Making clinical consultations inclusive for people with learning disabilities

It is not known how many people in the world live with a learning disability or autism, or both (PWLDA) (Olusanya et al, 2023). In England, it is estimated that more than 1.3 million people have a learning disability, including 950 000 adults over the age of 18 (Public Health England, 2023). Around 2.16% of adults and 2.5% children in the UK are believed to have a learning disability (Mencap, 2024).

The Department of Health and Social Care (2001) defines a learning disability as ‘a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood’. A learning disability is a lifelong condition, but its severity varies considerably, and is usually assigned a mild, moderate, or severe classification (Public Health England, 2023). Autism and learning disabilities often co-occur, but evidence on their prevalence is scarce. Recent NHS Digital data suggest that PWLD who have been diagnosed with autism had increased from 19.8% in 2016–17 to 28.6% in 2020–21 (NHS Digital, 2021a).

People with learning or other disabilities face significant health inequalities and poorer outcomes. They are twice as likely to develop long-term physical and mental health conditions, and often die up to 20 years earlier than people without disabilities (World Health Organization, 2023). In the UK, life expectancy for a person with a learning disability is 27 years shorter for women and girls and 23 years shorter for men and boys. However, over the past 5 years, life expectancy for PWLDA has increased by approximately 2.5 years (Learning Disabilities Mortality Review, 2022).

The National Institute for Health and Care Excellence (NICE) suggests that people with a learning disability are three to four times as likely to die from avoidable medical causes. Most deaths in this population can be avoided if timely and effective treatments are provided (NICE, 2021).

Prescribing is the most common intervention patients receive in primary, hospital and community NHS settings (NHS Digital, 2024). In the year 2021/22, the costs of prescribing in England alone were a staggering £17.2 billion. Around 55% of the costs were for medicines prescribed in primary care, and 44.3% of the costs were for medicines dispensed in hospitals (NHS Business Services Authority, 2022).

People with a learning disability are often prescribed multiple medicines because they may present with multiple morbidities or are reported to have challenging behaviours (NHS England, 2019a). Antipsychotics, antiepileptics and benzodiazepines tend to be the most commonly prescribed medicines, often in the absence of a mental health diagnosis (NHS Digital, 2021b).

Prescription medicines can be prescribed in the UK by a range of health professionals, including GPs, hospital doctors, dentists, nurses, pharmacists, optometrists, physiotherapists, podiatrists, paramedics and therapeutic radiographers (NHS, 2018). The increased demand for healthcare services and the decline in the number of GPs continues to create an expanding space for the non-medical prescriber (NMP) workforce to develop new ways of working and new models of care in primary, secondary and tertiary care settings (Armstrong, 2023).

The NHS Long Term Plan aims for an additional 20 000 NMPs and social prescribers to support care delivery in primary care settings (NHS England, 2019b). Recent data suggest that there are 59 326 nurses (Nursing and Midwifery Council (NMC), 2023); 18 042 pharmacists (General Pharmaceutical Council, 2023); 2543 paramedics (Health and Care Professions Council (HCPC), 2022); 2000 physiotherapists (Frontline, 2023); and more than 166 therapeutic radiographers (HCPC, 2019) with supplementary or independent prescribing annotations. The number of non-medical prescribers is likely to exceed 90 000, as the number of prescribers is not routinely published by the HCPC.

Given that non-medical prescribers work across various healthcare settings, the likelihood of interaction with PWLDA is significant. Yet, overwhelming evidence shows clinicians' lack of training, knowledge and confidence when providing care to this population (Maddox et al, 2019; Doherty et al, 2020). As a result, they often struggle to make reasonable adjustments for PWLDA in their clinical practice (Doherty et al, 2020). This barrier to providing safe and high-quality care to PWLDA led to the development of mandatory training on learning disability and autism for all registered health and social care providers from July 2022 (Care Quality Commission, 2023).

