My brother Charlie and how we lost him to DI.
Warning: Distressing content. This is one of the devastating stories that is powering our #NoNeedToDI campaign
Charlie was the youngest of four, born 1970; I’m Giulietta, I’m the eldest and there were 8 years between us.
When Charlie was 15 he started getting blinding headaches, lost weight, developed a squint; all signs of a brain tumour. He saw five doctors including a neurologist before the diagnosis was made; the typical response being ‘he’s worried about his O levels’. It was hard for my mother to realise something was really wrong as we had not long lost my father to a heart attack and mistaken treatment for angina. As we know, lightning does strike twice. Charlie had a Grade 4 astrocytoma and was given three weeks to live.
Miraculously he pulled through; although not totally well, including a stroke ten years ago, he enjoyed activities such as skiing (he was admittedly rather a liability on that holiday!), art, photography, 80’s music, cheesy jokes, but sadly not the cricket and sport that he had loved, and no driving.
Latterly, aged 47, Charlie started falling over and we assumed it was lack of muscle tone as he was overweight and reluctant to exercise. He lived with our mother but he needed to live in a younger household which would have given him motivation and more fun; but it was his home.
Charlie’s health complications included the historic stroke, diabetes, poor eyesight, and sleep apnoea. The tumour was in remission, but due to the 1980’s surgery he had no hypothalamus and no pituitary gland, leading to DI. He had been on Desmopressin for 33 years.
Charlie was admitted to GWH Swindon with low sodium in early September 2018 and to begin with, was doing well. He was on what was termed ‘the endocrine ward’.
I had, I thought, fulfilled due diligence by contacting his endocrine professor in London to put him in the picture, who told me ‘Swindon should be a good team but contact me if you have any concerns’. The irony was, I only knew there were concerns when Charlie was found in an irreversible coma and by the end of that same day he was dead.
The hospital reduced his Desmopressin that week and his sodium levels rose. Mid-week they decided to catheterise him and monitor his fluid levels. When his fluid output reached x, then it would trigger a Desmopressin dose. In the week he suffered an adrenal crisis possibly triggered by an underlying infection but he recovered from this and they were expecting him to go home the following Tuesday. It is worth saying that my mother did not communicate with hospital staff as she is adamant she does not want to waste their time. At the same time, she is the first person to say that one needs to communicate to hospital staff what has happened shift to shift and not rely on them reading the notes. Not sure what happened there - stress I think. However, she was good at getting him Desmopressin on the odd occasion over the years that he had run out of pills. She thought, understandably, she could trust the professionals.
At the end of that week, on Friday the consultant left a handwritten care plan for Charlie detailing the above but unfortunately this was illegible. Blood test regularity dropped off and from that point neither the medical staff nor any of the nursing teams appeared to realise he was dependent on Desmopressin, and also that he was not up to being his own advocate.
Further to this, the nursing team handovers failed over several shifts, and later they admitted ‘Chinese Whispers’ had happened with the handovers and nobody knew what Charlie’s care should be. They had a new electronic system - which nobody was using - and the handwritten notes were illegible. Furthermore, nobody appeared to be given responsibility for administering Desmopressin, and nobody took overall responsibility for Charlie.
I felt that they brought him cups of tea but were sleepwalking through his ‘care’ while he was dying before their eyes. Of course, we had no way of knowing this and the crucial damage happened over Saturday night. This was originally blamed on one agency nurse, but Charlie’s records revealed the neglect happened over a period of just under two days.
I went to see him on Saturday 8th September. He was in good spirits, singing Blondie, cracking bad jokes, and doing crossword clues but unknown to me the staff had not been measuring his fluids properly - his actual fluid output is unknown and his serum sodium was already rising steadily and invisibly. I told the nurse that his fluid bag was extremely full and which she remarked upon as she removed it.I did not know that his fluids were meant to be recorded and that Desmopressin should have been given. I said good night and the only unusual thing I noticed was that he was falling asleep as soon as I left.
The next day, Sunday, all the family were going to the hospital to tell Charlie and my mother that he was coming to live with us in Dorset. My mother was really not coping at all with things like helping him shower, his diet etc, and with the stress of him being ill was making her revert to the breakdown symptoms she showed when my father died, screaming at us and so on. However, the pair of them were both afraid of changing their world and my mother, of being alone. I remember thinking how many elderly couples (or in their case, a team) must be like this.
