy 32/35 fewer years of life in good health, compared with a counterpart in a wealthy suburb in London or the Home Counties. Or perhaps we can look at the impact of cuts to NHS funding (albeit masked by fake claims of record wage rises) record waits for A&E, the cancellations of operations, and the burnout of NHS staff.

Or look at the increase in homelessness over the last few years (it went up 16% in 2016 alone, with almost 50 000 families living in bed and breakfast accommodation and many more “hidden homeless” living on floors and sofas of friends and acquaintances) with the knowledge that being homeless can worse than halve your remaining life expectancy (homeless women die on average at 43 and homeless men at 47, compared with 77 for the rest of us). As the author of the BMJ article puts it “Homelessness is not an episodic event, but something systemic. It is a neon sign that something is fundamentally wrong with policy across health and housing”. This lack of provision doesn’t even save money as the cost to the NHS of society’s failure to deal with homelessness and other examples of inequality has been estimated at £4.8bn (€5.4bn; $6.7bn) annually.

These same austerity policies have a wider impact on mental health. Psychologists for Social Change have identified five ways austerity policies impact on mental health: 1. Humiliation and shame 2. Fear and distrust 3. Instability and insecurity 4. Isolation and loneliness 5. Being trapped and powerless. They remind us that “These experiences have been shown to increase mental health problems. Prolonged humiliation following a severe loss trebles the chance of being diagnosed with clinical depression. Job insecurity is as damaging for mental health as unemployment. Feeling trapped over the long term nearly trebles the chances of being diagnosed with anxiety and depression. Low levels of trust increase the chance of being diagnosed with depression by nearly 50 per cent”.

So we can’t see mental health in isolation. Whether it is the individual context (for example in the power threat meaning framework I discussed in a prior blog) or in the wider sociopolitical context, we are not brains in a jar, but socially connected beings with experiences that impact on our wellbeing. When we talk about the shortfall in mental health services, too often we are saying that in the context of demand for services exceeding supply, and feeling strongly pulled as psychologists to provide more of the same. That makes sense in at the coal face, where it is hard to have the energy, time or resilience to look at the wider picture beyond the demands hammering on our own door. However, it means that we are discussing the lack of sufficient reactive responses to a problem that could have been dealt with more effectively further up the timeline with proper proactive and early intervention work, and in a lot of cases could have even been prevented with better social policy and provision for vulnerable population groups.

Of course, doing preventative or early intervention work also takes resources, and we can’t take them away from the people currently in need/distress now. But instead of us constantly asking for a little bit more of the same to deaf ears who reply with excuses about finite pots and efficiency savings (and sarcasm about magic money trees), maybe we need to think more creatively about intervening at different levels and in different ways to the set up of existing services. I’d rather be providing sign-posts to avoid hazards than doling out sticking plasters when people trip over them – and best of all I’d rather be fixing the hazards, and helping vulnerable people identify routes that are less risky.

I’ll give Psychologists for Social Change the last word: “Mental health isn’t just an individual issue. To create resilience and promote wellbeing, we need to look at the entirety of the social and economic conditions in which people live”.

Folding Stars – a blog about loss

Tomorrow is a promise to noone

I would do anything for another minute with you because
It’s not getting easier, it’s not getting easier

I hope that you’re folding stars

Simon Neil from Biffy Clyro sang these powerful words about the death of his mother, Eleanor, in the song Folding Stars (I’ve always assumed the title is a reference to her doing patchwork). And this week I’ve been thinking a lot about people who have died myself.

I think it started because I watched the songaminuteman videos and read their facebook page in which a man about my age, Mac, is singing with his 80 year old father, Ted, who has dementia. Mac described on their justgiving page (which has nearly reached £100,000 for the Alzheimer’s Society) how difficult it is for him and his mother to cope with Ted’s aggressive and disoriented behaviour, and how singing has been a great reprise from that. Ted has been a club singer and Butlins host for much of his life. Singing is clearly something he loves and shares with his son. You can see from the videos that as soon as the backing music starts, it is something he immediately connects with, recalling the lyrics of a huge range of songs, and the banter and demeanor that used to accompany it.

That reminded me of my paternal grandfather, Jack, who died in 2009. He was also a talented singer, who had the opportunity to make a professional career from it had he been willing to emigrate to America, although he chose to remain in South Africa and have a more conventional lifestyle, running a shop and later working in commercial real estate. I didn’t ever get to know him very well, as my parents had emigrated to England before I was born, and so we would typically spend two to four weeks per year with my grandparents, alternating visiting them in South Africa with them visiting us in England. After I was twelve and needed an adult seat on the plane, the cost of flights became prohibitive and we only visited South Africa once when I was a teenager, and I can only remember them coming to visit twice more. When I got married in 1997 they were unable to come to the wedding as my grandfather had recently had a stroke, so they sent us the airfare to come and visit them the following year. I took my husband to see South Africa and meet my grandparents, and my parents overlapped with us for a week during the trip to show us some of the places they had grown up. We also visited Cape Town and the Kruger Park.

