Understanding the Gap: Learning Disabilities and the Structural Barriers to Equitable Healthcare

It is common knowledge in the care sector that adults living with a learning disability (LD) have poorer physical health than those living without. This is due to a number of reasons where there are often barriers to healthcare services due to the needs of the individual not being met. This review will identify just some of the barriers/themes to why healthcare services do not deliver the most effective care. The 2022 LeDer (Learning Disabilities Mortality Review) found that the median death was 82 for men without a LD, in comparison to just 63 of men who have a diagnosis of LD. This gap is significant, and the statistics published in the LeDer 2023 found that 42% of deaths of people with a learning disability were avoidable[4]. The LeDer has identified areas for improvement across the country, the purpose of my research is to identify what I can do in my own practice to support better partnership working with health services to ensure any avoidable harm or even death is reduced. The main cause of death identified was Aspiration Pneumonia, where individuals have aspirated. One of the service users I support has a diagnosis of dysphagia, and 15% people with a LD have dysphagia, research about this is key too raising awareness and making practice better to reduce the risk of death or harm from this cause[5].

There is lots of research and case studies regarding inequality in the healthcare sector for adults living with a learning disability (LD), I have identified the following themes which I feel are the most prominent barriers effecting the individuals I support with equal access to healthcare; communication and discrimination. As part of the literature review I will identify and research published and recognised information regarding each theme and critically analyse the literature, to review different ideas, thoughts and findings on each theme. Each piece of literature discussed will be focused on the topic "what are the barriers to equal healthcare for those living with a LD diagnosis and how providers can support with equal access to healthcare." The literature available will support understanding and knowledge to what the barriers are and how as I provider I can overcome these barriers to make the service I run better and therefore improve the quality of life of those I am supporting.

Communication
All of the individuals which I support have communication needs or difficulties, it is 'estimated that 57.9%' of people with a LD and '40% of people with Autistic Spectrum Disorder ASD' have difficulties with their communication when interacting with others [6]. Communicating about our own health and how we feel in our bodies is critical to identifying and acting on healthcare needs. Ineffective communication can result unmet needs are therefore more serious health consequences which can result in death if not dealt with effectively. [6] Communication Difficulties (CD) can lead to adults not being able to obtain or understand information about their health or healthcare services. Often information from healthcare services is given in a written text format which adults with a CD can often not understand, therefore making them reliant on another person to support them or tell them, taking away independence and creating a barrier to access this information for themselves. It has been identified that written and verbal information given by healthcare services was 'difficult to understand' and gave 'unclear explanations to instructions' leaving individuals feeling 'incompetent' due to lack of understanding about procedures and personal diagnosis's which can result in the need not being met resulting in preventative healthcare needs not being met leading to more healthcare needs. It was identified that with healthcare providers being trained in communication methods, new approaches to care needs and empowering the individual to communicate in a way which was most effective for them showed improvements in communication with individuals, making people feel more confident in sharing their diagnosis with the practitioner allowing the healthcare service to have a better understanding of them as an individual. [6] This article identifies that communication was the most prominent barrier to healthcare services and identifies that 'abstract language, strict linear thinking' 'lack of training' result in individuals not being able to understand and it identifies the need that healthcare providers must use different methods of communications to support patient safety.

Not identified in the above article was the communication barriers that arise when communicating with an individual and their caregiver. Article [7] identifies the preconception that practitioners can have regarding a person's capacity and their ability to make decisions which resulted in practitioners communicating directly with the individuals caregiver. Although it is important to include and work in partnership with those of a LD, it is equally as important to make sure the person is treated as an individual and consulted about their own healthcare needs.

