Exploring access to community neurorehabilitation for people with progressive neurological conditions: a qualitative study

Abstract

Purpose

Community neurorehabilitation enables people with progressive neurological conditions (PNCs) to manage their symptoms to live an active, fulfilling life; however, it is not accessible to all. This study explored the factors influencing access to community neurorehabilitation in Northern Ireland from the perspective of people with PNCs and their carers.

Methods

Eleven people living with a PNC and three carers took part in virtual focus groups. Data was thematically analysed using the framework method.

Results

Access to neurorehabilitation was described as a staged journey, driven by people with PNCs, and impacted by interactions with others. Four themes were identified: the person in the driving seat, describing the value of person-centred care and the need for proactivity; the traffic lights, depicting the role and influence of health care professionals (HCPs); the need for direction; and roadworks and roadblocks, identifying additional barriers to access. In addition, six fundamentals of good access were identified.

Conclusions

This study adds depth to our understanding of the complexity, and the roles and needs of people with PNCs and HCPs, in accessing community neurorehabilitation. Further research is needed to determine how best to empower people to access rehabilitation.

IMPLICATIONS FOR REHABILITATION

• Access to community neurorehabilitation is dependent on personal factors including patient activation level and health care professional knowledge.

• People need to be empowered to access rehabilitation services.

• A single point of contact for advice and triaging concerns related to progressive neurological conditions is desirable.

• There is a need to understand the experiences and needs of people with low levels of patient activation to ensure equitable access to community-based neurorehabilitation.

Keywords:

• Access
• community
• Northern Ireland
• progressive neurological conditions
• rehabilitation

Introduction

Rehabilitation is fundamental to reducing the experience of disability and maintaining the quality of life for people with progressive neurological conditions (PNCs) [1]. Neurological conditions are the leading cause of disability globally [2] and are estimated to affect 1 in 6 people in the UK [3], with people with neurological conditions reporting the poorest health related quality of life amongst all the long-term conditions [4].

Problems with physical functioning are common, including reduced mobility, balance and co-ordination [5–7]; fatigue [8]; bowel, bladder and sexual dysfunction [7,9]; and speech disturbance [10], along with cognitive impairment [11], emotionalism [12], and an increased lifetime risk of mental health problems [13]. These have the potential to affect all aspects of everyday life [14] including employment [15], self-care [16], family life [17,18], and increase the likelihood of social isolation and societal inequity [1]. Hallmarks of progressive neurological conditions (PNCs), such as Multiple Sclerosis (MS) and Parkinson’s, include inevitable functional decline and increasing dependence, which can take a fluctuating and unpredictable course [5,19], and may be associated with palliative care needs from diagnosis [20], with narrow prospect of recovery compared to sudden onset conditions.

Neurorehabilitation is one of the most cost-effective interventions in healthcare [21] and leads to improved functional outcomes and quality of life for people with PNCs [22–27]. The term encompasses interventions delivered by professionals with specific knowledge and experience in managing complex neurological conditions [28], which enable people to achieve their full potential in interaction with their environments [29]. Neurorehabilitation aims to empower people to manage their condition, maintain an active role in society, slow the decline of physical functioning, and lessen the impact on carers [1,30]. It is a lifelong process of dynamic and active change throughout the course of a disease: from early intervention, through prehabilitation/secondary prevention models, relapse management, to managing complex progressive disability and neuro-palliative care [31,32].

There is a strong drive for rehabilitation services to be available to people living at home [4,33–36]. At an individual level, community services are best placed to observe and understand a person’s rehabilitation needs in the context of their physical, social, and economic environment [1]. In addition, shifting rehabilitation services into the community can reduce overall healthcare costs, waiting list times and the need for hospital attendances [4,35,37,38]. The gold standard for community rehabilitation is an easily accessible, interdisciplinary, needs-led service, which provides person-centred, goal focused intervention, delivered by a co-ordinated workforce [4,28,35,38,39]. For people with PNCs, the team should include physiotherapy, occupational therapy, speech and language, and dietetics [38–42], and facilitate exercise, functional task practice, emotional support, education and information, and access to equipment [38].

