Small changes that make a huge difference: the "invaluable" team transforming hospital care for patients with a learning disability

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(Learning disability liaison nurses Tim Harrison (far left) and Anna McMurray (second from right) with paediatric learning disability nurse Samantha Maddern and volunteer Lorna Thomas)

Coming to hospital can be scary for anyone, especially if it’s an unexpected visit. But for someone with a learning disability, even a routine appointment can bring all kinds of added worries. Will my doctor speak to me in a way I can understand? Will I get enough time to explain a problem I’ve been having? If I’m given some medicine to take home, will someone make sure I know when and how to take it? On top of this uncertainty, many people with a learning disability find the hospital environment difficult and feel anxious about being there.

This is where University Hospital Southampton’s learning disability liaison nurses, Tim Harrison and Anna McMurray, come in. Their goal is to ensure open, easy access to hospital services for adults with a learning disability and their carers. They do this in a lot of different ways, from accompanying a patient to an appointment and providing easy-to-read information to advising other medical staff on how to make sure their patients’ voices are heard when making decisions about their treatment.

An important part of their role is arranging for reasonable adjustments to be made. These are changes to the way the hospital works with a patient with a learning disability, and can include giving someone a longer appointment, providing a quiet place for them to wait or making adjustments to the environment, for example removing unnecessary clinical equipment to reduce distractions. “They don’t have to be big, earth moving changes to the way we already work - they can be very small changes but they can make a huge difference to the patient,” explains Tim.

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Someone who knows this well is Krystle Fenn (pictured, right), who recently stayed in hospital for almost four months, supported by her parents Nick and Yvonne and the learning disability nurses. Krystle is usually admitted to hospital via the emergency department, and describes her feelings in this situation as “nervous, anxious and scared” because she doesn’t know what’s going to happen. The family have found the support of the learning disability nurses “invaluable”, especially during Krystle’s recent long stay in hospital. Dad Nick said: “They constantly made themselves available to Krystle, and paid great attention to her wider welfare.”

This meant making sure that Krystle understood her condition and that the staff treating her understood her needs, which was achieved with the help of illustrations and the hospital passport, a booklet that someone with a learning disability can fill out to tell staff about them.

As Krystle’s condition improved towards the end of her stay in hospital, she became reluctant to leave because she felt safe there, so the learning disability nurses worked with Krystle, her family and her medical team to give her the confidence she needed to return home. Krystle’s parents said: “We cannot praise the support provided by Anna, Tim and the team highly enough.”

Sadly, not everyone with a learning disability has such a positive experience in hospital. Research by the charity Mencap has found that 1,200 people with a learning disability die avoidably in hospital every year because their needs are not understood and listened to. Mencap is working to change this, and has made health and their “Treat me well” campaign the focus of this year’s Learning Disability Week. The campaign aims to raise awareness among medical staff of how they can support patients with a learning disability to get the care they need in hospital. It’s also about empowering people with a learning disability and their carers to ask for the reasonable adjustments that would help them access healthcare.

When we asked Krystle what tips she would give someone with a learning disability who was going into hospital, she was very clear about what made a difference to her: “Take your mum or dad with you ... and phone the learning disability team in advance.”


Are you visiting the hospital soon?

If you're coming to a hospital appointment and you’d like some help from the learning disability liaison team, you can contact them by phoning 023 8077 7222, extension 5367. You can find more information and helpful resources on our pages for patients with a learning disability.

To find out more about Mencap and their Treat me well campaign, visit their website.

Posted on Thursday 21 June 2018