Health-care access and experiences of people with a learning disability from an ethnic minority background: service user and informal carer perspectives

Approximately 1.5 million people in the UK are living with a learning disability, which affects intellectual functioning, communication and the ability to understand new information (Department of Health, 2001; Mencap, 2021; Office for Health Improvement and Disparities (OHID, 2015). People with learning disabilities experience stark health inequalities, including significantly reduced life expectancy compared to the general population. The Learning Disabilities Mortality Review (LeDeR) reports that, on average, people with learning disabilities die around 20 years younger than those without a learning disability (Learning Disabilities Mortality Review, 2023) and further research highlights they experience a substantially higher burden of comorbidities at a much younger age compared to the general population (Cooper et al., 2015; O’Leary et al., 2018). Moreover, inquiry into premature deaths of people with a learning disability found that 38% of deaths were from avoidable causes (i.e. deaths that could be avoided by provision of good-quality health care; LeDeR, 2023), compared with around 21%–22% of deaths in the general population in England and Wales [Office for National Statistics (ONS), 2024]. These inequities contribute to poorer health outcomes, increased rates of preventable mortality and highlight systemic failings in addressing the health needs of people with learning disabilities (Emerson and Hatton, 2014; LeDeR, 2023).

Despite the introduction of policies such as the Equality Act (GOV.UK, 2010), the Care Act (GOV.UK, 2014) and the NHS Long Term Plan (NHS, 2019), access to appropriate and equitable health care for people with learning disabilities remains limited (Mizen et al., 2012; Ramsey et al., 2022). Research consistently highlights that barriers to good quality health care operate at multiple levels. At the system level, issues such as limited accessible transport, poor coordination between providers and inadequate reasonable adjustments restrict equitable access (Ali et al., 2013; Doherty et al., 2020; Heslop et al., 2013; Ramsey et al., 2022). Within services, a lack of professional knowledge about learning disabilities can mean service users are not identified, symptoms are overlooked and diagnoses are delayed or inaccurate (Ali et al., 2013; Doherty et al., 2020; Heslop et al., 2013; Ramsey et al., 2022). At the individual level, people with learning disabilities may feel anxious or lack confidence when engaging with health care, while carers often report being insufficiently involved in decision-making or carrying an unsustainable burden of responsibility (Ali et al., 2013; Doherty et al., 2020). Collectively, these barriers perpetuate inequities in health-care outcomes and increase the risk of avoidable ill health (Allerton and Emerson, 2012).

For people with learning disabilities from ethnic minority backgrounds, health inequities are magnified through the intersection of disability and ethnicity. Ethnic minority groups in the UK, defined as those who do not belong to the White British majority (Gov.UK, 2021; The Law Society, 2022), already experience lower rates of health service contact, greater unmet need and disparities in treatment access (Das-Munshi et al., 2018; Lowther-Payne et al., 2023). Recent evidence suggests that life expectancy for people with learning disabilities from ethnic minority backgrounds is approximately half that of White counterparts with a learning disability (34 years compared to 62 years) (NHS Race and Health Observatory, 2023). Contributing factors include racial stigma, unconscious bias, lack of cultural sensitivity and limited access to advocacy or interpreting services (Ali et al., 2013; Hall et al., 2015; Robertson et al., 2019). These barriers can result in what has been termed “double discrimination”, whereby individuals are disadvantaged simultaneously on the basis of both disability and ethnicity (Robertson et al., 2019; Umpleby et al., 2023).

Although some studies have identified specific barriers to health care for people with learning disabilities from ethnic minority groups – such as limited cultural sensitivity, unmet cultural needs and language barriers for carers without interpreters (Ali et al., 2013; Bonell et al., 2011) – the overall evidence base remains limited. Systematic reviews conclude that little is known about the health status or health-care experiences of this group, despite longstanding recognition of their increased vulnerability (Robertson et al., 2019). Calls for more research into the intersection of ethnicity and learning disability have been repeated for over a decade (Ali et al., 2013), yet progress remains minimal. This gap highlights the urgent need to examine whether ethnicity shapes the health-care experiences of people with learning disabilities and their carers, to inform policies and practices that can better address systemic inequities.