Models of service delivery for neurorehabilitation for people living in the community vary throughout the UK [43], with several models identified including unidisciplinary intervention, multidisciplinary outpatient clinics, and interdisciplinary general and specialist neurorehabilitation teams [44]. People with sudden onset neurological conditions (e.g., stroke, spinal cord injury) are more likely to receive neurorehabilitation in the community than people with PNCs [45]. In Northern Ireland (NI), community multidisciplinary neurorehabilitation teams are well established for stroke [46] and brain injury [47], however, according to the British Society of Rehabilitation Medicine criteria [28], there are no community multidisciplinary neurorehabilitation teams for people with other neurological conditions, unlike other UK regions [34]. Regional specialist neurology clinics in NI tend to be based in Belfast, with ongoing neurorehabilitation intervention referred out to local Trusts. In the absence of co-ordinated multidisciplinary teams, neurorehabilitation is delivered by individual allied health professions (AHPs) with experience and expertise in working with people with PNCs. Surveys of people living in NI report that, despite the existence of AHPs providing neurorehabilitation interventions, people are not consistently being referred, with lower reported access and higher unmet need in comparison to other UK regions [16,48]. Furthermore, NI is the only devolved Government in the UK not to have published strategic plans for community or neurorehabilitation services [49–52].

Existing research describes limitations in access to community-based neurorehabilitation across Europe [17,53–56], with barriers including resource availability and capacity [57,58], eligibility criteria [53–55,59] and difficulties navigating the rehabilitation pathway [17,53–56]. No research has considered the experiences of people with PNCs as they attempt to navigate NI’s unique Health and Social Care landscape. Exploring the factors influencing access to HCPs providing neurorehabilitation interventions in NI, from the perspective of people with PNCs, is vital to inform innovations in both local service development and greater strategic direction. The objectives of this study were to establish what good access to community neurorehabilitation looks like, understand how rehabilitation needs are identified, identify the role of the person with a PNC and the referrer in navigating access to services, investigate the factors that determine access to rehabilitation and recommend priorities for service improvement.

Methods

A qualitative descriptive approach, as described by Sandelowski [60,61], was chosen to evoke pragmatic descriptions and a comprehensive summary of peoples’ experiences which, by staying close to the data, would be easily recognisable to participants, multiple researchers and observers. This enabled the research to remain centred on people living with PNCs, while meeting the aim of drawing conclusions that have direct implications for improving practice in the clinical setting, rather than increasing theoretical or conceptual understanding [62].

Data were collected through virtual focus groups. Focus groups allow discussion of a specific topic by people with similar characteristics, through the stimulation of participant thoughts and ideas in response to the contribution of others [62,63]. This interaction produces a deeper, more considered level of insight than would be possible outside of a group setting. A virtual approach reduced logistical barriers to participation and increased the geographical diversity of participants [64–66]. The study involved a lay co-researcher, recruited through the Multiple Sclerosis Society Research Network, who was involved in the design, data analysis, and final write-up of the study. Ethical approval was obtained from the Ulster University Nursing and Health Research Governance (FCNUR-21-071-A). This study has been reported according to the Standards for Reporting Qualitative Research (see supplementary material 1) [67].

Participants

People were eligible for inclusion in the study if they were living with (or caring for a person with) a PNC and had sought rehabilitation intervention, which did not involve an inpatient admission, through the National Health Service (NHS) in Northern Ireland within the last three years due to a deterioration in physical function related to a PNC. In addition, participants had to be over 18; fluent in English; physically and mentally able and willing to share their experiences in a virtual group setting; and have access to technology to enable them to participate. People were excluded if they did not have the capacity to consent, or their primary rehabilitation needs were best met by another specialism (e.g., fracture rehabilitation, mental health services). Given no community services for people with PNCs in Northern Ireland have “neurorehabilitation” in their name, and therefore it may not be a term people would be familiar with, we worded our criteria assuming “rehabilitation for a decline in function related to a PNC”, could be synonymous with neurorehabilitation, dependent on the experience of the HCP providing the intervention.

Participants were recruited using heterogeneous purposive sampling through three umbrella organisations: the NI Neurological Charities Alliance, The Neurological Alliance, and the NI Rare Disease Partnership. Fifteen member organisations shared recruitment adverts through their NI networks via email and social media, which included a link to a five-minute participant information video.

Recruitment

Twenty-one potential participants expressed their interest to the principal investigator via email and were emailed participant information, including mitigation of breaches of confidentiality and data protection associated with virtual focus groups; the use of electronic consent; and the contact numbers for a regional Neurological Care Advice Service. Four people decided not to proceed as participants. The remaining seventeen took part in telephone screening, all meeting the eligibility criteria. Informed consent was obtained from all participants and recorded electronically using DocuSign eSignature software (DocuSign, Inc., San Francisco, CA).

