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

How can we improve the health and wellbeing of people with a learning disability?

Ahead of the Learning Disability Today and Kingston University conference on 12th September, our conference chair Learning Disability Nurse and Training Consultant Jim Blair shares why he is so passionate about the health and wellbeing of people with learning disabilities.

Jim Blair, Independent Consultant Nurse Learning Disabilities
Jim Blair, Independent Consultant Nurse Learning Disabilities

What inspired you to pursue a career as a learning disability nurse?

I never imagined becoming a learning disability nurse. My drive in life is based on my commitment to care, justice, health rights and belonging within society for all. I started as a support worker in the early 1990s, and I found working with and for people with learning disabilities and their families to be a wonderful privilege. With every interaction I have with people with learning disabilities and their families, I learn so much and gain a greater awareness of how each person is brilliant in their own way and deserves the right to be involved, engaged, and participate in society.

What is your greatest achievement as a learning disability nurse?

I consider my greatest achievements to be related to enabling people with learning disabilities and their families to share their experiences to improve their lives. I am a big advocate for health literacy through photos, videos, and others methods, I co-chair panels to influence policymakers and hold services to account, and I ask people with learning disabilities to teach alongside me, presenting at conferences and publishing in journals together.

I have made good friends and colleagues by working with people with learning disabilities over the last 30 years, and these friends are having a powerfully beneficial impact on my life. My overarching achievement is the ability to travel with someone on their health journey and helping them to understand what is happening, by working with and for them.

Can you share an experience which reinforced your dedication to improving the health and wellbeing of people with learning disabilities?

Over the many years I have been a learning disability nurse, I have worked with so many individuals who have not received the assessment and treatment they are entitled to. Further strengthening my continuing commitment are the numerous injustices, cases of abuse, avoidable deaths, reduced life expectancy and trauma experienced by people with learning disabilities which happen far too frequently. This propels me to drive for change to improve life experiences, health outcomes and human rights with and for people with learning disabilities.

What are the most common health challenges faced by people with learning disabilities and how do you approach these challenges in your daily practice?

People with a learning disability frequently have a shorter life expectancy than that of the people without a learning disability (LeDer 2021). People with a learning disability have a median age of death of 62 21-24 years younger than people who do not have a learning disability, and sadly, this has not improved in recent years. The reasons for shorter lives are largely down to:

  • Delays or problems with diagnosis or treatment
  • Problems with identifying needs
  • Difficulty providing appropriate care in response to changing needs.

People with learning disabilities are also more likely to have comorbidities than the general population and are less likely to attend some cancer screenings, but this could be prevented if health services were better equipped and fully accessible.

If change is to be effective, it is vital that those who are directly impacted are engaged in a solution-focused action-driven future. This is essential as they are the very people who experience the challenges and frustrations and are best placed to guide future policies and address inequalities. The model set out below gives power back to people with lived experience and could be replicated in many areas of healthcare.

How do you ensure effective communication with people with a learning disability and their families to ensure their voices are heard?

If you do not have a learning disability, it is hard to imagine the world as a complex map of structures, sounds and directions that you cannot navigate your way around, but this is the daily experience of many with a learning disability. Organisations providing NHS care or publicly funded adult social care are required to provide accessible information, but families and people with learning disabilities frequently highlight to me that it is very hard to get accessible information.

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Being able to understand what is happening to, with and for you is very important, but frequently, this is highly problematic for people with a learning disability given society’s dependence on the written word. Whatever the age of a person with a learning disability, the use of jargon causes significant inequalities in understanding and as a result increases the risk of poor health outcomes.

Many people with learning disabilities can understand pictures better than words. Pictures can say much more than words and visual learning can unlock a person’s abilities, yet the power of visual literacy is not frequently employed across health and care settings.

Books Beyond Words is the UK’s national charity for visual literacy and emotional wellbeing. In my clinical practice, I have used Books Beyond Words extensively to aid a person’s understanding about what is happening to them across community, acute, paediatric, and forensic service settings. These materials also enable clinicians to ascertain a person’s ability to consent to treatments and to build personalised care plans. They open a world of learning all too often shut off for people with learning disabilities.

What needs to change to improve the health and wellbeing of people with learning disabilities?

It has been nearly 20 years since the last white paper which specifically focuses on the needs of people with learning disabilities was published by the government. People with learning disabilities feel as though there are a lack of government led strategies focused on their needs and they want to see this change. As one person with learning disabilities put to me: ‘You see the way learning disability health policy has fallen when people had to battle to be a priority for the Covid vaccine despite being 30 times more likely to die of Covid….people feel they are truly bottom of the pile.’

We therefore need to shift the balance of power back into the hands of people with a learning disability. This could be implemented with a Quality Improvement Panel, made up of people with a learning disability (51%), family members (34%), and professionals (15%). There should also be three co-national directors for learning disabilities: a person with a learning disability, a family member with lived experience, and a professional. These directors would lead the panel on various improvements including designing and delivering services, ensuring there are enough well trained staff, reviewing deaths and acting on learning, and addressing inequalities.

Learning disability nurses play a pivotal role within health and care settings, and it is key that these nurses are recruited and retained across all areas of the country. Reasonable adjustments and annual health checks are also crucial to improving outcomes and reducing health inequalities.

Finally, training programmes should be developed and be set by an accredited body. Anyone who seeks to work with someone who has learning disability must have completed that accreditation and then, in a supervised capacity, be allowed to work people with learning disability. The recent Oliver McGowan mandatory training is welcome, but we also need more training programmes which are tailored to specific settings, for example, primary care, mental health inpatient, community, and forensic services.

What key outcome would you like to see from the Learning Disability Today and Kingston University conference?

The key outcome of the Learning Disability Today and Kingston University conference is to enable people with learning disabilities and their families to fully engage in leading and shaping their futures as well as holding commissioners and regulators to account. Services and professionals must no longer pay lip service to involving people, but genuinely enable people with lived experience to have the power to create the change they need and deserve.


Our conference, Refocusing health and wellbeing for people with a learning disability: the action we need, will be held at Kingston Hill campus from 9:30 – 16:00 on Thursday 12th September.

The conference is intended for healthcare professionals, carers, commissioners of services, and service providers who plan and deliver services to people with learning disabilities across the statutory, independent and voluntary sectors.

Ticket prices start at £40 (including lunch), and we also have a limited number of free tickets available for carers and people with lived experience. To book your place, please click here.

Health and wellbeing conference LDT and Kingston

author avatar
Lauren Nicolle
Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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