Our kidneys – the place of conscience, emotions, desires and wisdom?

It was lovely to read the story of young Aditi Shankar last week. I’m sure many readers of this blog would also have seen her heart-warming story. It was a story of inspiration and hope. Just 12 months ago, Aditi was spending much of her time each week receiving dialysis in order to remove the waste products and excess fluid from her blood, as her kidneys had stopped working properly. A month ago, she had a kidney transplant. What made the story particularly interesting was that Aditi’s immune system had been ‘reprogrammed’ using a stem cell transplant, which meant that her body would accept the donor kidney as its own. Importantly, this acceptance of the donor kidney means that Aditi will not have to take immunosuppressants for the rest of her life. Both the stem cell transplant (in the form of bone marrow) and the kidney were donated by Aditi’s mum. What a wonderful gift of love.

She was the first person in the UK to have such an operation. It is a new medical breakthrough, but the procedure (of having both a bone marrow transplant and an organ transplant) might not be suitable for everyone. Over 3.5 million people in the UK live with chronic kidney disease, and 30,000 people receive dialysis. Each year 3,000 patients receive kidney transplants, but sadly there are over 5,500 people still on the waiting list for transplants.

Reading the story, I was reminded of a wonderful visit I was privileged to make some years ago to the Sindh Institute of Urology and Transplantation (SIUT) in Karachi, Pakistan. It was the only trip I have ever taken where we had an escort armed with a Kalashnikov rifle, and our car was swept for explosives before entering the hotel complex every day.

The SIUT is a wonderful place, served by the most compassionate and caring folk I think I have ever come across. Their belief is that ‘healthcare is a fundamental right and is should be provided to every soul with dignity and compassion, free of cost and without discrimination of cast, creed, colour or religion’. And that is what they do.

I learnt a lot on that trip about what such a belief means in everyday life. Would they pass a CQC inspection? I doubt it. Would that make any difference to the high quality of care provided? Absolutely not. One of the things I learnt, was not to judge what I was seeing through a Western-eyed view of what constitutes excellent health care.

There were some amusing aspects to the trip as well. For example, I was gifted a huge Persian rug by my hosts. Now I have always travelled light, and seldom take a suitcase that needs to go in the hold. So, it was a challenge to bring this magic carpet home. One other abiding memory was the SIUT medical records department. This was housed in an aircraft hanger type of building. Every wall was lined with shelves and there were huge carousels of records filling the entire internal space. The medical records folk scurried around climbing ladders as they stored or retrieved patients records. It looked like chaos on steroids. But it worked. Patients and records were connected when required. And that is not something that always happens in here in the UK.

Last week I was speaking to the ward manager of the ward in which my Mum is currently receiving her care. It is a large city hospital, but strangely didn’t appear to have an Electronic Patient Record (EPR) system in use, and all records appeared paper-based. Despite this being the last in a number of admissions for my Mum over the last year; the previous one having only ended a week earlier, they had started a new record all together. So, the Do Not Resuscitate (DNR) and Lasting Power of Attorney notifications were absent. When I found out I was annoyed, to say the least, and communicating at a distance, was very frustrating. Trying to persuade the ward staff that these notifications are there in my Mum’s notes, and that they are current and applicable made me despair. Eventually, a rather sheepish nurse came back to confirm that, indeed they were, and that all my Mum’s paper record[s] were now consolidated into one record.

It appears that my experience is not an isolated one and certainly not confined to NHS services in Wales. The British Medical Journal published a survey last week that showed the NHS still relies heavily on paper-based patient records, even where EPR systems exist. Amusingly, in the same year I went to Karachi (2013), the then UK Government set out a goal for the NHS to be completely paperless by 2018. It was going to save the UK taxpayer over £1.8 million a year. In 2019, the NHS Long Term Plan set out their vision of the ‘digital transformation’ of the NHS. Last week, an NHS England spokesman said that the NHS is investing £1.9 billion to ensure hospitals (note to self, not health care in the universal sense) have the right digital foundations in place – and ‘almost 89% of NHS trust use electronic patient records, with the NHS on track to roll them out to 95% of Trusts by March 2025’. Smoke and mirrors. We will see.

However, last week I met some other medical records colleagues. I was celebrating our colleagues who had worked 20, 30, and incredibly, 40 years in the NHS, and several who had done so at our Stockport NHS Foundation Trust. Including last Friday’s celebration, we will have recognised the long service of 192 colleagues this year. Collectively, the award recipients provided 4,540 years of service to the NHS. There were 88 colleagues whose service we recognised last Friday, three of whom had worked in our medical records department. Their stories told of the huge changes they had experienced during their time with us and the NHS. Young Aditi’s wonderful story was yet one more chapter in how the NHS continues to evolve and improve.