Recruitment was on a rolling basis with sequential group allocation. Once six people were recruited, a date and time for the group were agreed depending on the majority preference. If a participant was unable to attend a group, they were invited to the next. Fourteen people took part in three focus groups between January and May 2022 with five, three and six participants respectfully. Three consented participants withdrew before the group began, one citing time constraints; one had technical difficulties with their microphone and declined an offer to re-attend another session; and one cancelled then did not attend the second date offered.

Data collection

The Zoom video conferencing platform (Zoom Video Communications, Inc., San Jose, CA) was chosen due to its widespread familiarity. Joining instructions with the offer of a practice call were emailed to all participants one week before, with reminders sent the day before and on the day of the group. Each focus group lasted 90 min and was video and audio recorded. The principal investigator (SP) acted as facilitator for each group using a topic guide developed with the lay researcher (OW) (see supplementary material 2). Topics for exploration included experiences of being referred for neurorehabilitation, expectations and realities of encounters with HCPs when presenting with a neurorehabilitation need, and knowledge of local services.

One or two additional members of the research team were present for each group, acting as co-moderator, technical support and to record observations such as key interactions, non-verbal cues, and significant quotes. A debrief after each group highlighted topics from the discussion. All data was electronically stored in password-protected files, saved to a university-maintained shared space with access restricted to the research team.

Data analysis

The principal investigator (SP) transcribed recordings verbatim. Transcripts were analysed using the framework analysis method described by Ritchie et al. [68] Framework analysis is an approach suited to applied research answering contextual questions with specific preset objectives [68,69]. Its systematic approach allows the data analysis process to be more inclusive for lay researchers [70], making it suitable for this study.

In the familiarisation stage, SP, OW and MOH read the anonymised transcripts, listing general topics of interest recurrent across the data set and relevant to the objectives of the research. Researchers met to gain consensus on key topics, which were presented on individual post-it notes and re-arranged to group associated ideas together. These were sorted into a hierarchy of themes and subthemes to construct the initial thematic framework. Headings in the initial thematic framework were numbered to create a codebook, against which the transcripts were indexed paragraph by paragraph by three researchers, and recorded in a Microsoft Excel 2013 Workbook (Microsoft Corporation, Redmond, WA). Data was sorted by theme within each focus group, then by participant, giving rise to a matrix with a column for each theme and a row for each participant. During the sorting process, the raw data was continually checked against the theme heading and the objectives of the research, with some merging of themes reflected in ongoing revisions to the thematic framework. An overall summary of each theme was created by initially summarising each theme by participant, before combining the summaries, highlighting illuminating quotes, and adding researcher interpretations. Trustworthiness was enhanced through member checking, using the method described by Birt et al. [71]. Participants were sent a summary of synthesised themes along with illustrative quotes from the data and asked to provide feedback. Eleven participants returned responses and their comments were added to the data for analysis. Finally, detailed descriptions of each subtheme, describing phenomena and capturing the range of responses, were written by SP. Additional analysis was required to meet the objective of identifying what good access looks like. Key elements of positive and negative experiences were detected through each of the data summaries. These were combined with data coded as ideas for service improvements and linked to the existing themes to create six fundamentals of good access.

Framework analysis sits within a broadly interpretivist frame and the authors viewed this through a subtle realist lens [72], accepting that the participant’s accounts are real whilst assuming that although reality can exist independently of our conception of it, it is subject to an individual’s own interpretation based on individual beliefs and influenced by social, cultural and contextual factors. The team sought to be reflexive researchers, guided by the work of Braun and Clarke [69], recognising the influence of their own experiences and beliefs throughout the research process. The co-productive use of multiple coders and an inductive approach to analysis sought to bring a multi-lens perspective to the interpretation of the data. Three members of the research team engaged in data analysis (SP, OW and MOH). SP, who conducted this study as part of her Masters of Science degree, is a community-based neuro-physiotherapist whose own clinical experiences of navigating the NI healthcare landscape prompted this research. OW was recruited as a lay researcher and contributed his perspective both as a Chartered environmental scientist with a master’s in quantitative research and as a person with lived experience of a PNC. MOH is a retired physiotherapy service manager who has cared for a family member with a PNC. Methods used to promote reflexivity included frequent peer review and discussion, creating an audit trail of the data analysis process and the use of a research journal by SP.

