Families often struggle to get healthcare professionals to take their concerns seriously and the news about Ian Shaw's diagnosis illlustrates how serious the consequences of that indifference can be. But it isn't just families that get ignored. I was sent this by the manager of residential home a little while ago and in the week when the government has yet again claimed that it is improving access to healthcare for people with learning disabilities now would seem to be an approriate time to publish it. This post has been anonymised.
The information and experiences I have to share with you are nothing compared to some of the horrors some parents have been through, but I hope it might highlight some of the gaps in the healthcare training and services. I also dug out some reflective diaries that I've kept over the years which I've included below. Use what you want to and I won't be offended [if you don't]. There's a piece I wrote about the deaths of people I supported which sounds a bit crazy but it helped me get through what I felt was the injustice of it all at the time, and the fact that we felt we lost three people due to medical professionals not having enough awareness. These are however my reflective diaries on how I felt so they may be a little biased! The other paragraph is the day to day challenges we face in practice.
I knew she wasn't right. She hadn't been herself for days. The GP had been out and said to give her pain relief but there was nothing obviously wrong. Maybe it was the start of the flu the GP said. I called again. It somehow didn't feel right to leave her like this, declining food, difficult to get her to drink, not herself, very sleepy. I spoke to the GP who thought I was mad probably. "What are the actual symptoms?" she asked me in a sort of "don't waste my time kind of voice" and I replied "it's hard to describe but she's not herself, not very responsive to our interaction, declining most food and drink, I just know something is wrong but I don't know what" The GP said that she had been out already and didn't feel she needed to come out again. Just continue with the paracetamol and monitor her. I disagreed but was told I was to see how she went for the next few days and call back if there was no improvement. That working day came and went and I returned home that evening only to get a call at 6ish to say she was being resuscitated. I've never got to work so fast. I'm not even sure how I got there. She's laying on her bedroom floor, a tube on the floor next to her. She looks cold, asleep, motionless. They confirm she's dead. Comfort is given to her family and the other staff. Her body is taken. That day ends. We are left wondering how she died, what happened and how did it end like this? We start to try to piece it all together. The paramedics said that they were unable to intubate her to help her to breathe as there appeared to be difficulty in getting the tube in her throat. They said that sometimes they had this problem with people with tumours in those throat but obviously they weren't suggesting she had this. The relevant reports were made to the local authority, CQC and anyone else. We asked if there would be a cause of death from the post mortem. Her Mother said she didn't like the thought of her daughter cut up into bits and as the GP had seen her in the last 3 days they were allowed to put in the cause of death section "learning disability" and "cerebral palsy" which I didn't feel right about at all. Although it wasn't my decision to make and I did report to the local authority no one was able to explore the death any further. I was inexperienced at that time but I was left feeling that more could have been done to save this lady. I was really angry at the GP. I was angry at myself for not forcing the GP to come and see her that day.
She'd had a cough. It wasn't unusual for her to get chest infections-she was prone to them. She had a cold with this and had been to the GP. Antibiotics were prescribed but the cough didn't subside. We took her back to the GP who rolled his eyes with the "not them again" look and listened to her chest. He concluded she was fine and sent her home. The next day she was being supported with her lunch when someone called me for help. She appeared to be choking. I administered back slaps as per first aid for choking. She stops choking but coughs up phlegm. She looks ill. I call an ambulance as this isn't right for her. Whilst waiting for the ambulance she appears better and wants a cuddle which I give to her. The paramedics arrive-"obs are normal, she probably has flu. Send her to bed, plenty of Paracetamol" I explained that she wasn't right-not herself and that something was wrong. She gets up to cuddle my manager but as she wraps her arms around my managers waist she drops to the ground. We help her back to the sofa. "I better take her blood pressure as she wouldn't let me get it last time" says the paramedic. The blood pressure is low-through the floor low!!! She's taken to hospital and they find out she has pneumonia. IV antibiotics are started. That night I get a call from a colleague supporting her-she's in a bad way. I rush to the hospital to the colleague who is visibly upset. She says that she just started throwing her arms around and couldn't breathe. The medical professionals were trying to intubate her at this point to help her breathe. Eventually they manage to get the breathing tubes in and stabilise her. She's taken to ITU-I stay the night with her. The time comes when they have to put in a tracheostomy. This happens successfully. Unfortunately she deteriorates and has a heart attack. She's without oxygen for 25 minutes which leaves her with severe brain damage. A decision is made to end life support eventually and I sit with her along with my manager. We hold her hand and she dies. Her eyes looking at us is something that will stay with me forever and I will not forget. I couldn't help but feel if the GP had been more interested then she would have been seen sooner and if the paramedics had left without reading her BP she would have died at home.
He had had dysphagia most of his life. Tests were pushed for when we felt he was coughing more after meals and tiring after eating or drinking where it was discovered he was having silent aspiration. After this we tried a softer diet, thickened fluids, lots of different suggestions under the close eye of the SaLT team. He still had silent aspiration unfortunately. He got to the stage where it was unsafe for him to eat, recurring chest infections, coughing. A best interests meeting was held and we all felt the only way forward was for him to be fed enterally through a balloon gastrostomy tube. The procedure was carried out and all was going well until he pulled the tube out. This was reinserted and stayed for a while but he pulled it out again and needed a hospital admission. They failed to get the tube inserted this time in both A&E and on the ward. They said they would try again tomorrow. He had a nasty wound where they tried to reinsert the tube. Then it started. He vomited blood. He had filled his continence pad with blood too. The nurse was alerted immediately and she sought advice from the doctor. The vomiting blood continued. He had fear in his eyes each time this happened and the room was covered. They explained he was haemorrhaging and would probably die. We stayed with him most of the night and I returned in the morning. He gave one last massive vomit of blood before dying. The family took this case to court and we had to give statements as we all felt that the damage was caused by trying to reinsert the tube. We couldn't understand how he had gone down to have the tube reinserted and then came back with no tube and then began to vomit blood. Apparently, medically, this had not caused the bleeding and the family did not win the case. I felt sad this man’s life had ended this way and still can't understand how the reinsertion of the tube did not cause this. No matter how much research I do or how many times I explain it using my knowledge of anatomy and physiology it just doesn't seem right.
From my time working with people with learning disability and my knowledge of the training that other professionals receive I know there is a big gap in the way we deliver health care to people with learning disabilities. A week in a residential care setting and a workbook is absolutely not enough training for an adult nurse to support people with learning disabilities in a hospital setting. It is evident generally throughout the medical profession that there are not enough training programmes for medical professionals about how people with learning disabilities want to be supported. There are some really knowledgeable LD nurses out there who link to hospitals and work in the community who are great, but the people I support still face daily challenges when accessing healthcare. This is often due to lack of understanding about people’s needs, not treating people with LD as people and a lack of understanding about what capacity people have.
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