Experiences of care: there, but for the grace of God, go I

Yesterday I was in Cardiff, visiting my Mum and Dad. I went to see them partly because today is Mothering Sunday, and partly because my Mum was one of the 90,000 people who will have a knee operation in 2017. Every year 3 in 5 people aged 35 – 60 years old will experience knee related health problems. Some 6 million working days are lost each year due to such problems. My Mum had a total knee replacement (arthroplasty) 9 weeks ago. In the UK, such an operation costs around £6000 a go. She is making slow but steady progress and it was lovely to spend time with my parents.

The operation itself was very successful, and the wound healed well, and thankfully my Mum didn’t come down with a hospital acquired infection. She did, however, experience great postoperative pain and bouts of severe confusion. Although my Mum is in an age group where the length of stay is likely to be greater than the normal 4 days for such an operation, she was actually in hospital for 20 days. Such an extended stay in hospital resulted from it proving difficult to arrange and ensure an appropriate discharge plan was put in place. The hospital didn’t appear able to co-ordinate and organise care with the local community services.

She might still be there, had it not been for my Dad telling the hospital he could provide home care (despite my advice to the contrary). This was undoubtedly true, but the net result was my Mum was precipitously discharged and that was that. No after care planned, no physiotherapy, home help and none of the anticipated adaptions and aids were put in place. There wasn’t even a discharge letter to give to the GP. Thankfully some of my brothers, sisters and brother-in-law’s were able to help get the house organised (bed downstairs), prepare some meals for the freezer and so on.

Professional help only started to happen when a few day later, my Mum, struggling to manage her pain, called her GP for a home visit. A young locum GP arrived and was appalled at the lack of ‘service join up’ and the way in which my Mum had, for all intents and purposes, been 'abandoned'. Before she left, the GP had arranged for Social Services to call, sorted out physiotherapy visits and prescribed different pain relief medication. It was a great move forward, but such care should have been planned, and provided without her intervention. I was very disappointed in the poor experience of care given to my Mum, particularly from a public service I feel so passionately about trying to improve. 

And it’s not just me who shares this ambition. Last week was NHS Experience of Care week. The week's aim was both straightforward, bold and important: recognise the need to constantly improve the experience of care for all (patients, carers and staff); promoting a more inclusive approach to improving experiences of care; more effectively support improvements at a service provider and commissioner level; and through the use of social media and other approaches to communication, generate greater interest and awareness of the how care is experienced. 

Lots of fantastic things were reported last week about peoples experiences of care and how the experience of care might be improved - you can catch up here #ExpofCare – and one of those leading on this work was the Experience of Care Lead at NHS England, Kath Evans. She is a real tonic, a sparkly kind of person, who whilst describing herself as 'always facing the sun', actually brings much sunshine, joy and comfort into the lives of others, particularly children and young people of all ages. More of which later.

And last Wednesday saw another example of care being provided, unreservedly and with skill and knowledge. I am referring to the terror attack on the Houses of Parliament, which saw 5 people killed. It was a cowardly attack, devastating, brutal and life changing for many. However, when the attack happened, good people immediately rushed to provide help and care for those left injured and dying. These carers ran into the danger rather than away from it. And as John Bradford said 400 years before I was born, 'there but for the grace of God go I'. 

The final word goes to Adam Bojelian. He was just 15 years old when he died in 2015. He was born with cerebral palsy and he lost all ability to move his body when he was just 10 months old. Blinking was his only form of communication. Despite this he wrote poems with his Mother's help. She would watch as he used his eyelids to indicate the correct letter as she went painstakingly through the alphabet. Adams poems gained international recognition. Here is a blog that Adam wrote in 2013 about what in his experience, good care looked like. 