In this paper, the term carer is used to refer to informal (unpaid) carers, defined as family members or friends who provide ongoing support to a person with a learning disability without financial remuneration. This service evaluation takes an exploratory approach to understanding health-care experiences among people with learning disabilities from ethnic minority backgrounds and their carers. The focus was on service access and experiences within this population, rather than on ethnicity or culture as an analytic variable in its own right. While the evaluation was not designed to isolate ethnicity-specific experiences, it provides initial insights into health-care access, satisfaction and barriers as reported by individuals and families from minority ethnic groups and highlights the need for future research to more explicitly examine the role of ethnicity and culture.

We focus on exploring the following questions:

This exploratory multi-component service evaluation used two complementary methodologies: a self-report questionnaire completed by people with learning disabilities, and a focus group with carers of people with learning disabilities. This design was intended to provide an exploratory account of service users’ and carers’ perspectives within an ethnic minority sample, rather than a comprehensive or comparative evaluation of ethnicity-specific experiences. The evaluation was undertaken within a local NHS mental health trust in the East of England, which provides learning disability and forensic services across multiple counties.

Questionnaires were distributed to 64 people with learning disabilities who were receiving outpatient care from the community learning disability services of the NHS trust and had previously consented to be contacted for research purposes. Inclusion criteria required participants to be at least 18 years old and from an ethnic minority background. For this evaluation, ethnic minority backgrounds were defined as: Asian or Asian British; Black, Black British, Caribbean or African; Mixed or multiple ethnic groups; or Other ethnic group. Individuals from White backgrounds were excluded. A total of 13 people with learning disabilities completed the questionnaire, yielding a 20% response rate.

Including self-reported data from people with learning disabilities was a deliberate methodological choice, reflecting policy and ethical commitments to amplifying the voices of people with learning disabilities in research and service evaluation, rather than relying solely on proxy accounts from carers. While responses were necessarily limited in scope, this component provides direct insight into service users’ experiences that would otherwise remain underrepresented.

From the sample of people with learning disabilities, those living in the family home were identified, and contact details of their carers were retrieved from the electronic patient record. The second author contacted carers by telephone or email to ascertain interest and availability for an online focus group. Nine carers were formally invited, and six attended the group discussion. Demographic characteristics of carers were collected, though two carers (25%) did not provide demographic information.

The questionnaire and focus group guide were developed by the authors following an extensive literature review and refined in consultation with health-care professionals working with people with learning disabilities.

The questionnaire gathered demographic details, information about participant’s level of health-care use, satisfaction with services, and experiences of reasonable adjustment needs. Items were closed-ended, using multiple-choice responses or Likert scales. To maximise accessibility, the questionnaire was produced in easy-read format (see  Appendix 1).

The focus group guide (see  Appendix 2) was used flexibly to facilitate open discussion. Topics included: positive and negative experiences of accessing health care, barriers to access and suggestions for improvement for both people with learning disabilities and carers.

Paper questionnaires and an easy-read cover letter were posted in June 2024 to each service user’s registered address. Carers were encouraged to support the person they care for in completing the questionnaire where necessary. Completed questionnaires were returned to the project correspondence address, scanned, entered into a Microsoft Excel database and then securely destroyed. Information on reasons for non-participation was not collected.

For the focus group, carers who confirmed availability received an information sheet, Microsoft Teams link and a short demographic form. Reminder emails and text messages were sent two days prior to the session. The group, conducted in July 2024 by the first and second authors, lasted 68 min. After introductions, discussion followed the topic guide, with space for participants to raise additional points. The session was recorded and automatically transcribed via Microsoft Teams. The transcription was then checked against the recording to correct errors.