Results

Fourteen people participated in the study: 11 people living with a PNC and three carers. The sample included people living in four out of the five Health and Social Care Trusts in NI. People were living with Parkinson’s (n = 4); ataxia (n = 3); other movement disorders (n = 2); MS (n = 1); syringomyelia (n = 3) and other rare disease (n = 1). Participant demographics are shown in Table 1, aggregated to maintain confidentiality. One participant was a former patient of the principal investigator.

Table 1. Participant demographics.

Characteristic		n=
Role	Person living with condition	11
	Carer	3
Condition	Syringomyelia	3
	Parkinson’s	4
	Charcot Marie Tooth	1
	Ataxia	3
	Progressive Supranuclear Palsy	1
	Multiple Sclerosis	1
	Multi System Atrophy	1
Age Range	18–64	9
	65+	5
Sex	Male	6
	Female	8
Trust Area	Belfast	5
	Northern	3
	South Eastern	0
	Southern	3
	Western	3

There was an overarching theme of access to neurorehabilitation being a journey, from having a need, to receiving a satisfactory rehabilitation outcome; directed by people with PNCs and impacted by interactions with others and available resources. Four key themes were identified: the person in the driving seat; the traffic lights; the need for direction, and roadblocks and traffic jams. Under these headings, 15 sub themes were identified to create the final framework (Figure 1). The main findings are reported below. For ease of reading, irrelevant fillers have been omitted and grammatical errors corrected in quotes.

Figure 1. Final thematic framework showing themes and subthemes.

A winding road, with clockwise from top left: a car; a road barrier; a signpost and a set of traffic lights representing themes.

The person in the driving seat

This theme captured the importance of person-centred care and the need for the person with a PNC to be proactive in driving forwards a referral. While management of long-term conditions needs a team approach, the onus was largely on the person with a PNC to identify the need for, convince others of the pertinence, and pursue a referral for neurorehabilitation. Subthemes identified within this theme were being unique; leading the way; asking for help, and presenting the case for rehabilitation.

Being unique

Despite having similar symptoms, the neurological conditions participants were living with affected their life in unique ways. Participants were clear that health and social care services should be holistic and carefully consider the person, their distinctive life history, lifestyle, roles in society and hence their individual experience of living with a condition.

Life has become a box ticking exercise. And certainly, people with neuro conditions don’t fit into those boxes…. we need to be treated as people and not by our disease. (Participant (P) 6, Focus Group (FG) 2, person with PNC (pwPNC), age 65+)

Where participants needed the input of more than one service, they expressed that their care was fragmented, communication between teams and hospitals was poor and there was an unmet need for a more coordinated multidisciplinary approach within and between Trusts.

I come under the Western Trust. But I see a neurosurgeon in the Belfast Trust. For some of my scans, I have to go to Altnagelvin Hospital, [another] clinic is Omagh Hospital, so I have four hospitals involved in my care and it’s a little bit like they’re not communicating with each other. (P2, FG1, pwPNC, under 65)

Leading the way

Participants recognised the need to take ownership of their own healthcare; however, they felt a disproportionate onus on individuals living with a PNC to research their condition, treatment options and local services. As they travelled on their “journey of discovery” (P1, FG1, pwPNC, under 65), people had to learn to monitor and interpret their symptoms, while mustering the motivation to discover and engage in self-management strategies.

… trying to understand what’s happening to you, or you know how you’re feeling about something, trying to work out for yourself where best to go. (P4, FG1, pwPNC, under 65)

Asking for help

There were opportunities throughout the participants’ journey where rehabilitation needs were identified by others. These included discharge home from the hospital and at general practitioner (GP) or outpatient reviews. Home visits by health and social care providers could prompt a referral or encourage people to seek rehabilitation. Predominantly however, participants needed to be proactive and persistent in asking for rehabilitation. They felt it was left to them to recognise the need for neurorehabilitation and express that need to an HCP. Not everyone felt empowered to do this.

There isn’t any proactive from any of the professionals. They don’t actually try to find out what you need, they rely on you coming along saying I need this, and you don’t really know you need this. (P11, FG3, carer, 65+)

Presenting the case for rehabilitation

Due to the fluctuating and at times, invisible nature of neurological symptoms, some participants felt that HCPs were dismissive if a person did not look sick or was not experiencing symptoms on the day of their appointment. This was associated with participants feeling they were not being believed. The individual then had a role in convincing HCPs of the need for neurorehabilitation, acting as the driving force, suggesting which service would meet their perceived need and advising how to refer. Participants referred to becoming experts in their own care, which could be both an enabler to access and a source of frustration.