20 million reasons that challenged my notion of comfort food

I find cooking very calming and relaxing – almost therapeutic. Some describe cooking as inspirational, but for me, after a long day at work, cooking is a wonderful way to unwind. My evening meal is my main meal of the day so I like to make it special. Not only does the act of preparing food interest me, but it gives me an opportunity to do something for others. I’m an idiosyncratic cook. If you come to our house you will be fed a vegetarian meal on every day of the year except Christmas Day, when I will prepare a turkey for guests who like a traditional meat dinner.

For 99% of the time I am very happy to do all the family shopping and cooking. However, at one time, the one meal that W would always cook for me was a ‘welcome home’ meal to mark my return from a conference trip. In those heady days, as a full time academic, I was invited to speak at many conferences. During the last 15 years I have been fortunate to have presented over 120 papers at conferences in 14 countries. Whilst international travel might sound glamorous, it usually wasn’t. It could be very tiring and emotionally draining. I like my own bed to sleep in, and from a food point of view, often the vegetarian options offered were bland, unimaginative and poorly prepared.

So for many years, I would come home from my travels, get unpacked, have a shower and then sit down to one of my favourite meals. Some people may be surprised when I say the meal was always ‘eggs and chips, baked beans, mushrooms, bread and butter and all washed down with a pot of tea’. It was pure comfort food. But for me, it was symbolic in marking a return to the normal social order of life. These days, both presenting papers at conferences and eating this meal in particular, are both becoming rare events.

These memories were brought to mind in my reading of the report from the Institute of Economic Affairs entitled Cheap as Chips. This explores the widely held belief that eating healthily is more expensive than ‘junk food’ and that poor diets, resulting in obesity, are directly caused by economic deprivation. What the research shows however is, that measured by edible weight, healthier foods sold in supermarkets tend to be cheaper than less healthy food. Indeed, the recommendation that we all eat 5 portions of fruit and vegetables a day can be achieved for as little as 30p a day!

What we eat featured in the media all last week as it was Nutrition and Hydration Week. This was originally an annual event concerned with promoting the importance of nutrition and hydration in health and social care settings. These days it aims to raise awareness and focus energy, activity and engagement on the importance of nutrition and hydration as a fundamental element in maintaining the health and well-being of people across the global community. Over the week a great deal of helpful advice was made available for people of all ages. In particular I was drawn to the research published by the Malnutrition Task Force, that had found over 5 million people living in the UK and aged over 60 thought it was perfectly normal to lose weight as you get older. This despite weight loss being an early warning sign of health problems. It’s estimated that 1 in 10 people in the UK, over the age of 65, are thought to be malnourished or at risk of malnutrition.

By no means could I be described as being malnourished. However, last week my smugness and contentment over the role food plays in my life was severely challenged. As I was driving home I listened to a story on the radio of a young boy living in Somalia, who was suffering the near fatal effects of dehydration. He had been brought to a field hospital by his Father and was in a comatose state, almost lifeless and without immediate help almost certain to die within 30 mins. His life was saved by the action of the medical team working in a field hospital. Even on the radio, the description of how they saved his life was a graphic and harrowing account. 

The United Nations report that some 20 million people in Yemen, South Sudan, Somalia and Nigeria face starvation through famine and conflict. Stephen O’Brien, responsible for humanitarian aid told the UN Security Council that ‘without collective and co-ordinated global efforts, people will simply starve to death’, with many more who ‘will suffer and die from disease’. The UN define famine being when mortality rates are 2 or more deaths per 1000 people every day and when 30% of children under the age of 5 suffer from malnutrition. This shouldn’t be happening. There are many ways you can help in dealing with this situation, and in so doing you will bring comfort and hope to others.   

Another word about being a superhero - orenda

I had forgotten what it is like living in the same home as 2 superheroes. 3 times last week I came home to find Batman and Spiderman, (aged 5 and 3 respectively) full of exciting news of how they had spent the day. There was even an occasional visit from the Hulk and Captain America. Heart-warmingly, these superheroes still liked to sit and watch Peter Rabbit on the TV. Despite the noisy excitement, I enjoyed them being here and the house was very quiet after they went. 

