Our results comprise three core themes, each with their own subthemes. The definition of each theme, how subthemes are interlinked and supporting evidence from the qualitative data are presented.
1. Health And Care Rigidity
Our first theme refers to overriding expectations that people with learning disabilities should fit within existing health and social care systems not necessarily designed with their needs in mind, rather than services adequately adapting to accommodate and ensure safe care. The varying levels of profound and complex needs of people with learning disabilities were often multifaceted, including both physical and mental health symptoms, which were attended to in various settings. As a result, many expressed basic requirements for all staff, regardless of setting, to make reasonable adjustments by having a comprehensive understanding of how people with learning disabilities needed to be cared for, to be able to establish effective communication and to treat people with learning disabilities with dignity, respect and compassion. Areas of particular concern included failures in information exchanges and insufficient time and space provided to people with learning disabilities during care interactions, causing unnecessary distress.
1.1 Complex and individualised care needs
People with learning disabilities often experienced lifelong conditions which varied in their nature and complexity. Therefore, all stakeholders considered the individualisation of care to be imperative to quality and safety outcomes. Many drew upon negative experiences where care could not be tailored to their specific needs and staff had failed to appropriately adjust support, leaving people feeling unheard, unseen and demoralised.
“I’d be like, “please these lights”, I actually get headaches that make me have fits… I’ve actually got a phobia of hospital bathrooms, closed spaces. If someone leaves me and locks the door… I freak… I said “can you stay by the door?” and they didn’t, and I just couldn’t get back to the bathroom and I couldn’t walk, I needed help to get back… they thought I was being horrible. I tried to explain to them the reasons why, but they wouldn’t, they didn’t listen… it looks like I’m daydreaming and I’m zoning out for a bit and next minute I’m so scared, people are like, shouting at me in my face telling me to do things and I haven’t got the foggiest what’s happening.” (Focus group 2, participant 3 – person with learning disabilities)
The lack of system malleability to cater to complex needs meant that some organisations arguably seemed to come to accept standards of care that would be otherwise deemed unacceptable. This included the management of distress and relief, symptom interactions, physical and mental health concerns, and pain. Similarly, management of what was often termed ‘challenging behaviour’ sometimes meant that people with learning disabilities were considered too difficult to care for in settings without specialised resources, resulting in discharge from services.
“I was sent here as my last hospital couldn’t handle my challenging behaviour.” (Care Opinion, Independent charity providing women’s psychiatric services - staff posting for patient with learning disabilities)
In some cases, physical and mental health symptoms were described as being falsely attributed to direct symptoms of learning disabilities, a phenomenon known as diagnostic overshadowing. The importance of fully exploring and addressing symptoms and their interactions was expressed.
“I was waiting in A&E to see someone for my depression, I had to wait a good seven odd hours… the biggest issue I had there was waiting all alone with no one to talk to… They don’t really look at how ill I am and they feel I’m just overreacting. I got really upset, I started self-harming and all I remember was this nurse coming through, “excuse me are you going to carry on doing that? I will call the police and have you removed”… that felt even more depressing because it’s like I’m not being understood… When you go to these places, it’s like we’re trusting them with our lives” Focus group 2, participant 5 – person with learning disabilities)
1.2 Written and verbal information exchanges
The relational aspects of care were deemed particularly important to ensure that people with learning disabilities felt listened to, and able to understand written and verbal information. Specific considerations were made regarding the accessibility of documents not presented in ‘easy-read’, such as text size, boldness of font, length of information, and the use of imagery to aid understanding.
“I couldn’t read this massive folder. It’s too many words to take in… bullet points, it’s so easy for people like me to have a bullet point, okay, that makes more sense… She made a care plan and she did it exactly the way I wanted… I chose pictures because it’s more simplified.” (Focus group 2, participant 5 – person with learning disabilities)
Risks to patient safety were increased when effective communication could not be established, having wide ranging implications from an inability to read hospital menus, medication information and care documentation, through to omitting opportunities for informed consent.