This project was a service evaluation and thus did not require formal research ethics approval. However, all participants had previously consented to be contacted, received information sheets outlining the purpose of the evaluation, participation requirements and assurances of confidentiality, data protection and voluntary withdrawal. Data were anonymised throughout, with no identifying information retained in the questionnaires or transcripts, and participants were provided with contact details of the project lead in case of queries or concerns.

Quantitative questionnaire data were analysed descriptively in Microsoft Excel, with frequencies and percentages reported.

Qualitative focus group data were analysed using Braun and Clarke’s reflexive thematic analysis framework (2006, 2011). Transcripts were read repeatedly for familiarisation before both the first and second authors independently generated initial codes. Codes were collated into candidate themes and subthemes, which were refined collaboratively and reviewed by the wider evaluation team to ensure coherence and alignment with the evaluation objectives.

Team reflexivity was maintained throughout, with explicit recognition of the balance between research and clinical perspectives in shaping the evaluation design, interpretation and reporting.

Thirteen people with learning disabilities completed the questionnaire and provided demographic information (Table 1). Diagnoses are presented in Table 2.

Responses to the service user questionnaire are shown in Table 3, providing an overview of participants’ experiences of health-care access, support and involvement.

The majority of respondents (69.2%) reported having had an annual health check with their GP in the previous 12 months, although almost a quart (23.1%) reported not having received one. Frequency of GP contact varied, with around one-third of participants (30.8%) reporting seeing their doctor every one to three months, while a similar proportion (23.1%) reported not having seen their doctor for over 12 months. Contact with specialist learning disability services was generally less frequent - nearly half of participants (46.2%) reported seeing a specialist from the learning disability team no more than once a year.

In terms of health-care satisfaction and involvement, most participants reported feeling at least fairly happy with their health-care support (53.9%) and the majority felt either very (46.2%) or fairly (38.5%) involved in decisions about their care. However, experiences of culturally or personally appropriate care were more mixed: while 38.5% reported that staff supported them in ways that aligned with their values and beliefs “a lot or always,” a notable minority (15.4%) reported this occurred “not often,” and several participants did not disclose a response (23.1%).

A small proportion of participants (15.4%) reported using alternative treatments such as homeopathy or faith healing, though the majority (61.5%) reported not using such approaches.

Figures 1 displays the reasonable adjustments participants would like, and Figure 2 presents the reasonable adjustments already in place.

In addition, people with learning disabilities indicated which challenges they experience when accessing health-care support. The most frequently selected barrier was not knowing where to seek help (33.3%), followed by language barriers (16.7%), stigma (16.7%), no reasonable adjustments (16.7%), cultural barriers (8.3%) and digital exclusion (8.3%).

The carers that provided demographic information represented four ethnic groups (Mixed ethnic background, African, Indian and Other Black background) and three religious affiliations (Christian, Hindu, Muslim). All carers were female, aged between 35 and 64 and all had provided caring support for 15 years or longer. Most carers reported full-time caring responsibilities (75+ h), with only one carer reporting fewer than 30 h per week.

Overall, three themes and six sub-themes were developed from the thematic analysis of the carers’ focus group (see Table 4). Each theme and sub-theme are described below with excerpts from the data set.

Carers often felt that they were not valued by health-care professionals, which included respect, acknowledgement of their expert knowledge and their contribution to the governments’ funding. However, they felt pride in their caring role and showed determination to advocate for people with learning disabilities’ rights:

One carer explained that she had a strong informal support network, which offered her valuable knowledge from others with lived experience. She emphasised that this peer support was crucial in helping her navigate the system, and that she would likely have struggled to access such information otherwise. Another participant described how her family worked collectively to provide care:

Although a rewarding experience, all carers expressed the challenges that they experience in everyday life due to their caring role, for example, stress, caring for extended periods of time and giving up full-time employment. In addition, not all carers had access to a wider support system, which included family support and support groups offered by the mental health trust and local government. Carers were not aware of the groups offered by services and often received minimal respite care. Suitable placements were difficult for some of the people with learning disabilities, which led them to live at home with their family, especially after placement breakdowns. This meant that the majority, if not all, of the responsibility for care was on the family and carer:

