Exploring the Enablers and Barriers to Social Prescribing for People Living With Long-Term Neurological Conditions: A Focus Group Investigation

Exploring the Enablers and Barriers to Social Prescribing for People Living With Long-Term Neurological Conditions: A Focus Group Investigation | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Exploring the Enablers and Barriers to Social Prescribing for People Living With Long-Term Neurological Conditions: A Focus Group Investigation Suzanne Simpson, Moira Furlong, Clarissa Giebel This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-403346/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 13 Nov, 2021 Read the published version in BMC Health Services Research → Version 1 posted 11 You are reading this latest preprint version Abstract Background People living with Long Term Neurological Conditions (LTNCs) value peer support and social activities. Psychological support and wellbeing enables them to manage their condition. Social prescribing is a formal process of referring patients to a link worker to co-design a plan to improve their health and wellbeing. Intervention involves supporting participation in activities based within the individual’s local community. This study aimed to explore the barriers and enablers to accessing social prescribing for people living with LTNCs (plwLTNCs). Methods A total of four focus groups were carried out with 17 participants, including different neurological conditions such as multiple sclerosis, Fragile X Syndrome, epilepsy, and traumatic brain injury. Two participants were family carers and supported people living with epilepsy and motor neurone disease. Findings were analysed using thematic analysis. Results Five themes were identified: ( 1 ) Lack of knowledge; ( 2 ) Service provision difficulties; ( 3 ) Benefits of social prescribing activities; ( 4 ) Physical barriers and ( 5 ) Psychological barriers. There was a lack of knowledge about social prescribing and what it actually was. Participants anticipated service provision difficulties relating to funding, link workers need for knowledge of LTNC’s and for activities to be varied and individualised. The potential benefits of social prescribing activities were recognised across the groups especially its potential to tackle loneliness and to offer plwLTNC’s purpose. Participants highlighted a number of physical barriers such as transport and accessibility; and psychological barriers such as anxiety and stigma. Conclusion Social prescribing aims to address the health inequalities of those living with long-term conditions, however currently it is likely to exclude plwLTNCs. Recommendations for future research are made. Health Economics & Outcomes Research Health Policy neurological conditions social prescribing enablers barriers link workers wellbeing Introduction Poor mental health is considered to carry an economic and social cost of £105 billion a year in England (PHE, 2018). This includes indirect costs of unemployment, as well as direct costs relating to health and care provision and the individual costs of reduced quality of life ( 1 ). More than 4 million people in England with a long-term physical health condition have mental health problems, and many experience significantly poorer health outcomes and reduced quality of life as a result ( 2 ). There are an estimated 14.7 million neurological cases in England, equating to at least 1 in 6 people living with one or more neurological condition ( 3 ). A Long-Term Neurological Condition (LTNC) results from injury, damage to, or disease of the nervous system (brain, spinal cord, peripheral or autonomic nervous system) ( 4 ). Neurological conditions make up 20% of all long-term conditions and include a wide range of illnesses ( 4 ). In 2018 the Neurological Alliance GP survey revealed that 19% of patients living with a neurological condition had had an unplanned admission to hospital in a period of 12 months, which is twice the rate for all people with a long-term condition (9.8%) ( 5 ). People living with neurological conditions have the lowest health related quality of life of any long-term condition and deaths are 35% more likely to be premature ( 6 ). Data produced by NHS RightCare suggests there is a substantial financial savings opportunity in relation to reducing emergency admissions and bed days for people living with neurological conditions ( 7 ). Research into quality of life in these patient groups, such as the Trajectories of Outcome in Neurological Condition (TONiC), has found that patients emphasise the importance of psychological support and wellbeing in helping them manage their condition ( 8 ). The Neurological Alliance found that 53% (n = 3,459) of the neurology patients they surveyed reported living with at least one other co-morbid condition ( 9 ). Mental health conditions, including anxiety and depression, were among the most frequently reported. For some, a mental health condition can be a clinical symptom of their neurological condition. For others, a mental health condition can be part of coming to terms with diagnosis, the challenges of living with a neurological condition such as maintaining or finding employment, or medication side-effects. Social prescribing is a means of providing practical support and improving the psychological wellbeing of the population ( 10 ). Examples of social prescribing activities include accessing educational courses, volunteering, attending social clubs, joining in with hobby clubs, dance or art classes ( 11 ). Other forms of support may include accessing debt or housing advice or connecting an individual to employment support services ( 12 , 13 ). Primary Care Networks have been given funding to roll out social prescribing with money allocated to recruit link workers ( 14 ). The NHS England 10 High Impact Actions which outline plans for general practice hopes social prescribing will reduce GP workload and increase capacity ( 15 ). The NHS Long Term Plan outlines plans to develop guidelines for how to promote health and wellbeing within communities, as well supporting the design of local plans that have a focus on prevention and wellbeing ( 16 ). The majority of published research on activities that improve mental wellbeing have focused predominately on the general population or people living with long-term conditions ( 17 ). The Foresight project ( 18 ) outlined five actions to improve wellbeing, including connecting with other people; engaging in physical activities; being aware of the world around us, often referred to as mindfulness; trying something new or rediscovering an old interest; and doing something nice for a friend/stranger. The report also outlined the impact of external stressors such as debt and poor housing on mental health. There is limited research looking at the use of activities to improve wellbeing in people living with LTNC. Research has shown that people living with LTNCs value opportunities for peer support and social interaction ( 19 ). Studies have explored the benefits of peer support groups for people living with motor neurone disease (plwMND) and found that that peer support groups were beneficial for some, but not all ( 20 , 21 ). Simpson et al. identified that the opportunity to engage in a variety of community-based activities was desirable for plwMND and provided purpose ( 22 ). The use of community-based exercise groups has been found to improve the wellbeing of people living with stroke and their family carers ( 23 ). Similarly, Yoga ( 24 , 25 ) and dancing ( 26 , 27 ) have been shown to improve wellbeing in addition to physical health for people living with Parkinson’s Disease. The use of mindfulness by people living with Multiple Sclerosis ( 28 , 29 ) and Traumatic Brain Injury ( 30 ) has demonstrated a positive impact on wellbeing. Activities such as gardening ( 31 , 32 , 33 ), walking ( 34 ), creative tasks ( 35 ) and music ( 36 , 37 ) have been the most widely researched for use with people living with dementia with evidence supporting their use for improving quality of life and wellbeing. The barriers and enablers to implementing social prescribing for long-term conditions such as diabetes, cardiac and respiratory conditions have seen growing interest. Husk et al. found that patient motivation, self-efficacy and a belief in the relevance of the activity impacted on enrolment to social prescribing programmes ( 38 ). Cost, transport, venue and timing of the activity impacted on client engagement. Reminder phone calls, written information, introduction sessions or attendance with a ‘buddy’ supported client engagement. Adherence was believed to need trained staff exhibiting good leadership, an activity fostering interpersonal relationship, trust, supportive environments, individuals perceived change in condition and absence of negative effects. Wildman et al. explored link workers perceptions of the enablers and barriers to client engagement. Link workers felt they lacked the capacity and/or expertise to offer clients with complex needs the high-intensity and the specialist support they needed ( 39 ). Training focused on the wider determinants of health, behaviour change, mental health issues as well as training on specific long term conditions was seen to be an enabler. These findings were recently echoed by Holding et al. who found that link workers reported difficulty supporting people living with severe mental health or physical difficulties and identified further barriers related to local infrastructure ( 40 ). Cuts to community organisations funding and the benefits system are believed to be significant barriers to implementing and sustaining social prescribing services ( 41 ). There are no studies examining the barriers and enablers to implementing and engaging with social prescribing from the perspective of people living with LTNCs. Methods Aim The aim of this study was to understand the experiences of people living with LTNC in engaging with social prescribing services or programmes and the perceived enablers and barriers to participation. Whilst the COVID-19 pandemic has halted nearly all face-to-face social support services, including for those living with dementia (42), it is important to understand the extent and benefits of social prescribing in a pre- and hopefully soon post-pandemic world. By establishing their understanding, their needs and suggestions for activities to be provided as part of a social prescribing initiative, services can improve adaptation and provide more targeted support for people living with LTNCs. Participants and Recruitment Convenience sampling was used to recruit patients during the monthly coffee morning at a neurological support charity. Various LTNC support groups attend the coffee morning and were asked to cascade information about the project through their respective groups. People with a diagnosed LTNC and family carers of people with a LTNC (18 years or older) were eligible to participate in the focus groups. Information on how to contact the co-investigator was provided in the patient information sheet, which was given to anyone who expressed an interest in the study. The project lead was contacted by potential participants and invited to a focus group. Participants were assessed to ensure they had capacity to participate and provided written informed consent prior to participation. The study received ethical approval from the University of Liverpool [ID: 5607] prior to study commencement. Procedure Focus groups consisted of a maximum of five participants, and consideration was made in relation to the needs of individuals signing up to each focus group and groups were kept to a maximum of five participants to enable full participation. The co-investigator conducted the focus groups at a local neurological support