Bridging the gap: why reasonable adjustments and good communication are vital in healthcare settings

This article explores the importance of personalised care, the role of learning disability nurses, and the urgent need for better communication and proactive adjustments to improve health outcomes and reduce disparities. 

Bridging the gap: why reasonable adjustments and good communication are vital in healthcare settings

Jim Blair, Independent Consultant Nurse Learning Disabilities

People with learning disabilities face significant health inequalities, with shorter life expectancies and inadequate care often resulting from poor communication and a lack of reasonable adjustments in healthcare settings. This article explores the importance of personalised care, the role of learning disability nurses, and the urgent need for better communication and proactive adjustments to improve health outcomes and reduce disparities.

The health inequalities experienced by people with learning disabilities and their families are vast. People with learning disabilities often receive unfair treatment, from inaccessible buildings and information to not being believed about health conditions or seen as worthy of having treatments that would routinely be offered to others.

People with a learning disability have a shorter life expectancy than that of people without a learning disability, with a median age of death of 62. This is 21-24 years younger than the general population. Sadly, this statistic has worsened over the last decade. According to the Confidential Inquiry into Premature Deaths of People with a Learning Disability (2013), women with learning disabilities died on average 20 years earlier than women who did not have a learning disability and men 13 years younger.

This illustrates that many of our health and social care policies – in terms of how they are designed, created, and delivered – do not work for people with learning disabilities. The narrative needs to be flipped and power needs to be placed in the hands of those with living and familial experiences to shape a fairer future that enables lives to flourish.

Why do people with a learning disability live shorter lives?

According to the same Confidential Inquiry referenced earlier, people with learning disabilities typically lead shorter lives because of delays in diagnosis and/or treatment, problems with identifying needs, and difficulty providing appropriate care in response to changing needs. Though this inquiry was first published in 2013, the reasons set out still ring true as evidenced by the many LeDeR reports in the past 10 years or so.

People with learning disabilities are also more likely to experience heart defects; poor vision, hearing and dentition; obesity; early dementia; thyroid and respiratory problems. They are also more prone to diabetes due to sedentary lifestyles and obesity.

It is essential that these health conditions are picked up in a timely manner to reduce the likelihood of early and all too frequent avoidable deaths. Many of the comorbidities that are prevalent among people with a learning disability could be prevented if health services, settings and staff were fully equitable and accessible.

The importance of good communication

People with learning disabilities are extremely reliant on their families to assist in navigating and traversing the maze that is the health, care and educational system. 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.

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, which in turn increases the risk of reduced health outcomes.

Since August 2016, all organisations that provide NHS care and/or publicly funded adult social care are legally required to follow the Accessible Information Standard. The Standard sets out a specific, consistent approach to identifying, recording, flagging, sharing, and meeting the information and communication support needs of patients, service users, carers and parents who have a disability, impairment or sensory loss. Yet for so many with a learning disability, information that is truly accessible is in sparse supply.

The language used by healthcare professionals can exacerbate the frustrations of parents and carers. Here is how one parent sets it out: “There is a tendency for jargon and care speak to erase consideration of people and construct them as a social care problem to be dealt with... this can also lead to dismissal of the person.”

Reasonable adjustments: what are they and why are they so vital in healthcare settings?

Equal treatment does not mean that treatment should be the same. Adjustments are needed for certain groups to ensure they experience equal treatment. Reasonable adjustments are a requirement for those with protected characteristics as identified in the Equality Act 2010, which includes people with learning disabilities.

Families and individuals with learning disabilities frequently question, ‘How do we define what is reasonable in a reasonable adjustment?’  This question can be answered by considering the TEACH approach:

Time – take time to work with the patient

Environment – alter the environment e.g. quiet areas, reduce lighting and waiting times

Attitude – have a positive, solutions– orientated focus
Communication – find out the best way to communicate with the patient and communicate this to colleagues
Help – what help does the person need and how can you meet their needs?

Good communication is key, and when healthcare professionals are meeting a patient for the first time, the first thing they should do is find out how the person communicates most effectively – is it verbally or non-verbally? Do they speak, sign, make sounds and use gestures, or rely on pictures and photos? The best way to do this is to interact directly with the individual and the person who has come with them to build an approach together. Ask your healthcare professional to refrain from using big words, and if they must be used, ask them to explain in detail using drawings, pictures and/or actions.

In my own practice throughout large acute hospitals in London, I have employed various changes to ensure people with learning disabilities and their families receive the care they need and deserve. This includes:

Seeing carers as experts: carers often know the person they care for better than anyone else and should therefore work in close partnership with hospital staff.

Double appointments: this enables the healthcare professional to have more time with the person and their family member/ support worker, ensuring they can tune into the person’s non-verbal and verbal frequency to gain better insight into their needs and requirements.

Environmental changes: quieter waiting areas, reduced noise, calming lights and the right equipment can improve the overall appointment experience.

Flexible appointment times: prioritising people with learning disabilities for the first or last appointment of the day ensures the clinic is quieter and there is less of a rush.

No fixed visiting times on wards: this enables people with learning disabilities to be supported by a person who knows them well throughout their stay, while also helping them to relax and have their emotional wellbeing met. It also permits health staff to understand the person’s needs better so they can pick up on subtle changes in their health and get things right for them during their stay.

Adapting communication styles: healthcare professionals should use fewer words and shorter sentences, and consider using photos, signs and symbols to aid communication.

Hospital passports: these documents tell healthcare staff about the person and their health needs, providing useful information about which reasonable adjustments they need, their likes and dislikes, and how they communicate.

Alert/flagging systems: systems can identify when a person has a learning disability, so staff can be forewarned and make adjustments as required.

Anticipating needs ahead of appointments (rather than responding to difficulties as they emerge) is essential and is right at the heart of why it is so important to genuinely engage the person and those who know them best in their care and treatment. It is a central aspect of ensuring diagnostic overshadowing is avoided.

Diagnostic overshadowing occurs when a healthcare professional assumes that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors such as biological determinants.

The importance of learning disability nurses

Whether you are a family member, carer, support worker or a person with a learning disability, if you feel as though you are not getting your needs met, ask to see a learning disability nurse. They will be able to advise you on what reasonable adjustments are in place and how they can assist the hospital staff in effectively caring for the person with a learning disability in a tailored, person-centred way.

Learning disability nurses are able to assist in all the ways identified above regarding reasonable adjustments, addressing diagnostic overshadowing, acting as a professional advocate for the individual with learning disabilities, assisting and enabling the person to understand what is happening to, with and for them, and supporting the person and those who know them best to navigate the healthcare system in a tailored way that meets their needs. Throughout, the learning disability nurse should assist in the provision of lawful, effective and personalised care.

Conclusion

For health and wellbeing to be improved, there needs to be a greater awareness that certain health conditions are more prevalent among people with a learning disability and to make sure GPs look out for the conditions set out above as well as sensory impairments, mental health problems or epilepsy. Some conditions that are often seen as minor (e.g. constipation) can have fatal consequences if they go unnoticed.

There needs to be a greater focus on prevention rather than cure. One solution is to ensure that there are more learning disability nurses, with investments in training and placement opportunities to ensure this happens. This group, as well as supporting people with learning disabilities, also promote awareness, advise on care and treatment approaches and interventions, and advise on which reasonable adjustments should be implemented to ensure more effective outcomes and reduce inequalities.

This article was first published in www.learningdisabilitytoday.co.uk issue 3.