A cultural shift in healthcare for people with learning disabilities

People with learning disabilities often face systemic barriers in receiving fair healthcare. In this interview, Jim Blair, Independent Consultant Nurse in Learning Disabilities, discusses why we need to shift the balance of power to bring about cultural change.

What are the unique healthcare needs of people with a learning disability?

The healthcare needs of people with a learning disability are not unique in that everyone faces similar health issues. We’re all human; that’s the common factor. Anyone can develop cancer, break a leg, suffer from tooth decay, eyesight problems, or bone health concerns. What differs for people with learning disabilities is how they are believed, perceived, and viewed regarding their health and what actions can be taken. For example, someone might be laughing, seeming happy and comfortable; however, for individuals with learning disabilities, subtle differences in pitch, tone, or frequency may suggest they are actually in pain.

Another example is a young woman named Emma, who was highlighted in the Death by Indifference report published by Mencap in March 2007.¹ She died of cancer on 25 July 2004, aged just 26. She had a severe learning disability, and the hospital delayed treating her because they claimed she would not cooperate with treatment and, therefore, could not give
consent.

But how can we be sure who can or cannot tolerate a treatment they’ve never had before, or if someone with a learning disability might tolerate it better than we do? We’re all different. We don’t know. Sometimes people make assumptions, and those assumptions can be dangerous. It often comes down to people being blinded by the disability rather than seeing the person in front of them.

I understand that it can be hard for health professionals to pick up the subtle signs when a person can’t verbalise their symptoms or pain. Therefore, it is really important to think differently, act creatively and listen to carers and families.

Do you think discrimination is endemic in healthcare settings?

Yes, there is institutional discrimination against people with learning disabilities within the NHS. This was highlighted by the Death by Indifference report. It found that senior management within the Department for Health, strategic health authorities, hospital trusts, and primary care trusts regard people with learning disabilities as a low priority and that many healthcare professionals lack sufficient understanding of learning disabilities.

In the report, there is a case study where the father states that his child died due to the indifference of health professionals. I remember sitting there on launch day, just thinking, ‘You’ve hit the nail on the head.’ It’s exactly right. So, yes, I do believe there is institutional discrimination. Do I think it’s always intentional? No, I don’t. I feel sometimes people are trying their best.

They’re often not warned about someone with learning disabilities coming in, so they might be caught off guard. In one of the hospitals where I worked, we used a purple dot on the board, which staff, including surgeons and other health professionals, found very helpful. It allows them to ask the nurse in charge or the nurse caring for that individual what they need to do differently for this person. That made a massive difference to the staff’s confidence and competence.

How do we adress this?

To combat discrimination, we must ensure people understand the law, such as the Equality Act, and know how to invoke it. When reasonable adjustments are not being made, professionals should cite the relevant parts and sections of the Act and explain in the notes why there is a breach. As registered health professionals, we have a duty to uphold the safety of our patients and others. Staff training, therefore, needs to be targeted and tailored, not a one-size-fits-all approach.

For example, GP training would be entirely different for someone working in an acute hospital or a forensic setting.
In short, I think people want to do the right thing, but they often cannot because of systems and structures. There needs to be a cultural change to address the discrimination. What will help the cultural shift is embedding more learning disability nurses within services’ systems and structures. That’s an easy solution, or it sounds easy. The problem is that there aren’t many learning disability nurses around.

Do you have any top tips for people with learning disabilities and their families who might be having a hard time in hospital?

The main point is understanding the law. A person with a learning disability has the same rights to healthcare and treatment as everyone else. Blood tests and X-rays are essential, but might need some reasonable adjustments to facilitate them. This could be as simple as engaging with the patient with learning disabilities in a way they understand, using
things that are personal to them. For example, if they are a football fan, you could say that their favourite football player would take the test to score goals. Or you might refer to James Bond, Doctor Who, or whoever—whatever makes it personal and aligns with their outlook on life.

Health professionals have a duty of care to cause no harm. If they don’t make reasonable adjustments for tests, how do they know they’re not causing harm? It is really important to be innovative, take different approaches, be flexible, and be guided by those who know the person best, as well as the individual. If the patient is unable to speak to you in a way you understand, they may be able to show you visually whether they’re happy or not.

Is this why the Mental Capacity Act is so important?

The Medical Capacity Act, in my view, is the best piece of legislation this country has possibly ever passed. It is essential because it protects people aged 16 and over who may lack the mental capacity to make decisions about their own care, treatment, and finances. It empowers vulnerable individuals by ensuring their “best interests” are considered and by providing legal frameworks for decision-making on their behalf.