In addition, culture may influence the level of support carers from ethnic minority backgrounds receive. There can be a fear of being labelled, which influences the likelihood of carers speaking openly about diagnoses. However, the carers in the focus group wanted to support people within their own communities:

When younger, people with learning disabilities were often involved in learning opportunities and activities through school. However, when they grew older, it was more challenging for educational and recreational activities to be arranged. Service users and their carers were eager to participate in everyday activities, hobbies and daily tasks, which would add meaning and fulfilment to their lives. However, carers explained that arranging activities is not a straightforward process and were often arranged by the carer:

In addition to these activities to improve their quality of live, carers also wanted the person with learning disabilities to develop new skills, which would promote their independence and interests. In adulthood, with the absence of a formal education system, people with learning disabilities often relied on the family unit to develop new skills:

Carers discussed that the needs and behaviours of the people with learning disabilities have changed with age. In some cases, they may exhibit more behaviours that challenge, such as aggression, and it can be more difficult to manage:

Further, some of the carers felt that they received a lot of support in childhood, but this consistent support was not continued into adulthood. This was a significant challenge for carers, who were left to support the changing and escalating needs of people with learning disabilities without any additional support:

All carers felt that they had not received sufficient information from health-care professionals regarding diagnosis, finances and the available reasonable adjustments. Particularly, carers were often not fully informed by professionals about comorbid diagnoses and the progression of diagnoses with age. This lack of information led to carers not expecting the progression of diagnoses, which consequently negatively affected the caregivers:

In addition to information, the carers discussed difficulties in being provided services and reasonable adjustments due to limited resources (for example, funding). These reasonable adjustments included quiet rooms in hospitals and schools, appropriate accommodation and the provision of dental care under general anaesthesia. However, this was often not implemented due to lack of resources or staff not informing carers about what is available:

Because of the lack of provision of resources, the wellbeing of both the carer and the service user was often negatively affected. In one circumstance, a person with learning disabilities had been waiting to get a tooth removed despite being in pain due to the lack of availability of an appropriate service with the necessary reasonable adjustments:

Carers discussed the responsibilities that health-care professionals have in supporting people with learning disabilities and their carers. They felt that on occasions, health-care providers had inadequate knowledge and awareness of the needs and support needed for the person with learning disabilities. The signposting to services was unclear and the carers felt that no one wanted to take responsibility over certain duties which led to them reaching out multiple times for the same issue. This often led to carers feeling unsatisfied, being “rubber banded” between services and having to spend time trying to figure out who to contact and resolving the issue on their own:

In addition, the communication and collaboration between services was discussed among the carers, especially as services were sometimes designed with a “one shoe fits all” type policy. To help promote collaboration and specialised care, one carer proposed greater multi-disciplinary working where specialists could collaborate to resolve ongoing issues and further understand the needs of people with learning disabilities’:

However, carers did acknowledge good practice does exist, although not consistent across all people with learning disabilities and their caregivers:

This service evaluation explores the barriers to access and experiences of different health-care services for people with learning disabilities from ethnic minority backgrounds and their carers through a questionnaire and a focus group.

A key theme was the central role of carers in providing support, despite the significant challenges they face. Some carers had familial support systems to help care for the person with learning disabilities, however, not all carers had wide support systems. Although a rewarding experience, carers reported leaving full-time work to provide full-time care to support their relative. This high intensity of care was reinforced by all carers self-reporting a high number of hours spent caring per week (30+ h). It was also highlighted that the family unit primarily cared for the person with learning disabilities. For ethnic minority families, for example, South Asian, there is great importance in using the family unit for support for health conditions (Chadda and Debb, 2013; Santisteban et al., 2012). In addition, carers in this evaluation showed openness to using respite care, but this was not often offered. Roberts et al. (2024) conducted a qualitative synthesis to explore the health-care experiences of people with learning disabilities and their carers from ethnic minority backgrounds. The researchers highlighted that carers frequently experience reduced wellbeing and 60% report no respite care (Hubert, 2006). This reliance on family was also reflected in survey responses, where recreational and daily activities were often arranged by carers rather than services. This underlines the importance of carers’ expert role in sustaining care, while pointing to a need for greater systemic support.

