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‘The average age at death for people with a learning disability is 23 years younger for men and 27 years younger for women than the wider population’.

‘41% of adult deaths were from treatable medical causes and 24% were from preventable medical causes’

Source: learning disability mortality review,

 

‘Today’s older people with learning disability are the first generation to survive beyond childhood and adulthood into older age….it is crucial that these additional years are as happy, healthy and fulfilling as possible.’

Source: Growing Older: Improving Support for People with Learning Disabilities. 2013

LeDeR is a service improvement programme for people with a learning disability and autistic people.

Established in 2017 and funded by NHS England and NHS Improvement, it's the first of its kind.

LeDeR works to:

  • improve care for people with a learning disability and autistic people
  • reduce health inequalities for people with a learning disability and autistic people
  • prevent people with a learning disability and autistic people from early deaths

Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic.

LeDeR reviews deaths of people with a learning disability and/or who are Autistic, to see where there are areas of learning, opportunities to improve, and examples of excellent practice. This information is then used to improve services for people living with a learning disability and autistic people.

‘Health inequalities are the preventable, unfair and unjust differences in health status between groups, populations or individuals that arise from the unequal distribution of social, environmental and economic conditions within societies, which determine the risk of people getting ill, their ability to prevent sickness, or opportunities to take action and access treatment when ill health occurs.’

Source: Public Health England 2019

People with a learning disability often have worse health than people without a learning disability and are more likely to experience several health conditions. The health inequalities faced by people with learning disabilities in the UK start early in life and often result from barriers they face in accessing timely, appropriate and effective health care.

Barriers to health equality:

  • Patients not identified as having a learning disability
  • Staff having little understanding of learning disability and/or autism
  • Failure to recognise that a person with learning disabilities is unwell
  • Failure to make a correct diagnosis
  • Anxiety or lack of confidence in people with a learning disability
  • Lack of joint working between different care providers
  • Not enough involvement allowed from carers/support staff
  • Inadequate aftercare or follow up care

The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) reviews showed the lack of reasonable adjustments provided to people with a learning disability (especially in accessing clinic appointments and investigations) as a contributory factor in a number of avoidable deaths. They also found that 38% of people with a learning disability died from an avoidable cause, compared to 9% in a comparison population of people without a learning disability (Source: Heslop et al., 2013).

Healthcare professionals have a legal duty to provide reasonable adjustments for disabled people (Public Health England, 2016). This can include providing easy-read information, avoiding medical jargon or longer appointment times.

There is a common barrier that often affects people with any type of disability and that is known as ‘diagnostic overshadowing’.

This is the term given to overlooking a physical illness because of presuming symptoms are part of the pre-existing, sometimes mental health condition, thus missing the opportunity to screen for other physical disease.

Diagnostic overshadowing increases the risk of further health complications and delay in accurate treatment.

Diagnostic overshadowing is increasingly recognised as contributing to health inequalities experienced by the disability population.

Meaningful Lives matter logo

Essex County Council (ECC) began the Meaningful Life Ageing Well project in September 2019, recognising that people with Learning Disability (LD) die earlier than the general population (average age of death is 60 years in Southend Essex and Thurrock (SET)), and that they often experience early frailty. As our local population ages, their needs will change and there may come a time when their primary need is no longer Learning Disability related, instead, it is age-related.

In 2021 a team of Social Workers were commissioned by ECC to undertake reviews with people with LD who were also seen to be ageing. In order to help them understand the issues that people with LD face as they age, a variety of tools, information, alongside links to relevant websites, has been put together to form a Toolkit for Ageing Well with an LD.

In addition to this, 2-day Ageing Well training was offered out to the Provider Market to upskill and raise awareness of how they may need to change and adapt the way people are supported as they age, preparing Providers to work towards becoming ECC accredited Ageing Well Providers.

Contact jenny.peckham@essex.gov.uk for information on future training sessions for Ageing Well.

The intention of ECC’s focus on ageing well, is to improve the quality of life for people with LD and to delay or reduce the development of age-related support needs. It is very much a joined-up approach with Health who have contributed to the development of the Toolkit. This will ensure that as the person with a Learning Disability progresses towards ageing, they are well supported to have a good life that is both fulfilling and enriched

The Provider version of the Toolkit has been put together to help you, as Service Providers, to ensure that everything is in place for the people you support, to age well.

Remember that ageing with a Learning Disability can mean that the person ages much earlier or even later, than others in the population. Don’t let someone’s chronological age obscure your view, instead consider what is happening developmentally to identify signs and symptoms of ageing to indicate whether you need to be following the Ageing Well pathway in your delivery of support.

It is ECC’s intention to have a list of accredited Service Providers who will be expected to provide evidence, against the list of agreed standards, of their competence to effectively support people with Learning Disability, as they age. This Toolkit will help your organisation to achieve that goal.

Last updated: 16/06/2022
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