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Lived Experience Research in Learning Disabilities: The Understanding Inequalities Project from a Service User's Perspective

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Title: Lived Experience Research in Learning Disabilities: The Understanding Inequalities Project from a Service User's Perspective
Language: English
Authors: Gray, Ben, Kerridge, Tom
Source: British Journal of Learning Disabilities. 2023 51(4):479-488.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 10
Publication Date: 2023
Document Type: Journal Articles
Reports - Research
Descriptors: Learning Disabilities, Experience, Access to Health Care, Barriers, Social Services, Mental Disorders, Services
DOI: 10.1111/bld.12518
ISSN: 1354-4187
1468-3156
Abstract: Background: People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co-production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co-production) leads to more comprehensive knowledge and understanding of learning disabilities. Methods: Co-production events were held with people with learning disabilities, facilitated by the co-author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems. Findings: A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations. Conclusions: Lived experience research and co-production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference.
Abstractor: As Provided
Entry Date: 2023
Accession Number: EJ1398578
Database: ERIC
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  Value: <anid>AN0173368790;f0401dec.23;2023Nov03.05:40;v2.2.500</anid> <title id="AN0173368790-1">Lived experience research in learning disabilities: The understanding inequalities project from a service user's perspective </title> <p>Background: People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co‐production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co‐production) leads to more comprehensive knowledge and understanding of learning disabilities. Methods: Co‐production events were held with people with learning disabilities, facilitated by the co‐author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems. Findings: A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations. Conclusions: Lived experience research and co‐production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference.</p> <p>Accessible summary: People with learning disabilities and mental health problems (like Ben), can feel left behind, like they do not fit in, do not belong and that their chances in life are limited.People can feel that they do not matter, have no voice or say, and that they are forgotten. People with learning disabilities, in Ben's own personal experience, can feel not listened to, looked down on and can face bullying.This paper is about the value that people living with learning disabilities can bring to research and help make health and social care services better.</p> <p>Keywords: co‐production and involvement; inequalities in health and social care; lived experience</p> <hd id="AN0173368790-2">INTRODUCTION (Ben's perspective)</hd> <p>At Healthwatch Essex (HWE), as a Research Ambassador and Service User Researcher, I have been able to use my lived experience of schizophrenia and Asperger's syndrome in a research project that aimed to understand inequalities of access to health and social care services and hospitals for people with learning disabilities. I have also been able to draw on my previous work experience as a Support Worker for people with learning disabilities and a younger relation of mine who has severe learning disabilities and autism. I have been able to thematise transcripts and make recommendations to improve services based on my lived experience.</p> <p>The aim of this paper is to explore inequalities of access to health and social care services and hospitals from the service user's/lived experience perspective.</p> <hd id="AN0173368790-3">Co‐design and co‐production</hd> <p>Definitions of exactly what co‐production means vary, but the term is used to describe partnership working between people who draw on care and support, carers and citizens to improve public services (Kerridge, [<reflink idref="bib7" id="ref1">7</reflink>]; SCIE, [<reflink idref="bib12" id="ref2">12</reflink>]).</p> <p>Co‐production ideally enables individuals from different backgrounds, like me, to work together to deliver, design, commission and assess services. These processes are underpinned by values of equality and, therefore, enable participants to work together as co‐producers to realise shared goals and improve services. Co‐design is one of several equitable co‐production processes (Loeffler, [<reflink idref="bib8" id="ref3">8</reflink>]; Turnhout et al., [<reflink idref="bib14" id="ref4">14</reflink>]). The idea of co‐design is simple:</p> <p>Nobody knows better how public services should be designed than service users and their families, friends and the communities they live in (Bovaird & Loeffler, [<reflink idref="bib2" id="ref5">2</reflink>]; p. 15)</p> <p>In co‐design, participants collaborate in the creation, planning and arrangement of public services (see Figure A1). This partnership provides services with an outside‐in perspective: promoting awareness of important and revealing insights that may not have previously been considered within existing governance (Figure A1, see Appendix).</p> <hd id="AN0173368790-4">INEQUALITIES OF ACCESS FOR PEOPLE WITH LEARNING DISABILITIES: AN OVERVIEW</hd> <p>The Understanding Inequalities project aimed to respond to the inequalities that people living with disabilities face when they visit hospital and health and social care services. In the view of the authors of this paper, there is a plethora and abundance of research and literature on inequalities of access to health and social care but little conducted and written directly by someone with a lived experience perspective (of Asperger's syndrome) and co‐production with people with learning disabilities.</p> <p>According to Black ([<reflink idref="bib1" id="ref6">1</reflink>]), people living with learning disabilities are a vulnerable group who experience health inequalities. They have diverse needs; often they will experience multiple health problems and have difficulties. This can lead to challenges in terms of identifying health issues. Black's ([<reflink idref="bib1" id="ref7">1</reflink>]) research shows that people with learning disabilities are more likely to experience poorer health outcomes and have shorter life expectancies than the general population. Even though people with learning disabilities have a right to access healthcare services in the same way as everyone else, they are less likely to get some of the evidence‐based treatments and checks that they need and are more likely to face barriers when accessing services. Healthcare services are failing to meet the needs of people with learning disabilities, resulting in poor health outcomes and premature death. There are also problems with 'diagnostic overshadowing', a lack of 'reasonable adjustments' being made (such as longer appointment times), and disjointed working practices with other parts of the healthcare system.