It meant they were giving us things that we were asking for. But it became quite a kind of a limitation as well because we were having to [justify] why we need this level of care and rehabilitation. (P13, FG3, carer, under 65)

Information was not always easy to find; participants described having to dig it out and “tearing (their) hair out trying to find information” (P1, FG1, pwPNC, under 65). What they could find was generic, not always accurate, often orientated towards services in Great Britain, and obtained via the internet, peer networks or chance. Participants took the initiative in sharing any information they found with HCPs and others living with neurological conditions. Some did this at a micro level in their everyday interactions with their HCPs, while others engaged in volunteer roles to inform and support others.

The traffic lights

It was easier to get access to neurorehabilitation if a person had been previously known to a service and had the direct contact details of the person or team they wanted to see. Without this, there was an additional step of trying to contact a professional who could make a referral. Referrers held the power to give a green light and route to rehabilitation or could cause delay or prevent services being accessed. This theme depicts the accessibility, actions, and attitudes of HCPs with a role in making a referral to rehabilitation. It encompasses the sub themes of approaching health care services; knowledge; attitudes, beliefs, and influences of HCPs; and being listened to.

Making contact

It is easy if you know who to contact directly rather than the GP, so you don’t have this queuing system of having to ring up for half eight and do that several days in a row before you get through it. (P11, FG3, carer, 65+)

Usually the referrer was a GP, although specialist nurses, social workers, consultants and their secretaries were also mentioned. Some participants echoed the frustration of trying to “get past the receptionists” (P6, FG2, pwPNC, 65+), while others had no issues getting an appointment with their GP.

Knowledge

Participants felt that rehabilitation services were available; however, the referrer knowledge of neurological conditions and the services available could be a barrier to accessing them. Experience of services was more positive when participants were seen by professionals with specialist neurology training. Participants did not expect HCPs to be experts on every condition and acknowledged their appreciation for professionals who went out of their way to find information to gain sufficient knowledge to help people manage their condition. Participants reacted positively to HCPs who were open about knowledge gaps, “trusted [patient and carer] knowledge” (P13, FG3, carer, under 65) and showed an interest in learning; however this was not always the case.

She [HCP] said that nobody had told her anything about it […] I said, “I have leaflets do you want one?” And she said, “Well, no, not now, I’ll get it next time around”. (P6, FG2, pwPNC, 65+)

Participants highlighted the importance of effective communication between departments to provide opportunities for knowledge exchange. Participants shared examples of services, such as neuro-physiotherapy; self-referral to podiatry and community-based activity groups that they had used, but had only found out by word of mouth. The current situation was described as “trying to shop without seeing in the shop or a catalogue” (P11, FG3, carer, 65+).

I don’t think I’m missing out as such, but then how do you know if you’re missing out? […] The services don’t do any marketing. They don’t say, look we’ve got this service, come and use us. (P11, FG3, carer, 65+)

Attitudes, behaviours and influences of HCPs

Participants felt they were more likely to be referred for rehabilitation if the referrer understood the benefits of rehabilitation; however, some HCPs tended to focus on drug or surgical management of conditions.

I have mentioned neuro physio to him because I want to try and manage my condition… and I was basically told, what are they going to do for you? It was like a door being closed in my face. (P2, FG1, pwPNC, under 65)

One participant demonstrated how a shift in attitude had created more opportunities for her than her older sister living with the same condition.

She would [have] went to her GP and said, oh, I want to drive a car, and GP said, no, you can’t do that. And then, 20 years or so later I go to the same GP and he’s like oh yeah, great, we’ll put you down for that. (P7, FG2, pwPNC, under 65)

Being listened to

Participants stressed that HCPs cannot appreciate the uniqueness and complexity of their needs without listening and that listening needs time. Listening is not only necessary to identify rehabilitation needs, but it is also empowering for the individual who is being listened to. Having the time to listen allows the HCP to gain an interest in the person further enabling identification of their specific rehabilitation needs.

Somebody listened not just to what I was saying, but what I wasn’t saying, more to the point. She picked up that I lived alone. I didn’t tell her I was lonely. You know it’s been a long, long winter for all of us. We’ve all been locked down. We’ve all had a rough time, everybody’s fed up. And I didn’t mention any of that, but it was read between the lines. And that was something I appreciated. (P6, FG2, pwPNC, 65+)

The need for direction

Even the participants who were most engaged in managing their condition needed help to navigate health and social care services. Subthemes identified were feeling lost; not knowing what is out there; charity and community support; having a plan, and monitoring/review.

