Helping local people with disabilities have longer, happier lives

Thousands of people with learning disabilities are being helped by a Guy’s and St Thomas’ health project so that they keep hospital appointments and have early discussions about their health - saving them from developing potentially life-threatening conditions.

Guy’s and St Thomas’ community adult learning disability health team provides services to an estimated 6,000 people living with learning disabilities in Lambeth, Southwark and Lewisham.

The team of community nurses, occupational therapists, physiotherapists and speech and language therapists support a range of people with learning disabilities.

Learning disabilities can affect the way people learn new or complex skills and how they communicate. A learning disability can be mild, moderate or severe (people with more than one disability and very significant communication difficulties).

Nurse Jackie Downing is clinical lead for community learning disability nursing at Guy’s and St Thomas’. She says: “Our community team are working hard to make sure that people with learning disabilities are listened to and get the best care available.

“We know that simple things like making eye contact during a consultation or scheduling healthcare appointment at times that do not disrupt routines or cause extra anxiety for people with learning disabilities can go some way towards helping them to trust health professionals.”

A recent study by Bristol University found that people with learning disabilities sometimes experience delays in diagnosis and treatment because their health needs are not always picked up by doctors and nurses. Its researchers found that 22% of people with learning disabilities die before age 50, compared with just 9% of people in the general population.

People with learning disabilities, especially those with severe disabilities such as cerebral palsy, can find it difficult to swallow food and drink. This means that they are more likely to die from respiratory problems.

Staff train care home workers to feed people with severe physical disabilities and help them to recognise signs of infection and other conditions such as pneumonia. 

They also help people with mild learning disabilities to live independently by supporting them with everyday tasks such as cooking, cleaning and shopping.

Six nurses act as intermediaries to encourage people with learning disabilities to have regular health checks with their GP and give help and advice about issues such as sexual health and diabetes. 

Colin Heard, 57, lives in Bermondsey and has a mild learning disability. He also has problems with his kidneys and eyes. The adult learning disability team helps Colin to live in his own home, with some extra support, and to get the healthcare that he needs.

Michael Ginn, a learning disability nurse at Guy’s and St Thomas’, attends hospital and GP appointments with Colin. He says: “Colin can find visiting unfamiliar places like hospital frightening and very daunting. We have introduced a ‘hospital passport’ to help people with learning disabilities so that visits to hospital or a hospital stay are less traumatic.”

The hospital passport is a basic summary of known conditions such as diabetes, epilepsy or mental health problems as well as more personal information about food preferences, behaviour and habits. Patients with learning disabilities are encouraged to take it with them to every hospital appointment.

Michael Ginn says: “What we find is that healthcare professionals are often pushed for time and may not be used to working with people with learning disabilities.

“They may not always ask people with learning disabilities about their health concerns in a way that they can understand or give them the time to explain themselves fully.

“My job is to help people with learning disabilities get the care that they need. It is important that they feel able to explain any symptoms that they may be having so that problems can be picked up early and addressed.

“By doing this we can help more local people with disabilities live longer, fuller and happier lives.”