charity. Before the focus groups commenced, the co-investigator assessed the mental capacity of all the people with LTNC and written informed consent was taken. Anyone deemed to lack capacity was excluded from the study. The focus groups lasted no longer than 90 minutes and were audio-recorded. All audio-recordings were subsequently transcribed and anonymised. Data collection Written informed consent was gained prior to participation. Focus groups were carried out at a local neurological support charity. Focus groups were audio-recorded and lasted between 30 and 90 minutes. Data analysis Focus group data were analysed using thematic analysis by CG and SS, both trained in conducting and analysing qualitative research. Thematic analysis is a method of exploring, analysing and reporting patterns within themes and identified based on prevalence and/or keyness (43). Each transcript was analysed by two research team members (CG, SS) and common themes highlighted amongst the participants responses. Identified codes were discussed jointly and themes agreed. Recruitment did not allow confirmation that saturation had been reached. Findings A total of four focus groups (minimum 4 participants) were carried out with a total of 17 participants, 12 female and 5 male. Participants represented the views of people living with a variety of neurological conditions, this included multiple sclerosis (2), Fragile X Syndrome (1), epilepsy (4), traumatic brain injury (1), essential tremor (2), ataxia (2) and subarachnoid haemorrhage (3). Two participants were family carers and supported people living with epilepsy (1) and motor neurone disease (1). Across the four focus groups five themes were identified: (1) Lack of knowledge; (2) Service provision difficulties; (3) Benefits of social prescribing activities; (4) Physical barriers and (5) Psychological barriers. Theme 1: Lack of knowledge The majority of participants had not heard of the term social prescribing. Those who had had been made aware of it by the charity where the focus groups took place or had seen information in the media. Reference was made to the term social prescribing and its link to a medical model of care and the potential difficulties the term would introduce when searching for information. “I don’t think I’d necessarily heard the term but I know what that means so I’d seen stuff about people gardening and people being outdoors so I presumed it was all interlinked in to that side of things.” Focus Group 1 Participant “I have heard it in the media and the papers and actually I think there was something on BBC news actually all about it and I might not be right but I think it is all about coming up with something that you can do to aid your condition or your, your recovery after what might… all of us have some sort of neurological condition so it is about that.” Focus Group 4 Participant None of the participants had knowingly accessed a social prescribing service. For the few who had accessed activities or groups, the trigger was a passing comment made by a health professional or was the outcome of their own motivation to participate. Participants highlighted the need for education of health care professionals about social prescribing so that they could consistently signpost or refer people living with LTNCs. “…because it was just like a two-minute thing my consultant recommended coming here because there was no more that he could do, because he was so busy it was just like go there for help with practical support, I hadn’t even thought of it but I was told here.” Focus Group 2 Participant “I think also it is getting GPs on board as well because if they do, GPs are obviously snowed under aren’t they?” Focus Group 4 Participant Participants felt link workers would need to have knowledge and understanding of LTNCs. There was recognition amongst the groups that this would be a challenge given the number of neurological conditions and the vast array of difficulties faced by people living with LTNCs. Participants made reference to link workers needing good communication and social skills. They felt given the challenge link workers would face, they would need to feel valued and have access to training and support. “I think something like this, as like a booklet for people potentially going in as link workers would help them. Like the different diagnosis, what to expect if your like…” Focus Group 2 Participant “You need people who are like no matter who the person is or what’s in whether they are autistic or epileptic or I don’t know, no matter what the problem is they’ve got to be able to actually communicate with that person which would probably be difficult to find” Focus Group 3 Participant Theme 2: Service provision difficulties The need for knowledge from link workers extended to services and activity providers. In order to achieve this understanding, emphasis was placed on the need to involve people living with LTNCs in the development and delivery of services. Participants recognised the cost of providing services and that activities needed to be adequately funded. “I mean the big thing is funding isn’t it, I mean, the NHS is struggling and we, you know social prescribing requires money to have a link worker and valuing the fact that this link worker is important. You know you can go to your GP and go and see the specialist nurse and whatever but they don’t fully understand what your condition is and there are so many different conditions so funding is a big thing” Focus Group 4 Participant “It’s all more workers thought isn’t it? You know it’s not an easy fix you know. One to one is all more work and it’s all more expense if it’s being paid for by the NHS.” Focus Group 2 Participant Recognition of individual differences despite the same diagnosis was important with participants emphasising that one size does not fit all and that activities would need to be varied. Ensuring services got to know the person living with a LTNC and focused on their abilities rather than their disabilities was a priority. “I think with social prescribing for neurological conditions there has to be realisation that not one size fits all because of the variety of the conditions you can’t just say you’ve got MS, you’ve got epilepsy whatever maybe I’ll send you off to a gardening group. So there has got to be a real thought process behind what’s being prescribed for people.” Focus Group 1 Participant “Maybe it will put a lot of emphasis on the things that you can’t do anymore, and even if you can’t do things anymore, they don’t put the emphasis on all of the stuff that you actually still can do and focus on that instead.” Focus Group 3 Participant Theme 3: Benefits of social prescribing activities Participants discussed the difficulties faced by people living with LTNCs. Social isolation was seen as a significant problem in all focus groups. Participants expressed feelings of loss, difficulties maintaining relationships, managing families concerns and the impact of not working. “The isolation is the worst part because you go from, well depending on what issue you have, I have gone from what I had which was a very pressurised work environment, kind of working at the top of what I could do in a very busy I suppose in and I know this sounds stupid, but being quite important in terms of what I did to everything has gone.” Focus Group 1 Participant “I think getting a diagnosis is isolating in itself because you can still have your friends and your family and everyone that you used to have still around you but it’s something that has only happened to you. So things to help people feel less isolated” Focus Group 3 Participant Social prescribing was considered an opportunity to reduce social isolation for people living with LTNCs. Activities provided the opportunity to socialise and connect with others. Attending activities could provide a reason to leave the house and participation in activities provided a sense of purpose. New activities offered the opportunity to learn a new skill and for some this was felt to act as a form of rehabilitation promoting further recovery. Others felt activities provided important mental stimulation. “I do a stitch club because my brain has not been working properly and I have been like well if my brain needs to work out new ways to work let’s do something that your brain has never done before, so I stitch and actually from stitching that got me involved in other bits and bobs so it’s just been super cool” Focus Group 1 Participant “I think volunteering gives you a real sense of purpose. It’s really important. Obviously it’s easier to access for people with neurological conditions, looking for a job might be difficult, but getting in to volunteering can be easier” Focus Group 2 Participant “I don’t want to sit at home and not doing anything I don’t think anyone wants that” Focus Group 4 Participant Participants made particular reference to the benefits of volunteering and peer support. Opportunities to volunteer were key to providing people with feelings of purpose and could provide an alternative to paid employment. Meeting with people with the same or similar conditions was important for many of the participants. Attendees could choose to talk about their conditions and gain support, alternatively they could talk about anything other than their condition, but knew they were with people who understood. That’s actually probably the best thing about me being in an environment with people who have got head injuries is that nobody talks to me about it. Focus Group 1 Participant Theme 4: Physical barriers Participants raised a number of concerns regarding accessing social prescribing activities. The availability of activities and the accessibility of buildings was recognised to be a physical barrier to participation. Timing of activities was also discussed in relation to how medications or symptoms of a neurological condition can impact on a person’s ability to attend activities at certain times particularly early in the morning. Participants considered the impact finances had on the ability to participate in activities and highlighted problems negotiating the benefits system. “Cause like you were saying before, if your benefit that you’re entitled to is stopped your income is going to go down so of course money to access anywhere or there being places that are local for you to go to. It’s more expensive to get to if they’re not local anymore” Focus Group 2 Participant “Yes, and even the time of day perhaps as well. I know speaking perhaps for XXX is that she is always better, livelier because of medications in the morning, and we’ve spoken to other people and by the afternoon because of the medications they are on they’re weary and need a rest and tend not to go out in the evenings as well for various reasons, so mornings tend to be, certainly for us and others that we know, are better.” Focus Group 1 Participant Diagnosis with a neurological condition can result in temporary or permanent restrictions on driving. All the groups talked about the impact of being unable to drive and issues relating to accessing public or private hire transport. “I’m sort of the isolated sort of way because I’m unable to drive due to my condition so when my mum who is also sitting next to me, is out then I can’t drive so I’m sort of isolated so I’ve just sort of sat there and there is no outreach like kind of groups for me and unless I’m able to get taxis to places” Focus Group 1 Participant “You go out and you might have a seizure or the train or on the train platform or on a bus and people won’t help you or in a taxi and you might get chucked out the taxi just anywhere or the taxi driver’s going to act real funny about it so you end up sort of thinking ‘oh, you know, it’s just sensible if I stay at home’…and then you do stay at