Carers also described difficulties during life transitions, such as from childhood to adulthood and into older age, where additional needs emerged but professionals offered little guidance. Carers reported feeling not emotionally prepared for additional care needs with age, as professionals did not provide this information. It was particularly evident that in early life and early education, people with learning disabilities and their carers felt they received more support and guidance, however less support was provided once the person with learning disabilities had left secondary school and transitioned into adulthood. Existing evidence, although very scarce, suggests parents are often dissatisfied with guidance during transitions out of education (Pallisera et al., 2016), reinforcing the need to strengthen service provision across the life course.

In terms of intervention and service delivery, the findings point to the need for greater emphasis on proactive, preventative support rather than reactive care. This includes systematic signposting to services, clearer information of prognosis and delineation of professional roles and routine checks to ensure reasonable adjustments are identified and implemented consistently. Interventions should also recognise carers as partners in care, offering timely information, anticipatory guidance around life transitions and access to respite support. Embedding these practices within existing services may be more effective than introducing novel interventions, particularly given that many of the barriers identified are already well documented.

Another shared theme was limited access to clear, accessible information about services. Carers described confusion about which professionals were responsible for what and a lack of signposting that left them unsure where to find help. The survey responses mirrored this, with “not knowing where to find help” emerging as the most prominent barrier, followed by language difficulties, stigma and insufficient reasonable adjustments. This lack of clarity negatively affected carer satisfaction with services and likely health outcomes for people with learning disabilities. Carers also felt that professionals did not always fully understand diagnoses or take responsibility for organising further assessments, support or activities. These findings are consistent with wider research, which highlights poor communication, inadequate information and limited professional understanding as recurring barriers at system, service and individual levels (Ali et al., 2013; Doherty et al., 2020; Ramsey et al., 2022; Heslop et al., 2013; Allerton and Emerson, 2012). One carer proposed greater multidisciplinary working as a solution, which may be particularly important given that fewer than half (46.15%) of the people with learning disabilities reported yearly input from their specialist team. This reinforces existing evidence that health-care providers often lack training and awareness, and that culturally sensitive care and clearer signposting are essential to improve access for minority ethnic groups (Doherty et al., 2020; Robertson et al., 2019; Kandeh et al., 2020).

In terms of contact with health-care professionals, people with learning disabilities tended to report positive and frequent interactions with health-care professionals. Approximately 66.3% of the people with learning disabilities received their annual check-up with the GP. Generally, people with learning disabilities felt that staff supported them with their values and beliefs, and felt they were involved in their own health care. However, 31.77% had not or were not sure if they had received their annual check-up, and although reasons for non-attendance were not recorded, this result signifies that further work is required to ensure that all people with learning disabilities have equitable experiences in health-care interactions.

Several beneficial reasonable adjustments were identified by people with learning disabilities, including earlier or later appointment times and access to easy-read materials or images. While longer appointments were often provided, earlier appointments were less frequently available than later ones. Current NHS England (2024) guidance recommends that people with learning disabilities should be offered longer consultations, appointments at quieter times of day, the option for a carer to attend and a choice between face-to-face or virtual formats. Wigham et al. (2022) emphasised the importance of flexibility and of asking service users directly what would make appointments easier, particularly to enable carers to attend and support communication. They also note that people with learning disabilities value clear, jargon-free communication from GPs and nurses. Taken together, these findings suggest that health-care services should prioritise adapting both appointment structures and communication methods to better meet the needs of people with learning disabilities.

