We only met two minutes ago but you already think you know everything about me.
The guest post you are about to read from a good colleague details an incredibly troubling account of the health system’s approach to the care of a very distressed and poorly young person with disabilities. This post illustrates the challenges that many parents and/or carers face every day when trying to get help for their loved one with disabilities and why there is an urgent need for change.
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After spending several months shielding from Covid-19, mid-July my daughter (C) became unwell. Not with Covid-19 but with a neurological issue, inter cranial hypertension. A condition that was new to her and added to her already complex medical needs. I had lived in fear of Covid-19 for many months, as both C and I have health issues which placed us on the Government vulnerable list.
C started to indicate she was unwell, by repeatedly tapping her body, not sleeping, not eating, and generally looking distressed. She was not her normal self at all. As she is nonverbal, she could not state where the pain was but as her mum of 17 years, I knew something was very wrong. C has complex medical needs and was awaiting orthopaedic surgery (postponed due to Covid). I initially thought there was something wrong with her foot and/or leg and took her to A&E. She had been tapping in that area and her knees had become bent, as though her legs were going to collapse.
On our first visit to A&E on the Wednesday, there were no observations, as C was very distressed – she would not allow them. I now know she had visual disturbances and was probably seeing double – coupled with the severe pain in her head, it is no wonder she did not want anyone anywhere near her. Instead x rays were carried out, and a pot was then placed on her leg, with the assumption it was her foot causing the issues. C was still in considerable pain, and very agitated. I did not know how I would deal with her pain or help her on returning home and requested that we stayed in hospital, but this was not allowed. I thought that her pain needed to be managed in hospital, and I had a gut feeling there was something else wrong with her. Instead, she was sent home with some paracetamol and morphine for me to manage her pain at home. She was then listed for surgery in two weeks’ time, as an emergency. However, as I will now discuss, the foot was not the issue.
Knowing now that C had a neurological issue, she must have been wondering why a pot had been fitted to her leg when her head was the major issue. She must have been so confused and distressed as to why no one was helping her. It breaks my heart to think about it. I feel that I failed C, friends have said that I did not, that I did all I could, but it plays on my mind every day. I certainly did try that day to get her admitted but with no success. I am upset that I did not fight harder to get her admitted but what else could I do. Instead, we went home with C still very agitated and in pain. After two more days of distress, agitation, and no sleep I took C back to A&E. She had now not slept for over a week. She had spent the last two nights pacing the hallway (even managing it with a pot on her leg), refusing to go to sleep or even get into bed. I now know that she did not want to lie down because of the incredible pressure in her head. Whilst she could not verbalise her pain, this was her way of telling me that she was unwell. C normally loves her bed – often lazing around all day if she could, so it was very unusual for C not to want to get into her bed (a fact I repeatedly told the doctors, but this was dismissed).
Two days later, and we returned to A&E. As C was so distressed no observations could be taken. Morphine was given to try and calm her down and reduce the pain. It did not calm her down, so no observations could be taken. I spent some time with the doctors explaining how the teenager they were seeing was not presenting as she normally would. I spent time going through recent videos illustrating the more mobile, happy, engaging teenager that she was. Thankfully, th doctors then understood that she was clearly unwell and admitted her. Thank goodness for the advancement of technology, because without the video evidence of how C normally presented, I do not think they would have believed me. Over the next two weeks, I had to repeatedly show video evidence to illustrate that C was not normally like this. This is a sad reflection of how those caring for children or adults with learning disabilities and/or disabilities must go out of their way to prove that they are unwell. It should not be necessary.
Despite being admitted on the Friday and the doctor stating that neurology would see her the following day, it was not until two and a half days later that neurology came to see C. By which stage she had been awake another full 48 hours, pacing, tapping, refusing to drink, becoming more and more distressed, and undoubtedly in excruciating pain. Neurology were insistent that it was just challenging behaviour and that I had to face up to the fact that those with learning disabilities start to become more challenging as they get older. I had no other choice but to go into battle mode for my daughter.
At this stage, trapped in her world, C watching on as the doctors discussed her, she must have been thinking and wanting to shout out –
I do not have challenging behaviour, there is something wrong with my head and I cannot see properly. I am in agony. Stop thinking that just because I have a learning disability everything has to be ‘just a challenging behaviour’. I am human, I have feelings and I do experience pain. I experience illness as everyone else does, I am expressing that illness the only way I can. Treat me the same as everyone else and stop thinking you know everything about me, as you only met me two minutes ago. Why are you not listening to my mum? Help me.