</p> <p>A range of organisational barriers to accessing healthcare services have been identified by Emerson and Baines ([<reflink idref="bib4" id="ref8">4</reflink>]), Turner ([<reflink idref="bib13" id="ref9">13</reflink>]), NIHR ([<reflink idref="bib10" id="ref10">10</reflink>]), Hosking et al. ([<reflink idref="bib5" id="ref11">5</reflink>]), Bowness ([<reflink idref="bib3" id="ref12">3</reflink>]), House of Commons Health Committee ([<reflink idref="bib6" id="ref13">6</reflink>]‐2009), NHS England ([<reflink idref="bib9" id="ref14">9</reflink>]), Black ([<reflink idref="bib1" id="ref15">1</reflink>]) and Northway and Dix ([<reflink idref="bib11" id="ref16">11</reflink>]). These include:</p> <p></p> <ulist> <item> Scarcity of services (e.g., learning disability is understaffed and not a healthcare priority).</item> <p></p> <item> Physical barriers to access (lack of wheelchair access, narrow corridors, broken lifts, etc).</item> <p></p> <item> Failure to make 'reasonable adjustments' in light of the literacy and communication difficulties experienced by many people with learning disabilities.</item> <p></p> <item> 'Diagnostic overshadowing' (symptoms of physical ill health being mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person's learning disabilities).</item> <p></p> <item> Negative attitudes among healthcare staff.</item> <p></p> <item> People with learning disabilities may not get the same access to primary and secondary mental health services as the general population.</item> <p></p> <item> Lack of knowledge and skills to respond to people's needs.</item> <p></p> <item> Fragmented services and poor communication among agencies.</item> </ulist> <p>These authors also make recommendations to improve access to services:</p> <p></p> <ulist> <item> Improving the early identification of illness among people with learning disabilities by, for example, increasing uptake of annual health checks.</item> <p></p> <item> Enhancing the health literacy of people with learning disabilities and of family carers and paid carers/supporters who play a critical role in promoting healthy lifestyles among many people with learning disabilities.</item> <p></p> <item> Perhaps most importantly, making 'reasonable adjustments' in all areas of health promotion and healthcare in light of the specific needs of people with learning disabilities. Reasonable adjustments could be, for example, wheelchair access, sensory rooms/quiet waiting areas, or to see a particular professional/first point of contact or share confidential information with family carers. Reasonable adjustment flags are stored electronically by NHS Digital and contain extra information about specific support needs and linked to annual health checks and action plans. They have been welcomed and received praise from health and social care professionals.</item> <p></p> <item> Patient passports are necessary to provide vital information to hospital staff. These passports identify the adjustment required and need regular auditing of their provision.</item> <p></p> <item> The importance of regular health screening and annual health checks.</item> <p></p> <item> Addressing poor or unsafe discharges from hospital at quality review group meetings.</item> <p></p> <item> Ensuring good co‐ordination of care.</item> </ulist> <hd id="AN0173368790-5">METHODS</hd> <p>The research involved the following stages:</p> <p></p> <ulist> <item> 1. The production of a Trigger Film to promote discussion in the later stages of research (stage 2): The Trigger Film was produced by editing together segments of five interviews with people with learning disabilities examining experiences of services. To achieve this HWE analysed transcripts of interviews as a means of noticing overarching themes that highlighted issues regarding care for people living with learning disabilities. HWE then used video‐editing technology to draw these themes together to create a film designed to promote reflection and conversation within the proceeding stages of the process (Trigger Film is online, 2022, and may be viewed on HWE's YouTube channel. To view the film, see https://www.youtube.com/watch?v=pus3JA7WfEQ).</item> <p></p> <item> 2. Separate learning disabilities‐carer and provider Feedback Groups: HWE organised two Feedback Groups containing eighteen people with learning disabilities (ten individuals) and carers (eight individuals) and seven front line/executive staff members. The people with learning disabilities experienced a mix of lower and higher needs and some had multiple complex morbidities. People with learning disabilities/carers were in one group as this was very successful in stimulating discussion in previous research. The groups were facilitated by Tom Kerridge and colleagues at HWE. In these groups participants explored improvement themes that they and their peers considered to be important. To promote exploration, participants watched the Trigger Film before sharing their own experiences of using or providing services. After this, participants collectively identified priorities for improvement based on the experiences that had been shared in their group. Prioritisation occurred through a deliberative process in which participants put forward their perspectives, reflected on one another's experiences and collaborated in creating a priority list.</item> <p></p> <item> 3. Co‐Design Event: The Co‐Design Event was devised and run by Tom Kerridge and colleagues as an opportunity to bring together people with learning disabilities, carer and staff participants from previous sessions to design improvements to services used by adults with learning disabilities. At this event, the priority lists created during both feedback groups acted as catalysts for discussion and deliberation. This ambition was achieved by separating attendees into smaller co‐design teams responsible for devising improvements relating to one priority area. Accordingly, co‐design teams were asked to consider: • Overcoming Anxiety. • Patients as Human Beings. • Communication and Information Provision. Each co‐design team was given three and a half hours to explore their priority area. During this time, teams were asked to share experiences and perspectives relating to their priority area. After this, teams compiled a list of three practical priorities for improvement relating to their priority area before devising workable improvements to services that addressed these priorities. Co‐design team discussions were recorded using Dictaphones and each team was asked to nominate an individual to document their ideas on A‐3 paper.