home and then you never leave…and then you just get comfortable staying in” Focus Group 3 Participant Theme 5: Psychological barriers All groups highlighted a number of psychological barriers. Reduced confidence and anxiety was regarded as a barrier to people with LTNCs visiting new places or joining groups and activities. Concerns related to physical symptoms, communication and duration of increasing isolation was discussed. Families’ worries about the person living with a LTNC and needing to manage their concerns was explored as another potential barrier. “I’d love to get out and about a bit more but the fear of going out and the fear of tripping that’s what makes me think about, I know I shouldn’t because I’m over reacting or you may think so but me, I’m not. I panic, I am a panicker.” Focus Group 3 Participant “I think one of the biggest issues is the actual carer or family that are trying to maybe cocoon the person with the neurological condition and making assumptions like ‘well I don’t think they can do that’ because they are trying to be overprotective so I think it’s the link worker tried also needs to work with the family to ensure the family are and the carers are comfortable because once they feel that comfort then they will work with the link worker” Focus Group 3 Participant Stigma and lack of acceptance by others was seen as a significant barrier for people living with LTNCs. The general public’s awareness of LTNCs was felt to be poor in particular their understanding of hidden or invisible disabilities. There appeared to be a strong desire to be accepted and treated like everyone else. “Well the main worry is if you haven’t gone so long without a seizure and you’re frightened of people’s reactions... Cause I’ve been stopped by the police for being drunk and I don’t even drink…because they don’t understand the condition, you know there’s people with different disabilities they don’t understand. Because I always say role reversal, you’ve got to have been through it to understand it” Focus Group 3 Participant “I think with anybody who has had a neurological condition physically you look fine, it is what’s going on in the inside and people don’t, don’t know and that is due to lack of knowledge, lack of education.” Focus Group 4 Participant Participants felt access to support to attend groups would be important and they felt consideration was needed as to how long this support was provided. Participants felt people living with LTNCs may require a more prolonged period of support to be able to continue participation independently. “I think sometimes with neurological conditions the person needs to be there to support them a little bit longer than maybe someone who doesn’t have a neurological condition” Focus Group 4 Participant Discussion These are amongst the first findings to explore the potential benefits and perceived barriers to accessing social prescribing for people living with LTNCs. Participants highlighted that there was very little knowledge of social prescribing amongst people living with LTNCs. Those who had accessed social prescribing activities had done so by chance and as a result of their own proactiveness. The lack of signposting by health professionals was apparent and there was an agreed need for health professionals to be educated about social prescribing. Bickerdike et al. reported that social prescribing was unfamiliar to many GPs and in order to engage participants they required a good clear explanation ( 44 ). This sentiment is echoed by Bertotti et al. who found that ‘buy in’ from GPs was essential with adequate time allocated during consultations to explain social prescribing ( 45 ). The benefits of participation in activities was recognised by all the focus groups. Participation was seen to provide meaning and purpose. A strong emphasis was placed on the social benefits of participation. Meaningful activities are known to offer opportunities for happiness, satisfaction and connection with others ( 46 ). Social isolation and loneliness is experienced by many people living with a neurological condition. It is well documented that, in the long-term, individuals with traumatic brain injury (TBI) are less active in social and leisure activities and they experience a drastic decrease in the number of friends and the frequency of social contact ( 47 ). The same can be said for those people living with dementia especially if living alone ( 48 ). Stigma was found to impact on social identity leading to loss of confidence and anxiety. Research into stigma particularly the impact of living with epilepsy has shown that stigma can result in a perceived reduction in social value and poor quality of life ( 49 ). Peer support was an important element of social participation as this helped to provide a sense of acceptance and belonging. Research suggests peer support helps people to manage their long term conditions and should be valued ( 50 ). Having access to support to attend activities was important to aid confidence. Siette et al suggest that befriending interventions can potentially influence mental health outcomes and personal relationships for people living with mental and physical health problems ( 51 ). Support to return to work or to find volunteering opportunities was a desirable area for link worker support for many of the participants. People with LTNCs who fail to return to work after injury or onset, or who are encouraged to relinquish work prematurely may be financially disadvantaged, have a poorer quality of life and suffer adverse health outcomes such as anxiety and depression ( 52 , 53 , 54 ). For example, returning to work or education is a major goal for many people who sustain a TBI but only about 41% are in work at one and two years post injury ( 55 ). Studies of employment and work loss in Multiple Sclerosis cite unemployment rates ranging from 24–80% and unemployment has been associated with disease progression and an increase in symptoms ( 56 ). These consequences result in increased consumption of health resources including GP services and consultant contacts. Participants discussed the physical barriers to accessing social prescribing activities. Transport was seen as a significant barrier to participation. Many studies have highlighted that transportation is often a barrier to participation in community based activities ( 22 , 57 , 58 , 59 ). Without changes to local infrastructure transport will continue to be a barrier for many people not just people living with LTNCs. Participants emphasised the need for knowledgeable link workers and services given the complexity of LTNCs, the challenges faced by many living with a neurological condition and the importance of individuality. A recent systematic review ( 60 ) examined the experiences of people living with LTNCs engagement with community rehabilitation and support services. They found that outcomes of self-efficacy and self-management were important for people with stable and progressive LTNCs. Interactions with individual professionals were found to influence engagement and desired outcomes. As a result, training should develop the advanced communication skills and behaviours required to facilitate self-efficacy and self-management. The findings of the study are particularly relevant given the COVID-19 pandemic and the shielding restrictions placed on many plwLTNCs due to their diagnoses and comorbidities ( 61 ). Although carried out before the national lockdown the study highlights the array of barriers already faced by plwLTNCs, but many will now face new barriers such as deteriorations in their mental health. Many stroke survivors have experienced increased social isolation and changes to their mental wellbeing as a result of being unable to leave their homes and as a consequence of restrictions placed on services such as community rehabilitation ( 62 ). As restrictions lift many will continue to experience new barriers to participation. This study was subject to some limitations. It is recognised that the study included a small number of plwLTNC and participants may not be representative of all LTNCs. As a result of convenience sampling, our study included people with multiple sclerosis, Fragile X Syndrome, epilepsy, traumatic brain injury, essential tremor, ataxia and subarachnoid haemorrhage. The family carers supported people living with epilepsy and motor neurone disease. However, this is one of the very first studies exploring the extent and benefits of social prescribing in LTNCs, indicating steps for future research to build on, such as expanding the participant pool to incorporate a greater variation of LTNCs. The majority of participants were regular attendees at the charity where the focus groups were run and this may have influenced their responses. The study may not represent those plwLTNC who experience significant difficulty leaving the house and are in greater need of social prescribing than those people represented in this study. Future research should aim to reach out to those who are unable to leave their homes to establish if they experience the same or different barriers to social prescribing activities. Conclusions As one of the very first studies exploring the extent and benefits of social prescribing in LTNCs, this study emphasised the need to consider the whole system and how social prescribing can be framed to meet the needs of plwLTNC. Future research should explore how best to enable participation by overcoming physical and psychological barriers and by identifying interventions that reduce the impact of psychological barriers such as stigma. A particular focus needs to be set on the impact of the COVID-19 pandemic on engaging with social prescribing, as this is likely to have thrown up further barriers in accessing general social support, as emerging evidence highlights for people with dementia and carers ( 63 ). Local infrastructure needs to evolve in order to reduce the physical barriers faced by plwLTNC in particular transport. Without major changes, plwLTNC will endure further inequalities relating to the delivery and accessibility of social prescribing. Declarations Ethics approval and consent to participate This study received ethical approval from the University of Liverpool Central University Research Ethics Committee B [ID: 5607]. Participants provided written informed consent. All methods were carried out in accordance with relevant guidelines and regulations. Consent for publication Not applicable. Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests Funding This study was funded using money awarded to SS from NHS R&D North West Health Education England and NIHR Bridging Scheme. CG is funded by NIHR ARC NWC. Authors' contributions SS and GC facilitated the focus groups and analysed the data. SS prepared the manuscript with feedback on drafts from GC and final comments by MF. All authors read and approved the final manuscript. Acknowledgements Thank you to all the plwLTNCs and family carers who participated in this study. Thank you to The Brain Charity for advertising and hosting the focus groups. Thank you to The Walton Centre medical secretary’s Lisa Fletcher and Nicola Preston for transcribing the recordings. The author would like to dedicate this paper to her father Frank Rawlinson who passed away on the 12 th December 2020 with Advanced Dementia. References Public Health England. (2018). Wellbeing and mental health: Applying all our health. Retrieved from https://www.gov.uk/government/publications/wellbeing-in-mental-health-applying-all-our-health/wellbeing-in-mental-health-applying-all-our-health Naylor, C., Parsonage, M., McDaid, D., Knapp, M., Fossey, M. & Galea, A. (2012). Long-term conditions and mental health: the cost of co-morbidities . The King's Fund, London, UK. ISBN 9781857176339. Neurological Alliance. (2019). Neuro numbers 2019 . Watford, UK: The Neurological Alliance. 