D-G-Seamon [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)%5D, via Wikimedia Commons
Warning: this is a long post, but I feel the story needs to be told in its entirety.
The NHS has no bigger fan than I, and that’s why I support our junior doctors in their desperate fight to save our most treasured national asset from being stuffed into the trouser pockets of the Secretary of State for Health and his cronies. Two of my daughters owe their lives to the NHS after being born prematurely. And while it can have its faults (my ex-husband’s treatment while he was dying was utterly disgraceful) when I compare our lot with that of friends living in the USA I know how vital it is that we rescue this precious boon before it’s too late. I have never had to beg friends to help fundraise for my child’s wheelchair. I’ve never been threatened with having to sell my house to cover the costs of the local hospital having saved my spouse’s life. I’ve never had to marshal all my friends to donate blood on my behalf because I hadn’t the means to pay the hospital back for the blood transfusions that had saved my life – all things which friends and family of mine in the USA have had to do.
But there is one area where the NHS is letting us down badly – specifically, letting down one group of patients, but ultimately letting society down, too, by teaching us not to value or esteem the worth of this particular sector of our community. I am talking about patients with learning disabilities. In over 32 years of parenting someone with a learning disability, I’ve seen the best and worst of treatment meted out. I’ve seen orthopaedic surgeons whose eyes light up at the chance of getting another operation under their belt in the race to become the acknowledged expert in that procedure. And I’ve seen orthopaedic surgeons patiently, over a number of appointments, taking the time to get to know my child really well and make the best informed judgement that they can about what is really in her interests, including at times deciding not to operate. I’ve seen planned appointments done so well that everything possible was put in place to mitigate my child’s fear and anxiety in the unfamiliar and terrifying situation that she found herself. I’ve seen consultants fight with every weapon at their disposal to stop a social worker forcing through a decision that would undermine my child’s medical treatment. I will forever be grateful to our local ophthalmologist who moved heaven and earth to save my daughter’s sight, and to the orthopaedic surgeon who took the trouble to learn her “trigger” words and avoid using them in front of her, leading to highly entertaining conversations about a “sharp pointy thing” to avoid using the word injection!
But my experience also bears out the stories that we hear again and again from families, that when their family member with a learning disability presents with a medical emergency, the system lets them down, partly because of a lack of training of A&E doctors and partly because of a culture that devalues the lives of people with learning disabilities. The shocking statistic has recently been revealed that people with intellectual disabilities are three times as likely as the rest of us to die prematurely from preventable causes, and that hospitals are refusing to investigate these deaths. I am regularly invited to write “do not resuscitate” on my daughter’s medical notes, something I have never been asked to do for her sisters whose general health and life expectancy is the same as hers, but who have no disabilities. (See https://www.change.org/p/health-secretary-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives).
One of the features of autism is an inability to cope with change, and often the response to this is an autistic meltdown, sometimes accompanied by self-harm, which can lead to a medical emergency. Autistic people in mid-meltdown are generally treated as if they are having a tantrum and ought to stop the behaviour at once. But what is little understood is that when an autistic person is having a meltdown, it is not something she is doing, but something that is happening to her. Brain scans have shown that an autistic person in mid-meltdown displays the same electrical brain activity as someone in the middle of an epileptic seizure. They can no more control what they are doing than the seizure patient. Yet I have heard care staff refuse to sympathise with meltdown injuries because “it’s her own fault” – something they would never say about an epilepsy patient who fell and sustained a head injury during a seizure.
The first time I realised my daughter was blind in one eye was when she developed a cataract which suddenly appeared over the course of a fortnight. She had recently changed school and was now boarding away from home and came home at weekends, a major life change which an autistic child would find exceptionally hard to deal with. Frequently, during the course of a meltdown she would punch herself in the eyes, often resulting in extreme swelling of the eyeball. Because she continued to drive herself competently in her powered wheelchair, no one realised that she had lost the sight of her right eye. When the cataract developed, she was passed from the doctors near our home to the doctors near her school and back again until finally, after a lot of shouting on my part, she was seen at a hospital near her school. Examination revealed that her retina had obviously been detached for a long time, and she had probably had no sight in that eye for months, if not years. It was decided, correctly, I believe, not to remove the cataract as this would now be a purely cosmetic procedure.
