The National Institute for Health and Care Excellence (NICE) has published an impact report reviewing how its guidance has been used to improve the health and care of people with a learning disability.

It found that there has been lack of progress made in many areas, high levels of health inequality for people with a learning disability and limited positive change over time.

Previous guidance from NICE has focused on people growing older with a learning disability, behaviour that challenges, and mental health problems.

NICE has produced four guidelines, three quality standards and one advice product. Stakeholders involved in the guidance identified the following as key priority areas:

  • The uptake and quality of annual health checks
  • Reasonable adjustments and accessible communication
  • Providing personalised care and supporting people to live independent lives in the community
  • Integrated local commissioning of health, social care and education services
  • Health and social care workforce development.

Health inequality and learning disability

The impact report found that people with a learning disability are under served in access to healthcare and experience high levels of health inequality.

Research has shown that, compared with the general population, people with a learning disability were three to four times as likely to die from an avoidable medical cause of death. Most of the avoidable deaths in people with a learning disability were because timely and effective treatment was not given.

NICE said it has set out our recommendations across a range of guidance. And once these are implemented, it will result in a reduction in health inequalities for people with a learning disability.

Recommendations include:

It also said that an important element of learning disability health checks is making sure that routine healthcare, such as cancer screening, has taken place, and offering advice if not.

The report found that in the previous five years, the proportion of women aged 50 to 69 with a learning disability who received breast cancer screening was 51%. This compares to 65% of women in the same age group without a learning disability.

The NICE guideline on care and support of people growing older with learning disabilities recommends that older people with a learning disability should be offered the same routine screening as older people without a learning disability.

Reasonable adjustments are also important and there is a legal requirement to make sure services are accessible to all people with protected characteristics under the Equality Act 2010. The NICE guidance on care and support of people growing older with learning disabilities states that service providers must make these reasonable adjustments.

Adjustments may also be needed so that people with a learning disability can access work. The guidance on mental health problems in people with learning disabilities says adults with a learning disability (with or without mental health issues) interested in accessing paid or unpaid work should be supported.

Reducing overmedication and long-term hospital care

The report said that too many people with a learning disability are prescribed medication inappropriately, or are kept in long-term hospital care against their best interests.

There are between 30,000 to 35,000 adults with a learning disability in England who are taking psychotropic medicines without a relevant diagnosis. Guidance from NICE on challenging behaviour and learning disabilities says that antipsychotic medication should be considered only in very limited circumstances. And always offered in combination with psychological or other interventions.

The NICE quality standard on learning disability: behaviour that challenges says antipsychotic medication should be reviewed 12 weeks after starting treatment and then at least every six months.

The report also said that 35% of people in a mental health hospital with a learning disability, autism, or both had been in hospital for over five years.

Recommendations from NICE include assessment to identify possible triggers and access to specialist behavioural support in the community. Also as soon as the person is admitted, the hospital and community learning disability team should work together with the person to develop a discharge plan. Links with home community, including relationships, employment and education, should be maintained.

Support and future planning of people with a learning disability

The NICE report said data has shown that, in 2019/20, adults using learning disability support services had satisfactory experiences of care. 97% said that support services improve their quality of life and 81% feel as safe as they want. 72% of adults said they are extremely or very satisfied with the care and support they receive.

It added that there is still more that can be done. For example, just 41% say they have as much control over their daily life as they want.

The wider needs of people with a learning disability also need to be considered including housing and opportunities for social interaction. Two-thirds of adults with learning disabilities live with their families, usually their parents, according to Mencap’s Housing for people with a learning disability. Eventually, ageing family carers may reluctantly explore alternative care arrangements when they are no longer able to provide long-term care. The death or serious illness of a parent may result in unplanned or multiple moves in accommodation for people with a learning disability.

The report said that thinking about the future is an important aspect of person-centred planning. Its guideline on care and support of people growing older with learning disabilities recommends practitioners should have person-centred conversations with people growing older with learning disabilities to address their changing needs, wishes and capabilities and promote their independence.

It also recommends that practitioners build on the person’s strengths and skills and consider how to meet their changing needs and preferences to promote independence. This should include empowering people to build and maintain relationships to reduce isolation.

Sarah Coleman, health policy officer at Mencap, said: “We welcome the commitment from NICE to get it right for people with a learning disability. Both mainstream and specialist learning disability services across both health and social care need guidance, support, training and resources to ensure they can meet the needs of people with a learning disability. For NICE this means good quality guidance and products for the specialist services, and just as importantly, ensuring that guidance for mainstream services enables them to also care effectively.

“In addition, NICE has a role to play to ensure services can work together, joining up care so people with a learning disability do not fall through the gaps. As we rebuild from the pandemic, and redesign our services according to the Long Term Plan and the integration agenda, NICE has a key role to play in making sure that we address those gaps, so health and social care services can deliver the joined up, co-ordinated care that is desperately needed.”