</item> <p></p> <item> 4. Analysis and Implementation: HWE used qualitative data taken from the Co‐Design Event to inform recommendations for improvement. To achieve this, written documents such as priority lists and verbatim transcripts of co‐design team discussions were thematically analysed as a means of distinguishing: • Rationale for improvement priorities. • Priorities for improvement. • Solutions to improvement priorities (i.e., methods through which to make things better). • If possible, the conditionality of improvement methods (i.e., who needs to be involved, where the method might be best placed and what needs to happen to make it a success).</item> <p></p> <item> 5. Celebration Event: Once solutions to improving priority areas have been implemented, a Celebration Event should be held to commemorate the achievements of participants and organisers and update stakeholders on the progress of the project. Moreover, participants should be invited to share their experiences of taking part in the process. All participants, as well as any other interested parties, should be actively encouraged to attend the Celebration Event (Figure A2, see Appendix).</item> </ulist> <p>Ethical approval was via the local Trust's Ethics Committee and the local Trust is anonymised in this paper at their request.</p> <hd id="AN0173368790-6">FINDINGS: THEMES AND RECOMMENDATIONS</hd> <p>In the following discussion, a series of recommendations for change are advanced. These recommendations are based on analysis of written documentation and transcripts taken from the Co‐Design Event. As such, they are grounded in the lived experiences and expertise of people with learning disabilities, carer and staff member participants who took part in the event. It is the perspective of people with learning disabilities that is focused on in this paper.</p> <p>These findings offer the perspective of a lived experience researcher with learning disabilities (Ben Gray). There is little research, analysis and writing up at this level by people with learning disabilities.</p> <p>The findings and recommendations are the ones co‐produced and co‐authored by the two authors of this paper and which focus on lived experience research.</p> <hd id="AN0173368790-7">Peer support</hd> <p>People with learning disabilities need other people with learning disabilities who have shared experiences to help and guide them. One recommendation is to have lived experience peer mentors and supporters and Learning Disabilities Ambassadors. Co‐design teams suggested that improved standards of care may be achieved through the greater use of citizens with lived experience. It was argued that people who live with learning disabilities have important stores of knowledge relating to the experience of navigating hospital environments. These forms of knowledge are situated by the experience of living with impairment and interacting with bureaucratic and clinical norms and processes, as well as assets within the community, primary care and the social care sector. In this way, they may differ to the experiences and expertise of many front‐line and executive staff members. Accordingly, citizens with lived experience may be employed as a means of filling information and knowledge gaps that exist in health and social care settings.</p> <p>Participants argued that staff regularly fail, as a product of a lack of time or understanding, to notice when patients with learning disabilities require direction and guidance when visiting hospital. Citizens with lived experience who are employed to welcome visitors may mitigate for this deficit by noticing when someone seems lost, anxious or upset and supporting them to find their appointment or department. Moreover, citizens with lived experience of learning disabilities who are employed by the Trust may act as locum forms of social support. For example, they may provide peer support to people who have arrived at hospital without a family member or carer. The capacity for people with lived experience to act as peer mentors was noticed in the Understanding Inequalities project wherein some learning disabilities participants developed relationships of trust and support with others and, subsequently, provided services such as travel assistance and emotional support.</p> <hd id="AN0173368790-8">Hospital cards</hd> <p>People with learning disabilities need accessible and easy information. Hospital cards are better than the longer and more complex hospital passport. Many people with learning disabilities participants articulated that they do not understand Hospital Passports and, thus, feel uncomfortable using or drawing attention to them for fear of doing something wrong or being told off. As such, a card or lanyard may implicitly place less responsibility on the individual to draw attention to their relevant documentation. According to a participant:</p> <p>A card so staff can... you know, they're not going to miss it. Just in case it doesn't get highlighted (by hospital records) (Learning disabilities participant at the Co‐Design Event).</p> <hd id="AN0173368790-9">Badges for identification</hd> <p>People with learning disabilities may have difficulties identifying learning disabilities staff. Badges (lanyards) with a colourful and easy‐to‐remember image (a sunflower) are required to identify key staff of people with learning disabilities. Staff aesthetics frequently communicate information about the standard and quality of services. Participants emphasised that staff uniforms and clothes, as well as their use of name badges, lanyards and insignia, conveyed messages regarding the capacity and accessibility of individual staff members.</p> <p>To improve implicit communication deriving from staff aesthetics, participants suggested that staff wear badges on their person detailing their name and profession. This badge, some emphasised, should include visual cues such as images relating to an individual's role. In doing this, people with learning disabilities and carers who struggle to read may be able to discern who they ought to talk to and from whom they may seek support. Furthermore, others proposed that staff badges should include statements such as'hello', 'I can help' and 'ask me a question'. These types of helpful and welcoming statements suggest that staff members are compassionate and, subsequently, encourage people to interact and engage with them. In the words of a participant:</p> <p>So even if you had a name badge... I got my phone out because Sport for Confidence have just updated their badges because they work closely with people with dementia, and it simply says hello, my name is Megan, and at the bottom it says I'm an occupational therapist. (Learning disabilities participant at the Co‐Design Event).