Feeling lost

Participants described feeling lost trying to identify which route to take to manage their condition. The key times they felt “lost and abandoned” (P6, FG2, pwPNC, 65+) were after diagnosis, when they were waiting for their first review appointment; when they reached age 65 and transitioned to older people’s community services; and whenever a member of their rehabilitation team moved to a new job.

So where do you go? You’ve no consultant, you have a charity who considers themselves the only charity within the UK who is giving information about the condition and when you asked them for information, they can’t give you advice. So, we’re lost. Totally lost. (P1, FG1, pwPNC, under 65)

Not knowing what is out there

Participants voiced the need for a single point of contact: a central advice and triage service who were knowledgeable about neurological conditions and could sign post to appropriate services.

If you just went along with the kind of vague description of the kind of problems that you’re having, and that was enough and they said, “right, ok, leave with me”. (P8, FG2, pwPNC, under 65)

Condition-specific specialist nurses provided this service in some instances; however, not all the participants had access to specialist nurses, whilst some who did continued to contact their GP or the consultant’s secretary with concerns.

Charity and community support

A strong theme was the value of third sector organisations as information and support providers, especially where they demonstrated both clinical and local knowledge. These included charities such as Parkinson’s UK, non-profit organisations such as Jigsaw NI, and voluntary groups. Participants who had engaged in charity-led physical activity groups found them invaluable, not only for the health benefits, but also for the opportunities to network with other people living with the same condition. Not everyone knew about support provided by charities and community groups or had access to them, with support especially limited if people were living with a rare disease.

[A family member with Parkinson’s] was handed a folder with information about different services, who she needed to contact for various things. But when I was diagnosed with Chiari, I was handed a booklet from a charity in England with nothing local in it. (P2, FG1, pwPNC, under 65)

Having a plan

Participants felt it was important to agree an individual action plan whenever they told an HCP about a new problem, and wanted a clear documented plan for what to do if there were any changes in their condition, including who to contact and details of local services to support them in self-management. The lack of care pathways recommending rehabilitation for rare diseases was highlighted.

We get setbacks and it’s trying to get you back to either improve where you are today or to stop further deterioration of your condition… but there was no plan to try and address that weakness, so there’s failings for a lot of us. (P1, FG1, pwPNC, under 65)

Monitoring and review

Participants discussed how it would help to have regular reviews with their healthcare team to stay motivated, get co-ordinated care to help with unfamiliar problems or ask questions.

That encourages you to continue to do the exercises because you, you know that you’re going to get a phone call, to check up and say, how are things going and or are you still doing the exer(cises), are you having any problems since we spoke last? (P1, FG1, pwPNC, under 65)

Roadblocks and traffic jams

Additional barriers appeared to be created by Trust resources, policies, and procedures, including eligibility criteria for equipment and services. Lengthy waits between a referral being made and an initial assessment were a barrier to access, potentially limiting the effectiveness of rehabilitation. “You can get on a waiting list, but nothing happens” (P11, FG3, carer, 65+), meanwhile “acute problems become continuous chronic problems” (P6, FG2, pwPNC, 65+). Added frustrations were not knowing the expected wait time, nor whether a person had been added to a waiting list or not. Participants felt that already long waiting times had been exacerbated by the COVID-19 pandemic with media portrayal of waiting times and resource availability discouraging people from seeking help.

Every time you switch on the news its saying about the waiting list or it’s saying about how there’s no money in the NHS, so that limits you. (P7, FG2, pwPNC, under 65)

Those who had been living with their condition for longer knew to consider waiting list times and anticipate their needs in advance to receive services at an appropriate time.

It’ll be six months before they can get me one. So I figure best get a wheelchair now when you don’t need it, so it’ll be there when you do need it. (P8, FG2, pwPNC, under 65)

Policies and procedures

Participants expressed frustrations and inconsistencies between Trusts in the provision of equipment to aid activities of daily living with additional rules around equipment provision if more than one person with a disability lived in the same house. There was an example of therapy intervention being limited to a specific number of sessions rather than being needs dependent. Self-referral to AHPs was only offered by some Trusts, and where available, some services excluded people with neurological conditions. Other services were only accessible to patients under the care of a specific Consultant.