Many clinicians rely on specialist input from learning disability nurses, whose numbers have been steadily decreasing over the years. Since 2009, there has been a 42% decline in registered learning disability nurses in England, from 5553 to 3214 in 2021 (Plymouth Marjon University, 2023). This not only paints a bleak picture for specialist learning disability nursing provision, but also underscores the importance of upskilling the health and social care workforce to reduce and prevent catastrophic outcomes for PWLDA.

The updated Core Capabilities Framework for Supporting People with a Learning Disability (Skills for Health, 2019) details the skills, knowledge and behaviours – referred to as capabilities – for health and social care staff providing care and support for PWLD. It is also a useful guide to universities and other training providers to standardise training, enhance its relevance to practice and improve its quality and focus. Not surprisingly, knowledge, understanding and behaviours relating to medicines use have been highlighted as key capabilities, especially when providing care for physical health, mental health, managing challenging behaviours, epilepsy, nutrition, hydration and dysphagia, reducing inequalities and avoiding over-medicating PWLD (Skills for Health, 2019).

As the largest training provider of non-medical prescribing training in the UK, currently training over 800 every year, the University of the West of England (UWE) recognises the potential for this training to be far reaching, potentially having an impact on the quality of care delivered to PWLD in the UK and beyond. The university reached out to the Brandon Trust, a charity supporting 1600 children, young people and adults with a learning disability, autism or both in an effort to co-design the UWE prescribing training to meet the needs of PWLDA (Brandon Trust, 2024). The project team worked with the Brandon Trust's panel of experts, called the Adventurers, formed in December 2020 (Brandon Trust, 2024). This is a group of 14 PWLDA, aged from 25–50 years, based in the south-west of England, who meet regularly online to discuss and inform the design and delivery of the organisation's initiatives.

This article describes the process and outcomes of the co-production collaboration, and provides recommendations to prescribing training providers on how to enhance their learning disability training.

Review of the prescribing curriculum

The university held a number of workshops online with 10 Adventurers to discuss the Royal Pharmaceutical Society's Prescribing Competency Framework (RPS, 2021). This is a guiding framework for prescribers and prescribing training providers detailing the skills and competencies needed to provide safe and effective prescribing (RPS, 2021).

The aim was to understand the Adventurers' perspectives on what ‘good’ looked like in relation to the skills and competencies listed in the framework. Table 1 summarises the Adventurers' key success indicators for each of the 10 competencies of the framework.

Co-developing learning and teaching activities

After annotating the RPS Competency Framework with potential training areas and indicators of successfully achieving competency, the Adventurers and the academic team decided to focus on improving communication skills with PWLDA. Communication is identified by PWLDA as the main factor inhibiting them from accessing and receiving good-quality care (Badcock and Sakellariou, 2022).

Risks to patient safety and harm have frequently been attributed to poor communication (Mencap, 2018; Ramsey et al, 2022). Clinicians also highlight communication, and failure or inability to engage with alternative ways of communication in accordance with PWLDA needs, as the most challenging aspect of providing care for PWLDA (Badcock and Sakellariou, 2022). To help prescribing students improve their communication skills with PWLDA, the team co-produced a 15-minute video (YouTube, 2023) with the Adventurers. In the video, the Adventurers discuss what makes clinical consultations inclusive and respecting of their needs, and the information they would like prescribers to communicate to them about their medicines.

Eight top tips for future prescribers are provided at the end of the video, including:

• Introduce yourself and smile (even under a mask!). We like happy, smiley people
• Speak slowly and use simple language when explaining things. Give us time to process information
• Talk to us instead of our carers. Give us time and space to explain things and answer your questions
• There are many people involved in the prescribing of our medicines. We prefer consistency as much as possible
• Appointment time is very important to us. Please keep us informed if you are running late
• We want to be part of ALL decisions about our health and medicines
• We like to know the names of the medicines we are taking, what they do, their side effects and how to take them
• Be patient, kind, caring, understanding and a good listener!