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London, United Kingdom: Royal College of General Practitioners. National Health Service. (2019). Universal Personalised care: Implementing the comprehensive model . London, United Kingdom: National Health Service. The Kings Fund. (2017). What is social prescribing? Retrieved from https://www.kingsfund.org.uk/publications/social-prescribing Government Office for Science. (2008). Foresight mental capital and wellbeing project: Final project report . London: Government Office for Science. Retrieved from https://www.gov.uk/government/collections/mental-capital-and-wellbeing Jackson, K., Hamilton, S., Jones, S., and Barr, S. S. (2019). Patient reported experiences of using community rehabilitation and/or support services whilst living with a long-term neurological condition: a qualitative systematic review and meta-aggregation, Disability and Rehabilitation , 41:23, 2731-2749, DOI: 10.1080/09638288.2018.1473508 Ng, L., Talman, P., & Khan, F. (2011). 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Mindfulness-based interventions for mental wellbeing among people with multiple sclerosis: a systematic review and meta-analysis of randomised controlled trials. J Neurol Neurosurg Psychiatry, 90 , 1051–1058. doi:10.1136/jnnp-2018-320165 Spitzer, E. & Pakenham, K. I. (2018) Evaluation of a brief community-based mindfulness intervention for people with multiple sclerosis: A pilot study. Clinical Psychologist . 22, 182–191. doi:10.1111/cp.12108 , E, and Chan, R.,R. (2019). Mindfulness-Based Versus Health Promotion Group Therapy After Traumatic Brain Injury. J Psychosoc Nurs Ment Health Serv , 57(1), 26‐33. doi:10.3928/02793695-20180924-03 Smith-Carrier, T. A., Be´res, L., Johnson, K., Blake, C., & Howard, J. (2019) Digging into the experiences of therapeutic gardening for people with dementia: An interpretative phenomenological analysis. Dementia , 0(0) 1–18. DOI: 10.1177/1471301219869121 Hall, J., Mitchell, G., Webber, C., & Johnson, K. (2018). Effect of horticultural therapy on wellbeing among dementia day care programme participants: A mixed-methods study (Innovative Practice). Dementia , 17(5), 611–620. DOI: 10.1177/1471301216643847 Gonzalez, M. T., & Kirkevold, M. (2014). Benefits of sensory garden and horticultural activities in dementia care: A modified scoping review. Journal of Clinical Nursing , 23(19-20), 2698-2715. doi:10.1111/jocn.12388 Olsson, A., Lampic, C., Skovdahl, K., & Engström, M. (2013). Persons with early-stage dementia reflect on being outdoors: A repeated interview study. Aging and Mental Health , 17(7), 793-800. doi:10.1080/13607863.2013.801065 Windle, G., Joling, K. J., Howson-Griffiths, T., Woods, B., Jones, C. H., van de Ven, P., Newman. A., & Parkinson, C. (2018). The impact of a visual arts program on quality of life, communication, and wellbeing of people living with dementia: A mixed-methods longitudinal investigation. International Psychogeriatrics , 30(3), 409-423. doi:10.1017/S1041610217002162 Van der Steen J. T., Smaling H. J. A., van der Wouden J. C., Bruinsma M. S., Scholten R. J. P. M., Vink A. C. (2018). Music-based therapeutic interventions for people with dementia. Coch. Database Syst. Rev. 5:CD003477. 10.1002/14651858.CD003477.pub4 Evans, S. C., Garabedian, C., & Bray, J. (2017). “Now he sings”. The My Musical Memories Reminiscence Programme: Personalised Interactive Reminiscence Sessions for People Living with Dementia. Dementia , 0(0), 1–18. Husk, K., Blockley, K., Lovell, R., Bethel, A., Lang, I., Byng, R., & Garside, R. (2019). What approaches to social prescribing work, for whom, and in what circumstances? A realist review. Health Soc Care Community , 28: 309– 324. doi:10.1111/hsc.12839 Wildman, J. M., Moffatt, S., Penn, L., O'Brien, N., Steer, M. & Hill, C. (2019) Link workers’ perspectives on factors enabling and preventing client engagement with social prescribing. Health Soc Care Community , 27:991–998. https://doi.org/10.1111/hsc.12716 Holding, E., Thompson, J., Foster, A. & Haywood, A. (2020). Connecting communities: A qualitative investigation of the challenges in delivering a national social prescribing service to reduce loneliness. Health Soc Care Community . 0(0), 1–9. doi:10.1111/hsc.12976 Skivington, K., Smith, M., Chng, N., R., Mackenzie, M., Wyke, S., & Mercer, S. W. (2018). Delivering a primary care-based social prescribing initiative: A qualitative study of the benefits and challenges. British Journal of General Practice , 68 (672), 487-494. DOI: https://doi.org/10.3399/bjgp18X696617 Giebel, C., Lord, K., Cooper, C., Shenton, J., Cannon, J., Pulford, D., Shaw, L., Gaughan, A., Tetlow, H., Butchard, S., Limbert, S., Callaghan, S., Whittington, R., Rogers, C., Komuravelli, A., Rajagopal, M., Eley, R., Watkins, C., Downs, M., Reilly, S., Ward, K., Corcoran, R., Bennett, K., & Gabbay, M. (2020). A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers. International Journal of Geriatric Psychiatry , 393-402, doi.org/10.1002/gps.5434 Braun, V. & Clarke, C. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology , 3(2), 77-101. Bickerdike, L., Booth, A., Wilson, P, M., Farley, K., & Wright, K. (2017). Social prescribing: less rhetoric and more reality. A systematic review of the evidence. BMJ Open , 7:e013384. doi:10.1136/bmjopen-2016-013384 Bertotti, M., Frostick, C., Hutt, P., Sohanpal, R. & Carnes, D. (2018). A realist evaluation of social prescribing: an exploration into the context and mechanisms underpinning a pathway linking primary care with the voluntary sector. Primary Health Care Research & Development . 19: 232–245. doi:10.1017/S1463423617000706 Blank, A.A., Harries, P. & Reynolds, F. (2015) ‘Without Occupation You Don't Exist’: Occupational Engagement and Mental Illness, Journal of Occupational Science , 22:2, 197-209, DOI: 10.1080/14427591.2014.882250 Salas, C. E., Casassus, M., Rowlands, L., Pimm, S. & Flanagan, D. A. J. (2016). “Relating through sameness”: a qualitative study of friendship and social isolation in chronic traumatic brain injury. Neuropsychological Rehabilitation , DOI:10.1080/09602011.2016.1247730 Kane, M. and Cook, L. (2013). Dementia 2013: The hidden voice of loneliness . London: Alzheimer’s Society. Jacoby, A., Snape. D. & Baker, G. A. (2005). Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol , 4: 171–78 Mental Health Foundation. (2012). Developing Peer Support for Long Term Conditions: Final Report . Edinburgh: Mental Health Foundation Siette, J., Cassidy, M, & Priebe, S. (2017). Effectiveness of befriending interventions: a systematic review and meta-analysis. BMJ Open . 7:e014304. doi:10.1136/bmjopen-2016-014304 Relyea-Chew A., Hollingworth W., Chan L., Comstock B.A., Overstreet K.A., Jarvik J.G. (2009). Personal bankruptcy after traumatic brain or spinal cord injury: the role of medical debt. Arch Phys Med Rehabil 90(3):413-9 Andelic N, Hammergren N, Bautz-Holter E, Sveen U, et al. (2009). Functional outcome and health-related quality of life 10 years after moderate-to-severe traumatic brain injury. Acta Neurologica Scandinavica , 120(1):16-23. Ponsford J, Draper K, Schonberger M. 2008. Functional outcome 10 years after traumatic brain injury: its relationship with demo-graphic, injury severity, and cognitive and emotional status. J Int Neuropsychol Soc . 14:233–242 Van Velzen, J. M., C. A. van Bennekom, M. J. Edelaar, J. K. Sluiter and M. H. Frings-Dresen (2009). How many people return to work after acquired brain injury?: A systematic review. Brain Injury , 23(6): 473-88 Julian, L. J., Vella, L., Vollmer, T., Hadjimichael, O. & Mohr, D. C. (2008). Employment in multiple sclerosis: Exiting and re-entering the work force. J Neurol, 255:1354–1360 Mihaila, I., Handen, B.L., Christian, B.T. & Hartley, S.L. (2020) Leisure activity in middle-aged adults with Down syndrome: Initiators, social partners, settings and barriers. J Appl Res Intellect Disabil . 33(5):865-875. doi: 10.1111/jar.12706. Berg, J. & Ihlström. J. (2019). The Importance of Public Transport for Mobility and Everyday Activities among Rural Residents. Social Sciences , 8(2), 58. doi:10.3390/socsci8020058 Ryan, J. & Wretstrand, A. (2019). What’s mode got to do with it? Exploring the links between public transport and car access and opportunities for everyday activities among older people. Travel Behaviour and Society . 14:107-118. Jackson, K., Hamilton, S., Jones, S. & Barr, S. (2019). Patient reported experiences of using community rehabilitation and/or support services whilst living with a long-term neurological condition: a qualitative systematic review and meta-aggregation. Disabil Rehabil . 41(23), 2731-2749. doi: 10.1080/09638288.2018.1473508. Association of British Neurologists. (2020). Guidance on COVID-19 for people with neurological conditions, their doctors and carers. The ABN Executive in association with subspecialist Advisory Groups. Retrieved from https://www.neural.org.uk/wp-content/uploads/2020/03/25.3.20_ABN_Neurology_COVID-19_Guidance_v4.pdf Stroke Association. (2020). Stroke recoveries at risk: How the COVID-19 pandemic has affected stroke survivors’ lives and recoveries . Retrieved from https://www.stroke.org.uk/sites/default/files/campaigning/jn_2021-121.1_-_covid_report_final.pdf Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., & Gabbay, M. (2020). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. Aging & Mental Health , 1-8, DOI: 10.1080/13607863.2020.1822292 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 13 Nov, 2021 Read the published version in BMC Health Services Research → Version 1 posted Editorial decision: Major revision 28 Jun, 2021 Reviews received at journal 24 Jun, 2021 Reviews received at journal 24 Jun, 2021 Reviewers agreed at journal 10 Jun, 2021 Reviewers agreed at journal 10 May, 2021 Reviewers agreed at journal 08 May, 2021 Reviewers invited by journal 05 May, 2021 Editor assigned by journal 27 Apr, 2021 Editor invited by journal 23 Apr, 2021 Submission checks completed at journal 23 Apr, 2021 First submitted to journal 08 Apr, 2021 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-403346","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":23010816,"identity":"cf3509d7-b490-4e0f-9f91-0624ea5c14e5","order_by":0,"name":"Suzanne Simpson","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABB0lEQVRIiWNgGAWjYFADZgjFw8/ewEaaFhnJngMQLTzEWmZjcCMBvxb5GekPPxfusGGQb+dOe/ij4g4Pw823xx7+YLgjZ49DC9DMZOmZZ9IYDA7zbjfmOfOMh3F2XroxD8MzY1y2GEgkHJDmbTvMYMDMu02ase0wD7N0jpk0A8PhxB6cDkts/s3b9p9Bvpl3m+RPoBY2yTNmkj8YDtfj0sJwI5kNaMsBoLG82ySA1vHwSPCYSfAwHE7A6bAzz9iseduSeaB+OQzUAXQYkGvYcwCHw9rTH9/mbbOTk+8/uw0YYoft7Y+DHFZxWJ69AZfLIADkCuRIN8CvHAaITSejYBSMglEw0gAAHkRQMZbkbm0AAAAASUVORK5CYII=","orcid":"","institution":"The Walton Centre NHS Foundation Trust","correspondingAuthor":true,"prefix":"","firstName":"Suzanne","middleName":"","lastName":"Simpson","suffix":""},{"id":23010817,"identity":"93f27344-1e84-40b4-b6c9-c08605c88693","order_by":1,"name":"Moira Furlong","email":"","orcid":"","institution":"NIHR ARC NWC","correspondingAuthor":false,"prefix":"","firstName":"Moira","middleName":"","lastName":"Furlong","suffix":""},{"id":23010818,"identity":"136e99c5-a91e-4cfe-804f-840892ad567a","order_by":2,"name":"Clarissa Giebel","email":"","orcid":"","institution":"University of Liverpool","correspondingAuthor":false,"prefix":"","firstName":"Clarissa","middleName":"","lastName":"Giebel","suffix":""}],"badges":[],"createdAt":"2021-04-08 16:29:06","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-403346/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-403346/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12913-021-07213-6","type":"published","date":"2021-11-13T12:55:24+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":15506507,"identity":"fdb55105-cfdb-4c91-9f6b-0471d0d3691e","added_by":"auto","created_at":"2021-11-13 12:55:30","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":340035,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-403346/v1/2b23e113-5cff-486f-9834-2187cb6c89be.