Customize Consent Preferences

We use cookies to help you navigate efficiently and perform certain functions. You will find detailed information about all cookies under each consent category below.

The cookies that are categorized as "Necessary" are stored on your browser as they are essential for enabling the basic functionalities of the site. ... 

Always Active

Necessary cookies are required to enable the basic features of this site, such as providing secure log-in or adjusting your consent preferences. These cookies do not store any personally identifiable data.

Functional cookies help perform certain functionalities like sharing the content of the website on social media platforms, collecting feedback, and other third-party features.

Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics such as the number of visitors, bounce rate, traffic source, etc.

Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.

No cookies to display.

Advertisement cookies are used to provide visitors with customized advertisements based on the pages you visited previously and to analyze the effectiveness of the ad campaigns.

No cookies to display.

‘We need a learning disability act with enforceable policies, monitored by experts by experience’

The new government must bring in legislation with teeth, overseen by those most affected, to close the widening life expectancy gap between those with and without learning disabilities, says Jim Blair

GP and patient

If change for people with learning disabilities and their families is to happen, those who are directly impacted must be engaged in drawing up solutions. People who experience the difficulties and frustrations are best placed to guide plans to address inequalities.

Past white papers for people with a learning disability (such as 2001’s Valuing People white paper and its update, Valuing People Now (PDF), in 2009) could not be enforced.

We need a specific learning disability act that sets out enforceable policies to improve the lives of people with learning disabilities. This should be monitored by a new panel of experts – who have direct experience – as well as regulators.

People with a learning disability have a median age of death of 62, 21-24 years younger than other people, according to the 2022 NHS-funded report, Learning from Lives and Deaths of People with a Learning Disability and Autistic People.

Back in 2013, women with learning disabilities died on average 20 years earlier than those without, and men with learning disabilities 13 years younger than their counterparts who were not learning disabled. This is according to the NHS Confidential Inquiry into Premature Deaths of People with a Learning Disability 2013.

This shows that in the past decade things have been getting worse for people with a learning disability; a significant shift in the balance of power is needed.

This shift could happen if Labour established a quality improvement panel. Ideally, half the members would be people with a learning disability, one-third would be family members and the rest would be health and social care professionals.

Leader trio

In addition, the government could create three national co-directors for learning disabilities: one individual with learning-disabilities, one person with parental or family experiences and someone with a professional background. These directors would, with the panel, lead on the delivery of improvements, addressing health, education and care inequalities.

Such a panel would need to:

  • Have responsibility and accountability to deliver care evolution, health improvements and ensure quality of support
  • Deliver on the core areas: planning and developing health and care systems; staff training; monitoring outcomes; and improving quality and ensuring health and wellbeing
  • Address inequalities that are experienced by people from different ethnic backgrounds.

This is about ensuring people are engaged, involved and belong throughout life’s journey, and creating a society in which all can take part and all are valued.

Jim Blair is an independent nurse consultant in learning disabilities

Six policy actions for healthier, longer lives

  • Ensuring education health and care plans are acted on to enable a solid foundation for life, with appropriate diagnoses, interventions, support and opportunities as early as possible
  • A focus on people with learning disability who may or may not have autism, rather than autistic people who do not have a learning disability
  • Ensure adequate training of health, care and support staff to avoid issues such as diagnostic overshadowing (assuming illness is because of a person’s disability rather than fully exploring the cause of symptoms) and reduce restrictive practices such as restraint and seclusions
  • Making sure people with learning disabilities are registered with GPs and local hospitals, with more emphasis on prevention such as regular health checks and engagement with mental health services, rather than living in psychiatric units. This requires adequate support and staff skills to be developed in community
  • A focus on human rights, leading to a sense of belonging in communities – an ordinary life – and ensuring people with complex learning disabilities who do not use words are included and valued
  • An increase in the number of learning disability nurses. These professionals possess the fundamental clinical skills of a nurse with additional specialist skills, knowledge, attitudes and values. Their role includes reducing health inequalities through reasonable adjustments, increasing access to other health and support services, enabling and delivering health screenings and supporting people and their families to navigate health systems effectively