24 Words - Disclosure

This is the fourteenth (I know I'm way behind) of 24 blog 'thoughts' throughout June as part of a challenge to honour my sister Anna Murray who died on 20th October 2019. You can read my reflections on my sister here and watch a film I made about her here. If you want to donate to Pancreatic Cancer UK you can do so here. These posts will be short 'thoughts' rather than detailed blog posts. So far we have looked at the words rest, steadfast, hope, mercy, lament, providence, grieve, lockdown, prognosis, covenant, preaching, wilderness, mission and now disclosure. 

Last week the BBC aired a documentary called 'Disclosure'. It was about the ongoing scandal of the Queen Elizabeth University Hospital particularly around the water supply and the ventilation system. It was heart breaking to hear from Kimberley Darroch who spoke about the death of her daughter Milly Main in 2017 from an infection while she was being treated for cancer in the QEUH. What was so shocking about the programme was to hear from whistle-blowers and how they raised concerns time and time again and their concerns were brushed under the carpet.  Anyone who has worked in the public sector will know something of the bravery one needs to speak out against the establishment.  I am so thankful for Dr Christine Peters who was interviewed during the documentary and spoke with great dignity and articulated the concerns of many others about the hospital.  No doubt she bears the scars of speaking out and putting patient safety before her career.  She deserves our thanks and she deserves to be vindicated for her principles.

The documentary and the headlines around the QEUH were no great surprise to me.  As I nursed my sister Anna through her painful and traumatic journey with pancreatic cancer it all culminated in her almost collapsing in Glasgow and being rushed to the QEUH in October 2019.  Up until then I had been in awe of the medical treatment Anna had received at the Western General in Edinburgh. They had extended her life 2-3 times beyond her prognosis and I/we had nothing but admiration for the nurses and doctors who helped her.

Nothing really prepared us for QEUH.  Travelling through every day from Livingston was stressful enough but the whole hospital suffers from a degree of dysfunction. Toilet doors don't fit, communication is poor, departments are completely silo'd, staff are in short supply and I would say the whole hospital is far too big and unwieldy.  Within the system most staff are genuinely trying to do a good job in a challenging environment. I often felt sorry for the staff, many of whom were young and inexperienced nurses who seemed slightly lost and out of their depth.  There was a moment of comedic irony when I went down to get Anna her daily cappuccino one day and was told that the NHS run cafe Aroma didn't allow chocolate sprinkles 'because it wasn't healthy for patients'.

The 6 days that Anna spent in the QEUH were amongst the most traumatic days of my life but I can't even begin to imagine what they were like for Anna.  Almost unable to swallow she kept being presented with sold food and despite repeated requests we were told that the medical and catering departments were completely separate.  What she needed, and what she eventually got at the Accord Hospice, was a tailored and bespoke liquid menu.  When you are in the last few days of life tasty, nutritious food is more important than medication.  But at the QEUH basic care and empathy were in short supply.  Like so much of medical care today  'patient centred' is now interpreted as 'buzz if you need us'.  For somebody who is days from death, dehydrated and weak, this was easier said than done.  Even as a fit, confident and relatively intelligent relative I found myself baffled as to who was looking after my sister and it could take me hours to find answers to simple questions. 

Perhaps the greatest evidence of the dysfunction in the QEUH was Anna's attempt to get paracetamol.  The staff kept bringing in large chalky tablets in and we kept explaining that she couldn't swallow them and she needed smaller capsules.  We were instructed that the NHS couldn't provide these but we were welcome to buy them ourselves.  I found myself buying paracetamol, plasters and cream to rub on her dry and cracked skin.  As the week went on and Anna got weaker and weaker and ate less and less the staff still kept bringing creon's  for digestion.  Anna would secrete these until the staff left.  When she died she had a purse full of tablets.  Nursing seemed to have become little less than delivering tablets with no insight into what they were for or whether the patient was actually eating.

Throughout the week Anna was at the QEUH we thought a hospice placement was being arranged but it was only on the Thursday (5 days after admission) we discovered that this hadn't even started and there was a very fraught meeting with the hospice team on the Thursday before she was eventually moved on the Friday. The events surrounding her transfer were chaotic and distressing but an ambulance was eventually found after I threatened to take her myself.  From getting dressed to being transferred Anna has to wait 5 uncomfortable hours. 

Thankfully the care and love Anna received at Accord Hospice in Paisley quickly erased the memories of the QEUH.  The staff were compassionate, patient centred, flexible and caring.  Anna was reunited with Storm and Shadow and her final 10 days were comfortable and peaceful.  A cheerful chef came in every morning and asked Anna what she wanted (and could manage) and then made her soup, stewed fruit and custard.  She was immediately put on a drip and was re-hydrated.  Her mouth which had caused her huge distress all week became the focus for the staff and they were soon able to clear up the infection.  The staff constantly kept the family updated.  The consultant took me aside at the start and explained his prognosis and allowed me to support Anna through her final days.  Anna died peacefully on 20th October 2019.  The staff at Accord were wonderful with us as a family as we said goodbye to Anna this side of eternity.

A few months later I wrote a long and detailed letter to the Health Secretary and eventually had a meeting with three members of the QEUH management.  I was not angry but I explained our experience as calmly and clearly as I could in the hope that it will lead to changes.  I was promised that staff induction would be enhanced to hear more from patients and their families.  I was also assured that 'estates' would follow up ill fitting doors.  They were very polite and listened to me with patience and compassion.  I hope it will make a difference.

I have nothing but respect for the NHS.  It has cared for my family on many occasions.  While my sister was battling pancreatic cancer my father was in and out of three separate hospitals in Edinburgh and Glasgow before he died this year.  I see the pressures that medical staff are under and I genuinely sympathise.  But what I saw at the QEUH with my sister and also when my father was in Gartnavel Royal Hospital after a stroke was both a lack of basic compassion and a complete breakdown in leadership.  What ever happened to bossy Staff Nurses?  They might have been scary but wards were well organised and young nurses were clear what they were doing.

Dysfunction is fairly common in very large bureaucratic organisations that become almost impervious to feedback and who see whistle blowers as a threat rather than an opportunity to learn and improve.  I also wonder if academia has become the main criteria for nursing rather than compassion and empathy?  This is not to say that the majority of nurses are not loving and caring but during the week Anna spent in the QEUH I never heard anyone ask my sister what she wanted or how she was coping with days to live.  She needed very basic and personal care which was simply lacking.  More hand holding and less tablet delivering was needed.  If this means more staffing and higher taxes its a price I'm happy to pay.  My suspicion is that less waste and better leadership would go a long way to solving the issue.

I don't know enough about health to know if my/our experience was isolated or widespread but I can only hope that the bravery and boldness of whistle blowers will lead to better health care in Scotland.  Compassion and care are the best medicines to make people feel better and they are surely what all doctors and nurses came in to medicine to provide.