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eExploring the Enablers and Barriers to Social Prescribing for People Living With Long-Term Neurological Conditions: A Focus Group Investigation\u003c/p\u003e","fulltext":[{"header":"Introduction","content":" \u003cp\u003ePoor mental health is considered to carry an economic and social cost of \u0026pound;105\u0026nbsp;billion a year in England (PHE, 2018). This includes indirect costs of unemployment, as well as direct costs relating to health and care provision and the individual costs of reduced quality of life (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). More than 4\u0026nbsp;million people in England with a long-term physical health condition have mental health problems, and many experience significantly poorer health outcomes and reduced quality of life as a result (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThere are an estimated 14.7\u0026nbsp;million neurological cases in England, equating to at least 1 in 6 people living with one or more neurological condition (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). A Long-Term Neurological Condition (LTNC) results from injury, damage to, or disease of the nervous system (brain, spinal cord, peripheral or autonomic nervous system) (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Neurological conditions make up 20% of all long-term conditions and include a wide range of illnesses (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). In 2018 the Neurological Alliance GP survey revealed that 19% of patients living with a neurological condition had had an unplanned admission to hospital in a period of 12 months, which is twice the rate for all people with a long-term condition (9.8%) (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). People living with neurological conditions have the lowest health related quality of life of any long-term condition and deaths are 35% more likely to be premature (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Data produced by NHS RightCare suggests there is a substantial financial savings opportunity in relation to reducing emergency admissions and bed days for people living with neurological conditions (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eResearch into quality of life in these patient groups, such as the Trajectories of Outcome in Neurological Condition (TONiC), has found that patients emphasise the importance of psychological support and wellbeing in helping them manage their condition (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). The Neurological Alliance found that 53% (n\u0026thinsp;=\u0026thinsp;3,459) of the neurology patients they surveyed reported living with at least one other co-morbid condition (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Mental health conditions, including anxiety and depression, were among the most frequently reported. For some, a mental health condition can be a clinical symptom of their neurological condition. For others, a mental health condition can be part of coming to terms with diagnosis, the challenges of living with a neurological condition such as maintaining or finding employment, or medication side-effects.\u003c/p\u003e \u003cp\u003eSocial prescribing is a means of providing practical support and improving the psychological wellbeing of the population (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Examples of social prescribing activities include accessing educational courses, volunteering, attending social clubs, joining in with hobby clubs, dance or art classes (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Other forms of support may include accessing debt or housing advice or connecting an individual to employment support services (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Primary Care Networks have been given funding to roll out social prescribing with money allocated to recruit link workers (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). The NHS England 10 High Impact Actions which outline plans for general practice hopes social prescribing will reduce GP workload and increase capacity (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). The NHS Long Term Plan outlines plans to develop guidelines for how to promote health and wellbeing within communities, as well supporting the design of local plans that have a focus on prevention and wellbeing (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe majority of published research on activities that improve mental wellbeing have focused predominately on the general population or people living with long-term conditions (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). The Foresight project (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) outlined five actions to improve wellbeing, including connecting with other people; engaging in physical activities; being aware of the world around us, often referred to as mindfulness; trying something new or rediscovering an old interest; and doing something nice for a friend/stranger. The report also outlined the impact of external stressors such as debt and poor housing on mental health.\u003c/p\u003e \u003cp\u003eThere is limited research looking at the use of activities to improve wellbeing in people living with LTNC. Research has shown that people living with LTNCs value opportunities for peer support and social interaction (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Studies have explored the benefits of peer support groups for people living with motor neurone disease (plwMND) and found that that peer support groups were beneficial for some, but not all (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Simpson et al. identified that the opportunity to engage in a variety of community-based activities was desirable for plwMND and provided purpose (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). The use of community-based exercise groups has been found to improve the wellbeing of people living with stroke and their family carers (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Similarly, Yoga (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) and dancing (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) have been shown to improve wellbeing in addition to physical health for people living with Parkinson\u0026rsquo;s Disease. The use of mindfulness by people living with Multiple Sclerosis (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e) and Traumatic Brain Injury (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e) has demonstrated a positive impact on wellbeing. Activities such as gardening (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e), walking (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e), creative tasks (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e) and music (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e) have been the most widely researched for use with people living with dementia with evidence supporting their use for improving quality of life and wellbeing.\u003c/p\u003e \u003cp\u003eThe barriers and enablers to implementing social prescribing for long-term conditions such as diabetes, cardiac and respiratory conditions have seen growing interest. Husk et al. found that patient motivation, self-efficacy and a belief in the relevance of the activity impacted on enrolment to social prescribing programmes (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). Cost, transport, venue and timing of the activity impacted on client engagement. Reminder phone calls, written information, introduction sessions or attendance with a \u0026lsquo;buddy\u0026rsquo; supported client engagement. Adherence was believed to need trained staff exhibiting good leadership, an activity fostering interpersonal relationship, trust, supportive environments, individuals perceived change in condition and absence of negative effects. Wildman et al. explored link workers perceptions of the enablers and barriers to client engagement. Link workers felt they lacked the capacity and/or expertise to offer clients with complex needs the high-intensity and the specialist support they needed (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e). Training focused on the wider determinants of health, behaviour change, mental health issues as well as training on specific long term conditions was seen to be an enabler. These findings were recently echoed by Holding et al. who found that link workers reported difficulty supporting people living with severe mental health or physical difficulties and identified further barriers related to local infrastructure (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). Cuts to community organisations funding and the benefits system are believed to be significant barriers to implementing and sustaining social prescribing services (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e). There are no studies examining the barriers and enablers to implementing and engaging with social prescribing from the perspective of people living with LTNCs.\u003c/p\u003e "},{"header":"Methods","content":"\u003cdiv\u003e\n\u003ch2\u003eAim\u003c/h2\u003e\n\u003cp\u003eThe aim of this study was to understand the experiences of people living with LTNC in engaging with social prescribing services or programmes and the perceived enablers and barriers to participation. Whilst the COVID-19 pandemic has halted nearly all face-to-face social support services, including for those living with dementia (42), it is important to understand the extent and benefits of social prescribing in a pre- and hopefully soon post-pandemic world. By establishing their understanding, their needs and suggestions for activities to be provided as part of a social prescribing initiative, services can improve adaptation and provide more targeted support for people living with LTNCs.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv\u003e\n\u003ch2\u003eParticipants and Recruitment\u003c/h2\u003e\n\u003cp\u003eConvenience sampling was used to recruit patients during the monthly coffee morning at a neurological support charity. Various LTNC support groups attend the coffee morning and were asked to cascade information about the project through their respective groups. People with a diagnosed LTNC and family carers of people with a LTNC (18 years or older) were eligible to participate in the focus groups. Information on how to contact the co-investigator was provided in the patient information sheet, which was given to anyone who expressed an interest in the study. The project lead was contacted by potential participants and invited to a focus group. Participants were assessed to ensure they had capacity to participate and provided written informed consent prior to participation.\u003c/p\u003e\n\u003cp\u003eThe study received ethical approval from the University of Liverpool [ID: 5607] prior to study commencement.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv\u003e\n\u003ch2\u003eProcedure\u003c/h2\u003e\n\u003cp\u003eFocus groups consisted of a maximum of five participants, and consideration was made in relation to the needs of individuals signing up to each focus group and groups were kept to a maximum of five participants to enable full participation. The co-investigator conducted the focus groups at a local neurological support charity. Before the focus groups commenced, the co-investigator assessed the mental capacity of all the people with LTNC and written informed consent was taken. Anyone deemed to lack capacity was excluded from the study. The focus groups lasted no longer than 90 minutes and were audio-recorded. All audio-recordings were subsequently transcribed and anonymised.