“I want it like bigger… I can’t see it, so small … if they give me a piece of paper, I’m like, well you’ll have to explain it or I’m going to have to take it home and show it to my mum and see what she says, because this isn’t right… I can’t understand what I even have to do.” (Focus group 1, participant 7 – person with learning disabilities)
Similar considerations were made regarding individualised needs for verbal information to ensure effective three-way communication between people with learning disabilities, their families and/or carers and care professionals. This included details of care being clearly explained, staff having the time to get to know individuals and how they preferred to be communicated with, and confirmation that discourse had been fully understood. Without such efforts in place, staff were sometimes falsely assuming knowledge.
“He would take his hearing aid out when he was sleeping or resting, and the doctors were talking with him and not realising he couldn’t hear anything… That’s the problem, because the doctor thinks you’ve understood everything you’ve just said, the person goes home… they’re probably back in again.” (Focus group 2, participant 4 – learning disabilities self-advocacy manger)
Communication issues present across the general population were also perpetuated for some with learning disabilities, such as language barriers and digital exclusion posing challenges to effective information exchanges. For instance, basic administrative tasks such as providing personal details to services or checking into appointments using technology omitted considerations to present information in ‘easy read’, and some were encouraged to source information important to their health and care via the internet which posed challenges.
“The problem is, with online, it’s not simplified… when you click a simple question it comes up with various results and you’re thinking, “what, what, what?” it’s nothing related to what you’re typing in.” (Focus group 2, participant 5 – person with learning disabilities)
Conversely, others reflected on positive aspects of communication. The significance of staff being approachable, polite, helpful, friendly, professional, and sensitive was repeatedly highlighted. Additionally, the extent staff expressed compassion, empathy, respect and humour, and were perceived to be caring, reassuring and thoughtful were considered imperative. Where information was able to flow effectively, and clear communication could be established, there was a gratefulness for details being thoroughly explained and all stakeholders partnering to ensure high quality and safe care throughout.
“Our daughter recently moved… her transition was planned very well and the staff were so welcoming, caring… Communication is excellent with the nurses/care workers… We are always told about appointments and updates on how they went, and we feel very much a part of her care still.” (Care Opinion, Nursing home – family of person with learning disabilities)
1.3 Insufficient space and ‘hurry sickness’
Individuals drew upon the need for care providers to move at a pace the individual with learning disabilities could cope with. Feeling rushed within time restricted care interactions was often overwhelming, not only causing unnecessary distress, but also meaning that people could not achieve what they wanted from their appointments. ‘Hurry sickness’, therefore, has the potential to amplify any existing safety inequities and cause iatrogenic harm.
“I don’t like being rushed, because I feel flustered… sometimes people do rush me… I was in hospital last time, when I said, I can’t speak to you when I have five doctors crowding me all the time.” (Focus group 2, participant 3 - person with learning disabilities)
Similarly, the lack of sufficient space was sometimes overwhelming. People with learning disabilities recalled unsettling care experiences where they perceived to have been swarmed by groups of healthcare staff during ward rounds or consultations or were asked to sit in overcrowded waiting rooms.
“I was taken into a room by a counsellor and was shocked to find another counsellor waiting for us. I was expecting only one-on-one, and this immediately threw me. The assessment was done by both of them together, which was really difficult, because I couldn't focus on both of them. [I] felt they were ganging up on me.” (Care Opinion, Mental health inpatient services – service user with learning disabilities)
Positive reflection from people for whom this reasonable adjustment could be accommodated further exemplified the importance, as people with learning disabilities, their carers and families felt ‘unhurried, cared for and valued’ due to the adequate time and space services and staff were able to provide.
“They take plenty of time, interact with him really well and save so much unwanted stress.” (Care Opinion, Dental care – staff member posting for a carer)
Others also raised novel ideas to alleviate distress, both hypothetically and drawing upon previous personal experiences, such as designated quiet rooms, ‘safe rooms’ and unoccupied areas for those with learning disabilities to wait prior to their appointments.
2. Systemic Gaps And Traps
Our second theme refers to discontinuities in processes and features of health and social care services with the potential to result in poorer safety outcomes, such as errors and unintended adverse events. Significant gaps and traps within the system were highlighted for people with learning disabilities, with commonly reported examples comprising the variation in support within and between services, suboptimal staffing levels, discontinuities in care, and challenges with interoperability.
2.1 Variation in support provision
Repeated comparisons of support offered within and between health and social care services highlighted a lack of parity. Some raised concerns regarding inequities in support identification and access, as this was heavily reliant upon actively seeking out information or learning via word of mouth. Other examples of best practice were drawn upon, noting where people felt that staff were able to go above and beyond to ensure high quality and safe care, such as those providing specialist support including Learning Disabilities Liaison Nurses, Counsellors and Autism Nurses.
