Parts of this chapter are reproduced with permission from Russell et al.76 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/
Introduction
People living with a learning disability in the UK are underserved in access to health care.77 They die on average 15–20 years earlier than the general population, have higher rates of long-term health conditions and are more likely to be admitted to hospital as an emergency.78 During COVID-19, the rate of excess deaths for people with a learning disability was more than two times higher than the general population.78,79
More people with a learning disability are developing age-related illnesses, such as dementia and cancer, with a corresponding increase in the need for palliative and end-of-life care.28 This, together with higher rates of emergency hospital admissions, exemplifies why emergency care treatment planning for people with a learning disability is important.
Many adults with a learning disability rely on care from a family carer, often an older parent. Both the person with a learning disability and the parent-carer may make ACPs, including ECTPs, in the context of their caring relationship. While studies have highlighted concerns over proxy decision-making by families, evidence suggests family members can be called upon to make tough decisions if ACPs are not in place.29,80,81
At an early stage of the project, it became clear that we were unlikely to capture the specific experiences or views of people with a learning disability and their families, from our general study population. We secured additional funding to explore views of people with a learning disability and their families about emergency care treatment planning, and to work with people with a learning disability to co-produce resources to support them in engaging with the ReSPECT process.
We partnered with CHANGE a human rights charity based in Leeds and part of the Advonet Group. Advonet is an independent advocacy charity in Leeds within which multiple services run, including CHANGE. CHANGE operates a co-working model, employing people with learning disabilities to co-run projects, co-deliver training and co-create accessible information.82 Two CHANGE members worked with the study team to develop the WP design and participant facing documentation. A clinical specialist lead for learning disabilities joined the independent study steering committee. A member of CHANGE staff with lived experience of a learning disability was part of the interview panel for recruiting the research fellow for this WP.
Aim
To understand how health and social care professionals can optimally engage people with a learning disability in the ReSPECT process and to co-produce relevant support materials.
Research questions
- What are the views of people with a learning disability about ECTPs in general and the ReSPECT process in particular?
- What are the views of carers of people with a learning disability about emergency care treatment plans in general and the ReSPECT process in particular? What might be the challenges for people with a learning disability and those working with them to access and engage with emergency care treatment planning?
- What kind of information, processes and support around emergency care treatment planning and ReSPECT would be useful for people with a learning disability and those caring for or supporting them?
Methods
- A series of workshops with people with a learning disability to explore their views on ReSPECT and emergency care treatment planning and to work with them to coproduce resources to support health and social care professionals to engage with people with a learning disability in the ReSPECT process. We convened a reference group of people with a learning disability to co-design the workshops, contribute to analysis of the workshop findings and review the co-produced resources.
- Focus groups with family carers of people with a learning disability to explore their experiences of and views on emergency care treatment planning in general and ReSPECT in particular.
Workshops for people with a learning disability
CHANGE allocated two members of staff, one of whom had lived experience of a learning disability, to recruit to the project, support the reference group and facilitate the workshops.
Sampling and recruitment
Reference group
An e-mail describing the study and including contact details for the CHANGE project lead was circulated to learning disability organisations and networks for dissemination. Anyone expressing an interest contacted CHANGE. The CHANGE project lead responded to explain more about the study, check that the person was 18 years or over, had capacity to participate in the reference group, and that they were able to attend meetings at CHANGE.
If the person was still interested in taking part, an easy-read participant information sheet with attached consent form (see Report Supplementary Material 8) was provided via e-mail or post (according to the person’s preference) and a second contact arranged to confirm if the person was willing to participate as a reference group member, and to record their consent. Verbal consent was taken with the CHANGE project lead going through the consent form with the person and recording their response on a copy of the consent form which the CHANGE project lead then signed.
Five adults with a learning disability consented to take part. Four of the five people recruited were unable to attend any of the first three meetings. Thus, the initial preparatory meetings for workshop one were held with the remaining participant and the facilitators from CHANGE, including one with lived experience of learning disability.
Three additional reference group members were then recruited by CHANGE. The four reference group members attended all remaining reference group meetings.