The prescribing students were then asked to reflect on the content of the video and the Adventurers' indicators for success, and consider how they could improve experiences for PWLDA in their own clinical practice. Their reflections and ideas were then assessed as part of their prescribing log assessment (a portfolio of evidence of learning in practice).

‘Hands-on’ communication training by the Adventurers

In 2023, the Adventurers started delivering live communication training sessions with clinicians undertaking prescribing training at UWE. The sessions were delivered online (through Microsoft Teams), as part of the prescribing training programme. To date, eight live training sessions have been delivered, training over 800 prescribing clinicians. Box 1 shows some of the feedback provided by the prescribing students.

Box 1.Students' feedback on communication training‘As the mother of a daughter (with both ASD and LDs), I really appreciate the time, effort and involvement with the Brandon Trust and yourselves, have made to understand the difficulties of living with learning disabilities, and in particular autism. I hope this good work and training continues as it not only benefits the patient, but also reduces the stress on families when using the healthcare system’‘I have learnt about not being scared to ask those difficult questions or being worried I may offend the patient by asking them those questions. I have printed out some of the medication easy to read leaflets – we already use easy read leaflets but do not have any for medications, which will help greatly. I have put in that our out-of-hours door for weekends is not user friendly for wheelchair patients as not automatic. I always try to make eye contact and take my time and talk to the patient but will continue to do so’‘It was a great experience to learn about the experiences they have gone through directly. Do not feel embarrassed to be repetitive or do not feel that you are belittling them when you are checking their understanding. They are just individuals who may be sexually active, love to drink alcohol or may even be taking drugs’‘It was lovely to be able to have first-hand experiences shared with us regarding their care. The statistics around care for people with disabilities are frightening so I thank them for giving us their time so we might be able to help people better in the future’

The students discussed their preferences with the Adventurers during a clinical consultation and asked questions about appropriate and less appropriate prescribing behaviours. Through this approach, the clinicians were provided with a safe learning environment to communicate with PWLDA and ask questions they may not be comfortable, or feel safe to ask within their organisations/teams.

These training sessions helped clinicians gain a deep understanding of the challenges PWLDA face and their needs. Equally, the Adventurers were exposed, for the first time, to the insecurities and uncertainties of clinicians when dealing with PWLDA, and as a result of their discussions with clinicians, improved their understanding of the healthcare system and the roles different clinicians play within it.

Programme impact

Changing clinical practice is difficult as it requires learning a new practice and unlearning previous practices (Gupta et al, 2017). This article only reports the initial results of the co-production collaboration. Further evidence of long-term impact, if any, will be assessed in the future.

Competence in communicating with PWLDA

The prescribing trainees' knowledge and competence were assessed formally through a written portfolio of evidence, and informally through engagement with the Adventurers' communication training sessions. Miller's Framework (1990) was a useful tool to assess clinicians' competence in communicating with PWLDA. The framework includes four levels of competence, starting with knowledge (knows) at the lowest level, followed by competence (knows how), then performance (shows how) then action (does) (Miller, 1990).

Box 2 includes extracts of evidence submitted by students in relation to this learning. All students achieved the knowledge and competence levels of Miller's Framework, but many also achieved the performance and action levels of the framework. The different achievements were mainly due to the wide variety of clinical settings in which prescribing trainees work, and the availability of supervisory support and specialist learning disabilities input in their setting.