I was distressed and tired, I thought that the doctors and nurses were simply thinking, I was just a mum that could not cope with a disabled child with challenging behaviour. I had never seen C so distressed; she was clearly expressing her pain through her behaviour. A point enforced by the learning disability nurse who thankfully came into the room during the neurology appointment. Finally, the neurologist agreed to do an MRI and Lumbar Puncture (LP) but not as an emergency. They insisted we could go home and come back as a day patient and that they were very unlikely to find anything wrong. Repeatedly they stated how it was just challenging behaviour. I refused to leave. By this stage, C had not slept for over a week, she was wetting herself, starting to lose the ability to walk, I did not think she could see properly as she was no longer watching the TV or playing on her Ipad and she had stopped signing to me . She also refused to drink over those initial days and I thought going home was totally inappropriate. They finally agreed that we could stay but there would be no rush to do the MRI and LP. During the next few days, due to a lack of fluid (no fluid records were kept) and due to her deteriorating condition, C got a raging UTI (she has had previous renal failure). She was finally given fluid via a line but now had temperatures over 40, and this undoubtedly caused increased pain and distress. By the time they did the LP over a week after I had first brought her to A&E, C had lost the ability to walk, to sign or engage with anyone. C had raised CSF pressure of 38.5, which was drained during her LP. I was told they were surprised to find something wrong with C. I told them a mum normally knows their child very well (especially a child who is nonverbal) we received no apology. If they had taken time to understand C, then they would have known that she was very unwell and, I think, they would have acted sooner.
I am incredibly sad it took over a week for them to help C. I am heartbroken that she was left in pain for so long. C was no doubt thinking or trying to communicate, why is no one helping me, why am I being left in such excruciating pain. I am terrified of the future because I will not always be there to be her voice, to be her advocate, then what? Then, I strongly fear, she will be added to the list of avoidable deaths in the Learning Disabilities Mortality Review (LeDeR). As it is, she has not returned to her normal, she has considerable difficulties with her balance and walking. I am very scared for her future, the constant need to justify the way C communicates and what it means. I know there will be many battles ahead in the coming months and years. No parent and/or carer should live with this constant fear. No child or adult with disabilities should be left in excruciating pain or left untreated because so many medics have a complete lack of understanding and think that they know that person and their condition better than anyone else, despite often, only knowing them for a matter of minutes.
Now following discharge, C cannot sit up on a chair as she did before, she struggles to balance, she cannot feed herself as she did because she cannot balance and she walks down the hallway as if she is on a ship, arms outstretched feeling for the wall. She is not eating as she used to do or drinking as much fluid. She looks very sad, pale and at times unwell. I have raised this with the neurologist only for them to confidently say it is just … ‘her mental health’. They did not know C before this event. She is not her normal self. I am already having to enter the next stage of battle mode to try and get her the help she still needs (enlisting social workers, TAs and Doctors to empthasise that C was not like this before her illness).. C has a learning disability, but that does not mean that it is acceptable for her to be left in this state.
Learning disability nurses and the lack of them
Often Children’s Hospitals only have one learning disability (LD) nurse or none. They only work office hours. If there is only one LD nurse, when they take leave, hospitals are left with no LD nurses. Nurses on the ward had no learning disability training and no sign language training. Without me by my daughter’s side no one could understand her communication. There is no translator as there is for those whose first language is not English. One evening just before C’s LP I overheard the nurses stating that C just had challenging behaviour, this was incredibly upsetting to hear, and illustrated how those with disabilities can receive unfavourable treatment due to a complete lack of understanding. This whole situation would not have happened if doctors and nurses had received training in disabilities. But there is only a certain amount one LD nurse can do by herself covering an entire children’s hospital.
There is an urgent need for more LD nurses – children or adults with LD do not just come to hospital during office hours, they can present at A&E any day of the week, at any time, just as anyone else does. They deserve equal treatment, understanding and empathy. This is only achievable if medics are trained in learning disabilities and receive equality training, it is imperative that universities implement this training. Further, hospitals need to urgently increase the number of LD nurses, ensuring no gaps in cover, thus allowing support 24 hours a day, 7 days a week.
Photograph of Marloes, Pembroke.