Workshops
Workshops were held online to enable as wide a representation as possible within England. CHANGE disseminated relevant study information to national networks of learning disability carer and self-advocacy organisations. Individuals interested in participating or learning more about the study contacted the project lead at CHANGE by telephone or e-mail. The CHANGE project lead responded to check eligibility (aged 18 years or over, capacity to consent to participate in co-production workshops, resident in England, internet access and able to use online platforms either themselves or with a supporter).
If eligible, the CHANGE project lead explained more about the project and answered any questions. Further written information was provided (see Report Supplementary Material 8) and a second contact arranged to seek consent to participate in the co-production workshop series. Prior to obtaining consent the CHANGE project lead checked that the person had read the information sheet, that any questions had been answered, and the person understood what was involved in workshop participation. Verbal consent was then obtained and documented. The CHANGE project lead had experience of taking informed consent and assessing capacity to participate in research. At the start of each workshop, the CHANGE project lead rechecked consent to participate and to record the meeting with all participants. Workshop participants received a shopping voucher for their time after they attended each workshop.
Workshop development
The reference group met before the workshops began to familiarise themselves with the research and to plan the first workshop, then met in between workshops to receive feedback from the previous workshop(s) and plan the next (see Report Supplementary Material 9 for flowchart of meeting activity).
The researcher (JL), who was embedded in both the reference group and workshop process, linked issues raised from the workshops and drew on findings from other areas of the wider study to sustain critical reflection with reference group members. Worksheets and materials co-produced by reference group members and the CHANGE team were also included in the iterative development of the workshops content (see Report Supplementary Material 10). With consent, meetings were audio-recorded to supplement fieldnotes made by the researcher.
Outline of reference group meetings
Meeting 1
Meeting 1 involved the facilitators, researcher and group member getting to know each other; introducing the concept of research, setting ground rules for meetings and explaining the project and specific goals of this WP. The two people with lived experience of learning disability (participant and facilitator) shared their experience of accessing primary care. This set the context and informed the co-development of a roleplay activity to be used in the first workshop.
Meeting 2
The group discussed the ReSPECT process, what it is, its aims and planned outcomes. The ReSPECT form was reviewed and comments on the accessibility or otherwise of the form noted for use as prompts in the workshops. The roleplay for use in workshop 1 was presented and comments/suggestions noted. The group also trialled a story sheet to be used to explore what would support or hinder an imagined character (animal, mineral or vegetable) in completing their ReSPECT planning process. This co-developed story-sheet was used in workshop 1.
Meeting 3
Extracts from data analysis in other areas of the wider study (interviews with patients, relatives, GPs, care home staff and focus groups with the public) were presented and discussed. These extracts were used to develop a ‘jam board’ game designed to elicit perceptions of the different roles and perspectives of patients and professionals in primary care (see Report Supplementary Material 10). The group tested the jam board game as a proposed activity for workshop 2.
Meeting 4
Additional members were welcomed to the group and the introductory elements of meeting 1 revisited. The group then received feedback from workshop 2 from the researcher and CHANGE team. Members then discussed the ReSPECT process more widely including planning ReSPECT conversations. Worksheets to support someone with a learning disability to think through what they would need to support them before, during and after a planned ReSPECT conversation were co-developed and refined for use in workshop 3 (see Report Supplementary Material 10).
Meeting 5
Members received feedback from workshop 3 and examples of completed worksheets. They then considered additional suggested questions from the research team who had also reviewed the summaries of the first three workshops. These questions were included in the planning for workshop 4. The group also contributed to initial planning of a presentation for the main study stakeholder meeting (see Chapter 8).
Meeting 6
Members discussed feedback from workshop 4. The group then contributed to the development of a body mapping activity for workshop 5. The body-mapping activity was co-developed following feedback from workshop participants, that the full depth and breadth of their activities in daily life were not always recognised by services in any planning process involving them. The body-mapping process enabled participants to illustrate themselves holistically and represent their past, present and ‘hoped for’ future.83
Meeting 7
Meeting 7 focused on preparation for the stakeholder meeting. Members agreed what they wanted to say about the co-production process and the activities and resources that were co-developed. They also discussed how to present this work, who would be involved in the presentation and the support needs that they anticipated during the planned stakeholder meeting.