Both of the articles [6] and [7] support experiences that I have witnessed and experienced myself in my role. Article [6] focuses on the experiences of people with a LD and the communication which was shared with them directly, and article [7] focuses on services communicating with the care giver rather than the individual. Both relate to the Mental Capacity Act 2005 (MCA) and a persons ability to make decisions based on their ability to use, retain, weigh up and communicate information as a process to make decisions about their health needs. Principle 2 of the MCA 'all practical steps' ensures we are giving someone all the information they need in an accessible format to support them to make decisions for themselves, article [6] focuses on lack of information given in an accessible format for someone to understand and therefore could hider their capacity to make decisions about their own health because principle 2 of MCA has not been followed. Contrasting to article [7] the article identifies the benefits of having a caregiver present and the importance of their experience and knowledge of the persons communication needs can be shared to allow the practitioner to communicate directly with the individual more effectively. The Article [6] does recognise, similarly to [7], that some practitioners relied fully on the caregiver, leaving the patient feel 'disempowered' and not respected as they were not incorporated into conversation about their own care. Article [7] talks about the indirect discrimination by practitioners by assuming that the individual does not have capacity to understand or make decisions about their own health, against principle 1 of the MCA. This will lead to the individual feeling unempowered and out of control. In my experience, talking to the primary care giver also creates a barrier as they will not gain the views or feelings directly from the individual, this can lead to information being given to the practitioner on an opinion or from their point of view, critical information about health needs can be missed or misinterpreted if it has not come from the individual themselves. Both barriers identified in articles [6] and [7] my staff and I have experienced when supporting someone with a LD to access care and support services. I was recently supporting staff with an individual who had been admitted into hospital after a decline in their health, it was not until 5 days later that the staff member was told the person had a fracture in their spine, the information was not shared with the individual at all and the staff were left to share this information in an accessible format with the individual. Not only, does the person not know why they are in pain, they were deemed as lacking capacity and this information was not shared with them directly, making them feel out of control about their own health. Article [8] supports the other articles analysed above[6][7] and supports that other individuals felt that health care staff failed to change and support the individuals preferred method of communication, leading to lack of understanding effecting their ability to share any worries or concerns with practitioners. Articles [6][7] support the hypothesis, showing there is a barrier via communication between people with a LD and Health services. I can use the findings from these articles to support in collecting my own data. I can use [6][7] in writing questions for my research and therefore how I can recognise any concerns in communication and implement strategies to make this better between provider and GP.

Discrimination
As already discussed above where practitioners have mis assumed a person's capacity, and ability to communicate directly, there is often indirect discrimination for someone with a LD when accessing healthcare services and this can be a barrier to equal services in comparison for someone who does not have a LD. This is something I have experienced in my own job role where healthcare practitioners fail to make reasonable adjustments, or have adequate understanding, knowledge and training on supporting someone with a learning disability. The healthcare services face limitations with their funding and therefore the resources and adjustments they are able to make, often these adjustments are critical for equal access to healthcare and necessary to ensure the right care is given. In line with the Equality Act, reasonable adjustments should be made to support those with a protected characteristic to have fair access to healthcare. Article [8] is a qualitative study to identify if and how individuals experienced discrimination when accessing health services, half of the participants in the interviews felt they had been unfairly treated. A key theme was that individuals were declined home visits and that often GP surgeries were 'unhelpful' and support was not there for the caregiver, or their views and expertise dismissed by health professionals. Often online or telephone consultations had been offered, which works for some individuals but not for others as is not accessible for everyone with a LD. When an appointment was given, the study shows that caregivers felt that the time allocated was not enough to effectively support the individual and address their needs. Other caregivers also reported that concerns and complaints were not dealt with, and worried that further follow up would have 'adverse impact on future care'. Caregivers shared in [8] that clinical letters, or information was not shared with them which forms a barrier in how the caregiver is able to support the adult with their healthcare. Caregivers also reported that they felt they could not make or raise concerns or complaints about the services, in the fear that this may effect future relationships and the care received from health services. Article [8] found that 12 individuals and 14 caregivers had been subject to unfair treatment and 'distressing or traumatic' experiences when using health services such as; bad discharge procedures, incorrect medication, unnecessary investigations and refusal for health services to investigate health concerns further due to their LD (resulting in diagnosis being missed), neglect from basic needs when using hospital facilities. Some people in the study felt like the individual was discriminated against due to their LD, and lack of knowledge and understanding from the staff working in healthcare. However, some people in the study felt this was not due to discrimination, but because the health services were treating everyone in this way where care given was not adequate. Due to the treatment received, some people found that they did not want to return for further treatment, resulting in more concerns to their health needs. Alongside poor treatment, it was also recorded that some staff communicated in a way which was 'impolite or unfriendly' [8], making people feel unimportant and treated like a child. I have experienced each of these examples with a surgery where 8 of our service users are registered, our staff often share with me how disappointed and deflated they feel after numerous attempts too gain support from the GP surgery and it is not given. On multiple occasions GP appointments are not available, surgeries have been dismissive of concerns and home visits not available, or long waiting lists for an annual health review/s. When appointments have been available, there has not been the correct communication tools In place, relying solely in the caregiver to answer questions. Care givers have shared that they felt rushed and disappointed with the outcome as concerns have not been resolved or listened too appropriately, the surgery has failed to make reasonable adjustments and work in partnership with the care provider. When trying to raise concerns or complaints, the staff have had to come to management in fear that they will not be listened too or dismissed. The queues to speak to reception are lengthy, which take away from support time available and when speaking to reception they have been unempathetic and not understating of providers policies and concerns from the individual. I can use this article to support my questions / what data I collect, based on my own and others experience I can formulate questions based on these findings to see if there are concerns and what needs to be addressed from my findings.