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv\u003e\n\u003ch2\u003eData collection\u003c/h2\u003e\n\u003cp\u003eWritten informed consent was gained prior to participation. Focus groups were carried out at a local neurological support charity. Focus groups were audio-recorded and lasted between 30 and 90 minutes.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv\u003e\n\u003ch2\u003eData analysis\u003c/h2\u003e\n\u003cp\u003eFocus group data were analysed using thematic analysis by CG and SS, both trained in conducting and analysing qualitative research. Thematic analysis is a method of exploring, analysing and reporting patterns within themes and identified based on prevalence and/or keyness (43). Each transcript was analysed by two research team members (CG, SS) and common themes highlighted amongst the participants responses. Identified codes were discussed jointly and themes agreed. Recruitment did not allow confirmation that saturation had been reached.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch2\u003eFindings\u003c/h2\u003e\n\u003cp\u003eA total of four focus groups (minimum 4 participants) were carried out with a total of 17 participants, 12 female and 5 male. Participants represented the views of people living with a variety of neurological conditions, this included multiple sclerosis (2), Fragile X Syndrome (1), epilepsy (4), traumatic brain injury (1), essential tremor (2), ataxia (2) and subarachnoid haemorrhage (3). Two participants were family carers and supported people living with epilepsy (1) and motor neurone disease (1).\u003c/p\u003e\n\u003cp\u003eAcross the four focus groups five themes were identified: (1) Lack of knowledge; (2) Service provision difficulties; (3) Benefits of social prescribing activities; (4) Physical barriers and (5) Psychological barriers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 1: Lack of knowledge\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe majority of participants had not heard of the term social prescribing. Those who had had been made aware of it by the charity where the focus groups took place or had seen information in the media. Reference was made to the term social prescribing and its link to a medical model of care and the potential difficulties the term would introduce when searching for information.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026rsquo;t think I\u0026rsquo;d necessarily heard the term but I know what that means so I\u0026rsquo;d seen stuff about people gardening and people being outdoors so I presumed it was all interlinked in to that side of things.\u0026rdquo;\u003c/em\u003eFocus Group 1 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I have heard it in the media and the papers and actually I think there was something on BBC news actually all about it and I might not be right but I think it is all about coming up with something that you can do to aid your condition or your, your recovery after what might\u0026hellip; all of us have some sort of neurological condition so it is about that.\u0026rdquo;\u003c/em\u003eFocus Group 4 Participant\u003c/p\u003e\n\u003cp\u003eNone of the participants had knowingly accessed a social prescribing service. For the few who had accessed activities or groups, the trigger was a passing comment made by a health professional or was the outcome of their own motivation to participate. Participants highlighted the need for education of health care professionals about social prescribing so that they could consistently signpost or refer people living with LTNCs.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;because it was just like a two-minute thing my consultant recommended coming here because there was no more that he could do, because he was so busy it was just like go there for help with practical support, I hadn\u0026rsquo;t even thought of it but I was told here.\u0026rdquo;\u003c/em\u003eFocus Group 2 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think also it is getting GPs on board as well because if they do, GPs are obviously snowed under aren\u0026rsquo;t they?\u0026rdquo;\u003c/em\u003eFocus Group 4 Participant\u003c/p\u003e\n\u003cp\u003eParticipants felt link workers would need to have knowledge and understanding of LTNCs. There was recognition amongst the groups that this would be a challenge given the number of neurological conditions and the vast array of difficulties faced by people living with LTNCs. Participants made reference to link workers needing good communication and social skills. They felt given the challenge link workers would face, they would need to feel valued and have access to training and support.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think something like this, as like a booklet for people potentially going in as link workers would help them. Like the different diagnosis, what to expect if your like\u0026hellip;\u0026rdquo;\u003c/em\u003eFocus Group 2 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;You need people who are like no matter who the person is or what\u0026rsquo;s in whether they are autistic or epileptic or I don\u0026rsquo;t know, no matter what the problem is they\u0026rsquo;ve got to be able to actually communicate with that person which would probably be difficult to find\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 2: Service provision difficulties\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe need for knowledge from link workers extended to services and activity providers. In order to achieve this understanding, emphasis was placed on the need to involve people living with LTNCs in the development and delivery of services. Participants recognised the cost of providing services and that activities needed to be adequately funded.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I mean the big thing is funding isn\u0026rsquo;t it, I mean, the NHS is struggling and we, you know social prescribing requires money to have a link worker and valuing the fact that this link worker is important. You know you can go to your GP and go and see the specialist nurse and whatever but they don\u0026rsquo;t fully understand what your condition is and there are so many different conditions so funding is a big thing\u0026rdquo;\u003c/em\u003eFocus Group 4 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026rsquo;s all more workers thought isn\u0026rsquo;t it? You know it\u0026rsquo;s not an easy fix you know. One to one is all more work and it\u0026rsquo;s all more expense if it\u0026rsquo;s being paid for by the NHS.\u0026rdquo;\u003c/em\u003eFocus Group 2 Participant\u003c/p\u003e\n\u003cp\u003eRecognition of individual differences despite the same diagnosis was important with participants emphasising that one size does not fit all and that activities would need to be varied. Ensuring services got to know the person living with a LTNC and focused on their abilities rather than their disabilities was a priority.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think with social prescribing for neurological conditions there has to be realisation that not one size fits all because of the variety of the conditions you can\u0026rsquo;t just say you\u0026rsquo;ve got MS, you\u0026rsquo;ve got epilepsy whatever maybe I\u0026rsquo;ll send you off to a gardening group. So there has got to be a real thought process behind what\u0026rsquo;s being prescribed for people.\u0026rdquo;\u003c/em\u003eFocus Group 1 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Maybe it will put a lot of emphasis on the things that you can\u0026rsquo;t do anymore, and even if you can\u0026rsquo;t do things anymore, they don\u0026rsquo;t put the emphasis on all of the stuff that you actually still can do and focus on that instead.\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 3: Benefits of social prescribing activities\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants discussed the difficulties faced by people living with LTNCs. Social isolation was seen as a significant problem in all focus groups. Participants expressed feelings of loss, difficulties maintaining relationships, managing families concerns and the impact of not working.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;The isolation is the worst part because you go from, well depending on what issue you have, I have gone from what I had which was a very pressurised work environment, kind of working at the top of what I could do in a very busy I suppose in and I know this sounds stupid, but being quite important in terms of what I did to everything has gone.\u0026rdquo;\u003c/em\u003eFocus Group 1 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think getting a diagnosis is isolating in itself because you can still have your friends and your family and everyone that you used to have still around you but it\u0026rsquo;s something that has only happened to you. So things to help people feel less isolated\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003cp\u003eSocial prescribing was considered an opportunity to reduce social isolation for people living with LTNCs. Activities provided the opportunity to socialise and connect with others. Attending activities could provide a reason to leave the house and participation in activities provided a sense of purpose. New activities offered the opportunity to learn a new skill and for some this was felt to act as a form of rehabilitation promoting further recovery. Others felt activities provided important mental stimulation.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I do a stitch club because my brain has not been working properly and I have been like well if my brain needs to work out new ways to work let\u0026rsquo;s do something that your brain has never done before, so I stitch and actually from stitching that got me involved in other bits and bobs so it\u0026rsquo;s just been super cool\u0026rdquo;\u003c/em\u003eFocus Group 1 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think volunteering gives you a real sense of purpose. It\u0026rsquo;s really important. Obviously it\u0026rsquo;s easier to access for people with neurological conditions, looking for a job might be difficult, but getting in to volunteering can be easier\u0026rdquo;\u003c/em\u003eFocus Group 2 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026rsquo;t want to sit at home and not doing anything I don\u0026rsquo;t think anyone wants that\u0026rdquo;\u003c/em\u003eFocus Group 4 Participant\u003c/p\u003e\n\u003cp\u003eParticipants made particular reference to the benefits of volunteering and peer support. Opportunities to volunteer were key to providing people with feelings of purpose and could provide an alternative to paid employment. Meeting with people with the same or similar conditions was important for many of the participants. Attendees could choose to talk about their conditions and gain support, alternatively they could talk about anything other than their condition, but knew they were with people who understood.\u003c/p\u003e\n\u003cdiv\u003e\n\u003cdiv\u003eThat\u0026rsquo;s actually probably the best thing about me being in an environment with people who have got head injuries is that nobody talks to me about it.\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv\u003e\n\u003ch2\u003eFocus Group 1 Participant\u003c/h2\u003e\n\u003cdiv\u003e\n\u003ch2\u003eTheme 4: Physical barriers\u003c/h2\u003e\n\u003cp\u003eParticipants raised a number of concerns regarding accessing social prescribing activities. The availability of activities and the accessibility of buildings was recognised to be a physical barrier to participation. Timing of activities was also discussed in relation to how medications or symptoms of a neurological condition can impact on a person\u0026rsquo;s ability to attend activities at certain times particularly early in the morning. Participants considered the impact finances had on the ability to participate in activities and highlighted problems negotiating the benefits system.