On the journey up to the hospital, I had a call to say that Charlie ‘had been found unresponsive’. It emerged that on Sunday at breakfast time they thought he was asleep and had left his medication by his bed and left him as they thought, ‘asleep’. On his notes it was recorded erroneously that medication had been given. I found this out when I was trying to establish exactly when he would have gone into coma and who last saw him conscious. I think that person was in fact me, the night before.
We spent the day with Charlie in his coma, thinking he would pull through although we found out later that all the staff knew that he was dying, that the levels of sodium in his blood meant that brain damage was pretty much a certainty and that it was irreversible, but they did not communicate this to us. Had we known this, the family would never, ever, have left him to die alone.
The family left but thankfully I stayed on and read him messages from old school friends. Suddenly his oxygen dropped and that was it. I can’t say the nurses tried very hard to help him but my mother had signed a DNR form earlier that day (part of the not coping, was thinking he was dying all the time) and I had resolved to reverse it that evening. In the circumstances it was the best thing for him. I had to call my sister, tell her to return and get my mother. My brother Alex reacted badly and we did not see him for 2/3 days. A cousin eventually located Alex and brought him over.
While I was waiting for them, I wondered ‘What killed Charlie?’ There was talk of an infection and pneumonia but, bar chestiness which I felt was dehydration, he had no pneumonia symptoms. Charlie was on the same medication as my husband except for Desmopressin so I knew he should not be dead and that the problem had to lie with the endocrine system, and that the medical notes would hold the answer.
It took me nine whole months to obtain Charlie’s medical notes. I don’t know if it was perverseness or incompetence and I was sent notes belonging to other people, but strangely the long and repeated obstruction in getting the medical records was the most stressful part of this whole tale.
Halfway through the nine months of trying to get the records, I met Charlie’s consultant. I had been waiting for the notes so that I would know what questions to ask, but I attended without notes because she was about to go away. She admitted that ‘an agency nurse’ had not done her job (although later I found that EVERY nurse had not done their job. Possibly not their fault I might add, but management failings.)
I asked her why the family had not been told. She replied ‘we tell them if it’s something big’. I replied ‘it IS something big’. Every communication afterwards with hospital staff compounded the false story and Charlie’s case was eventually escalated to a Serious Incident.
When the notes finally arrived, I saw that Charlie had died with a stratospheric sodium level of 188 mm/oL. Charlie’s endocrine professor, without saying too much professionally, gave me clues as to which way to go. A very kind surgeon friend has helped with marshalling the important facts and with hospital meetings. I rejected the Serious Incident report as inadequate.
I am now talking to the new chief executive of GWH and he has put many good measures in place to stop this re occurring. It has taken a LOT of research and patience to get to this point. I had a lawyer ready with a cut and dried negligence case but I’d like to get concrete improvements in preference to a lawsuit.
To their credit, after meetings, GWH have put many nursing changes and post-death measures into place (such as a medical examiner) but I’m looking for more preventive measures as DI is an invisible condition and an invisible killer. They have tightened up nursing and handover procedures and promised that DI patients will be escalated to the higher dependency unit straight away. They will contact the patient’s endocrine consultant upon admission.
It is shocking that a hospital problem (and they are very open about this) is cultures or a culture that does not tell the truth. I find this difficult to accept as I would never dream of not telling the truth even if I had to face up to my mistakes, but you can see how it might happen. How can professionals who are traditionally held up as pillars of society behave like this in the UK? How can the organisation be run with probity?
I have not told my mother as it would be too upsetting. She already says she has two broken hearts; one for my father and one for Charlie.
My brother and sister know ‘something is going on’ but we hauled my brother Alex through a very difficult time three years ago and I think he doesn’t want the stress. My own family know, and nephews and nieces.
It’s a strange anomaly that some people can deal with death but they don’t want to deal with a complicated death. One needs to be cool headed and emotionally detached, and that I can do, because we went through his expected death many times all those years ago.
To my mind it was inconceivable that I would not find out what had gone wrong (Charlie would have been extremely upset to know his death through negligence was brushed under the carpet) and without wishing to make things difficult for GWH, make improvements for future patients.
What would I say to anyone in our position?
- Ensure a family member with logical mind has a grip on the situation and has read the notes.
- The hospital must at the outset contact the patient’s regular endocrine consultant.
- Ensure that every shift knows the importance of Desmopressin to the patient, even if they say they are an endocrine ward.
- Check that weekend care is adequate.
- Use personal identification saying that the patient has DI
There is no need to die.