Meeting 8
Members reviewed the existing resources available for people with a learning disability on the RCUK ReSPECT web pages and considered how any resources co-developed in this project could complement or add to these resources. The group also celebrated the successful completion of their work and reflected on the stakeholder meeting.
Workshops
Five workshops were held with each of two groups, each with six participants. We began working with group one for the first three workshops. Following reference group review of workshop three, we began the workshop series with group two. Any additional insights or suggestions from group two workshops were included in feedback to subsequent reference group meetings.
Workshop 1 involved the facilitators, researcher and group members getting to know each other, introducing the workshop format and ground rules, the concept of research and co-production, and explaining the specific goals of the workshops. Emergency care treatment planning was introduced and discussed using ReSPECT as an example. The group went through each section of the ReSPECT form to check for accessibility from the perspective of someone with a learning disability. The CHANGE team and the researcher performed a roleplay to demonstrate both negative and positive experiences of accessing primary care from the perspective of people with a learning disability. The story sheets developed in the reference group were introduced and completed by participants who then shared them with each other, describing their chosen story character and their journey through the ReSPECT process.
Workshop 2 began by exploring the ReSPECT process, who can initiate a conversation, when is it usually done, and what might be the benefits or concerns for people with a learning disability. The group then played the jam board game. The results were shared to understand how easy or difficult it was for people with a learning disability to see the viewpoints of other people involved in the ReSPECT planning process. This led to a discussion of what was important for people with a learning disability in preparing and planning for a ReSPECT planning conversation.
In workshop 3, the group reprised what they knew about the ReSPECT process and then used the worksheets developed and tested by the reference group to document (through words and/or pictures) their anticipated needs before, during and after a ReSPECT planning process. The information and suggestions from the completed worksheets were used to inform the co-development of resources for health and social care staff working with people with a learning disability to support them in thinking about and completing a ReSPECT plan.
In workshop 4, a series of additional suggested questions from the research team, who had reviewed the summaries of the first three workshops, were asked of participants. These questions focused on the timing and content of ReSPECT plans and when they should be used; and how do people with a learning disability think about and understand the concept of future planning.
In workshop 5, participants repeated the story sheet exercise to seek suggestions for improvement in developing it as a resource given their increased knowledge of ReSPECT and emergency care treatment planning. The researcher also explained about the wider research project stakeholder meeting and sought their permission to show examples of their work at the meeting. The group celebrated successful workshop completion and their involvement in the co-production process.
With consent, the workshops were video-recorded to supplement researcher fieldnotes. A summary of the meeting was drafted by the researcher based on the recording and their reflections of the meeting. These were used to provide feedback to the reference group meetings which in turn informed their reflections and suggestions for the next workshops.
Co-production of workshop outputs
Researchers (JL and AR) reviewed all workshop summaries to identify key messages and suggestions around information, process, and support for engaging with the ReSPECT process. The researcher (JL) then presented these to the reference group, with a simplified summary of the report and recommendations from the stakeholder meeting. Two reference group members, one workshop participant who had experience of work on ACP, together with JL and the CHANGE team, used this information to establish the content and format of the recommended outputs. These were drafted by JL, reviewed by AR and AS, and then submitted to CHANGE to convert into easy-read format. The full reference group reviewed the draft versions and recommended minor modifications. Additional comments were sought from a further two workshop group members with a specific interest in supporting end of life decision-making for people with a learning disability.
Reflecting on the process: collaborative autoethnography
Following completion of the workshops, a separate meeting was held in which reference group members evaluated their experiences of working on the project. This was facilitated by JL using a series of questions to aid reflection on the reference group process from the personal perspectives of the people with a learning disability who took part.
The researcher (JL) began by asking the question; ‘What do we think and feel about what we did?’ with the following prompts:
- What meant the most to you?
- Why did this mean the most to you?
- Has listening to other people’s stories affected you?
- In what way?
The reflective process drew on the model of collaborative autoethnography. Collaborative autoethnography extends the idea of autoethnography by involving multiple participants in the process, encouraging the collaboration of multiple voices and perspectives to create a multifaceted account that reflects the complexity and diversity of the shared experiences.84 The researcher (JL) who led the reference group participated in the collaborative autoethnography.