I was told everybody can self-refer’. But then I found in some Trusts, they didn’t really want to see people with neurological conditions. Which shocked me. I went, and was told no, we look after people with diabetes, we look after people with various other conditions, but not with neurological conditions. (P1, FG1, pwPNC, under 65)

Fundamentals of good access

Six fundamentals of good access were identified: recognition of rehabilitation needs; discussion with a knowledgeable professional; a single point of access; right care at the right time; self-management with community support and review and monitoring (Figure 2). These are presented fully in Table 2.

Figure 2. Fundamentals of good access to rehabilitation.

A single grey key with six key fobs listing the fundamentals.

Table 2. Descriptors and evidence for fundamentals of good access.

Fundamentals	What does good access look like?	Evidenced in subthemes	Additional Supporting Data
Recognition of rehabilitation needs	People living with a PNC and HCPs have the knowledge, skills and confidence to recognise needs that may benefit from rehabilitation. People living with a PNC are asked directly about, and have opportunities to discuss problems that may respond to rehabilitation. When a person presents with a problem that can potentially be addressed by rehabilitation, or asks for an onward referral, their concerns are listened to and appropriate action taken.	1.2, 1.3, 1.4, 2.2, 2.3, 2.4, 3.5	And there was so much, probably could have been done had I’d been listened to, that I may not be the way I am today (P6, FG2, pwPNC, 65+)
Discussion with knowledgeable professional	People have the opportunity to talk to clinicians who appreciate the complex, fluctuating needs of people living with PNCs and their carers. HCPs have an awareness of the benefits of neurorehabilitation and knowledge of local services and how to refer to them.	1.3, 1.4, 2.1, 2.2, 2.3, 2.4, 3.2	We shouldn’t be the people looking for the information that healthcare professionals should be freely giving us. They should have the knowledge to give us the information in regards what pathway we need to take (P2, FG1, pwPNC, under 65). My GP read up on my disorder to help me and I got the access really easy. I’ve moved and I’ve had the complete opposite here. The doctor isn’t very knowledgeable about my condition and I don’t get no help at all (P14, FG3, pwPNC, under 65) I think overall the resources and the access to rehabilitation is there, I think providing you’re being sign posted to the right people (P13, FG3, pwPNC, under 65)
Single point of access	People have a single point of access to health and social care services, which support them to live well with their PNC.	2.1, 3.1, 3.2, 3.4	There’s no central thing that we can go to to say right, signpost me here, there, or wherever. (P10, FG3, carer, 65+)
Right care at the right time	People have timely access to services providing neurorehabilitation. Care is needs-led, recognising that the needs of people with PNCs may cross different specialities and professions. Care is multidisciplinary, co-ordinated and consistent across Trusts. People have the opportunity to be treated by HCPs who have experience and/or specialist training in the management of PNCs.	1.1, 2.3, 2.4, 3.2, 3.4, 3.5, 4.1, 4.2	When it comes to neuro diseases, there are so many specialties that it crosses. And so many complex things that different specialties can help in different ways (P6, FG1, pwPNC, 65+). There’s failings for a lot of us, and particularly with lesser known conditions. […] this is the issue, for some conditions there isn’t any care pathways. (P1, FG1, pwPNC, under 65)
Self-management with community support	People have the knowledge, skills and confidence to self-manage their condition. People have a documented plan, devised with a knowledgeable HCP, to manage their condition. People are aware of health and social care and third sector resources, including peer support, to help them self-manage. Information on these resources is readily available.	1.2, 1.3, 1.4, 3.1, 3.2, 3.3, 3.4, 3.5	Things like exercise groups are great because you’ve got the social aspect and helps everybody mentally, and you can discuss things […] there’s lots and lots of common topics for people in groups. (P4, FG1, pwPNC, under 65) The carers group. You got talking to people, you learnt from each other. And I mean they did bring in people, like physio, and that was brilliant because felt there is things out there (P10, FG3, carer, 65+) It wasn’t through the consultant, it’s the support group. It gave you support to go to physio, speech and language (P3, FG1, pwPNC, 65+) From her mental health point of view, she said she would have really benefited from maybe a counsellor or somebody else with Parkinson’s sitting down with her and just say, it’s not a nice condition, but it’s not the end of the world. This treatment or this service is available (P2, FG2, pwPNC, under 65)
Review and monitoring	People living with a PNC have regular check ins with a knowledgeable health care professional to monitor their condition.	1.2, 3.4, 3.5,	This social worker came out once a week and then once a month, but then she was always able to be accessed via a phone call as well. You know if we needed a dietician we got a dietician, referred to physio, speech and language (P13, FG3, carer, under 65)

Discussion

The results describe the unique journey of a person from living well with their PNC to being aware of and communicating a rehabilitation need to an HCP; the expectations and realities of that initial interaction; the multiple factors that contribute to the success of navigating the healthcare system; and the potential stumbling blocks at the doors of services providing neurorehabilitation. They suggest that the biggest determinants of access to community neurorehabilitation are rooted in knowledge, communication, and relationships. Successful access was dependent on participants’ own proactivity and their ability to have their needs explored by a knowledgeable HCP. Waiting times were seen as an additional barrier.