</p> <p>Participants suggested that these badges may be useful in encouraging people to seek them out if they are anxious, concerned or distressed.</p> <hd id="AN0173368790-10">Co‐designed training</hd> <p>People with learning disabilities need to give their input and advice to improve services and educate health and social care professionals. There should be training of professionals by a film made and featuring people with learning disabilities.</p> <p>Training courses aimed at promoting holistic understanding of people with learning disabilities are very important. All co‐design teams proposed that the standard and types of training courses to which staff members are exposed may be improved. Participants asserted that their experiences of interacting with staff members, particularly administrative and receptionist staff, reveal the inadequacy of existing training courses in enabling staff to understand and embrace lived experiences. Distressing and occasionally dehumanising encounters with staff were highlighted as commonplace by learning disabilities and carer participants. For example, it was argued that the emotional impact of visiting a hospital may be exacerbated by staff members who treat people with learning disabilities and carers as numbers, rather than human beings who need to be supported and cared for when waiting their turn to be seen by clinicians. Equally, it was asserted that staff inflexibility in enabling people with learning disabilities to access support deepens anxieties regarding the accessibility of health and social care settings. Learning disability participants shared experiences of receptionists and other staff members who, they felt, could have made small alterations to established processes as a means of improving their experiences of care. As such, participants suggested that staff should be taught to go the extra mile by incorporating an appreciation of lived experience into their practice. These participants want staff to ask them about their needs, accommodation requirements and, in some cases, social and familial histories. Moreover, they want outputs from these inquiries to augment and shape how services are provided.</p> <p>In discussing the value of improved training, participants highlighted that changes to courses should be citizen led. Learning disabilities, carer and staff participants all proposed that e‐learning courses should be designed by people with learning disabilities as a means of promoting awareness of their humanity and rights. In doing this staff, who may have previously only had clinical interactions with adults living with learning disabilities, may learn to understand that members of this cohort are more than just problems to be fixed. Learning disabilities participants taking part in the Understanding Inequalities project indicated that they would be happy to contribute to the creation of/design training methods that are grounded in their lived experiences. According to a participant:</p> <p>I'm trying to think about how we would do the training support, a lot of people would require it and funding and stuff, little things, some things that I've done because I've done volunteer coaching where we coach sport athletes, people with different needs, some of the things I've done, is online learning, courses, e‐Learning. We quite often get occupational therapy students that come to us for a day, spend a day at day care centres, hospitals, see what (we) do. (Learning disabilities participant at the Co‐Design Event).</p> <hd id="AN0173368790-11">The importance of trust</hd> <p>There can be negative attitudes of staff. Participants emphasised that improved standards of care are often founded on the promotion of trust. It was suggested that low expectations regarding quality of treatment diminished people's desire to engage with hospital services and advocate for oneself to staff members. Moreover, the notion that people with learning disabilities are not listened to was presented as a powerful factor in reducing the regularity and consistency of service interactions. Thus, services must work to (re)build trust between people with learning disabilities, carers and its staff members. Health and social care services should seek to promote an environment wherein people with learning disabilities and their carers actively provide information to staff members both before and during appointments and visits: encouraging them to bring hospital passports/cards to health settings and call clinics ahead of appointments to delineate requirements and preferences, amongst other actions. This output may be achieved by staff actively promoting their desire to listen to and learn from people with learning disabilities, as well as via practical demonstrations of their newfound commitment to engagement. External communications demonstrating increased use of processes such as Co‐delivery, wherein front‐line staff and people with learning disabilities work together to devise appropriate treatment pathways, may be an important method through which to foster understanding of the dedication to building relationships with stakeholders.</p> <p>Moreover, trust between stakeholders may be promoted by increasing the continuity of care. This ambition may be achieved by ensuring that people with learning disabilities have access to and are able to interact with a named member of staff who will, ideally, support and advocate for the person. In some cases, this interactive relationship already exists. Participants illustrate that learning disabilities nurses regularly work with members of the learning disabilities community: getting them ready to attend and interact with services. However, it was also suggested that learning disabilities nurses do not have the capacity to do this with all members of the learning disabilities population. According to a participant:</p> <p>We have got the system to do that but unless we know that's what you want, someone has physically got to type that into the system. And that's where you use your learning disability nurses because you can email them. You can email our learning disability nurse and she can you make sure this is on my notes. (Staff member participant at the Co‐Design Event).