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Cause like you were saying before, if your benefit that you\u0026rsquo;re entitled to is stopped your income is going to go down so of course money to access anywhere or there being places that are local for you to go to. It\u0026rsquo;s more expensive to get to if they\u0026rsquo;re not local anymore\u0026rdquo;\u003c/em\u003eFocus Group 2 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, and even the time of day perhaps as well. I know speaking perhaps for XXX is that she is always better, livelier because of medications in the morning, and we\u0026rsquo;ve spoken to other people and by the afternoon because of the medications they are on they\u0026rsquo;re weary and need a rest and tend not to go out in the evenings as well for various reasons, so mornings tend to be, certainly for us and others that we know, are better.\u0026rdquo;\u003c/em\u003eFocus Group 1 Participant\u003c/p\u003e\n\u003cp\u003eDiagnosis with a neurological condition can result in temporary or permanent restrictions on driving. All the groups talked about the impact of being unable to drive and issues relating to accessing public or private hire transport.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;m sort of the isolated sort of way because I\u0026rsquo;m unable to drive due to my condition so when my mum who is also sitting next to me, is out then I can\u0026rsquo;t drive so I\u0026rsquo;m sort of isolated so I\u0026rsquo;ve just sort of sat there and there is no outreach like kind of groups for me and unless I\u0026rsquo;m able to get taxis to places\u0026rdquo;\u003c/em\u003eFocus Group 1 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;You go out and you might have a seizure or the train or on the train platform or on a bus and people won\u0026rsquo;t help you or in a taxi and you might get chucked out the taxi just anywhere or the taxi driver\u0026rsquo;s going to act real funny about it so you end up sort of thinking \u0026lsquo;oh, you know, it\u0026rsquo;s just sensible if I stay at home\u0026rsquo;\u0026hellip;and then you do stay at home and then you never leave\u0026hellip;and then you just get comfortable staying in\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv\u003e\n\u003ch2\u003eTheme 5: Psychological barriers\u003c/h2\u003e\n\u003cp\u003eAll groups highlighted a number of psychological barriers. Reduced confidence and anxiety was regarded as a barrier to people with LTNCs visiting new places or joining groups and activities. Concerns related to physical symptoms, communication and duration of increasing isolation was discussed. Families\u0026rsquo; worries about the person living with a LTNC and needing to manage their concerns was explored as another potential barrier.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;d love to get out and about a bit more but the fear of going out and the fear of tripping that\u0026rsquo;s what makes me think about, I know I shouldn\u0026rsquo;t because I\u0026rsquo;m over reacting or you may think so but me, I\u0026rsquo;m not. I panic, I am a panicker.\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think one of the biggest issues is the actual carer or family that are trying to maybe cocoon the person with the neurological condition and making assumptions like \u0026lsquo;well I don\u0026rsquo;t think they can do that\u0026rsquo; because they are trying to be overprotective so I think it\u0026rsquo;s the link worker tried also needs to work with the family to ensure the family are and the carers are comfortable because once they feel that comfort then they will work with the link worker\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003cp\u003eStigma and lack of acceptance by others was seen as a significant barrier for people living with LTNCs. The general public\u0026rsquo;s awareness of LTNCs was felt to be poor in particular their understanding of hidden or invisible disabilities. There appeared to be a strong desire to be accepted and treated like everyone else.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Well the main worry is if you haven\u0026rsquo;t gone so long without a seizure and you\u0026rsquo;re frightened of people\u0026rsquo;s reactions... Cause I\u0026rsquo;ve been stopped by the police for being drunk and I don\u0026rsquo;t even drink\u0026hellip;because they don\u0026rsquo;t understand the condition, you know there\u0026rsquo;s people with different disabilities they don\u0026rsquo;t understand. Because I always say role reversal, you\u0026rsquo;ve got to have been through it to understand it\u0026rdquo;\u003c/em\u003eFocus Group 3 Participant\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think with anybody who has had a neurological condition physically you look fine, it is what\u0026rsquo;s going on in the inside and people don\u0026rsquo;t, don\u0026rsquo;t know and that is due to lack of knowledge, lack of education.\u0026rdquo;\u003c/em\u003eFocus Group 4 Participant\u003c/p\u003e\n\u003cp\u003eParticipants felt access to support to attend groups would be important and they felt consideration was needed as to how long this support was provided. Participants felt people living with LTNCs may require a more prolonged period of support to be able to continue participation independently.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think sometimes with neurological conditions the person needs to be there to support them a little bit longer than maybe someone who doesn\u0026rsquo;t have a neurological condition\u0026rdquo;\u003c/em\u003eFocus Group 4 Participant\u003c/p\u003e\n\u003c/div\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":" \u003cp\u003eThese are amongst the first findings to explore the potential benefits and perceived barriers to accessing social prescribing for people living with LTNCs. Participants highlighted that there was very little knowledge of social prescribing amongst people living with LTNCs. Those who had accessed social prescribing activities had done so by chance and as a result of their own proactiveness. The lack of signposting by health professionals was apparent and there was an agreed need for health professionals to be educated about social prescribing. Bickerdike et al. reported that social prescribing was unfamiliar to many GPs and in order to engage participants they required a good clear explanation (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). This sentiment is echoed by Bertotti et al. who found that \u0026lsquo;buy in\u0026rsquo; from GPs was essential with adequate time allocated during consultations to explain social prescribing (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe benefits of participation in activities was recognised by all the focus groups. Participation was seen to provide meaning and purpose. A strong emphasis was placed on the social benefits of participation. Meaningful activities are known to offer opportunities for happiness, satisfaction and connection with others (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). Social isolation and loneliness is experienced by many people living with a neurological condition. It is well documented that, in the long-term, individuals with traumatic brain injury (TBI) are less active in social and leisure activities and they experience a drastic decrease in the number of friends and the frequency of social contact (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e). The same can be said for those people living with dementia especially if living alone (\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStigma was found to impact on social identity leading to loss of confidence and anxiety. Research into stigma particularly the impact of living with epilepsy has shown that stigma can result in a perceived reduction in social value and poor quality of life (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e). Peer support was an important element of social participation as this helped to provide a sense of acceptance and belonging. Research suggests peer support helps people to manage their long term conditions and should be valued (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). Having access to support to attend activities was important to aid confidence. Siette et al suggest that befriending interventions can potentially influence mental health outcomes and personal relationships for people living with mental and physical health problems (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eSupport to return to work or to find volunteering opportunities was a desirable area for link worker support for many of the participants. People with LTNCs who fail to return to work after injury or onset, or who are encouraged to relinquish work prematurely may be financially disadvantaged, have a poorer quality of life and suffer adverse health outcomes such as anxiety and depression (\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e, \u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). For example, returning to work or education is a major goal for many people who sustain a TBI but only about 41% are in work at one and two years post injury (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e). Studies of employment and work loss in Multiple Sclerosis cite unemployment rates ranging from 24\u0026ndash;80% and unemployment has been associated with disease progression and an increase in symptoms (\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e). These consequences result in increased consumption of health resources including GP services and consultant contacts.\u003c/p\u003e \u003cp\u003e Participants discussed the physical barriers to accessing social prescribing activities. Transport was seen as a significant barrier to participation. Many studies have highlighted that transportation is often a barrier to participation in community based activities (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e, \u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e, \u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e). Without changes to local infrastructure transport will continue to be a barrier for many people not just people living with LTNCs.\u003c/p\u003e \u003cp\u003eParticipants emphasised the need for knowledgeable link workers and services given the complexity of LTNCs, the challenges faced by many living with a neurological condition and the importance of individuality. A recent systematic review (\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e) examined the experiences of people living with LTNCs engagement with community rehabilitation and support services. They found that outcomes of self-efficacy and self-management were important for people with stable and progressive LTNCs. Interactions with individual professionals were found to influence engagement and desired outcomes. As a result, training should develop the advanced communication skills and behaviours required to facilitate self-efficacy and self-management.