In conclusion, I agree with the points discussed in articles [6] [7] [8], I can relate with the issues raised and the research conducted about the inequalities faced. Article [8] gives an example of a participants medical diagnosis being missed due to their intellectual disability and neglect from the healthcare staff. As discussed above, I have recently been supporting a staff team where a learner has been subject to long waits for an ambulance and rapid response teams. Due to the persons disability, staff feel he was not treated as equal and dismissed as behavioural. After chasing the hospital team, he was admitted a DOLs grated and scans completed. Upon scans, it was found that the individual had a fractures spine and the behaviour exhibited was due to pain not due purely to their LD. I can use this example as part of my research and how this incident could have been dealt with better or what as a provider we could have done to challenge health services more. The qualitative study in article [8] provides different perspectives from caregivers, adults with a intellectual disability, shows real life quotes and examples of how they had seen discrimination in services and on the contrary also gives examples of when 'good practice' had been followed and staff had gone 'beyond the call of duty' resulting in higher levels of support for those with an disability. I will also aim to recognise any good practice exhibited to ensure that this continues and share with others what is already working well. [8] talks about the validity and limitations of the data collected, in that there would be differences in the views of paid and unpaid careers, the study was mainly conducted with unpaid careers and there was no patients with cultural backgrounds of Black Asian or African. My data will be conducted from paid careers, which will give a new perspective on the findings of article [8]. I also support learners who are from African background and will include them in my data to fill this gap. Article [7] uses similar qualitative data where interviews were conducted, but only with physicians working in healthcare, giving a different perspective to article [8][6]. Much like in article [8] where themes were identified which effect the physicians way of communicating to someone with an intellectual disability. Article [6] and [7] share themes about how communication and how people with a intellectual disability were not given information in accessible formats and the reliance and importance of having a caregiver present. The evidence given in articles [6][7] will support my research and findings about how I can work with local GP surgeries to make communication better. All of the articles [6][7][8] are given in qualitative data, from interviews and other existing articles and research, none of the literature analysed has quantitative data, due to the nature of the studies, qualitative data is more based on experience and gives more examples of what the barriers are and what recommendations can be made moving forward to support better practice in healthcare services. However, quantitative data would have been better to gauge statistics, graphs to recognise patterns and trends in the analysis, to identify which areas are the most in need of further action to support good practice. The Articles [6][7][8] have supported me to identify key themes into my research and how I best to conduct my research, through a mix of quantitative and qualitative data, to pinpoint one or two key areas to focus on, to then use and work with GP practices to support in better health services for the individuals I support.

References
[1] Learning Disability - Health Inequalities Research | Mencap Updated date unknown. Date Accessed 5.3.23
[2] Diploma in leadership for health and social care (second addition) book by Tina Tilmouth, Jan Quallington. Page 258-260. Published 2016. Date Accessed 16.3.23
[3] UK Policy Framework for Health and Social Care Research - Health Research Authority (hra.nhs.uk) Date Accessed 18.3.23
[4] Learning Disability - Health Inequalities Research | Mencap Date Accessed 3/7/24
[5] LeDeR-Annual-Report-2022-23-FINAL-PUBLICATION.pdf (icb.nhs.uk) Date accessed 3/7/24
[6] Barriers and Facilitators to Healthcare Access in Adults with Intellectual and Developmental Disorders and Communication Difficulties: an Integrative Review | Review Journal of Autism and Developmental Disorders (springer.com) Date Published 30th May 2022. Date Accessed 3/7/24
[7] Communicating with Patients with Disability: Perspectives of Practicing Physicians | Journal of General Internal Medicine (springer.com) Date Published 18th March 2019. Date Accessed 3/7/24 [8] Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers | PLOS ONE Date Published August 12th 2013. Date accessed 3/7/24

By Jane Strawbridge | 29 May 2025