</p> <p>Furthermore, participants articulated that anxieties relating to service provision is often produced when they perceive the service to be unknowable. To them, mistrust was a facet of the esoteric and incomprehensible nature of hospitals and the services provided within them. As such, participants suggested that trust may be promoted by enabling people to understand and predict what to expect when they attend hospital. This ambition may be achieved by working with adults living with learning disabilities to develop tools through which services articulate likely experiences via accessible mediums. In the words of a participant:</p> <p>So, in quality management in manufacturing in industry they rely a lot on visual aids so that everybody knows what to expect when they turn up some place. (Carer participant at the Co‐Design Event).</p> <hd id="AN0173368790-12">Communication not jargon</hd> <p>People with learning disabilities need accessible and easy information. There needs to be jargon‐free communication and use of more easy imagery. One proposition was that health and social care services reduce its use of medical terminology and phrasing within all formal communications. Participants suggested that jargon frequently adds to anxieties regarding the unknowable nature of hospitals and, consequently, reduces their capacity/desire to engage with healthcare. Furthermore, participants indicated that universal use of imagery in communications may reduce anxiety by enabling people to understand the procedural composition of services and predict encounters within hospitals.</p> <p>Beyond reducing jargon and increasing imagery, services may seek to work with a standing group of people living with different types of impairment (e.g., sensory, learning disabilities and physical disabilities, among others) to Co‐design standardised information that may be distributed to all stakeholders regardless of identity. This group may work with staff to initially design accessible communication templates (letters, emails, webpages, etc.) and, subsequently, assess and evaluate the efficacy and effectiveness of these models over time [HWE's (2022) Collaborate Essex Forum is an interesting example of how this type of group works in practice].</p> <hd id="AN0173368790-13">Care and empathy</hd> <p>When people visit hospital or health and social care services it can induce anxiety and even panic. Anxiety can be remedied by compassionate and empathetic treatment of people with learning disabilities. The author of this article, for example, witnessed a very upsetting incident when a boy had a panic attack, resulting in him feeling scared and scratching and spitting at staff. The situation was remedied through the kind and sympathetic care of a nurse, who was in tears due to the boy's distress.</p> <hd id="AN0173368790-14">Pathways of care</hd> <p>People with learning disabilities can be confused about their course of treatment. A video of treatment pathways would help. Participants proposed that the local Trust may create, promote and distribute a video/illustrated information detailing each person's likely journey from parking in the carpark, to entering the hospital, being seen by a clinician and then returning home. This information would highlight accessible routes tailored to the person's needs and accommodation requirements and provide information regarding available support. Staff participants asserted that the Trust already distributes videos detailing information about treatment to children who will be accessing acute services and highlighted that this type of information provision should be expanded to adults [Health Education England (2022) have also created videos that detail likely experiences of services to patients with learning disabilities. For an example of a patient video, see: https://<ulink href="http://www.youtube.com/watch?v=bqbm6ZfT7jE]">www.youtube.com/watch?v=bqbm6ZfT7jE]</ulink>.</p> <p>Participants also recommended that the Trust provide images of the staff members who they may be meeting during their visit to a site (extending from an image of a named contact at the reception area to that of the practitioner who they will be seeing). These visual cues may enable people with learning disabilities and carers to feel comfortable interacting with staff members and, therefore, promote trusting relationships between stakeholder populations.</p> <hd id="AN0173368790-15">Leadership in learning disabilities</hd> <p>Learning disabilities can often be left behind and almost invisible in practice and policy. There needs to be a named person/leads for learning disabilities services. It is important to have strong leadership by powerful people to improve services, make learning disabilities more visible and promote better access to services.</p> <hd id="AN0173368790-16">Staff uniforms</hd> <p>People with learning disabilities can have difficulty identifying staff. Staff uniforms can more easily identify professionals. There could also be a bespoke and colourful uniform for learning disabilities staff to identify learning disabilities professionals. For example, a lack of consistency in staff uniform usage may reduce people's capacity to understand from whom they should seek guidance when navigating a department. Thus, participants asserted that standardised usage of uniforms that designate roles and responsibilities may enable people with learning disabilities to have a greater understanding of and control over their care. In the words of a participant:</p> <p>Nowadays when you're in hospital, not everybody wears a uniform and so even if you have, not just someone's name because you know you can read the name but you're like I'm not sure if I'm meant to talk to you because you look like Joe Bloggs round the corner.... And it's getting more confusing since Covid because people are wearing scrubs, and whatever colour you can get. They're not even sticking to the right colour. It's whatever's spare. (Learning disabilities participant at the Co‐Design Event).</p> <p>Staff aesthetics also frequently communicate information about the standard and quality of services. Participants emphasised that staff uniforms and clothes, as well as their use of name badges, lanyards and insignia, conveyed messages regarding the capacity and accessibility of individual staff members. For example, participants suggested that people with learning disabilities may avoid staff who do not wear uniforms because their more casual attire does not convey care and concern. To them, medical scrubs or similar outfits suggest competence and speak to an implicit desire to tend to and take care of others. Equally, participants asserted that people with learning disabilities may find it difficult to trust staff who have obscured or difficult‐to‐read name badges. This mistrust, learning disabilities participants emphasised, arises because citizens want to relate to their health care professionals. They want to know the name and identity of the person to whom they are handing responsibility for their care. Moreover, they want to be able to praise the professional after a job well done or, in rare cases, hold him/her to account.