\u003c/p\u003e \u003cp\u003eThe findings of the study are particularly relevant given the COVID-19 pandemic and the shielding restrictions placed on many plwLTNCs due to their diagnoses and comorbidities (\u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e). Although carried out before the national lockdown the study highlights the array of barriers already faced by plwLTNCs, but many will now face new barriers such as deteriorations in their mental health. Many stroke survivors have experienced increased social isolation and changes to their mental wellbeing as a result of being unable to leave their homes and as a consequence of restrictions placed on services such as community rehabilitation (\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e). As restrictions lift many will continue to experience new barriers to participation.\u003c/p\u003e \u003cp\u003eThis study was subject to some limitations. It is recognised that the study included a small number of plwLTNC and participants may not be representative of all LTNCs. As a result of convenience sampling, our study included people with multiple sclerosis, Fragile X Syndrome, epilepsy, traumatic brain injury, essential tremor, ataxia and subarachnoid haemorrhage. The family carers supported people living with epilepsy and motor neurone disease. However, this is one of the very first studies exploring the extent and benefits of social prescribing in LTNCs, indicating steps for future research to build on, such as expanding the participant pool to incorporate a greater variation of LTNCs. The majority of participants were regular attendees at the charity where the focus groups were run and this may have influenced their responses. The study may not represent those plwLTNC who experience significant difficulty leaving the house and are in greater need of social prescribing than those people represented in this study. Future research should aim to reach out to those who are unable to leave their homes to establish if they experience the same or different barriers to social prescribing activities.\u003c/p\u003e "},{"header":"Conclusions","content":" \u003cp\u003eAs one of the very first studies exploring the extent and benefits of social prescribing in LTNCs, this study emphasised the need to consider the whole system and how social prescribing can be framed to meet the needs of plwLTNC. Future research should explore how best to enable participation by overcoming physical and psychological barriers and by identifying interventions that reduce the impact of psychological barriers such as stigma. A particular focus needs to be set on the impact of the COVID-19 pandemic on engaging with social prescribing, as this is likely to have thrown up further barriers in accessing general social support, as emerging evidence highlights for people with dementia and carers (\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e). Local infrastructure needs to evolve in order to reduce the physical barriers faced by plwLTNC in particular transport. Without major changes, plwLTNC will endure further inequalities relating to the delivery and accessibility of social prescribing.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study received ethical approval from the University of Liverpool Central University Research Ethics Committee B [ID: 5607]. Participants provided written informed consent. All methods were carried out in accordance with relevant guidelines and regulations.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was funded using money awarded to SS from NHS R\u0026amp;D North West Health Education England and NIHR Bridging Scheme. CG is funded by NIHR ARC NWC.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAuthors' contributions\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSS and GC facilitated the focus groups and analysed the data. SS prepared the manuscript with feedback on drafts from GC and final comments by MF. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThank you to all the plwLTNCs and family carers who participated in this study. Thank you to The Brain Charity for advertising and hosting the focus groups. Thank you to The Walton Centre medical secretary\u0026rsquo;s Lisa Fletcher and Nicola Preston for transcribing the recordings. The author would like to dedicate this paper to her father Frank Rawlinson who passed away on the 12\u003csup\u003eth\u003c/sup\u003e December 2020 with Advanced Dementia.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003ePublic Health England. (2018). \u003cem\u003eWellbeing and mental health: Applying all our health.\u003c/em\u003e Retrieved from https://www.gov.uk/government/publications/wellbeing-in-mental-health-applying-all-our-health/wellbeing-in-mental-health-applying-all-our-health\u003c/li\u003e\n\u003cli\u003eNaylor, C., Parsonage, M., McDaid, D., Knapp, M., Fossey, M. \u0026amp; Galea, A. (2012). \u003cem\u003eLong-term conditions and mental health: the cost of co-morbidities\u003c/em\u003e. The King's Fund, London, UK. ISBN 9781857176339.\u003c/li\u003e\n\u003cli\u003eNeurological Alliance. (2019). \u003cem\u003eNeuro numbers 2019\u003c/em\u003e. Watford, UK: The Neurological Alliance. 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(2020) Leisure activity in middle-aged adults with Down syndrome: Initiators, social partners, settings and barriers. \u003cem\u003eJ Appl Res Intellect Disabil\u003c/em\u003e. 33(5):865-875. doi: 10.1111/jar.12706.\u003c/li\u003e\n\u003cli\u003eBerg, J. \u0026amp; Ihlstr\u0026ouml;m. J. (2019). The Importance of Public Transport for Mobility and Everyday Activities among Rural Residents. \u003cem\u003eSocial Sciences\u003c/em\u003e, 8(2), 58. doi:10.3390/socsci8020058\u003c/li\u003e\n\u003cli\u003eRyan, J. \u0026amp; Wretstrand, A. (2019). What\u0026rsquo;s mode got to do with it? Exploring the links between public transport and car access and opportunities for everyday activities among older people. \u003cem\u003eTravel Behaviour and Society\u003c/em\u003e. 14:107-118.\u003c/li\u003e\n\u003cli\u003eJackson, K., Hamilton, S., Jones, S. \u0026amp; Barr, S. (2019). Patient reported experiences of using community rehabilitation and/or support services whilst living with a long-term neurological condition: a qualitative systematic review and meta-aggregation. \u003cem\u003eDisabil Rehabil\u003c/em\u003e. 41(23), 2731-2749. doi: 10.1080/09638288.2018.1473508.\u003c/li\u003e\n\u003cli\u003eAssociation of British Neurologists. (2020). \u003cem\u003eGuidance on COVID-19 for people with neurological conditions, their doctors and carers. The ABN Executive in association with subspecialist Advisory Groups.\u003c/em\u003e Retrieved from https://www.neural.org.uk/wp-content/uploads/2020/03/25.3.20_ABN_Neurology_COVID-19_Guidance_v4.pdf\u003c/li\u003e\n\u003cli\u003eStroke Association. (2020). \u003cem\u003eStroke recoveries at risk: How the COVID-19 pandemic has affected stroke survivors\u0026rsquo; lives and recoveries\u003c/em\u003e. Retrieved from https://www.stroke.org.uk/sites/default/files/campaigning/jn_2021-121.1_-_covid_report_final.pdf\u003c/li\u003e\n\u003cli\u003eGiebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., \u0026amp; Gabbay, M. (2020). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. \u003cem\u003eAging \u0026amp; Mental Health\u003c/em\u003e, 1-8, DOI: 10.1080/13607863.2020.1822292\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"neurological conditions, social prescribing, enablers, barriers, link workers, wellbeing","lastPublishedDoi":"10.21203/rs.3.rs-403346/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-403346/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003ePeople living with Long Term Neurological Conditions (LTNCs) value peer support and social activities. Psychological support and wellbeing enables them to manage their condition. Social prescribing is a formal process of referring patients to a link worker to co-design a plan to improve their health and wellbeing. Intervention involves supporting participation in activities based within the individual\u0026rsquo;s local community. This study aimed to explore the barriers and enablers to accessing social prescribing for people living with LTNCs (plwLTNCs).\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA total of four focus groups were carried out with 17 participants, including different neurological conditions such as multiple sclerosis, Fragile X Syndrome, epilepsy, and traumatic brain injury. Two participants were family carers and supported people living with epilepsy and motor neurone disease. Findings were analysed using thematic analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFive themes were identified: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Lack of knowledge; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Service provision difficulties; (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Benefits of social prescribing activities; (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Physical barriers and (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) Psychological barriers. There was a lack of knowledge about social prescribing and what it actually was. Participants anticipated service provision difficulties relating to funding, link workers need for knowledge of LTNC\u0026rsquo;s and for activities to be varied and individualised. The potential benefits of social prescribing activities were recognised across the groups especially its potential to tackle loneliness and to offer plwLTNC\u0026rsquo;s purpose. Participants highlighted a number of physical barriers such as transport and accessibility; and psychological barriers such as anxiety and stigma.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eSocial prescribing aims to address the health inequalities of those living with long-term conditions, however currently it is likely to exclude plwLTNCs. Recommendations for future research are made.\u003c/p\u003e","manuscriptTitle":"Exploring the Enablers and Barriers to Social Prescribing for People Living With Long-Term Neurological Conditions: A Focus Group Investigation","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2021-04-26 15:52:04","doi":"10.21203/rs.3.rs-403346/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2021-06-28T06:30:08+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2021-06-24T20:34:12+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2021-06-24T07:10:16+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"1a7516a6-1638-43f1-923b-9befc50c3677","date":"2021-06-10T07:18:59+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"d2740747-8dfc-4f58-b087-224810861165","date":"2021-05-10T07:47:57+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"a1ca73ce-d1cc-4417-9112-712295414a85","date":"2021-05-08T14:33:44+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2021-05-05T12:57:20+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2021-04-27T08:03:21+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2021-04-23T22:07:41+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2021-04-23T22:01:14+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2021-04-08T16:18:19+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"8007e3f5-e1f2-41b4-ae7e-35ab2d7bc399","owner":[],"postedDate":"April 26th, 2021","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[{"id":3886391,"name":"Health Economics \u0026 Outcomes Research"},{"id":3886392,"name":"Health Policy"}],"tags":[],"updatedAt":"2021-11-13T12:55:24+00:00","versionOfRecord":{"articleIdentity":"rs-403346","link":"https://doi.org/10.1186/s12913-021-07213-6","journal":{"identity":"bmc-health-services-research","isVorOnly":false,"title":"BMC Health Services Research"},"publishedOn":"2021-11-13 12:55:24","publishedOnDateReadable":"November 13th, 2021"},"versionCreatedAt":"2021-04-26 15:52:04","video":"","vorDoi":"10.1186/s12913-021-07213-6","vorDoiUrl":"https://doi.org/10.1186/s12913-021-07213-6","workflowStages":[]},"version":"v1","identity":"rs-403346","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-403346","identity":"rs-403346","version":["v1"]},"buildId":"_2-kVJe1T_tPrBINL-cwx","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}