“I was petrified to go to see a psychologist… So [an autism nurse] actually came with me to my appointment… I am scared of the word Psychology… This is going to sound silly, but I felt like she was safeguarding me… I’m not going by myself. The problem is as well because my health is so complex, that I’m scared they’d try to trip me up.” (Focus group 2, participant 3 – person with learning disabilities)
Variation in support provision across services was impacted upon by the adequacy of staffing levels, resulting in the potential to widen gaps and cause patient safety risks. Many noted that suboptimal staffing emphasised known issues, including the discontinuation of scheduled activities and hospital leave, increased waiting times, perceptions of poor staff attitudes and insufficient time spent properly caring for people with learning disabilities. This had impacts ranging from disappointment, increased distress and a sense of unsafe care, to reported potentially life-threatening risks.
“I put in a complaint 8 weeks ago and again 4 weeks ago because I was left without care and support due to staff leaving and I almost lost my life.” (Care Opinion, Home care, person with learning disabilities).
Despite the majority focussing on both the want and need for support from services, some did call for increased autonomy, particularly those within an inpatient mental health setting. For instance, some referred to being denied access to personal items and wanting freedom for independent activities, such as internet access and hospital leave.
2.2 Importance of care continuity and interoperability
Significant benefits were reported where people with learning disabilities had developed continuous relationships within and between services with caring professionals, particularly where staff were able to provide support during transitions. This included the ability to build trust, reduce apprehensions and provide comforting reassurances. Where continuity of care was unable to be established or when care was disrupted, gaps within the system were widened, exacerbating issues with complex health concerns being taken seriously and addressed appropriately, and risking leaving people feeling ‘passed around from pillar to post’. This was emphasised in certain contents, such as being continuously referred to different health professionals, turnover of paid carers, changing of shifts in hospital, and feeling abandoned when being discharged from hospital to home.
“A familiar face that’s who I need… doctors and nurses keep changing shifts, they’re not familiar and that is scary... They just presume that we’re okay and we can manage but we can’t… they don’t write down what medicines we took when and where and what the medicines are and, most times I’ve had to ring up the ward." (Focus group 2, participant 3 – person with learning disabilities)
Issues were also raised regarding the ability for healthcare systems to speak to one another, meaning that information had to be repeatedly retold, which was both repetitious for people with learning disabilities, and an additional burden for families and carers.
“They’re supposed to write to your GP about everything that’s just happened… you finally get a GP appointment and the GP goes “I haven’t got that letter”... I’m sorry to say this, I don’t want to talk about my past all the time… A lot of my care now is in [my local Town], but some is in [the City], but the computers are not compatible’ (Focus group 2, participant 3 – person with learning disabilities)
Safety initiatives such as health passports and communication books were designed to minimise risks where interoperability could not be achieved, however, concerns were raised with these being viewed as a temporary measure, rather than looking to resolve larger systemic issues with gaps within and between services. These tools were also variably, and only locally adopted in certain care settings in the absence of a national system, which was perceived as frustrating, and challenges persisted with their use within organisations.
“Some hospitals wouldn’t accept them [hospital passports] if they originated from a different hospital where essentially it’s just information that’s useful to share.” (Focus group 2, participant 2 – person with learning disabilities)
3. Dependency Work
Our final theme refers to the efforts made by those ‘picking up the slack’, and buffering against potential safety inequities for people with learning disabilities. This role tended to fulfilled by those in family caring roles, with a reliance upon social capital, and/or support from advocates. Therefore, safety inequities may be compounded where there are systemic resource constraints widening safety gaps in care, resulting in increasing demands for dependency work that cannot be easily met.
3.1 Reliance on social capital
‘Dependency work’ undertaken by individuals outside the official health and social care system was often fulfilled by family members who knew the individual well, and did not see their caring role outside their existing relationship. Those caring relationships were deemed essential and evident in various guises, such as pragmatic support, providing reassurances by alleviating fears of the unknown, bringing a sense of familiarity, and helping people with learning disabilities to feel safe while interacting with clinicians across a variety of care settings.