</p> <hd id="AN0173368790-17">Empowerment by champions</hd> <p>People with learning disabilities can often be excluded and left behind. A grass roots learning disabilities champion gives empowerment, inclusion, makes learning disabilities more visible and promotes social justice.</p> <hd id="AN0173368790-18">Time pressures on care quality</hd> <p>The fast‐paced, complex and over‐stretched nature of contemporary healthcare contrasts with people's perceived identities and may promote alienation from and disillusionment with service providers. These arenas are perceived to implicitly discourage staff from spending time getting to know people with learning disabilities and building reciprocal and trusting relationships. Staff participants contend that, within these types of environments, they are frequently 'rushed off our feet' and that they 'haven't got time to spend more than 3, 4, 5 min with a patient asking questions'. Therefore, one staff member stated that practitioners often 'go by everybody is normal, so we treat everybody the same' (Staff member at the Staff Feedback Session).</p> <p>Many learning disabilities participants highlighted that they frequently view themselves and their identities as dichotomous to the design and governance of health settings. These participants shared that they often require extended periods of time to comprehend information and prepare themselves for activities and interactions within health and social care services. Moreover, they revealed that they frequently require extensive forms of social and emotional support to effectively interact with services and engage with service providers. To these participants, such proclivities mean that they often feel estranged from and separate to the services that they are using.</p> <hd id="AN0173368790-19">Reasonable adjustments</hd> <p>Reasonable adjustments are a vague concept and will vary between people. It requires further research co‐designed by people with learning disabilities. To participants, the term 'reasonable adjustments' spoke to a multiplicity of potential services improvements that may, in certain circumstances, be required to enhance accessibility and enable people to effectively interact with providers. For many, reasonable adjustments to services constituted types of alterations to the physical landscape of hospitals. Those who use wheelchairs, for example, considered that a reasonable adjustment may be achieved through the provision of increased space in corridors and waiting rooms. For others, however, reasonable adjustments may be orientated around changes to the sensory experience of visiting a hospital. For instance, some participants highlighted that decreased noise in waiting rooms and foyers would represent a valuable adjustment and, subsequently, enable them to access services. Furthermore, others suggested that appointments should not interfere with their professional responsibilities. Those who had worked hard to attain regular employment indicated that they often resented missing shifts and, therefore, argued that services should account for their preferences. This diversity suggests that reasonable adjustments are inherently subjective. The terms ambiguity means that hospital services and staff members will inevitably struggle to devise standardised means of improving everyone's hospital experiences. Therefore, participants suggested that the local Trust pursue processes through which they work with stakeholders to reimagine their use of the term.</p> <hd id="AN0173368790-20">Problems with access</hd> <p>Finding your way round hospitals and buildings can be problematic and disorientating. There needs to be wheelchair access and marked routes to learning disabilities areas/wards. An employed hospital guide with learning disabilities and Learning Disability Ambassador would be good and help people with learning disabilities. Participants argued that the Trust should implement a form of travel companion service, perhaps consisting of people with lived experience who might accompany potentially at‐risk individuals to and from appointments. Furthermore, learning disabilities participants highlighted the need for clearly marked routes to enable them to find their find way around hospitals. These participants indicated that they frequently felt anxious when navigating health and hospital settings. For them, the sheer number of hallways and corridors means that they struggle to remember accessible and appropriate routes through which to attend clinics and surgeries or visit departments and wards. This difficulty is enhanced for those who use wheelchairs as the need to look at signage placed above head‐height causes strain and contributes to a greater sense of inaccessibility. Thus, participants suggested that the Trust employ a system that they called 'the Yellow Brick Road'. This is a coloured stripe placed below or to the side of the person navigating the hospital that leads them to their desired location.</p> <p>According to a participant:</p> <p>Colour‐coded floor so it will be something you can follow. The only example I can think of at the moment is like following the yellow brick road, whereas if you know you're in zone one, and it's the red zone. When you're driving in a wheelchair you can't always look, there's only so high you can reach with your head as well. So, if you know you've got a red line to follow because you're in 17 zone one which is red, or green or pink whatever, you're constantly conscious that you need to watch where you're going. You've got to keep your distance, because of covid you've got to stay left of somebody. So, if you've got something you can follow which is in the floor, you can see where you're going and you can still be alert but you can drive your wheelchair without straining your neck trying to read the signs above you or they might not be above you. (Learning disabilities participant at Co‐Design Event).</p> <hd id="AN0173368790-21">Sensory overload and quiet places</hd> <p>People with learning disabilities can have sensory overload. It is important to reduce noise, have sensory rooms and quieter waiting areas. Participants in all Co‐design teams also spoke to the impact of sensory variables in affecting their experiences of services. These individuals suggested that anxiety produced by loud environments, bright lights and, in some cases, strange or overpowering smells promoted difficult experiences of hospitals: causing them to leave, become agitated and even lash out at staff. Thus, participants argued that reductions in variables that promote what they call 'sensory overload' may benefit people living with learning disabilities and experiencing associated anxieties. This ambition may be realised by decreasing noise, reducing overpowering smells via the use of sanitary products and the use of dimmed lighting in particular rooms (i.e., sensory rooms).