Together, the survey and focus group findings provide an exploratory account of how people with learning disabilities and their carers from ethnic minority backgrounds experience health care, highlighting both general barriers common to many people with learning disabilities and specific issues linked to information accessibility and the need for well-coordinated services. To promote equitable, person-centred support, health-care professionals require adequate training in learning disabilities and reasonable adjustments, alongside stronger multi-disciplinary collaboration and better signposting. Addressing these systemic barriers has the potential to reduce carer burden, improve health-care experiences and ensure better health and wellbeing outcomes for people with learning disabilities.

The questionnaire response rate was low, and reasons for non-participation were not systematically collected. It is therefore not possible to determine why some individuals did not take part; however, previous research suggests that practical, accessibility and time-related barriers commonly affect participation among people with learning disabilities and carers (Crook et al., 2016).

While we recognise the heterogeneity of the experiences of different ethnic minority groups, we decided to group all ethnic minority subgroups together for this evaluation. However, future work is required to explore the experiences and challenges of specific ethnic groups and how these compare across different ethnic minority backgrounds, as grouping ethnic groups together may mask inequalities between them. This comparison is particularly important as this evaluation had a small sample size.

Though the use of two data sources allowed for complementary perspectives, this evaluation did not use formal mixed-methods integration or meta-inference. As such, findings from the questionnaire and focus group are presented in parallel rather than as an integrated analysis. This reflects the exploratory and service-focused aims of the evaluation rather than a hypothesis-driven mixed-methods design.

Some digital and language barriers prevailed in this study, as participants were required to speak in English and carers were required to join the focus group online. This limitation meant that carers who were not proficient in English could not share their perspectives. Therefore, future research should continue to investigate barriers to health-care access and experiences in people with learning disabilities and ethnic minority groups, supporting access by allowing participants to speak in their first language.

While many of the issues identified in this evaluation mirror those reported in previous research, this should not be interpreted as a lack of contribution. Rather, the persistence of these barriers over time highlights a gap between policy, evidence and everyday practice. Future work should therefore prioritise implementation-focused research that evaluates how existing recommendations are operationalised within routine services, such as the provision of reasonable adjustments, improved care coordination and carer involvement. Longitudinal and participatory approaches, including the co-production of interventions with people with learning disabilities and carers from diverse backgrounds, may be particularly valuable in supporting meaningful and sustained change.

Overall, findings demonstrate that carers have a key and rewarding role in providing support for people with learning disabilities. However, being a carer can be challenging and it can be difficult to access information and support, especially when the person they care for reaches adulthood. People with learning disabilities tended to feel positive towards health-care interactions, however uptake for health appointments could be improved. Findings suggest several barriers which may decrease access and satisfaction with health-care services, most pertinently inaccessible information. Therefore, health-care providers must be aware of and tackle the potential barriers that people with learning disabilities from ethnic minority backgrounds and their carers experience when accessing and using formal services.

1. How involved are you in caring for your family member with a learning disability?

   • What role do you have in supporting health-care access and appointments for the person you care for?

2. Can you describe any experiences of health-care services that have been particularly memorable for you and the person you care for, whether good or bad?

3. Thinking about those experiences and other experiences of accessing health-care services, which aspects made them positive for you and the person you care for?

4. And again thinking about those experiences of health care, which aspects made them negative or challenging for you and the person you care for?

   • Follow-up: How did this affect your family member’s future use of health-care services?

5. What types of barriers, if any, have you and the person you care for experienced when accessing health-care services?

   • Prompts: communication barriers, cultural/religious/language barriers, lack of reasonable adjustments, stigma, lack of appropriate support/knowledge of services

6. To what extent have staff demonstrated cultural awareness and adapted their support to fit with your values and cultural or religious beliefs and how?

7. How could health-care access and health-care services be further improved to meet the needs of the person you care for?

8. How could health-care services be further improved to support your needs as a carer?