I also enjoyed being part of this years celebration of International Women’s Day last Wednesday. At the University, the celebrations included the launch of the University of Salford Women’s Voice group. There were quite a few superheroes to be seen in the room, and it was great to see the group so well supported – and I sense their voice will quickly become a powerful one. 

Last Wednesday the Chancellor, Phillip Hammond, made his Spring Budget statement. One of the measures he announced was a £30m package of support for women. This included £5m to fund events marking the centenary of women’s suffrage; and £20m to tackle domestic violence and abuse. The 2015 Crime Survey for England and Wales reported that over 8% of women and 4% of men had experienced some form of violence or abuse in the previous 12 months – equivalent to 1.3m female and 600,000 male victims. In 2017 these statistics are just unacceptable and it was good to see additional resources being made available to help tackle this situation. There was also £5m to fund ‘returnships’ for parents who have been out of the workforce.

‘returnships’ was a new word for me, and I like collecting new words. I have long been fascinated by where words come from and how words are used. I also like finding ways of introducing words into the every-day conversations and narratives of those I work with or come in contact with. I am amused when these words are used back at me, often, I think without the user knowing what it is they are doing. 

Sometimes it can take a while – recently it took me 2 weeks to get the word ‘surface’ (as in - make visible) into colleagues conversations, whereas last Thursday it took me just 2 hours to get the word ‘nested’ (as in – to fit inside another) transposed from a telephone conversation into an official report exploring how disparate but similar parts might coalesce around a global challenge.

The local challenge is one of lexicalisation. This is process of getting new words and their meanings into widespread usage and with shared understanding. Children, of course as they develop their vocabulary and self-confidence (and often through the use of neologisms) can introduce new words into everyday conversation. Last week, Spiderman proudly told us he had ‘closeded’ the door instead of ‘I’ve closed the door’, and before long we were all using it! 

  

And my fascination with words got a real fillip this week when I discovered the work of Tim Lomas (from the University of East London – also worth a look is their recently published map of prescriptions for people living with Schizophrenia). Delightfully, Lomas’s ‘Positive Lexicography Project’ aims to capture the way good feelings are expressed across the world in the hope we might start using these words in our everyday conversations. And in so doing, perhaps gaining a richer and more nuanced understanding of ourselves, and learn to see the world in a new and different way.

I really liked mbuuki-mvuki (the Bantu term capturing the irresistible urge to shuck off your clothes as you dance); and uitwaaien (the Dutch word describing the revitalising effects of taking a walk in the wind; and the Japanese word shinrin-yoku (the meaning of which is the relaxation that can be gained from bathing in the forest, either figuratively or literally). After walking on the beach, the forests are where I feel most at peace. If all this talk of words has left you bemused, just think about the research of Marc Brackett. He is the founding Director of the Yale Centre for Emotional Intelligence and Professor in the Child Study Centre at Yale University. His research has found that teaching 10 and 11 year old children a richer emotional vocabulary improved their performance and achievement at School and promoted better behaviour around others.  

And this blog posting is dedicated to my recently successful PhD student Seham, who as I write this, is making her way back home to Saudi Arabia. Her study explored the notion of professional stigma exhibited by mental health professionals whilst providing care for those with mental health problems. It was an brilliantly brave and challenging study. She embodied the Finnish concept of sisu – a kind of extraordinary determination in the face of all adversity. Our ideas of resilience and perseverance doesn’t come anywhere near the Finnish notion of sisu. I wish her well as she returns to Saudi Arabia to carry on her work.