</p> <p>Participants also argued that scheduling could be altered to reflect people with learning disabilities' preferences in similar ways to diabetics on theatre lists (i.e., they may be seen earlier due to their condition). In this way, the preferences of the individual would be the major driver in organising the scheduling of appointments: a proposition that participants believe may reduce levels of anxiety. According to a participant:</p> <p>Make sure that I'm seen at the end of the day because I like it to be a really quiet clinic. Or can you make sure that I'm in the office on the left. Because I prefer that one. (Learning disabilities participant at Co‐Design Event).</p> <hd id="AN0173368790-22">The need for lived experience research</hd> <p>People with learning disabilities can feel excluded and left behind in research, by conventional research methods and too narrow methodology. The last recommendation is to involve Learning Disabilities Research Ambassadors to conduct the next stage (Phase 2) of the research.</p> <hd id="AN0173368790-23">DISCUSSION</hd> <p></p> <hd id="AN0173368790-24">Key recommendations for improvement</hd> <p>The key recommendations below are by, about, involving, analysed and written by someone with learning disabilities (Ben Gray). This is a novel approach and perspective that offers the insight of lived experience research.</p> <p></p> <ulist> <item> Roll out a standardised reasonable adjustment card that is noticeable to staff and easily readable (i.e., it answers key questions regarding accommodation requirements and preferences). Similar cards have been used to enable the homeless population to access primary care services. If cards are difficult for individuals to retain, citizens with learning disabilities could work with the Trust to Co‐design a sunflower‐type lanyard. The recognisable aesthetics of the lanyard would ideally convey learning disabilities' identity and prompt staff to explore people's needs and accommodation requirements.</item> <p></p> <item> Mandatory training/E‐learning designed in collaboration with, and featuring, people living with learning disabilities.</item> <p></p> <item> Employment of people with lived experience as guides, known as Learning Disability Ambassadors. These individuals should be made to feel part of the Trust and that they, like all staff members, have a responsibility of care. As such, they should be remunerated for their time and effort.</item> <p></p> <item> Employment of these Learning Disability Ambassadors with lived experience as peer supporters and mentors. In doing this, individuals living with learning disabilities and who lack social networks of support may be supported to access services.</item> <p></p> <item> The design of accessible communications that detail the patient journey and provide information regarding the patient pathway.</item> <p></p> <item> The use of badges or lanyards that display staff interest in learning disabilities. These types of insignia may delineate that staff are Learning Disabilities Champions who have expertise in communicating with and empowering people with learning disabilities. Moreover, these staff would have a particular interest in social justice for citizens with learning disabilities. For example, they may be passionate about ensuring that people with learning disabilities receive equitable treatment and do not experience de jure or de facto discrimination in health and social care.</item> <p></p> <item> The reintroduction of distinct uniforms for staff from different departments and wards. Participants articulated that difficult experiences ascertaining and understanding the identities of staff often reduced their desire to engage with services. There could also be a bespoke and colourful uniform for learning disabilities staff.</item> <p></p> <item> Increased use of participative processes such as Co‐design and Co‐assessment to enable services to reconsider reasonable adjustments: placing the onus of defining what is reasonable not on the service alone but on the collaborative efforts of all relevant stakeholder populations.</item> <p></p> <item> Improving physical accessibility by highlighting and promoting staff flexibility in the way that they interact with and support patients. In this way, individuals who often struggle with busy corridors or defective mechanisms and apparatus may be supported to effectively access services.</item> <p></p> <item> The use of stripes, or 'yellow brick roads', delineating routes to clinics, departments or wards, and so forth. These pathways should be placed below or to the side of the patient to stop them from having look up. Such pathways may be particularly useful in defining accessible routes such as those with flat surfaces or no stairs.</item> <p></p> <item> The provision of access to noncrowded places such as special waiting rooms for people with anxiety, as well as purposeful reductions in sensory triggers such as dulled/dim lighting, reduced noise and smells that convey cleanliness. Participants often highlighted the positive impact of sensory rooms in enabling them to overcome sensory overload and avoid what they define as 'meltdowns'.</item> </ulist> <hd id="AN0173368790-25">Reflections on lived experience research and service user engagement</hd> <p>People with learning disabilities can feel excluded and even stigmatised, in general life, education, employment and also research. I have been made to feel involved and valued by the team at HWE.</p> <p>The team promoted the best level of research involvement in what I have termed the 'goldilocks zone': not too much work (which might be stressful), not too little work (which might make you feel not fully involved), but just the right amount of work (finding the best balance, facilitating good involvement and the best conditions for co‐production).</p> <p>The work was enjoyable and I felt valued, involved and gently encouraged to share my lived experience of learning disabilities. I felt engaged in an important and worthwhile project that makes a difference in the lives of people with learning disabilities. People said I would never work again because of my learning disabilities and mental health problems. But I was able to analyse transcripts and write up findings from a lived experience perspective. This enabled me to believe in myself more and recognise the value that I can bring to others, especially people with shared experiences of learning disabilities and mental health problems.