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.