Mother of daughter with learning disabilities calls for new legal right
Susan’s speech to MPs at our event in Parliament on 9 March 2022, ‘Guaranteeing the right to maintain contact’
I am the parent of 27 year old twins; Sarah and Elizabeth. Sarah struggled to understand what we were saying, and we could barely understand a word she said! Eventually, she was diagnosed with a language disorder, dyslexia and dyspraxia. Her hearing is fine, but her brain scrambles the messages. She can only understand concrete language, and she takes everything literally. Sarah used to be a warm, intelligent and kind girl. People did not know there was anything wrong with her.
At 12, Sarah had an absence – a fluttering of the eyelids. Within 3 months, she was having 350 seizures a week. She was diagnosed with epilepsy. It went out of control – she was put on two, three, four, drugs. She was under the best consultant neurologists in the UK, and they got her down to two hundred seizures a month. She had to go to a residential epilepsy school, but she came home at weekends and holidays. Every week she was at home for ten years, we had to take her to the Minor Injuries Unit for the injuries from falling in seizures, or we had to call 999 due to non-stop seizures.
The local hospital admitted they do not have the expertise to look after her. They have always asked us to stay with her 24/7. We would explain on admission that Sarah needed concrete language. Two minutes later, a nurse would say: “Hop on the bed!” – Sarah looked horrified at the idea of having to hop about on a hospital bed! The nurses gave Sarah menus to choose her meals, which she couldn’t understand, then the nurse commented she had not chosen much to eat.
No doctor ever asked her how much pain she was in, they just assume they can tell, when she lives with pain, and she has learnt not to show it. Several times, they forgot to give her the drugs, which could have caused Sudden Death in Epilepsy.
Susan speaking at our event in Parliament in March 2022 © PA Wire, Stefan Rousseau
The NHS is too fragmented for people like Sarah. We are the only ones, who know her complete medical history. The consultant neurologists are great, but some doctors in other specialities clearly see her, with learning disabilities, as a second-class citizen and they don’t want to waste NHS time and money on her. Sarah broke her collarbone, falling during a seizure. The nurse looked at the X ray, and said “That needs pinning”. The orthopaedic consultant wouldn’t pin it, because Sarah has learning disabilities. The bone did not heal up properly – they call it a malunion!
Once, a junior doctor in A&E assured us that Sarah did not have epilepsy, this when she had been under three professors of neurology, the best in the UK. Half an hour later, after reading her notes, he admitted she does have epilepsy! He discharged her, when she was fast asleep with all the emergency drugs. We had to carry her out, because she couldn’t walk. Three of her consultants have told us, that if we weren’t happy with her treatment or discharge, that we had to stand up and argue for her.
Even when Sarah was more able, we really believed, that if we weren’t allowed into hospital as an essential caregiver, she would die due to lack of care. Once, we took her out of there for her own safety. We found we had to be interpreter, her care co-ordinator and advocate and this was before Covid.
She suffered massive cognitive deterioration at 17, and now she is like a 3 year old. The person we knew is dead, and somebody else is walking and talking in her body. She looks normal but her learning disabilities severely impair her ability to understand and communicate with the world, and her ability wasn’t great before. Nobody would put a 3 year old on an adult ward, on their own, but we realised during Covid, that a hospital might refuse to let us in, as a carer for her.
We were lucky to get four visits of one-hour slots, in full PPE behind a screen. We had to leave her screaming “Don’t leave me!”
Imagine, you were stranded in a rural village in China, with no means of communicating with friends and family. You don’t speak the language, you can’t read the writing; they can’t understand you. However, you realise this is a very different society from ours, where you don’t understand the rules except you can see unpleasant treatments are given out to people. How would you feel – lonely, lost and disorientated, when you have your full cognitive equipment!
Sarah now lives in a specialist care home with 1:1 care – it’s a seven hour drive there and back. Sarah was at home for her birthday when the first lockdown was imposed. The care home refused to have her back, as there was no community testing. We kept her at home for seven months, but David (my husband) had already had two heart attacks with all the stress, and we were worried he was going to have another, so in November 2020 we sent her back to the care home.
The Covid guidance for care homes has had a dreadful impact on Sarah. She has always come home every two-three weeks. Between November 2020 and May 2021, we were lucky to get four visits of one-hour slots, in full PPE behind a Perspex screen. She was too shy to speak to us the first half an hour. We had to leave her screaming “Don’t leave me!” or they told us she cried for 2 days after we left. If she came home, she had to stay in an isolation suite for 2 weeks on her own, with her 1:1. We were reluctant to put her through it, but they asked us to have her home in May 2021 for her mental health.
We were shocked how her language had just fallen off a cliff since she went back in November. None of the staff had noticed! With all the staff wearing masks, she has not been able to hear the language every day and she has forgotten most of what she did know. She has cried to us about what hard work it is to understand the staff. She used to be able to ask what was for lunch – now she just says “Uh – the thingy? The thingy…?” The main words left to her are swear words, because everybody knows they are strong words. She can’t say to the staff “Quiet, it is such hard work for me to understand what you say. I need a rest!” All she is left with is to tell them to leave her alone or swearing.
We raised it with the speech therapist and bought her an iPad to use as a communication device. The staff are being trained in how to use it with her. We ask her if she wants a drink and then we bring up on the app a grid of pictures of drinks, so she can point to what drink she wants. There are also grids for meals, activities, places to go etc.
Her behaviour has worsened – she won’t come out of her bedroom most of the time and refuses to eat half her meals, when hunger triggers seizures. We think it’s frustration that she has no voice to express how she feels or what she wants and boredom at being shut in four walls for over a year. We can all go out to pubs, restaurants, cinemas, whatever we want – but she can’t do all the things she loves. We have no doubt if she had capacity, she would take the risk of getting Covid, which for her at 27, may well be no more than a cold! She has never had flu. Apart from the epilepsy, Sarah is a healthy 27 year old – she is far more likely to die from the epilepsy, than Covid!
Last time she came home, she asked us if she would see us again – she has no idea if or when she is ever going to see us again. Nobody would put their 3 year old through that, would they?
I asked the care home last summer, if I could be an essential caregiver for Sarah. They ignored my request, but wrote in their next information letter, that an essential caregiver could see their relative in the Visitors’ Centre – they were no different from any other visitor!
Susan, speaker at ‘Guaranteeing the right to maintain contact‘, Parliament, 9 March 2022