</p> <p>I was also able to draw on my previous work experience as a Support Worker for people with learning disabilities and a younger relation of mine who has severe learning disabilities and autism. I was able to use my emotional intelligence as a carer and relation to bring to the lived experience research themes and recommendations. My relation is unable to talk or care for himself. He will curl into a ball at noise or people he does not know. He will also scratch and bite when frightened, angry or frustrated. My emotional intelligence engendered the recommendations for quiet waiting areas/sensory rooms and the empathy and compassion of nurses, health staff and care workers.</p> <p>The growth in lived experience research and co‐production turns the negative experience of stigma and exclusion into a more positive experience of inclusion, fuller engagement with others and feelings of being valued and accepted.</p> <hd id="AN0173368790-26">ACKNOWLEDGMENTS</hd> <p>The authors would like to thank the participants as well as the team at Healthwatch Essex, particularly Samantha Glover (CEO), Dr. Kate Mahoney (Research Manager) and Rachel Horton‐Smyth (Communications Manager).</p> <hd id="AN0173368790-27">CONFLICT OF INTEREST STATEMENT</hd> <p>The authors declare no conflict of interest.</p> <hd id="AN0173368790-28">DATA AVAILABILITY STATEMENT</hd> <p>The data that support the findings of this study are available from the corresponding author upon reasonable request.</p> <hd id="AN0173368790-29">APPENDIX</hd> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/F04/01dec23/bld12518-fig-0001.jpg?ephost1=dGJyMMvl7ESepq84yOvsOLCmsE6epq5Srqa4SK6WxWXS" alt="bld12518-fig-0001.jpg" title="A1 The who, where, how and what of co‐design [Color figure can be viewed at wileyonlinelibrary.com]." /> </p> <p></p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/F04/01dec23/bld12518-fig-0002.jpg?ephost1=dGJyMMvl7ESepq84yOvsOLCmsE6epq5Srqa4SK6WxWXS" alt="bld12518-fig-0002.jpg" title="A2 Co‐design process [Color figure can be viewed at wileyonlinelibrary.com]." /> </p> <p></p> <ref id="AN0173368790-32"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref6" type="bt">1</bibl> <bibtext> Black, L. A. (2013). Health inequalities and people with learning disability. NIAR 769 ‐ 2013.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref5" type="bt">2</bibl> <bibtext> Bovaird, T. & Loeffler, E. (2013). We're all in this together. Institute of Local Government Studies: University of Birmingham.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref12" type="bt">3</bibl> <bibtext> Bowness, B. (2014). Improving general hospital care of people who have a learning disability.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref8" type="bt">4</bibl> <bibtext> Emerson, E., & Baines, S. (2010). Health inequalities and people with learning disabilities in the UK. Learning Disabilities Observatory and Department of Health.</bibtext> </blist> <blist> <bibl id="bib5" idref="ref11" type="bt">5</bibl> <bibtext> Hosking, F. J., Carey, I. M., Shah, S. M., Harris, T., DeWilde, S., Beighton, C., & Cook, D. G. (2016). Mortality among adults with intellectual disability in England: Comparisons with the general population. American Journal of Public Health, 106 (8), 1483 – 1490.</bibtext> </blist> <blist> <bibl id="bib6" idref="ref13" type="bt">6</bibl> <bibtext> House of Commons Health Committee. Health Inequalities, Third Report of Session 2008 ‐09.</bibtext> </blist> <blist> <bibl id="bib7" idref="ref1" type="bt">7</bibl> <bibtext> Kerridge, T. (2022). Understanding inequalities: Co‐designing accessibility to health services in Mid and South Essex, HWE.</bibtext> </blist> <blist> <bibl id="bib8" idref="ref3" type="bt">8</bibl> <bibtext> Loeffler, E. (2020). Co‐production of public services and outcomes (pp. 75 – 160). Springer Nature.</bibtext> </blist> <blist> <bibl id="bib9" idref="ref14" type="bt">9</bibl> <bibtext> NHS England. (2019). The NHS long‐term plan.</bibtext> </blist> <blist> <bibtext> NIHR. (2020). Better health and care for all. NIHR.</bibtext> </blist> <blist> <bibtext> Northway, R. & Dix, A. (2019). Improving equality of healthcare for people with learning disabilities. Nursing Times, 115 (4), 27 – 31.</bibtext> </blist> <blist> <bibtext> Social Care Institute for Excellence. (2022). Co‐production: What it is and how to do it, SCIE, Egham.</bibtext> </blist> <blist> <bibtext> Turner, S. (2011). Health inequalities and people with learning disabilities in the UK, Learning Disabilities Observatory.</bibtext> </blist> <blist> <bibtext> Turnhout, E., Metze, T., Wyborn, C., Klenk, N., & Louder, E. (2020). The politics of Co‐Production: Participation, power, and transformation. Current Opinion in Environmental Sustainability, 42, 15 – 21.</bibtext> </blist> </ref> <aug> <p>By Ben Gray and Tom Kerridge</p> <p>Reported by Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib12" firstref="ref2"></nolink> <nolink nlid="nl2" bibid="bib14" firstref="ref4"></nolink> <nolink nlid="nl3" bibid="bib13" firstref="ref9"></nolink> <nolink nlid="nl4" bibid="bib10" firstref="ref10"></nolink> <nolink nlid="nl5" bibid="bib11" firstref="ref16"></nolink>
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  Data: Lived Experience Research in Learning Disabilities: The Understanding Inequalities Project from a Service User's Perspective
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  Data: <searchLink fieldCode="DE" term="%22Learning+Disabilities%22">Learning Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Services%22">Social Services</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Disorders%22">Mental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Services%22">Services</searchLink>
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  Data: 10.1111/bld.12518
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  Data: Background: People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co-production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co-production) leads to more comprehensive knowledge and understanding of learning disabilities. Methods: Co-production events were held with people with learning disabilities, facilitated by the co-author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems. Findings: A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations. Conclusions: Lived experience research and co-production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference.
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