Hello Dolly, and other memories from times past

I first visited New York in the March of 1985. It was an unforgettable trip for many reasons, and I fell in love with the place. At one time I boasted that if I ever won the Lottery, I would buy an apartment there. That isn’t the case now; I love living by the sea more. However, over the years I have visited many times, and I hope to do so again. My fantasy is to live long enough to travel there in the new Concorde – I never got to fly in the original one.

On that first trip, I did all the usual tourist things, which included a visit to the twin towers. Each of the towers had 110 floors, and there was a tourist observation deck on floor 107. I can remember sitting on the floor and looking straight down to the pavement. It was said that on a clear day you could see for 45 miles in every direction! The twin towers really were one of the marvels of the world. On the 11th September 2001, they were both destroyed in terrorist attacks by Al-Qaeda, masterminded by Osama Bin Laden.

I suspect that many readers of this blog will remember exactly where they were when the attacks happened. I was in Finland. I was having something to eat and drink at a friend’s apartment while watching the news on TV. I couldn’t believe what I was seeing and when the second plane crashed into the South Tower, I knew I was witnessing something terrible and horrifying. It was late afternoon in Finland and that evening’s TV coverage of the events, as they were unfolding in New York was almost unbearable to watch.

I have been back to New York just three times since the attack. The last time, I went with J and we did all the tourist things again. The 9/11 Memorial and Museum were completed and we were able to visit both. It is a profoundly emotional place. The almost unthinkable and catastrophic events of 22 years ago are captured in the museum’s collections of artifacts, photos, stories and each reminds the visitor of the impact such terrorist acts have on individuals, nations and the world. The memorial symbolically and powerfully ‘attests to the triumph of human dignity over human depravity, and affirms an unwavering commitment to the fundamental value of human life’.

On the same visit we had an opportunity to visit the One World Trade Centre, a shiny new tower built on part of the old World Trade Centre site and which opened in 2014. It too has an observation floor (102). After visiting the 9/11 Memorial, we decided that was one tourist activity we didn’t need to do.

Someone else who recognised the fundamental value of human life was also in the news last week. That was Sir Ian Wilmut. He was the man who led the team that created Dolly the sheep. Dolly was the first mammal to be cloned from an adult cell. They used a gland from a Finn Dorset sheep and an egg cell from a Scottish Blackface sheep. The news of their success in creating Dolly was first published in the Observer newspaper in February 1997. The story caused a stir in both the scientific world and across society as a whole. There was a very public debate about the ethics of cloning, and in particular, fears that Wilmut’s technique could be used in the future to clone humans. Wilmut described the idea as being ‘repugnant’ – his work was aimed at enabling others to study genetic diseases where there is no known cure.

Whilst Dolly went on to live a happy life, shared with a small flock of other sheep at the research institute, he continued his research into how stem cells could be used to cure degenerative diseases. He admitted later on in life, after developing Parkinson’s, that he had been a little optimistic about how quickly such research could lead to effective treatment. Parkinson’s UK continue to research stem cell therapies as a way of using healthy, living cells to replace or repair the damage in the brains of people living with Parkinson’s.

I remember 1997 for other reasons too. I was 18 months into my PhD which explored relationships between GP Fundholding practices and the acute hospital sector, and the impact fundholding had on patient care. Many fundholding practices were more interested in promoting their own ambitions rather than supporting national health objectives. In 1997, a newly elected Labour government abolished GP Fundholding and published their reforms in its White Paper the New NHS: Modern. Dependable. The reforms promised a great deal through the proposed modernisation of the NHS. It is still an interesting read and sets out a future that, 26 years later, we are still struggling to achieve: ‘Individual patients, who too often have been passed from pillar to post between competing agencies, will get access to an integrated system of care that is quick and reliable. Local doctors and nurses, who best understand patients' needs, will shape local services’.

Today, our emergent integrated approach to health and care recognises the importance of social care, the involvement of the voluntary sector, and community groups; and the need to deal with health and other inequalities. In the April of 1998, I wrote and had published my first ever academic paper. In it, I argued the modernisation proposals gave rise to both challenges and opportunities for health and care providers. And somewhat prescient, I argued that we needed to start with fostering resilience in our children and young people and the neighbourhoods and communities they live in. A healthy start in life will help secure both their futures and all of ours too.

No more waiting for Godot!

