I am a patient with a learning disability – the NHS is letting us down

Three people with a learning disability die unnecessarily every day. If staff had the right training, this could be stopped

I know we’re lucky to have healthcare available to everyone in this country, but people with learning disabilities are not getting the quality of care they should. I have a learning disability and I know how difficult it can be to access the NHS. There are 1.4 million people with a learning disability in the UK and research shows that 1,200 are dying avoidably in NHS care every year.

Attitudes of healthcare professionals need to improve when it comes to learning disability. I have been seen by doctors who don’t take my concerns seriously, or do not take the time to listen to what I have to say. These bad experiences put me off going to see a doctor when I need to. I know which doctors I have had a good experience with in the past, and if they aren’t available, I tend to delay my appointment until they are free. I shouldn’t have to wait longer just because certain GPs don’t have a good understanding of learning disabilities and the support I need.

I have arthritis in my joints, which causes me a lot of pain and discomfort. I had keyhole surgery on my knees to treat it, but my doctor discharged me even though I told him it was still causing me pain. I didn’t understand why they were closing my case, even though I wasn’t better. I asked the doctor but didn’t get an answer. This means I need to make another appointment, but you begin to lose faith and wonder if it is worth the time and stress it causes.

Getting a good doctor and building a relationship with them can be difficult so I find it frustrating when my doctor changes during my treatment. It can take a long time for me to explain my concerns and build trust, so if I am then transferred to another GP, it can be stressful. This happened to me several times while I was waiting for surgery on my knees. Having to start again with a new GP takes a lot of time and delays me getting the treatment I need.

There is a great learning disability nurse I see at Homerton University hospital. However, I know there are not enough. Research by Mencap has shown that 42% of NHS acute trusts do not have a learning disability liaison nurse, so I am one of the lucky ones. She has a full understanding of learning disability and takes her time to listen to me and asks my opinion. I have epilepsy, so it’s important that she explains the treatment I need in an accessible way. Other doctors have rushed me and I’ve been left feeling confused. I understand that hospitals are busy places, but having a learning disability nurse to support me makes the process easier. There should always be a learning disability nurse on call, but this isn’t the case. I’d like to see more learning disability nurses being employed by hospitals until all medical staff are able to give the right care to people with a learning disability.

I also find letters from the hospital hard to understand. They use complicated language, which means I have to take them to work where somebody can help me work out what they mean. It would make my life a lot easier if they were written in a less complicated way. One of my friends, who also has a learning disability, was the last to find out about their health because it hadn’t been explained to them in an accessible way. It’s terrible that people aren’t being kept up to date about their own health.

But it could be worse: 1,200 people with a learning disability die avoidably in the NHS every year. That’s three people dying unnecessarily every day. If staff had the right training and knew the reasonable adjustments disabled people need, this could be stopped.

The government and the NHS need to prioritise providing disability training to all staff, as well as educating medical students. If healthcare professionals had a better understanding of learning disability, they would be able to provide good quality care to everybody, regardless of whether they have a disability or not.

Join our network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

Ismail Kaji

The GuardianTramp

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