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Edits which were cut from my Book/Memoir
July 30, 2018
In writing my memoir of the journey I have been on there were very important criticisms of my care at the NHS which my publisher cut as they thought should not be included. However, having just been invited to present at Frontiers of Traumatic Brain Injury at St. Mary and Imperial College London I requested my Dad to present the issues he had with NHS care which made the NHS managers realise and think differently about way care is given. I feel that this reflection is an important reflection to allow the greater standards and reflection for the NHS to allow greater standards to be realized and provided more effectively. The final book/memoir can be found through Amazon as Ben Again - The inspirational Memoir of Traumatic Brain Injury Survivor. Available through your local Amazon in whichever you local Amazon is to you are both Hard and Soft copies available. Please leave a reviews of this book as you see fit!
Below was the comment from my Dad on the care of the NHS which could be easily rectified through Management changes to the way that services are handled:
'while we were in the Dominican Republic we always felt that things would be sorted then when we could get Ben home into the care of the NHS. As it turned out nothing could have been further from the truth. From our inauspicious arrival at Princess Royal Hospital to Ben's return home and our subsequent involvement with the rehabilitation team things consistently fell short of our expectations.
We never did manage to ascertain who was responsible for Ben's care in the intensive care unit. The doctors who were on duty always seemed reluctant to find time to speak to us, in complete contrast to our experience in the Dominican Republic. When we arrived the air ambulance team had a huge bag of drugs that had been administered to Ben in the Clinica Corazones Unidos, including a cocktail of antibiotics to tackle his latest lung infection. Soon after Ben's arrival we were informed by the doctor on duty that day that it was not NHS policy to prescribe more than one antibiotic at a time, due to the potential for developing antibiotic resistance. Consequently all antibiotic treatment was discontinued, and within three days Ben suffered a collapsed lung. Since it was a weekend it then took several days for his swab to be analysed and the appropriate antibiotic prescribed. In the Dominican Republic we had been used to receiving the results on the same day, something which appeared to be impossible in the UK, even on a weekday.
The nursing care he received in the intensive care unit was generally pretty good, and we very much liked some of the individual nurses who worked with him. However, they were all on three 13 hour shifts per week, and when a previous nurse returned to duty there seemed to be a policy to assign them to a different patient. As a result he very rarely had the same nurse twice and we felt there was a lack of continuity. When we questioned this we were told that all the necessary information was contained within his notes, but it was very clear to us that the notes were no substitute for direct contact with Ben. On one particular occasion it was apparent to us that despite the fact that Ben was still unable to communicate with us, he was very uncomfortable with his catheter which he kept on trying to remove. We pointed this out to the nurse on duty at the time, who was relatively inexperienced. We left at 4.30 that afternoon, only to discover the next day that it wasn't until 11:30 pm that they realised his catheter was blocked, and when it was removed he passed 1.4 litres of urine, compared to an average bladder capacity of 0.4 litres. From that day on I could not get to sleep at night without first ringing the hospital to check that Ben was comfortable last thing at night.
Most days I visited Ben three times, at 11 pm, 2 pm and then again in the evening. After he moved to the rehabilitation ward he no longer had direct nursing care but instead was supervised by a nursing auxiliary, most of whom were agency staff. He had been put into a separate room due to his restlessness which required constant supervision. In intensive care he had been given a tracheotomy to assist his breathing which had by now been removed, but he still had a nasogastric tube by which he was fed. This was very uncomfortable and Ben repeatedly pulled it out. Few of the nursing staff had the skill to replace this, and on one occasion Ben went 14 hours without food or water. We were called on to assist with the reinsertion of this tube as staff felt they could not do it without our help.
One thing which was helpful was that the nursing auxiliaries were required to make a note every 10 or 15 min throughout the night reporting on his condition. Looking through these it became apparent to us that he would be very restless if he had not passed urine just before the night began. We were then able to tell the auxiliary staff to make sure that he went to the toilet just before lights out. This made a big difference to his sleeping pattern, but again we soon learned that that the notes alone were not sufficient to ensure that this was acted upon. Consequently we wrote a large sign which we sellotaped to the arm of his pay TV giving this instruction. We also continue to phone the ward at 11 pm each night to remind them as necessary.
After 10 days in rehab Ben still had a plaster over the hole in his throat where his tracheotomy had been, and this had not been changed and was beginning to discolour. We suggested to the nursing staff that this should perhaps be looked at, but no one duty on the ward felt they had the expertise to take any action. The following day I decided to remove it myself, releasing a gob of green pus which had been building up for some time. Fortunately Ben’s scar had healed over nicely despite the lack of any monitoring.
The nursing auxiliaries were again quite variable in their initiative and expertise, and we frequently had to ask for somebody to wash Ben and help him with his personal hygiene. Given the frequency of infections in hospital we would have thought this would be a high priority, but that was not the case. On his return from the Dominican Republic Ben had been put in an isolation room in intensive care as they thought he would be full of dangerous bugs, but in fact the only persistent one he acquired was MRSA in the Princess Royal.
During our visits to the rehab ward we got to know other relatives visiting their loved ones, and their experience was similar to ours. One elderly gentleman, visiting his wife who had suffered a stroke, was consistently distressed at the lack of basic care she received. We also got to know another family whose son had suffered severe brain damage in a traffic accident, and they made a formal complaint concerning the way their son was mishandled with a complete lack of awareness that part of his skull was missing.
Most of the other inmates were stroke victims, and we often wondered how those with no family to support them could survive in this environment. It seemed to us that their distress would often go unrecognised.