The five principles of the Mental Capacity Act are: a person is assumed to have capacity unless proven otherwise; a person must be supported in making their own decisions; an unwise decision alone does not mean a person lacks capacity; any act done for a person without capacity must be in their best interests; and any act or decision must be the least
restrictive option possible.

The danger is that people fudge the issue of capacity, or that someone is deemed to have capacity only if it suits the service provider. For example, if someone has Down’s syndrome and diabetes, some healthcare professionals might say that the person understands they are diabetic and the consequences of eating lots of biscuits, etc. But does the person truly understand this? How can you be sure they do? And if they don’t understand something, they are not making a real choice or decision. It’s not even an unwise decision because they lack understanding.

We need to improve how we assess capacity in different situations. For instance, a patient with a learning disability might understand the decision-making involved in a tooth extraction but may not be able to apply that understanding to a more complex heart operation.

Recently, more healthcare tasks have been delegated to adult social care, but there are no agreements in place with health partners on funding, training, or competency frameworks for staff. What are your thoughts on this?

I’m working with Learning Disability Network London at the moment, and one of the things they have done over the past year is create a health register of everyone in their service. For example, they know how many people have cancer or epilepsy, the treatment plans, and that everyone has an alert with the GP that links to the local hospitals. This enables targeted healthcare provision for that person.

The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme,² for example, only examines causes of death for people with learning disabilities; it doesn’t consider preventive measures. We need to start investigating what’s happening before it results in a preventable death, and I believe the health registers will assist with this.

One way to enhance this would be to involve student learning disability nurses, as well as other nurses and health professionals, in social care placements to support projects like this. They could assist in identifying needs,
developing healthcare action plans, and ensuring that annual health checks are conducted. These are valuable activities that can be supported, especially when the workforce is already under pressure.

Each student on placement could contribute to the project’s gradual progression, allowing it to develop over time. This would be highly advantageous for the organisation and critically important for the health and well-being of the individuals. Monitoring and gathering information about a person’s health helps establish a baseline for factors such as blood pressure and toilet habits, making it easier to recognise when everything is going well and, more importantly, when it is not.

Do you think the Government’s plan to create more health hubs will help people with a learning disability?

I believe healthcare hubs are a crucial and effective solution. They shift the NHS from a curative approach to a preventive one. Having hubs equipped with diagnostic tools and assessment areas will be very beneficial in the community centre. If implemented, it would mean people can receive treatment more quickly, be seen sooner, and be closer to home. At some point, there should be learning disability nurses attached to each of these.

If you could change one thing about the healthcare system for people with learning disabilities, what would it be?

I believe that both the social and medical models of disability are flawed. We should create a different model focused on health and wellbeing. Health and social care should not be separated, as they are deeply interconnected with the entire person. We also need to distinguish between people with a learning disability and those who are autistic but do not have a learning disability, because their needs and experiences are quite different.

I would also ensure that at least one, preferably two, persons with a learning disability and their family members serve as advisors on every health board. We need to shift the balance of power away from professionals. Services should
be created, developed, delivered, monitored, and regulated by those who use them alongside professionals, but we must prevent professionals from holding all the power. There are already some great examples of this, but they are not widespread.

How can we get things right?

Professionals often have their own agendas. It is sometimes similar to ITV collaborating with the BBC and Netflix. Frequently, a person with a learning disability or a family member is asked to provide feedback only after something has already been developed. The most straightforward approach initially is to create Easy Reads produced by individuals with learning disabilities. They exist, but most are not easy to read. They are often just random images with meaningless words placed beside them.

What I’m always frustrated by is how hard it seems for some people to get it right. I don’t see why. I’ve never understood that because it is so easy in many ways. Is it because they don’t see people with learning disabilities as fellow humans, and there is guilt attached to that at some level? But what is society if you’re abdicating responsibility for those who need support the most? Because anybody can need support at any time in their lives.

 

This article is from the December Health edition of In Focus

References

1. Mencap. Death by Indifference. March 2007. https://www.mencap.org.uk/sites/default/ files/2016-07/DBIreport.pdf
2. Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR). https://www.kcl.ac.uk/research/leder

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Jim Blair is a Professor of Intellectual (Learning) Disabilities Nursing, Health and Social Care Engagement and Innovation Lead at RIX University of East London. He is an Independent Consultant Nurse Intellectual (Learning) Disabilities and Disability Advisor for the World Health Organisation Europe. Jim is NHS England’s Chair/Clinical Advisor (Learning Disabilities) for Care Treatment Reviews and a panel member of the Nursing and Midwifery Council’s Fitness to Practice Panel. He also finds time to be a Patron for Dance Syndrome and a Trustee for the Learning Disability Network London as well as being on the editorial board of Intellectual Disability and Health.

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