Analysis
Workshops
Workshop summaries were analysed using thematic analysis.73 JL developed summaries based on the workshop recordings and her reflections and notes from each workshop. JL and AR read a sample of summaries and identified codes: (1) related to information, process, and support for engaging with the ReSPECT process (which fed into development of resources) and (2) reflecting the meaning of emergency care treatment planning for people with a learning disability. JL coded all summaries and drafted candidate themes which were then discussed and refined with AR.
Collaborative autoethnography
With consent the reflective discussion was recorded. The recording was transcribed by JL and coded by AR. JL reviewed the coding and any disagreements were discussed and resolved. AR then re-read the coded transcript and identified key themes following Braun and Clark.85
Findings
Workshops
Analysis of the workshop summaries identified three themes: autonomy, trust and process.
Autonomy
Workshop participants in general thought that having a ReSPECT plan was a good idea and could envisage future emergency situations where it would be helpful. ‘If there was an emergency like I said I thought this was a serious emergency, like I was in a car accident or something It’s good to do a ReSPECT form’ (workshop group 1).
Participants felt strongly that ReSPECT plans should reflect their wishes and what was important to them. They were not put off by the emotionally difficult nature of thinking about future illness and life sustaining treatment. ‘I’m in my right mind to make sure what I want is in place. I have a disability but know what I want yeah’ (workshop group 1). ‘I wanna, I wanna put down what I want to happen, how I want people to treat me or speak to me’ (workshop group 2).
Lack of trust in healthcare professionals
Workshop participants expressed doubt about the form itself being found and followed. Many described feeling that they were not seen as a whole person in healthcare appointments and their learning disability overshadowed a clinician’s view of their preferences. They thought this might also be the case with ReSPECT plans with their wishes being disregarded either in completing the plan or in using it in an emergency. ‘I wouldn’t, I won’t be sure if they’re really listening to me or be able to carry out all my preferences’ (workshop group 1). ‘If the ReSPECT form was with you, would they [clinical staff] actually know that you had one. How would they know that you had one?’ (workshop group 1).
Participants also expressed concerns about the capacity assessment documentation on the ReSPECT form and wanted reassurance as to how the capacity assessment was carried out and the justification for a decision of lack of capacity. This mistrust of the process was informed by their experience of healthcare professionals making assumptions about their (lack of) capacity in other clinical situations.
Process
To fully engage someone in the process of completing a ReSPECT plan, and to enable them to make an autonomous decision, they need to understand the process and the content of the plan that is being discussed. Ensuring that the process and form was understandable was a key theme across the workshops. Suggestions to improve this included better information and preparation before a ReSPECT planning conversation occurred, and an opportunity to go over the plan with a trusted supporter after it had been completed. ‘I think things what would help would be having the answers in advance, so you know what you’re going to be asked before you go to the appointment’ (workshop group 2). ‘After the appointment, I’d like to go over everything [with a supporter] and make sure I’ve got it all straight and asked everything I wanted to’ (workshop group 1).
Many of the discussions in the workshops focused on improving the accessibility of the ReSPECT process for people with a learning disability including the need for more time for appointments for a ReSPECT conversation and the presence of a trusted person to support them during the conversation. ‘I would like a friend to come if I could have one for the appointment’ (workshop group 1); ‘and I did a picture of a hand but you’ve gotta have the right support, like people or person to support you. So basically, it’s like you’ve gotta have the right hand’ (workshop group 2).
Group members felt that the language of the form needed to be more accessible, with explanation of terminology on the form itself and not in a separate guidance document. ‘When you’re seeing the DNACPR, someone says, what does that mean?’ (workshop group 1).
Once a ReSPECT plan has been made, it needs to be accessible to the person whose plan it is. Workshop participants noted that a written paper copy was not necessarily accessible for many people with a learning disability. An electronic version may be helpful. Some participants suggested that a recording of the conversation, or of the plan itself, would ensure that the person could have access to it in a format that was useful to them.
Development of resources to support health and social care professionals to engage with people with a learning disability about the ReSPECT process
The development of materials was a staged process to evaluate the explanation of what ReSPECT was, the setting, the preferred format of any resources, key information to be included and suitable terminology to use when explaining ReSPECT and health emergencies. In the workshops, multiple methods were used to support the participants to evidence their thoughts and feelings about the ReSPECT process and to highlight what they felt should be the key elements of any discussion of ReSPECT.