There were, of course some, bright spots in all this, and some wonderful individuals who supported Ben. Sharon and Nicky were two regular nursing auxiliaries who took a shine to Ben and would always go out of their way to pop in to see him, and give advice and support to whoever was supervising him at the time.
Ben's Australian speech therapist helped him learn to eat again and gave us some good advice about how to help him recover his memory. In contrast, Ben was hugely irritated by the occupational therapist who engaged him in tasks which he felt were pointless and at which he could only fail.
However the stars of the show were undoubtedly the physiotherapists who helped Ben walk again. This was a slow and laborious process broken down into a sequence of small enough stages to ensure that Ben achieved something at every attempt. I will never forget my hot tears splashing on the physiotherapists white tunic as she bent beneath me to guide Ben’s feet as I supported his arm as he took his first few steps. The day he managed to walk from the physiotherapy room the length of the ward back to his room, supported by a physiotherapist on either side, his long hair bunched up like a samurai warrior on the top of his head, was probably the proudest day of my life.
Ben returned to live to live at home soon after Christmas, but we had to wait almost 2 months for the community rehabilitation team to begin their three-month programme of work with him. This is offered to most patients leaving the unit at the Princess Royal Hospital who have suffered neurological damage of one kind or another. It is a multidisciplinary team led by a key worker who in our case was a clinical psychologist. The other professionals included a speech therapist, occupational therapist, physiotherapists and a sessional worker (Jo) who implemented these programs recommended by these professionals with Ben. Once again we found that while the physiotherapists and the speech therapist stood out as being very skilled, the other professionals fell short both of our expectations, and of Ben's. In particular Ben was irritated by the clinical psychologist who led the team. Her first response to him was to administer a standardised questionnaire to assess his general mood and self-image. This included a number of leading questions such as "Do you sometimes feel you are worthless?" This negative line of questioning irritated Ben immensely as he felt suggested to him that he should feel worthless. One of the characteristics of frontal lobe damage, which Ben had suffered to some extent, is that people become more forthright and outspoken in their opinions. Ben did not hold back in his criticism. This was later reinforced when she led team meetings in which Ben was talked about instead of being fully involved in the discussion. As educational psychologists ourselves Jenny and I were both embarrassed for our profession. Ben took the unilateral decision to “sack” her as a member of the team, and she was replaced by the speech therapist for whom we all had a great deal of respect.
Overall the rehab team did their best with Ben, with Jo, the sessional worker working with him for several hours most days. This was supplemented by Andrew, funded by social services, who had begun work with them while we were waiting for the rehab team to fit us into their schedule. With hindsight it is difficult to assess the value of the input of this team. They dominated our lives for three months, and objectives were set but rarely evaluated and few were achieved. Their involvement was terminated after this set period regardless of progress, as this was the time limit imposed by NHS management.
What's wrong with the NHS?
Before Ben's accident we had total faith in the National Health Service and would have defended it to the hilt. We still believe that there should be equal access to free health care for all, regardless of individual circumstances, but it has become apparent to us that the system is failing in a number of respects. Since Ben's accident there have been media reports concerning the disproportionate number of deaths in hospital over weekend periods, when senior consultants are not available. There have also been a series of reports of the neglect and abuse of the most vulnerable patients in our health care system, and we witnessed both these during Ben’s time at the Princess Royal.
The increased death rate over weekends is an unforgivable characteristic of an archaic and outdated system of health care dominated by senior doctors. When I was working as an educational psychologist in a multidisciplinary team in Brighton in the 1990s, which included consultant psychiatrists, our senior consultant would often see private patients in the shared building in which we all were housed. When I questioned this, I learned that this was part of the contract for senior consultants, who were able to use the premises and other resources provided by the NHS for their private work. My contract did not allow me to carry out any kind of private work whatsoever, which would have been seen as a conflict of interest. In addition, had I ever used resources provided by my local authority, I would have been subject to instant dismissal.
Whilst there may have been some reforms to the system since then, I know that most senior consultants spend a large part of their time working in the private sector, reducing their availability to NHS patients. Their lack of availability over weekends is not just because they want their weekends off, but also because they have to fulfil their private duties. When I have spoken to some of them about this they tell me that despite their large NHS salaries, they have to do private work to pay their children's school fees. This reinforces the view that we are a class bound society that perpetuates many inequalities.
One particular theme that ran through our experience with the NHS was the lack of ownership and personal responsibility for Ben’s care and well-being. Of course there were outstanding individuals who did all they could for him, but too often it was apparent that there was no overall responsibility or oversight of the system. As well as neglect of individuals we also witnessed wastage of resources.
Our disillusionment has been reinforced by our experience with our GP, who, while he has always responded to our requests, has shown no interest and taken no proactive action to promote Ben's recovery. Perhaps we expect too much of our general practitioners, but that doesn't detract from our disappointment.
What is also very difficult to fathom is that this contrasts so very much with our experience in the Dominican Republic. Yes Ben was in a private clinic there, paid for by his travel insurance, but the standard of care he received in this developing country far outstripped the care offered by our NHS, which our experience suggests is more third world than first world.
To parody John Burningham’s children’s story “Mr Gumpy’s Motor Car”:
“Not me” said the consultant, I’m off to my private clinic
“Not me” said the senior nurse, the consultant hasn’t told me
“Not me” said the clinical psychologist, I don’t have an appropriate test
“Not me” said the staff nurse, it’s not my job
“Not me” said the nursing auxiliary, I haven’t had the training
“Not me” said the occupational therapist, he’s not geriatric