I have been very pleased to have discovered the joys of owning an electric car. They are smooth, economical, roomy and the one I own, at least, looks the business. Black, naturally, and stylish too. Whatever the time of day and whatever day we were enjoying, plugging my car into the home charger was a task of a few minutes, and I loved the fact it was so much cheaper than filling up with petrol. For over 18 months, there has never been a problem. Last week that changed.

For whatever reason (and more of this in a moment), last Monday at precisely 03.21, my car decided to stop charging. What followed has been a week of sheer frustration in trying to resolve the situation, whilst still commuting to work and dealing with other significant ‘life admin’ issues. I say commuting to work, in the loosest sense of the word. Last Wednesday I climbed out of bed at 04.25, ready to do the animals, walk Dylan the dog, shower, change into my work suit and get to the station to catch the 06.22 train to London.

The train journey down was fast and efficient, delivering me to Euston Station on time. I was in London for an NHS England leadership team, provider CEO and Chairs meeting. It was a very good meeting, albeit the issues discussed and explored were fairly challenging – RAAC, Lucy Letby, the doctors’ industrial action, and dealing with an often hostile media view of the NHS. My only complaint was that we all had to travel to London to attend the meeting. I think, in line with their equality, diversity and inclusion strategy, NHS England should seriously consider holding all such future meetings in the centre of England. That would be fair. 

And where might that place be, I hear you ask? Well in 2002, the Ordnance Survey declared Lindley Hall Farm (Leicestershire) as being the geographical centre of England. The farm is owned by Stephen Farmer (I kid you not). It is about 11km away from Meriden, which traditionally had been thought of as the centre of England. I attach a link for NHS England to use as there are some great meeting places in Meriden, suitable for future meetings, all of which are close to Birmingham railway station. Just a thought.

My return journey was not so good. The train left on time, but very quickly slowed to a crawl as we were diverted behind a slow-moving goods train owing to some emergency rail repair work. Eventually we passed the goods train and were making better time, when suddenly we ground to a halt. Time passed as we waited to find out what had happened. The Train Manager, walking through each carriage, explained that, due to an incident at Crewe, we were having to wait for clearance to proceed. We waited, and waited and waited. Just as suddenly the train started to move, only to stop a few hundred metres down the track at Stafford Station. Here the doors were opened and we all spilled out onto the platform to get some much-needed fresh air.

After nearly two hours, we were all packed onto a different train, which had mysteriously arrived, and after continuing my journey, I was able to get off at Preston Station. Unbelievably, whoever was doing the passenger messaging that evening announced to us all and on social media that the trains were running late due to someone being killed as a consequence of being hit by a train just outside Crewe. Sadly, this person had chosen suicide by train to end their life*. Thinking about this, as I waited for my connecting train, my frustration at the delay was well and truly put into perspective by whatever had been going on in this person’s life that had led to their decision to end their life.

Predictably, and almost inevitably perhaps, the next train I could catch to Blackpool was cancelled. I sat on the platform and waited for the next one. It did eventually come. I got into bed at just before midnight. It was a long day for sure; something I felt even more four and a half hours later as I got up ready for a full day of in-person meetings at my Trust. And I was no closer to getting my car problems sorted.

On the Friday, I was able to get my car to the service department of the car dealer’s garage. They were confident they could fix the problem. They couldn’t. My car’s computer kept saying ‘No!’ Later in the day, (having waited for news) I was contacted to say that I needed to book my car in for diagnostics. So, I travelled to the garage on the bus to pick my car up and get an appointment sorted. It was the end of the school day and the bus was crammed full of excited schoolchildren. I sat next to a young girl, who I could see kept looking at my hat. Eventually she asked if the feathers were real, I said they were, that they had come from my parrot. She said ‘Wow!’ and the smile on her face kept me going for the rest of the journey.

My smile quickly disappeared when I was told that the earliest diagnostic appointment was 31st  October. Unbelievable! And I told the young man so. It was/is a long time to wait, and how would I be able to do all the things I needed to do between now and then? Not their problem, I was told, they were very busy. Okay, I thought. And then I thought, actually, it’s a car; I can catch a train, borrow J’s car, or switch to ‘virtual’ meetings. What about all those folk waiting for an appointment or treatment from the NHS. Most will have no alternative, but to wait. And wait. And wait. And wait.

And that is not acceptable. That person could be you, or me, or someone we love. While the NHS England meeting I attended wasn’t looking for absolute solutions or answers, I was reassured by the collective expressed commitment to keep finding ways to get all those who need to access NHS services, to be able to do so in a timely and appropriate way.   

*The latest data available, which is for 2021, and published last month, show there were 253 deaths by train suicides, which is precisely 253 too many.