We found that the six-part story method was a popular way to think about the ReSPECT conversation and enabled workshop members to articulate their needs and concerns before, during and after a ReSPECT conversation.86 This format was then used in the final materials. The concerns and needs of people with a learning disability expressed in the workshops fed into the development of a set of questions or prompts for professionals to discuss with a person with a learning disability to ensure all reasonable adjustments needs are considered and all concerns would be addressed during the process of the ReSPECT conversation.
Reference group reflections on the co-production process (autoethnography)
Analysis of the recording of the reference group reflections identified four themes.
Markers of value
Markers of value spoke to the ways in which the reference group members inferred the perceived value of their contribution to the research. Reference group members articulated a tension inherent in the status of the group as more than PPI members but less than employed research team members. While they felt they were an integral part of their WP a lack of social integration with the wider project team left them feeling less valued: ‘it’s important for us to be represented and to be sort of letting other people know that, that there is a space for us within these spaces’ (reference group member 2).
The spaces used to host the reference group were selected to be community spaces hosted by CHANGE but were sometimes read by the reference group as substandard spaces, inferring a sense of second-class status to the group. However, the arts-based methods used to engage with the group were valued as inclusive activities that took into account what worked for them: ‘that little bit of effort was made to speak to the people that it was both like “that worked”. Yeah, in a way that works with them’ (reference group member 2).
Self and others
The reference group valued their ability to make their own contribution but also hearing the contributions of others. They derived reward from being introduced to alternative perspectives during the stakeholder meeting. ‘I liked listening to the people who were coming, and talking about their experiences I liked listening to them’ (reference group member 3).
The process of participation also created changes in the way the reference group viewed themselves.
[Y]ou give up on yourself and you accept that things are just crap and that you’re not gonna be listened to you. But when you’re in a space, it’s like oh actually they’ve been listened to maybe I’ll be listened to as well.
Co-production is not an emotionally neutral process especially when the topic of discussion can resonate with participants’ own experiences and feelings of grief. The immediate effects of this emotional labour are handled by the researcher but we often, wrongly, assume that family or friends will also support the person to debrief: ‘I felt like upset like, sometimes like, like I said to my (family members) … this is how I feel; they don’t even listen’ (reference group member 4).
Tangible rewards
While other studies have reported that PPI participants fear the effect of payments on their benefits, our reference group valued payment as a clear form of recognition of their contribution.87 Non-financial rewards were also valued. Group members expressed feeling positive reinforcement when they understood that their contribution caused changes in others; that their voice was heard: ‘Makes me feel happy, that I can speak now where we speak that thing, and that some people need to listen to it’ (reference group member 4).
Mirror and bridge: the role of the researcher
The researcher played an important facilitative role for the reference group, supporting the group to see the changes they were creating, reflecting back to the group the value of their contribution and what they have achieved. This was evident in the group’s comments on their experience of the stakeholder meeting. ‘We put all the work that people did around the, the, the room in the conference’ (researcher); ‘yes we did’ (reference group member 3); ‘Yeah that was pretty cool’ (reference group member 2).
The researcher also acted as a bridge for feedback to the research team. The researcher’s ability to explain or ‘come clean’ about the limitations of the project as well as giving confidence to the group that their feedback was valued by the team, appeared to create a bond between the group and the researcher.
The reflections of the group and the researcher illuminated the emotional labour of the researcher in this process, which was freely given, to bond with, and relate to, the reference group members. ‘Now I know (participant) needs this [reassurance] and then (participant) will be alright … I have learned you; you have taught me well’ (researcher).
Focus groups and interviews with carers of people with a learning disability
Methods
In these focus groups, we aimed to capture the experiences of carers of people with a learning disability, some of whom may care for people who would not be able to participate in the study directly. If someone expressed an interest in participating but could not join one of the focus groups, we arranged an individual interview with that person.
