helpinghandSupporting learning disability patients throughout their hospital journey is the main aim of new developments across Sussex Community NHS Trust:

Inequalities in the standard of healthcare for people with learning disabilities has been an issue in hospitals for some time, as reports such as Mencap’s Death by Indifference and 74 Lives and Counting showed, but hospitals in West Sussex are addressing this with developments introduced this year.

For example, introduced in the spring, a computer-based tracking system, one of the first of its kind in the UK, is now used in hospitals across West Sussex. The system enables patients with learning disabilities to receive specialist support based on their care needs. When a person with learning disabilities arrives at the hospital, they are immediately flagged up on the system which alerts the specialist acute liaison nurses; a team of three nurses who work across West Sussex. The hospital liaison service is funded by West Sussex County Council and three clinical commissioning groups in West Sussex.

“We offer specialist support and guidance to people with learning disabilities who may come into hospital for a routine procedure, day surgery or those that are emergency admissions and require a hospital stay,” says Cathy Mead, acute liaison nurse for people with learning disabilities at St Richard’s Hospital.

“We ensure patients with learning disabilities are given equal healthcare. We can help the patient when communication difficulties arise and can ensure they receive more time during appointments and help them and their carers to understand medical procedures, health advice and follow-up information.
“In addition, we also advise learning disability patients on smaller details such as what they need to bring into hospital, where they need to park and whether they will require change for this. The liaison nurses can also arrange for a patient to come into the hospital for a visit prior to a planned procedure to help them feel less anxious.”

In collaboration with IT specialists at Western Sussex Hospitals NHS Trust, the acute liaison nurses developed the tracking system over a 12-month period. The system allows hospital staff to identify at a glance which patients have a learning disability and indicates what requirements are needed when the person attends hospital. Information on the system can also advise hospital staff when a patient has difficulties with communication and understanding. The liaison nurse is on hand at each hospital to provide support to learning disability patients wherever needed.

Updating the electronic record of every patient with a learning disability was a lengthy but invaluable process. The team of liaison nurses used the local social care patient register to identify people with learning disabilities to add flags to their hospital patient records. The nurses constantly ensure that people with learning disabilities are tracked on the system and add new flags for those not currently listed.

“The introduction of the specialist support services for people with learning disabilities was really as a result of the Six Lives report and the Death by Indifference cases which detailed how people were dying in hospitals due to a lack of extra support,” says Corinne Nikolova, learning disabilities health facilitation lead at Sussex Community NHS Trust. “We added acute liaison nurses for people with learning disabilities across our hospitals and, to further support the nurses, we developed the tracking system and the hospital passport.”

Hospital passport
A six-page document, the hospital passport provides essential information about the person with learning disabilities and is usually completed by the patient’s carer. The information advises hospital staff on all matters regarding the person’s health.

The passport uses a traffic light system to relay information. The red pages cover vital information that describes the person’s medical needs such as how they communicate pain and how they take medication. The yellow page covers the person’s care needs and includes questions on whether support is required to help the person wash and dress and also has details on how the person moves around and their sleep routine. The green page covers the person’s likes and dislikes and is also important for staff. The information in this section can help to create conversations and build a rapport between medical staff and patients when they are admitted to hospital.

For instance, Nikolova was called to a ward one evening to assist with a gentleman with a learning disability who was having difficulty sleeping at night. “While reading his hospital passport, I noticed his mum had written that he is often sleepless at night and likes to listen to classical music to help him relax. While chatting with the patient at his bedside, I asked if he had put some classical music onto his Walkman and, with some prompting, he was able to tell me that the batteries had run out and his CD player was no longer working. It was such a simple solution that could really help him! After new batteries were provided, one of the ward nurses called the following morning to say the patient had a much better night’s sleep. The hospital passport really is beneficial to all aspects of patient care.”

Prior to the introduction of the tracking system, Nikolova consulted a group of people with learning disabilities who all thought it was a good idea. The group were particularly supportive of the hospital passport and felt it was a very helpful step to introduce and one that would give patients extra confidence when going into hospital as it would alleviate the worry of trying to explain it all themselves. Patients also feel the hospital staff care for them better as a result of the passport.

Much work has been done in and around West Sussex in the learning disability community to promote the hospital passport including visits to day centres and colleges. As a result, many people are starting to have hospital passports ready if they are ever required to go to hospital.

“We encourage people to fill in their hospital passport even if they think they will never need to go into hospital,” says Nikolova. “If one is written and prepared, it makes everything so much easier if a person with learning disabilities is being rushed in as an emergency admission. We advise people with a learning disability and their carers to always keep the passport somewhere easy to remember. In addition, we try and promote the idea of adding a note inside a green pharmacy bottle, which is kept in the fridge. The note lets the ambulance crew know that the person has a hospital passport and explains where it can be found. This is very helpful in an emergency situation.”

My Network
Meanwhile, Mead was able to provide community support to a person with mild learning disabilities as a result of a lengthy chat following a routine hospital procedure. After reassuring the patient about the procedure and talking through what would happen, the patient felt able to go ahead without having a general anaesthetic.

Following the procedure, Mead went to see how the lady was feeling and while chatting, the patient revealed she was no longer eligible for adult social care services and was not coping well with her money. She explained to Mead this was making her feel unwell. The woman had also been prescribed antidepressants by her GP. “After the visit, I contacted the local council and arranged for this lady to be set up with My Network,” says Mead.

My Network is a local authority-provided service, which provides support services for adults with learning disabilities and advises on diet and lifestyle, and can also help with managing money and budgeting. “The lady had previously been unaware of this support and continues to find My Network a big help.”

This article first appeared in the December 2012 issue of Learning Disability Today. For details of how to subscribe, click here