Only when it’s dark enough can you see the stars

Given that I have been posting this blog every Sunday for over 13 years, regular readers may know my egg and chips story – please bear with me if you do. For many years, on my return from being away from home, and particularly if I was returning from overseas, the first meal I would eat would be egg and chips. Two fried eggs, baked beans, mushrooms, chips, two slices of bread and butter and a pot of tea. Brown sauce was an optional extra. However stressful or successful my trip might have been, the meal, the ritual, marked a return to a place of safety, of love and familiarity.

For some reason I don’t tend to do this these days, although egg and chips remains one of my favourite meals. I was reminded of this habit last week. I had taken a walk along the promenade, and stopped at one of my favourite places, The Shipwreck café bar. It is a great place to sit and people watch, or just to sit and be quiet and still for a moment or two. As I sat in the sun with a glass of the red stuff and a bowl of chips and mayo, my mind drifted to those egg and chips meals of old.  

Up to that point my week had been very stressful, busy, challenging and difficult. My mother, who lives with dementia had, after 13 weeks in an acute hospital, been discharged home with a wraparound care package. In the first 48 hours she had fallen twice, once requiring an A&E visit. My mother refused everything the carers tried to do for her, and was both physically and verbally aggressive. My dad WhatsApped me during one of the carer visits and I couldn’t believe it was my mother, who was screaming and fighting with the carers. This was a woman who had brought up seven children, fostered several more and at different times, cared for her many grandchildren. Sadly, in her hour of need, she couldn’t and wouldn’t allow anyone to care for her.

My dad stopped the carers coming, as he couldn’t stand the battles. The result was he tried to care for my mum’s needs, something he was not equipped to do and because of his age and frailty, it rapidly exhausted him. The long daily Facetime conversations I had with my dad during the 13 weeks of my mum’s hospitalisation became short, whispered conversations snatched a few minutes at a time, with my dad calling me from upstairs in their bedroom. Conversations with my mum reminded me of being in clinical practice, and eventually became one-sided, as my mum withdrew into herself. I knew that despite my dad’s desire to find a way to keep mum at home, the situation was deteriorating by the hour. I was spending a good deal of time phoning and emailing the social workers involved in my mum’s care, often having frustrating waits while people responded. I did have some success with a trainee social worker called Rhodri, who eventually went the extra mile in trying to help. I think his supervisor must have been patience personified, as he had to seek her permission before enacting decisions that we had taken in trying to improve the home situation.

Late Wednesday evening, I spoke with my dad and he looked and sounded dreadful. He was totally exhausted and had ground to a halt mentally and physically. Thankfully, my mum had gone to bed and was asleep. Very early the following morning I started emailing and leaving more phone messages. The home situation had broken down in only a few days, with a real risk of harm to both my parents.  I needed to find them some respite care. Rhodri agreed that the situation was unsafe and we couldn’t get to the weekend as things stood. However, before anything could be decided a new capacity assessment had to be undertaken. This was despite the fact my mum had, just 10 days previously, been assessed and deemed not to have capacity to make an informed decision about her care.

It was another anxious wait for the assessment to be done and to get the outcome. Early afternoon, I got a phone call from the social worker who had made the assessment, and who somewhat incredibly, told me my mum had capacity and they couldn’t provide any respite care. I almost lost my temper, but didn’t and asked her to provide the evidence that made her think my mum had capacity. She said she asked my mum if she wanted respite care and as my mum had said no, that was deemed proof she had the capacity to decide on her future care. I then spent 20 minutes getting increasingly frustrated by the woman’s intransigence, trying to persuade her that my mum and dad needed to be safe this weekend and that she had to help me make this happen.

Eventually, we agreed to ask my parent’s GP for an emergency social admission to hospital. Thankfully the GP agreed and after an eight-hour wait for an ambulance, my mum was readmitted to the hospital. Speaking with my dad the next morning, he was like a different man, and whilst the future remains undecided, we both agreed that mum was in a safe place. The week’s tension and stress seeped away, which was why a few hours later, I found myself sitting in that café bar watching the world go by. I did wonder if the self-confident me, with all my knowledge and experience of the health and social care world struggled to get things sorted, how would anyone without that experience manage to negotiate their way through the system. It was a somewhat sad and salutary reflection.

There is a lovely postscript to share though. The morning after my mum was admitted, my dad received a call from the senior nurse on the ward to say that his wife had a good night and was doing okay. She took the time to speak with dad and answer his many questions. My dad was impressed with the compassion and care she showed him. Later that day, the same nurse rang me and we had a lovely conversation about my mum, my dad and what the next few days and weeks might involve. It was the caring, kindness-filled conversation I needed to be part of at the end of a fraught week. You know who you are, thank you, kindness matters, always.