Running through the questions DrT needed to ask, and not just of himself

Last week Sir Mike Richards, the Care Quality Commission’s chief inspector of hospitals described the NHS as ‘standing on a burning platform’. It’s not the first time this description has been used. Sir Ian McKellen used it at the 2015 ‘Bring Back the NHS’ event and before him, Sir David Nicholson as the NHS CEO, used the phrase to describe the NHS in 2012. Given this time frame perhaps the NHS ‘burning platform’  is smouldering rather than a blazing inferno. The ‘burning platform’ metaphor comes from the story of Andy Mochan. Over 20 years ago he survived the Piper Alpha disaster, which killed 167 people, by jumping off the burning oil rig platform into the freezing water 150 feet below.

And the state of the NHS was very much to the fore at last week’s hustings event for Greater Manchester’s first elections for an elected mayor. I represented the University who were joint hosts alongside the RCN and AbbVie (the main sponsor). All 3 main political parties were represented, and they faced an invited audience of health care service providers, policy makers, local authorities and patient groups from across the North West. I was pleased to be able to ask 3 questions around research and innovation, both how research might be better funded and what it might be aimed at changing. I am passionate about research and have been ever since I got my PhD some 17 years ago.

Being awarded a PhD was something I never imagined I would experience. Whilst I was immensely proud of this achievement, these days my pride comes from having the opportunity to help others achieve their PhD dreams. To date I have supervised 23 doctoral students through to completion and have 3 more who, all being well, will complete this year. In those early days after gaining my PhD I went through all the usual ‘bursting with pride’ things (or showing off as my Mum would say) – a sign saying Dr for my office, new business cards, changing my email signature, and of course I insisted that everyone called me Dr, which eventually became Dr T.  Which I liked.

I liked it so much I went out and bought a cherished number plate for my car, DR T. I still it have today. Yesterday I collected my new car, and once again the Dr T number plate was transferred. Just for a moment I experienced a twinge of that old excitement of becoming a Doctor of Philosophy. But it was just a twinge and today I don’t know if it was my excitement or my creaking muscles and bones that I was feeling. Which may have been down to other causes. I have taken up running although I can’t say I have been enjoying it.

So when my fellow blogger Lynn, in her last blog, told of a book that made her reflect on the benefits that can come from running, I got it. Run for your Life by William Pullen is an easy read. It take as its main strand, the notion of Dynamic Running Therapy, or as it’s described in the book, DRT. Essentially, DRT brings together aspects of physical exercise, reflection and mindfulness. The movement of the body during exercise can provide a way of helping the individual to understand and make sense of what is going on at an emotional level. Although the book is primarily focused on running, walking, when it gets the heart to beat a little faster, can work just as well. And that was the first insight I gained from this book. The second insight was one I think already knew – running and walking can be: a great way to help with your thinking; become inspired when stuck; find answers to seemingly intractable problems; and to understand the true nature of self-acceptance.

I liked being reminded of this notion. I hadn’t got on with the running experiment, and increasingly the reason I had taken up running began to challenge me. Let me explain. We have an annual 10k run in Salford. This year the University celebrates 50 years of being a University and we had secured running numbers from 1967 - 2017 so that we could field 50 runners. The senior leadership team are expected to participate (although this has never been spoken out aloud) and that meant I felt I had to get into training and be ready for the September run.

New shoes and running gear was purchased and W was cajoled into being my running partner and every weekend since Christmas we have gone out and run – each run getting a little longer. Although it was good too exercise – particularly when it was cold, dark and wet outside, I never felt the same satisfaction with running as I do when walking. And I never got to a point of experiencing the DRT as described in Pullen’s book, whereas that is a familiar experience whilst walking. So yesterday I decided that I would stop running, and use the freed up time to continue walking (Fitbit tells me on average I walk 13k a day). 

I also now think my original reason for taking up running was somewhat flawed – I am a good corporate citizen and fully understand the need for role modelling and conformity, but I know I should have said NO to participating in the 10k run earlier. I am not sure why I didn’t. I have nothing to prove and I am more content with my Self and my Self in relation to others than I have ever been. And after all, I am not standing on a burning platform of career advancement, quite the opposite. So I am saying goodbye to DRT the running - but I will hang on to my number plate for a little while longer.