After that trip I heard about their decline  through my parents. My grandmother sank gradually into Alzheimer’s style dementia, to the point she is now almost non-verbal and needs constant nursing care, and my grandfather had the stepwise decline of multi-infarct dementia, with Lewy body type hallucinations, until his death 7 years ago. I don’t have a very clear sense of Jack as a person from my childhood. I can recall his wry smile, the habitual sequence of cleaning out and restocking his pipe with fresh tobacco and the pungent smell of him smoking it. I can recall the paranoia and acceptance of racism that years of living in South Africa had normalised contrasting with the fact that they had been very much ahead of their time in how they had supported Ben, their black “garden boy”, to have accommodation and paid employment in Johannesburg, rather than having to commute from Soweto (the nearest “township” or black slum). I can recall the taste of sugar coated dried fruit sweets in various colours and flavours, and the enormous avocados that would fall from their tree. I remember trying to explain how to use their new video recorder and remote control. I can picture the pale blue of the air letters he used to send to us regularly, and the way we would all take turns to talk on the phone to them when it was the birthday of any member of the family, long before the internet and skype made the world seem smaller. Overall I remember him being a bit of a grumpy man, who was anxious about single lane country roads, and didn’t like my grandmother’s religious rituals.

I also remember being unkind to him once as a child, and being told off by my parents. The memory is of being quite young and making a den with my cousin out of blankets hung between furniture in my grandparents’ back room. We would have been about seven or eight years old, and we were pretending to be cats. I don’t remember what my grandfather said exactly, but I remember that he said something mean that implied he thought our den was stupid. We wrote him a note that said it didn’t matter what he thought because he was a big rat who wasn’t welcome in our den, and signed it “the two cats”. As a kid it seemed like a fair response in kind, but my parents said that although he was grumpy it was a mean thing to do because he was old and had arthritis, and I remember feeling ashamed. As an adult I gained another layer of empathy, as I learnt about how much happened during my grandfather’s lifetime. How as an infant he had to flee persecution in Eastern Europe with his parents and move to South Africa where they had to learn English as a third language and live in a single room. He used to study by torchlight so as not to wake his father who worked night shifts. As my grandparents reached adulthood and got married, Jack had to do military service, and there is a photograph from when he was a fitness instructor in the army. They lived through the second world war and heard about how two thirds of the Jews in the world were murdered in the holocaust, including 91% of the Yiddish speaking Ashkenzim to which they belonged. They saw the inaction of the world turning a blind eye for far too long. Then after the war, as they became parents, they saw the survivors return to their community with tattooed numbers from concentration camps. Having been brought up as a British atheist I have no idea how that must have felt, but it can’t have been easy.

I heard about my grandfather dying two days before I gave birth to my twin daughters after a very complicated pregnancy, at a time when I had enormous other stressors in my life and I was caught up in a protective bubble. And I just accepted it as a fact and got on with everything that was going on. I don’t think I had cried about it before this week. But I am sad that I didn’t get a chance to ask him more about his life or to hear more of him singing. Nor did I express my thanks for how much he changed the path of my life before I was ever born. It is an impressive achievement to progress in a single generation from being immigrants in a single room learning English as a third language to owning a home and a business and funding your child to complete university and travel to England for postgraduate study. He was probably the reason that my parents were able to choose their own path as London hippies, and therefore a big influence on my sense of identity. I’d like to think he’d appreciate how badly my Dad sat shiva with my much more devout aunt, given his disdain for religious ritual.

I had also lost a colleague and friend who had died unexpectedly a week before the death of my granddad. Phil was someone I had worked closely with for several years, and had great respect for. He was in his fifties and had teenage children. It was a mark of my great trust in him that I had cried twice when talking to him – once about seeing a small deer get run over and killed on my way to work, and once when he told me about the death of a child I had been working with. And yet, like with my granddad, when I heard he was dead and I would never see him again I just processed the news as a fact, and felt no emotional response to it. As with my granddad, it has only been over time that I have been able to mourn his passing. I think of Phil each time I travel to a new country or walk on a beach, because of his habitual request to “bring me back a stone” if you went somewhere far away, and the pile of stones he would bring back from the most northerly beach in Scotland. I have often made stone towers or arches, written his name on a stone and thrown it into the sea or photographed the stones thinking how much he’d have liked them.

Death is an enormous topic to even try to think about, perhaps because it is connected with such painful experiences of loss, but also our own mortality and the inevitable eventual death of all those that we care about. As an atheist, I believe death is the end. Trying to imagine death is like staring into a black hole – somewhere in the uncomfortable abyss between terrifying and impossible to conceptualise. Having children has made me much more aware of my own mortality, and more fearful for theirs. I always text before takeoff whenever I fly for work, and I tell them I love them an extra time every night as they fall asleep, because I’d want them to be sure of that if I ever don’t return. But I remain of the opinion I expressed as a five year old to a babysitter, that even if a butterfly lives only for one day that isn’t a sad thing if the day was a happy day, because all they would have known is happiness. And I feel the same about my life, that I’ve already had a huge measure of happiness from a wonderful family, good friends, and amazing experiences, so even if it were to all be over tomorrow I couldn’t feel short-changed.

My Mum’s father died before she was born, and her mother died when in her late forties, when I was an infant. In my childhood my Mum felt it was likely that she would also die young, and I remember her having life insurance to protect us from the financial repercussions if that was the case. She was the only person I know to be grateful to have greying hair, as it was a marker that she had lived long enough to go grey. She is now retired, with fully grey hair and is thankfully still in good health, but she has been a good role model of appreciating the time you have got. And that is such an important thing, to savour the present. We are taught to invest for the future, in terms of putting our time and energy into long-term plans, focusing on building our careers, saving money, accumulating possessions. But as Alan Watts so neatly explains, we need to make the most of now, and dance while the music is playing. We need to have time for relaxation, creativity and fun. I’m trying to change things around a bit, so I do that more. I’ll give the last word to Biffy Clyro also (from Machines):

Cause I’ve started falling apart I’m not savoring life
I’ve forgotten how good it could be to feel alive

Take the pieces and build them skywards
and
Take the pieces and build them skywards
and
Take the pieces and build them up to the sky.