Box 2.Extracts from students' portfolio submissionsCardiology nurse‘Sarah was diagnosed with congenital heart problems since birth. She has learning difficulties and is partially deaf. She lives with her parents, who are advocates and a great support to her, and Sarah can communicate very effectively once she feels comfortable in her surroundings. We needed to reiterate to Sarah and her family the importance of taking her medications as prescribed, but with particular emphasis on her anti-coagulation. To ensure that the risk of stroke is minimal (<1:1000) following a direct current cardioversion, we must ensure that anticoagulation is taken as prescribed for at least 4 weeks prior and for a minimum of 4 weeks post-procedure. We ask patients to sign to say they have taken it as prescribed, with no doses missed on the consent form, so this information was important for Sarah and her family to understand. Sarah had no problems with taking medication and her parents took on responsibility of ensuring she received all medications as prescribed. I gave Sarah and her parents our contact details and asked them to let us know which option they would like to try once they had some time at home to discuss it. We explained there was no pressure and that either option was an acceptable treatment option; they knew what was involved and the indications for following either one. They also knew they could contact us at any time to ask questions and the learning disabilities nurse would follow up in a few days' time. They decided to opt for a direct current cardioversion, so we arranged a further clinic appointment. We felt consistency of care was important, and Sarah told me she looked forward to seeing me again, which highlighted that we had established a good rapport. Sarah went on to have her procedure. We chose a day that was a little quieter and an area in the department where she had space and privacy. Consent was taken verbally on the day and she explained to me in her words what the procedure involved and why we were doing it. This was with support of the learning disabilities nurses.’Hospital nurse‘I have discussed with my prescribing colleagues and my designated prescribing supervisor the resources available to patients in the Trust. I was surprised that many clinicians do not have easy read materials readily available for patients, especially as many of the patients with learning disabilities see the same clinician. I am now aware that our translation service provider has changed since Covid-19, and most translators are accessed by telephone. I recognise that, for some patients with communication barriers, a telephone consultation may not be appropriate. I have raised this with the learning disabilities team as they were also not aware of this change since Covid-19 restrictions.’Dietitian‘This patient was seen with a student dietitian and through clinical supervision, and we conducted associated learning and reflection through multiple reviews.

• The role of enteral feeding tubes in medication administration and prescribing the correct route: the patient was often too drowsy to take oral tablets. Therefore, their medications were prescribed in an appropriate form to be given down the nasogastric tube; e.g. liquid, crushable or dispersible, then converted back to oral forms once they were able to take more orally.
• Importance of getting collateral history; e.g. usual food likes and dislikes, usual eating patterns, involving family, friends or carers, particularly when the patient cannot fully advocate for themselves.
• The importance of multidisciplinary support: e.g. I discussed and explained the plan with learning disabilities specialist nurses and speech and language therapist. This allowed the sharing of useful information for example the patient's usual diet at home was sandwiches, and they were too dysphagic to manage them safely, and this was part of the reason they were not eating the texture modified diet.
• Being aware of vulnerability of this patient group: increased statistics of poorer health outcomes.
• Plans, communication and strategies should be adapted to support this patient: e.g. using signs to communicate likes and dislikes to support menu ordering.
• Always referring patients to learning disability specialist team if not done already, and communicating with them to make the best plan for the patient. Therefore, any clinical decisions, including prescribing ones, can be made with the best support in place.’

Widening the reach and accessibility of training

The co-produced materials were made freely accessible, and were shared with the UWE prescribing team's wider network of non-medical prescribing (NMP) leads with regional NHS Trusts and other organisations to increase their reach. The NMP leads then shared the materials with prescribers in their Trusts through their NMP forums. Many acknowledged that this resource was also shared with junior doctors and other physicians. The following quotes are some of the responses received through our regional network.

‘We will be sharing this with our NMPs through the prescribing forum – but wondered if it would be OK to share with the wider Learning Disabilities team as well. For instance, there may be junior doctors new to [the Trust] who may benefit from this video.’

‘Thank you for this superb video. It's valuable for all prescribers, not just learners.’

‘Just to let you know, in Somerset we will be sending this out via our weekly primary care update as a scatter gun approach. But we will also be contacting those directly who are future prescribers.’

‘Thank you for forwarding this. I watched it out of due diligence to be honest, but actually, once I started to write a reflection on it, I really began thinking about the issues mentioned. It got me thinking how wonderful it would be to have a more autism/sensory/disability-friendly clinic in the children's outpatient department. Just like how in supermarkets and soft plays the lights get lowered, phone ringers are turned down, TV off, spaces less crowded, time keeping prioritised, etc. I think I may take this conversation to my matron as she's matron for ambulatory care and talk about it some more … Thanks for the inspiration!’

