Learning Disability Today
Supporting professionals working in learning disability and autism services

Clearing the barriers

john kay sheffield hallamPeople with learning disabilities still often have difficulties accessing primary healthcare services, but, as two examples from Yorkshire show, there are ways to overcome this.

For adults with autism in Sheffield, accessing diagnostic support from the city’s Asperger’s Syndrome Service used to be difficult at best, but thanks in part to the efforts of a lecturer at Sheffield Hallam University, this has become a lot easier.

John Kay, who has Asperger’s syndrome, helped secure £500,000 worth of funding to allow adults in Sheffield to have access to diagnostic support for autistic spectrum conditions.

Previously, the ‘out-of-area’ referral policy followed by Sheffield Primary Care Trust meant adults living in the city could not access its Asperger’s Syndrome Service for autism alone, and would only qualify for diagnosis and support if they had additional mental health conditions.

“In Sheffield the only way to access this service would be through a privately paid consultation,” adds Kay. “It was possible to present with a qualifying mental health condition and then be internally referred to the service.”

Further reading: LDT Sheffield event presentations

Kay adds that similar scenarios have been seen in other trusts across the country. But following a letter campaign to local MPs, Kay, who is the lead governor of the Sheffield Health and Social Care NHS Foundation Trust, helped the Trust to secure funding from Sheffield City Council and the local clinical commissioning group (CCG) after identifying a need for service provision for autistic adults living in the city.

For Kay, having a local trust that was approachable and open to ideas for change was essential. “The majority of these services are provided by NHS trusts [which] have historically been cash starved and require public engagement to raise awareness.”

This service has brought numerous benefits to adults with autism in Sheffield, Kay says. “The mere fact that an adult can be referred by a qualified medical practitioner to the service for diagnosis can in itself relieve any anxiety and stress the individual may be under. Another reason that someone may wish for a diagnosis would be, for example, to gain access to work adjustments. A diagnosis would provide an individual with recognition that they have a condition that is disabling in certain circumstances and it is appropriate to put adjustments in place.”

Get involved
For other people with autism or a learning disability who want to help change or improve services in their local area, Kay recommends they become members of NHS foundation trusts and use this as a vehicle to hold board members to account. “Governors of these trusts are elected by the members and work to raise issues important to the local area,” he says. “By working with the trust and related commissioning bodies it is possible to secure the commitment to these types of services.

“I have only been able to attend various meetings and discuss issues by becoming involved in the wider issues related to service provision. I would suggest that you need to commit time and engage with the bodies that can provide the funding to acquire the services you are looking to support. Everyone looking at health related issues should become a member of the foundation trust. It is free to join and provides you with information of who is responsible for providing your care.

“If you have the time and commitment put yourself forward to be elected as a governor and help out by sitting on the many working groups planning service provision. It is a long process and often an uphill battle but if you can get the decision makers to commit to action it is worth the effort. In my own case it has taken four years with the help of the Autism Act and the Autism Strategy so all I can do is hope my efforts and the many meetings have contributed to development of this service.”

Getting access to health checks
Kay’s story shows how some services are developing and helping people with learning disabilities to access healthcare services. But there is an acknowledgement that more needs to be done to improve access to wider primary healthcare services.

For instance, in ensuring that adults with learning disabilities receive an annual health check from their GP, to which they are entitled to if their GP had identified them as having a learning disability and they were also known to social services primarily because of their disability.

An annual health check includes a physical examination, review of any prescribed medication being taken, assessment of whether existing chronic conditions, such as asthma, are being well-managed and questions about their lifestyle and mental health.

In 2012/13, nationally 92,329 people received a health check, an increase of 7.2% on the 2011/12 figure, according to figures from the Improving Health and Lives Learning Disability Observatory. But the number of people with a learning disability identified as eligible for a health check was 177,389, an increase of 8.8%, which means that the proportion of people receiving a check actually declined slightly year-on-year.

Meanwhile, in the Yorkshire and Humber region, the number of people receiving health checks was above the national average. In all, 9,678 people received a health check in 2012/13 out of the 16,147 who were eligible.

But in Leeds, it was thought that more could be done to improve these figures, says Norman Campbell, commissioning manager learning disabilities and autism at Leeds Clinical Commissioning Groups Network. “Leeds doesn’t have the highest level of health checks undertaken,” he says. “This is probably down to the size and diversity of the population and the mixed uptake of health checks across the city by GPs.”

Pilot project
To increase the uptake of health checks, a pilot was established that involved three GP practices, one each from the local CCGs. Initially, a GP with a special interest in learning disability took sessions with staff to explain the key issues that people face and the importance of health checks to them, Campbell explains.

Following this, the practices’ information systems were analysed to see if they had identified all of the people with a learning disability who were registered with the practice. “We found that each practice had a different system and different codes for categorising people – there was no standardisation, and some people had been missed who were eligible,” he says.

“We also looked at what was in the health check itself. We identified helpful templates, including electronic ones, to standardise it to include key areas, improve the recording of them and to produce a health action plan from it.”
In addition, the pilot looked at what reasonable adjustments could be made for the person with a learning disability, such as finding out useful information about the person before they had their health check. “This included giving the person with a learning disability a booklet, My health check, to complete prior to their check so the information was already there for the GP,” says Campbell.

The pilot has proved to be successful, improving the uptake of health checks in the practices and making them more effective for people with learning disabilities. It has also informed local commissioning: commissioners have stated their intention to provide learning disability nurses to work with GP practices to ensure they have standardised processes and can engage more effectively with service users and improve access, Campbell adds.

Following on from this, the three CCGs in Leeds have shown an interest in expanding the pilot as well as supporting the commissioner’s intent to provide specific support to improve capabilities.

These examples from Yorkshire show what is happening to improve access to healthcare services for people with learning disabilities – and there are more examples across the country – but more still needs to be done to ensure that they have equal access. 

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