Recruitment
We sought expressions of interest for focus group participation from carers of people with a learning disability through CHANGE’s national networks of learning disability and learning disability carers’ support organisations, and through online carers support forums and carers groups identified through social media platforms. We provided an invitation e-mail describing the study for circulation through these groups. Potential participants contacted the study team directly and were provided with further information and offered a range of dates for planned focus groups. If they were unable to join a planned focus group, they were offered an individual interview. Participants were given a unique link to a Zoom meeting for the relevant focus group or interview. Prior to the focus group or interview, participants were sent a copy of the ReSPECT form (see Report Supplementary Material 1) and consent form. Initially, consent was taken at the start of each focus group with each participant in turn. However, this process proved challenging and time consuming online so for focus group 3 onwards a separate online/telephone discussion was arranged between the researcher and participant to obtain consent. Consent for individual interviews was taken prior to the interview. Demographic questionnaires were either returned by focus group participants by e-mail to the study team, completed on the telephone or were completed during individual interviews. Participants received a shopping voucher as a thank you for participation.
Data collection
Focus groups were facilitated by up to three researchers (JL, AR, JH). All individual interviews were carried out by JL. At the beginning of the focus group/interview the researcher briefly described the purpose and format for the discussion and the ReSPECT process. A topic guide was developed by AR and JH and refined by a family carer and chief executive officer of a charity supporting people with learning disabilities: Special Needs Outreach Project (SNOOP).88 The topic guide was used to structure and facilitate the discussion (see Report Supplementary Material 5). The topic guide prompted participants to consider potential benefits and disadvantages of emergency care treatment planning for people with learning disability and their carers; how an emergency care treatment planning process could be implemented with people with learning disability, the role of carers in the process; and potential benefits for the wider health service.
Focus groups lasted between 38 and 76 minutes and interviews between 45 and 62 minutes. All focus group and interviews were recorded and transcribed.
Problems with online connections and participant engagement meant that no reliable data was obtained from one of the focus groups (four participants) so this was excluded from analysis.
Analysis
Jacqui Lovell and Amy Russell coded focus group transcripts and the joint interview transcript using the topic guide areas as a framework and then met to compare and refine codes. Following agreement of codes, JL developed a coding framework and coded all remaining interview transcripts against this framework. Reading across the coded data, themes were identified which were discussed and refined by JL, AR and AS.
Findings
Twelve participants were included (five from two focus groups, one joint interview with both parents of a person with learning disability, and five individual interviews). Most participants were aged over 60 years (8 participants) and female (10 participants). All identified themselves as carers for someone with a profound learning disability.
Three themes were identified: process, lack of trust in the system and carers as advocates.
Process: (the process should acknowledge the complexity of care and caring for someone with a learning disability)
In general, carers were supportive of ReSPECT planning as a way of providing clear guidance to clinicians in an emergency when the carer may not be there to support the person with a learning disability. They also saw it as a means of helping healthcare professionals in an emergency when they don’t know the patient.
So yes, in that regard erm it could say all the things that you, you want it to say and you could put your numbers down, your involvement down, you could put a second number down if you weren’t available and all that.
And also with [person with a learning disability’s name] you can’t learn anything straightaway because he might start gabbling and you think, ‘Oh, he’s just ... is he ...’ you don’t expect him to be, have the, the disabilities that he does have, you know, so ... yeah, it’s got to be a help. It’s got to be a help, having some more information.
Carers’ views on the process of ReSPECT planning reflected their role in understanding and advocating for the person with a learning disability and the complexity of care needs to be considered. Carers were clear that they should lead the ReSPECT process including deciding which clinicians should be involved.
Our loved ones are known to a multidisciplinary team and I think we knowing our young people as we do should be the ones to decide who we elect to be that clinician who knows them best rather than one-size-fits-all GP.
They emphasised that the ReSPECT conversations needed to be collaborative, possibly involving several family members, and that they required sufficient time to do this properly citing the need for a number of ReSPECT meetings before the completed form is signed. One participant suggested that ReSPECT conversations should follow the format of a best-interest meeting for a person who lacked capacity.
It would actually be it would have to be, it’s got to be over a certain amount of time. It’s not something that can be just, just done in one appointment … and I want to rip it apart so that I know I’m understanding absolutely everything that’s on there so that there’s no regrets.