Ten years later, in the course of struggling to adapt to change, with leaving college and moving permanently into a care home just five minutes from home, she again blinded herself, this time in her one remaining sighted eye. I rushed her to A&E. Incredibly, the doctors weren’t interested. I’m convinced that anyone else presenting with a detached retina in their only sighted eye would have been admitted and operated on within twenty-four to forty-eight hours. No amount of pleading on my part made anyone in the A&E department treat this as an emergency, even though it was obvious that she could see nothing at all, even familiar objects held quite close to her, and was beyond terrified at being plunged into this world of darkness. It was December 9th. In the end I was sent away with an outpatient appointment for the end of January.
Back home, I made frantic phone calls, trying to speak to the ophthalmologists’ secretaries, desperately trying to get someone to see that if this was left untreated for 7 weeks it would be too late to save her sight. Finally, in desperation, I loaded her into the car and, together with her keyworker, drove to Moorfields eye hospital, only to be told that they could not see her because they were not equipped to operate on someone whose disabilities increased their risk for anaesthetic. However, they did phone our local hospital and at last we were given an appointment for the following Monday.
That was when we met our wonderful local ophthalmology consultant who immediately grasped the urgency of the situation, admitted her as an emergency, and in a 3 hour operation delicately repaired and reattached her detached retina which was also torn in five or six places. He has followed her up every six months since then, has removed a cataract from the eye which developed a couple of years later, and makes sure to see her frequently enough to pick up any problems at a very early stage should they begin to develop. I cannot praise this consultant highly enough but what a contrast to the casual attitude in A&E which appeared to assume that sight does not matter if you’re already intellectually impaired. The stress to a parent of realising that your child has become blind and no one thinks that it is important to try to restore her sight is unimaginable.
This month we’ve had a parallel experience. About 5 weeks ago she suddenly started asking to go to the dentist – unheard of! Because of her extreme fear of medical procedures she was reluctant to let the dentist look, but the dentist did manage to spot a gum abscess, and prescribed antibiotics. Over the next week, her pain spiralled out of control, with a massive increase in self-harming behaviour. The antibiotics were doubled, still with no effect. At the next dental appointment the dentist could see the sepsis spreading, and warned that it could encroach on her eye (the sighted one). Mild painkillers were prescribed.
A week later, another dental appointment. This time the dentist could clearly see loose teeth, a sinus draining pus and an abscess. She took her temperature which registered at 40. She got the care staff to take my daughter out so she could have a quiet word with me without alarming her, and explained that the loose teeth would have to be extracted and the gum cleaned out with antiseptic. Obviously a patient who was too anxious even to let a dentist put a mirror in her mouth would have to have this done under general anaesthetic. She wrote a letter then and there, gave it to me and instructed me to go to A&E and hand the letter to the A&E doctor. We duly showed up at A&E with my daughter quiet but highly anxious. The young A&E doctor looked very uncertain as she surveyed this patient in the wheelchair with the odd way of talking and the unpredictable reactions. She read the letter and attempted an examination which had to be abandoned because of my daughter’s reaction of extreme fear. I explained that the high risk of self-harm included the risk of permanent blindness, as she had been hitting her eyes again. The doctor said she had been able to see the draining sinus and loose teeth and added, in front of her, “We’ll have to take those teeth out. I’m not sure if we can admit her now. I think we’ll probably send her an outpatient appointment, I’ll go and see.” Then she flounced out of the room, leaving those words “We’ll have to take those teeth out” sinking into my daughter’s consciousness. Of course this possibility had never occurred to her. She didn’t know it was even possible to take teeth out. And I had avoided telling her because I wanted to be able to explain the procedure to her in simple words at the last possible minute, to minimise her anxiety. We were left sitting in that room for an hour and a half with my daughter screaming, hitting, biting and scratching herself with a combination of terror and dental pain. It took the two of us desperately working together to try and keep her safe. At the end of that time, the doctor reappeared and told us to go to the pharmacy to collect another prescription for antibiotics which she would drop off there, and then to go home and await an outpatient appointment through the post. Later the dentist phoned me and just could not believe that, despite her letter, her patient had not been admitted for urgent treatment.
The following evening I received a call from the care home. My daughter was completely beside herself with pain that was totally out of control. She had destroyed her computer and was hitting herself so badly that they had no choice but to sedate her for her own safety – very much a last resort. I contacted her GP who prescribed stronger pain killers – so strong, as it turned out, that my daughter couldn’t keep them down. The next few days were a nightmare of trying to get enough paracetamol and ibuprofen down her to at least take the edge off the pain. Her temperature hovered around 39-40. The care home instituted a round-the-clock watch to try and prevent her self-harming. Nonetheless, by the time the outpatient appointment came round five days later she presented in the clinic with black eyes from self-harm. I pointed them out and described her history of severe self-harm. The consultant confirmed the diagnosis of the dentist and A&E doctor (the care home staff had been getting her to practice opening her mouth wide, so though she wouldn’t let him near her, he still got a reasonable look). The consultant agreed that this needed treating urgently but added that urgent meant weeks rather than days. I pointed out the black eyes again, and warned him that if this was left for weeks she would in all probability be permanently blind before it was treated. He was unmoved. Again the dentist phoned later in the day, and again was utterly incredulous that the patient hadn’t been admitted and treated as an emergency.
