When Fred*, who has a learning disability, moved into his new supported living home two years ago he was in very poor health.
Staff at his previous care organisation in the north east had incorporated his cigarette and coffee breaks into his daily timetable, fearing that challenging his habits would distress him. Fred was unfit and had cataracts, and his poor dental hygiene meant he had lost most of his teeth and kept getting tooth infections.
Fred's new support provider, Thera North, organised the kind of health checks, dental appointments and eye tests that are routine for people they support. Fred stopped smoking a month after moving into the Thera North home as his full social diary distracted him from unhealthy habits. His eyesight radically improved after two cataract operations and dental surgery put an end to the tooth infections. He is now more active and walks for miles every day.
More people with learning disabilities need to experience the healthier lifestyle that Fred has benefitted from. The health of people with learning disabilities is worse that that of the general population with common health problems including respiratory disease, heart disease and obesity. A 2012 report by Mencap, Death by Indifference, highlighted the deaths of 74 people with a learning disability in NHS care over 10 years. It suggested that many health professionals still fail to provide adequate health care to people with learning disabilities.
These concerns are reflected in the findings of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities. This found that, on average, learning disabled men die 13 years earlier and women 20 years earlier that the general population. Almost half the deaths considered were premature.
NHS England's work to improve the health of people with learning disabilities includes increasing the take-up of routine health checks. There is also another scheme to ensure closer partnership across health and care through self-assessment frameworks that show how local services in those sectors collaborate to meet the needs of people with learning disabilities. In addition, NHS England last year launched the first national programme to review - and ultimately reduce - premature deaths of people with learning disabilities.
Other developments in this area include the Department of Health's commissioning of Skills for Health, Health Education England and Skills for Care to improve the capability of the health workers who support people with learning disabilities.
However, alongside the health sector, social care commissioners and providers have a major role to play in helping people access good healthcare and lead a healthy lifestyle. A recent VODG debate, for example, identified the need for closer collaboration between health and voluntary sector care organisations in the support of people with learning disabilities.
One recent project is the relaunch of a health charter for adult social care providers and staff. The charter, a practical resource, is designed to improve the wellbeing of people with learning disabilities; organisations and employees outline what they will do to boost people's health.
Development began in 2012, when the joint commissioning team in Sheffield was working with the Learning Disabilities Public Health Observatory to tackle local health inequalities. Sheffield ran a day for providers to explore what needed to happen to support people to stay healthy. The charter, originally launched in 2014, was also inspired by Mencap's campaign for equal healthcare, Getting it Right.
More than 100 organisations are now signed up to the charter, which is maintained by VODG, supported by the National Development Team for Inclusion (ref) and funded through a strategic partnership grant shared with the National Care Forum (ref). The resource covers issues such as how to ensure all staff understand and apply the principles of mental capacity laws and how to listen to, respect and involve family carers. There is guidance on how to provide staff training on health and wellbeing issues and how to promote access to screening tests. An accompanying self-assessment tool helps organisations to measure progress and develop an action plan for improvements.
A recent review of how the health charter is working in practice sets out key outcomes and tips from 20 organisations which have used the support guidance over the last two years to address health inequalities for people with learning disabilities.
The latest report demonstrates how supporting the charter offers a clear commitment to addressing health inequalities, and sends an important message to commissioners. The charter has also been used to help with regulatory compliance, while organisations that have embedded it into their strategies find that it drives improvements in services.
Some local authorities, including Durham, which commissions Thera North to provide Fred's care, have hosted health charter events which help to build local partnerships. For example, Durham county council and Tees Esk and Wear Valley NHS Trust held an event to promote the charter. This underlined the importance of an integrated approach and focused on the shared responsibility among commissioners and providers to improve health outcomes for local people with learning disabilities.
Durham county council delivered a clear call to action, asking providers to familiarise themselves with the charter and identify priorities for service improvement. Now, many local providers offering a wide range of care and support services are using the health charter to tackle inequalities.
As a result of the charter, Fred's care staff have a strong relationship with the local multi-disciplinary team and GPs. With a healthier lifestyle and joined up support, Fred has fewer incidents of challenging behaviour and, importantly, his support has reduced as his wellbeing and independence have increased.
As one care professional says in the recent report on the health charter, "research has always shown how people with learning disabilities get a raw deal and I think this [charter] makes it more focused."
* Fred is not his real name.
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