Learning disabilities and health

Before liaison nurses started work in Wokingham, many people with learning disabilities were being overlooked for routine health checks - as they are all over the UK.

People with learning disabilities have poorer health than the rest of the population yet often find it hard to access health services. Even if they try to get help, many services are reluctant to provide the extra support they need.

The government acknowledged this in 2001 when it published Valuing People, the first directive for people with learning disabilities, which stated they should have the same access to health services as everybody else.

But seven years on, an independent inquiry into access to healthcare for people with learning disabilities, chaired by former chief executive of Guy's and St Thomas' foundation trust Sir Jonathan Michael, is expected to say there is still a long way to go. The report is due to be published this month.

However, progress is being made at primary care trusts that have taken on board the Valuing People recommendation to introduce liaison and facilitator roles to improve access. Berkshire West primary care trust (formerly Wokingham) is one of them.

In 2004 the trust created a post for a primary healthcare liaison nurse. The nurse acts as a link between patients with learning disabilities, the community team for people with learning disabilities and primary and acute health services.

There are three elements to the role: guiding carers so they can identify health needs and develop action plans for their charges; encouraging GP practices to register people with learning disabilities and provide them with regular health checks; and providing an advocacy service for people with learning disabilities in hospital.

Expanding service

Over 600 health checks have taken place. The trust's professional executive committee recently said it will expand the service across the PCT, which also covers Reading and Newbury, to provide annual health checks to all 1,300 local residents with a learning disability. This comes into effect from this summer.

Berkshire West is unusual in that there is a large learning disabilities community - the Ravenswood Village - on its patch.

Berkshire West primary care commissioning manager Hugh O'Keeffe says this was a trigger for developing the post. "There were discussions over the PCT's role in supporting the residents, as many were from out of the county.

"Either residents didn't get GP services or they had to pay for services," says Mr O'Keeffe. Consequently, for Ravenswood to get equal access, local practices would have had to take on a large number of people with learning disabilities. So the PCT worked with the local learning disability partnership board, which is co-ordinated by councils to implement the Valuing People programme, to find a solution.

One idea was for practice nurses to visit people with learning disabilities at home in order to carry out health checks. But lead learning disabilities nurse Ruth Denny came up with the idea of the liaison nurse, who has a more wide-ranging role and works to change attitudes within health services.

Ms Denny was the first nurse to hold this post and faced the daunting task of getting all 14 GP practices in Wokingham on board.

It was a big job, as Mr O'Keeffe explains: "Developing the health checks was the area we had to particularly work on. Lots of people with learning disabilities are not registered with practices. So we are trying to facilitate the process to make it easier for them to register and to make practices more willing."

The PCT offers a financial incentive to GP practices that deliver health checks to those with learning disabilities, which can take from 40 minutes to an hour, by making it an enhanced service. Each health check costs£71.40 and is normally done by a practice nurse.

"If it hadn't been an enhanced service, the health checks wouldn't have been as successful. It does take more time for practices to see these patients, so it is recognition of the workload involved," he says.

Comprehensive checks

The checks include questions on medication, immunisation, family history, long-term conditions, diet and exercise and whether patients have had regular dental visits and hearing and sight checks.

They also cover sexual health, mental health and emotional needs, as well as carers' details and constraints. The advantage of doing the checks through GPs is that referrals and follow-ups can be arranged.

"One of the reasons this role is so useful is that it facilitates the process of practice invitation and the liaison nurse will explain to the learning disability patient how the health check works. It is an important role in building a bridge," says Mr O'Keeffe.

An audit after the first year showed GP practices were picking up ongoing health problems and identifying new conditions among people with learning disabilities.

People have also said they like the service. At a partnership board event last year one patient in the audience commented: "I went to my GP practice today for my health check. I was scared at first as I have not been to my doctor for years. I was always too scared.

"Today though, it was different. The people at the practice were lovely and they want me to go back. I do not feel scared any more of going to see my doctor."

Mr O'Keeffe says this kind of praise shows how the liaison nurse is working. "It has improved how responsive primary care services are to people with learning disabilitiesƒ [They are now] booking enough time for appointments and are more in tune with these patients. The learning disabilities partnership board is saying it's a good thing," he says.

The Equality and Human Rights Commission approves of Berkshire West's initiative, but a spokeswoman said nationally there is still much progress to be made.

The commission is developing protocols to ensure people with learning disabilities get health checks as part of GP contracts. This has already happened for mental health patients. And it is set to sign a concordat with the Healthcare Commission, so that the commission will start to look at equal access as part of the annual NHS health inspections.

Together, these steps and the findings from the independent inquiry should send out the message that trusts can no longer turn a blind eye to health services that exclude people with learning disabilities.