In addition to widening the reach and potentially the impact of the training materials, this sharing activity changed the relationship between the higher education institution and the healthcare organisations (employers of students). It created a partnership to harness the resources and networks of both parties to create change on the ground and improve the quality of care for PWLDA.

Further impact

Further changes occurred as a result of this co-production collaboration with the Adventurers. The Adventurers reported:

• Enhanced computer skills and confidence throughout the delivery of the online communication training sessions
• Improved knowledge and understanding of potential non-pharmacological treatment options. The Adventurers learnt from students about social prescribing and the various non-pharmacological approaches that exist for the management of health conditions. They were encouraged to discuss those with their healthcare teams
• Increased understanding of the healthcare system, which consequently improved the communication training. The Adventurers report that this collaboration is helping them and the Brandon Trust build better relationships between primary care and social care. For example, they realised that community pharmacies that usually provide dosette boxes for PWLDA are not paid to do so, but despite this, many pharmacists continue to offer this service, albeit at their own expense. The Adventurers appreciated the input of community pharmacists and had a greater understanding of the challenges that may stop them from providing this vital service
• Increased co-production activities with other universities and organisations. The Adventurers won the regional co-production award at the south-west regional finals of the Great British Care Awards and are shortlisted to win a national co-production award (Carr, 2023)
• Awareness of the power of their voice in shaping healthcare training, and service design and delivery, which increased their confidence in their skills and expertise, and enabled them to be advocates for PWLDA.

The UWE Independent Prescribing Team also benefited from this co-production collaboration. In addition to being supported by the Adventurers to train prescribers, the team has the blueprint of a co-production model with charities and other organisations to enhance the prescribing training. This model is being adopted to co-design other university programmes. The team was awarded a Community Impact Award by the University of the West of England for strengthened connections with communities in the west of England to shape and drive future prosperity, health and wellbeing, equality and diversity, sustainability, and cultural and community development across all parts of the region and to create opportunities for all. Furthermore, co-author FMB, a prescribing student at the time, was Awarded the Sarah McMullen Disability Studies Prize for distinct and innovative work in an area of disability in 2023 for her reflections on the co-produced learning materials and ensuing actions.

Conclusions

People with learning disabilities, autism or both are significantly affected by health inequalities and sub-optimal care. Communication is one of the main obstacles standing in the way of PWLDA accessing healthcare and health professionals providing high-quality care. Prescribing medicines and other interventions occurs at almost every healthcare setting, and at most encounters with health professionals. There is, therefore, scope for delivering training and education interventions to improve prescribers' communication skills when encountering PWLDA.

Co-producing communication training with PWLDA provides authenticity and contextualises the training to the people's lived experience. In addition to gaining competence in communicating with PWLDA and understanding their needs, the training enables prescribers to identify issues within their clinical settings that may impact the quality of care for PWLDA and change processes in their organisations to address them. The Adventurers highlighted other areas in the prescribing curriculum warranting attention, such as increasing clinicians' confidence when assessing mental capacity and stopping over-medication of people with a learning disability. More research and reporting on interventions to address these areas is needed.

Key Points

• Many health professionals lack confidence when communicating with PWLDA. This often results in poor care delivery
• Prescribing medicines and other interventions occurs at most healthcare settings and by a vast range of health professionals
• Improving health professionals' communication skills can enhance the safety and quality of their prescribing, and ultimately the care delivered to PWLDA
• Co-designing and delivering communication training with PWLDA ensure its relevance to their lived experience. Interactions with PWLDA as part of a university training programme provides a safe space for health professionals to challenge their assumptions and discuss their concerns with PWLDA
• Health professionals trained by PWLDA reported increased confidence and competence when communicating with PWLDA. Many also changed processes and practices within their clinical settings to improve their services