“We need some people that we know to sit with us all the time to make sure we’re okay… I’ve got a weird phobia of everything to do with hospitals, so sometimes we just need reassurance.” (Focus group 2, participant 3 - person with learning disabilities)
Moreover, interpretive communication support was fulfilled by caring relationships. There was sense that staff often failed to understand and make themselves understood when interacting directly with people with learning disabilities. Therefore, social capital was called upon to bridge gaps in communications. In the absence of social support, however, effectively navigating the system became problematic and posed risks to safety. This was fuelled by fears regarding scenarios where social support would be temporarily or permanently unavailable to people with learning disabilities in the future, such as caring roles being fulfilled by ageing parents.
I have to have medication and the Doctor will, like, tell me and then I’m going, “mum I don’t know what they’ve said, can you explain?”… that’s why I always have to take my mum with me… I don’t know what the doctors are saying… If my mum goes away or something and I’m on my own… I’ll have to wait ‘till my mum gets back for appointments.” (Focus group 1, participant 7 – person with learning disabilities)
While the involvement of family carers was largely welcomed and relied upon by people with learning disabilities, some felt that contributions from paid carers were disempowering, due to exclusion from discussion and decision-making with health professionals suggesting that ‘carers seem to take over’. Nevertheless, where family carers trusted that the system was able to safely and effectively support their relative in their absence, their emotional burden was eased, bringing “complete peace of mind”, knowing that they were being taken good care of. One individual raised an innovative idea of a ‘buddy system’, whereby ‘experts by experience’ could help to support one another in the instance that their social capital was limited or provide welcome respite for unpaid carers at risk of burnout. However, it was unclear if or how this system might effectively work in practice.
3.2 Safety net of advocacy
Gratitude for additional support from advocates was emphasised by all stakeholders,
particularly when they worked independently of health and social care systems. Advocates were described as effective system navigators, and felt that their role was pivotal for a variety of reasons, including being a dependable lifeline to having voices heard. Sometimes in contrast to care providers, advocates were seen as activists who offered a non-judgemental ear, and worked to ‘fight the corner’ of people with learning disabilities, with specialist knowledge and expertise.
“I was being pushed into decisions that I had no control over. But after [my advocate] came into the ward rounds with me, I felt a lot calmer and in control. The advocacy is not communicated enough on the ward as a patient's choice.” (Care Opinion, Independent advocacy support in an acute mental health ward – patient with learning disabilities)
Advocacy services offered help with a variety of care elements, such as producing documentation, assisting in organising thoughts around care preferences, discussing personal matters people felt uncomfortable disclosing to friends and family, supporting carers, being present at ward rounds or meetings, identifying needs and ensuring implementation of reasonable adjustments and helping to prevent complaints from being discounted.
“My health condition makes consistent cognition difficult… Having someone to come with me, whilst I discussed very personal matters was crucial.... [My community advocate] has been informed and understanding about my condition… utterly dependably, available and has produced typed notes after every meeting which has been invaluable. She has also listened accurately to my needs and produced very professional letters and emails to various figures of authority. She has enabled me to challenge mistakes.” (Care Opinion, Independent community advocacy support – patient with learning disabilities)
In doing so, many perceived that advocates enabled outcomes to be achieved for those with learning disabilities that would not have been possible otherwise, such as earlier discharge, exercising of rights, challenging staff decisions, and ensuring less restrictive care options were considered.
“I had issues around leave, medication and discharge, which [my advocate] supported me with by explaining my rights, speaking with ward staff and social worker, challenging decisions, and helping me prepare for ward rounds. I've been discharged now and want to thank her for all of her support. Being in hospital has been a very difficult and lonely time and knowing I could call her for information has made a big difference.” (Care Opinion, Independent advocacy support in an acute mental health ward – patient with learning disabilities)
The genuine difference that advocacy made to the quality and safety of care for those with learning disabilities alleviated pressures on families who battled to ensure that their relative was not unnecessarily disadvantaged.
“She did not want to engage with the care team until you became involved. You put her wishes and feelings forward… Having challenged the decision about discharge, she went home with a full package of care. As family members, we would like to thank you as we would not have achieved this result if you had not been at the meeting, you ensured that the least restrictive option was considered.” (Care Opinion, Independent advocacy support – volunteer posting for family of person with learning disabilities)