The appointment came for 2 weeks later, but in the meantime her pain and anxiety was so completely out of control it was becoming impossible to keep her safe, even with sedation, which had completely stopped having any effect. On the Friday the care home manager phoned 111. They contacted the GP who came to visit at lunchtime, then went away to phone the hospital and request immediate admission. The oral surgery department promised to phone back. The doctor waited at the surgery until 9pm but the call never came. The manager called 111 again in the afternoon, and the on call GP rang back. Again she contacted the hospital. Again they promised to return the call but never did. Finally the manager rang 111 again. The on call GP spoke to the oral surgeon and explained the situation and the need for an immediate admission. The oral surgeon was just going into theatre and said he would phone the care home as soon as he had finished. I waited at the care home half the night for the call that never came, and finally went home and slept with my phone in my hand but it didn’t ring. My daughter was given a sedative at 7pm because of the degree of self-harm, and finally fell asleep at 6am.
The next morning we again dialled 111. We were told to take her to A&E at our local hospital. We objected – as there was no maxillofacial department there, it would be pointless to go there with her. We were told we must take her there. The care home manager, who had given up her bank holiday Saturday off to try and sort this, came with me to A&E. On arrival we were told there was no point having taken her there because there was no maxillofacial department and we replied, “We know.” We were told to take her back to A&E at the hospital where she had already been seen. The manager explained that she had already phoned them and been told the department was closed and no surgeons were present. The nurse replied, “The department may be closed, but I guarantee there’s an on call oral surgeon available, and you need to take her there.”
At this point my patience completely ran out. “Why would I take her there?” I asked. “Their maxillofacial team has made it abundantly clear they don’t give a toss about her. Why would I trust them to operate on her?” I suggested taking her to another nearby hospital which I knew had a maxillofacial department. The nurse persuaded me that if we went to A&E there, they would ascertain that she had already been seen at another hospital and would refuse to treat her but insist on sending her back to the hospital that had already seen her.
Reluctantly we went back to A&E at the first hospital, where we were told that they probably wouldn’t treat it as an emergency and we would probably have to wait two weeks for the appointment we’d already been given. I reiterated my fears that she would have blinded herself again by then, and that it was inconceivable that someone could be condemned to lose their sight just because no one would treat their oral pain and the sepsis which was, by now beginning to affect her ears and throat. At this point, the care home manager added that as soon as the weekend was over she would be reporting the hospital to the CQC. And suddenly – hey presto! There was a space on the emergency list and she could be taken to theatre within the hour.
I’m sure it doesn’t take much imagination to realise that life with a disabled child is harder than life for other parents and doesn’t stop when your child grows up. So I would like to know why families already under much greater stress than other families are constantly subjected to unbelievable additional stress at the hardest times of their lives. And why is it acceptable to subject people with intellectual disabilities to suffering that no one else would be asked to put up with? Imagine if you or I walked into the dentist with raging tooth pain, an abscess and spreading sepsis. Do you imagine we would be told to suck it up for six weeks until someone could be bothered to treat us? So why is that acceptable for someone just because they can’t be treated simply, in the dentist’s chair?
My daughter is normally a joyful soul. She has a fierce loyalty and devoted affection for her carers, family and fellow-residents. She has a very witty sense of humour and is wonderfully gifted musically, including having perfect pitch. She takes a keen interest in trains and hand dryers and can tell you a great deal about how they work and what are the differences between different brands and types. To see this lovely young lady with her cheerful disposition reduced to a screaming heap of terror literally trying to bash her own eyes out with pain and distress is something no family should ever have to be put through. But it is happening, every day, to people with learning disabilities.
As said at the beginning, the NHS can be brilliant at meeting the needs of disabled patients when the treatment is elective and carefully planned. But we have to improve the management of emergencies for these patients. Someone in the Clinical Commissioning Group has asked me to issue a formal complaint about the hospital. I think that instead I’m going to offer to run training workshops for their A&E doctors in how to work with patients with learning disabilities. Let’s hope they take me up on it.