Different people have different views on what is a meaningful life, and they make decisions based on that … and therefore the best interest meeting, who attended, what was discussed and what were the conclusions is essential in order to make sure that there is no cause for concern.
All carers felt that it was important to do this process early and review regularly.
Lack of trust in the system
While carers were generally supportive of the ReSPECT process, they expressed doubt about how the process would work in practice. Their past experiences of direct discrimination toward themselves as carers who were not trusted to know and understand the needs of the person in their care, and a general disregard of the quality of life that people with a learning disability may have, influenced carers’ lack of trust in the system. A recurring concern for carers was whether ReSPECT recommendations would be acted on in an emergency. They lacked confidence in the efficiency with which ReSPECT plans would be available when needed.
but sometimes you go to A&E and they or you go to, you know, and they can’t even access a doctor’s letter, can’t you bring your records up. So, God only knows if they’reable to, to, to find this ReSPECT form.
Would they ask? Would they ask whether there’s one in existence or not? Would they ask that question?
Even if the plan was available, carers expressed fear that recommendations may not be followed unless they were present to reinforce them: ‘I’m, I’m not so sure it would be followed. I would like to feel it would be followed but what, what proof have I got that it’s ever going to be followed’ (parent-carer interview 5). Indeed, one person expressed surprise that the ReSPECT plan was not legally binding.
I think it’s appalling that it’s not a legally binding contract. It needs to be because that security needs to be given in a really difficult time to them families … that you know, yes, we will do what you’ve asked for.
However, some carers felt that if they had good a relationship with their doctor, they would be confident in trusting that the plan would be followed.
I, I think if my doctor was proving to me that he was being a very good GP and this was going for a couple of years, I’d have no reason to mistrust him. I would then assume that if he’s involved with this plan that he was going to stick by his word and do what he needed to do.
Carers as advocates
Carers saw value in the ReSPECT process, but primarily as a secondary enforcement of their own advocacy role and to counter clinician stigma around learning disability. They felt it could be used to indicate their support network and care needs, so the person was not hospitalized without an advocate who knew them: ‘I do have an inherent fear of [son’s name] just being admitted to A&E, somebody forgetting to tell me and then doing whatever they want to him’ (parent-carer interview 4).
For some carers, their role as advocate negated the need for a ReSPECT plan.
So I don’t see the need for one for my family … in the sense that if, if there is an emergency then you know I’m going to be there, I’m going to be talking to them … you know you will have to deal with the emergency incident on its merits at the time and that piece of paper that ReSPECT is almost historical.
This carer’s strong sense of advocacy for the person in their care also influenced how they perceived completing a ReSPECT plan for themselves.
I think I would not want anything that is going to make my family’s life more difficult. And for me, [son’s name] is the priority. Therefore, I don’t want anything for me that’s going to make her [daughter] feel, ‘oh Lord, now I’ve got to look after mum too’, so I’m not entirely sure I would want something that’s enabled me to survive but disabled me entirely.
Summary
Workshop attendees expressed a desire to engage in the ReSPECT process and to be supported in that process. They made multiple suggestions to enhance the planning of ReSPECT conversations and emphasised the need for preparation before the conversation.
Overall, carers were cautiously supportive of ReSPECT plans but saw them in the context of their lived experience of advocating for a person with learning disability in the healthcare system. Where ReSPECT plans supported this advocacy role, it was welcomed but they did not trust that it would be followed without their input. Developing a ReSPECT plan for a person with a learning disability requires time and understanding of their complex needs.
Overall, the reference group’s experience of the process was positive, particularly when they were able to experience the contribution they were making. Both financial and non-financial benefits of the experience were identified
Strengths and limitations
This WP has embedded the voices of people with a learning disability and their carers in an evaluation of the use ReSPECT in primary and community care, ensuring that their perspectives and experiences inform future developments. Collaboration with CHANGE strengthened the project, providing expertise in working with people with learning disability and production of easy-read resources and information.
The reference group initially struggled to retain members due to their own personal circumstances and had to enter a second round of recruitment. This meant the group had less time to work together and bond which may have impacted on their effectiveness and their experience of participation. Recruitment to carer focus groups was challenging and technical issues meant that online engagement was intermittent for some participants.