The role of the person with a PNC

Participants in our study described a need to be proactive in identifying rehabilitation needs and seeking help, reflecting previous research involving service users [59] and HCPs, who acknowledge that they depend on the skills and motivation of people living with PNCs to access health care [73]. Personal characteristics as determinants of healthcare access were first recognised by Penchansky and Thomas in 1981 [74] and more recently developed by Levesque et al. [75]

Levesque’s conceptual framework of access to health care presents two facing sides, depicting demand (population) and supply (heath care provider) determinants, which need to successfully interact for access to occur (Figure 3). Our themes are heavily weighted towards Levesque’s demand side dimensions, reflecting the abilities of a person to identify healthcare needs, to seek healthcare resources and to engage with appropriate services. This emphasises the vital, yet complex role of the person living with a PNC in accessing neurorehabilitation. One responsibility, presenting the case for rehabilitation, has been described by Dixon-Woods et al. [76] as a dynamic and contingent process of negotiation between individuals seeking access to health care and those services. Research involving people with MS concurs that being proactive involves multiple complex strategies, enacted both in isolation and in chains of decisions and behaviours [77]. The ability of a person to assert a claim to rehabilitation candidacy depends on several factors including personal autonomy; social determinants of health and health literacy [75,76,78] - the knowledge, motivation and competencies required to access, understand, appraise and apply health information [79]. In keeping with our findings, a person needs adequate information about their condition, the benefits of interventions and the opportunity to have discussions with a knowledgeable HCP [75,76]. Collectively, these factors can influence the level of patient activation, a behavioural concept that encompasses a person’s knowledge, skill, and confidence in managing their own health and health care [80]. The complexity, challenges, and volume of work required by an individual with a PNC to reach services may be a deterrent to accessing healthcare, especially in patients with low activation levels.

Figure 3. Levesque et al.’s conceptual framework of access to healthcare. From: Levesque et al. [75].

Empowering people

Empowerment is a process of capacity building, through which a person comes to understand and effectively use the resources available to them to live well with a condition, navigating health services as required [81,82]. To enable proactivity, people need to be empowered to be activated patients through knowledge and skill acquisition and increasing their capacity to recognise and hold responsibility for their own health [80]. This has previously been identified as a challenge to be addressed in designing new models of care [83].

Interventions to facilitate empowerment include patient education aimed at increasing health literacy [84], with strategies in the domains of finding and understanding information most likely to increase patient activation [85]. Examples of patient education methods include condition specific education sessions [24], community activities [73], and education modules including when/how to seek help if concerned [83]. By understanding the healthcare system, empowered patients can not only achieve better access for themselves, but also advocate for improved services for others [86]. However, is unclear what effect these education methods have on long-term empowerment [87], with some evidence that any benefits are lost at follow up [88]. This adds strength to our finding that living well with a PNC and being able to access appropriate rehabilitation services when required needs ongoing community support, and reflects other recommendations for key interventions to increase activation levels to include strengthening social support systems and providing self-management support [89].

Being unique was a subtheme in the present study, which emphasised the individual perspectives of living with a PNC. This placed our participants as experts by experience, who by necessity, self-manage their condition daily. True self-management, however, should be a partnership between HCPs providing appropriate support and tools [81] and people living with a condition engaging in strategies to promote a meaningful and purposeful life [90]. Interactive, behaviour focused self-management support is known to positively influence people’s symptoms, quality of life and patterns of healthcare resource use [91]. Despite numerous self-management support models for people with chronic conditions in the literature [92], implementing support in practice remains a challenge, with barriers including the potential cognitive impairment and low mood associated with PNCs, lack of organisational support and HCP’s views on its practicality and value [93].

Participants in our study referred to joint ventures between NHS AHPs and third sector organisations as being beneficial to them understanding the indications and benefits of neurorehabilitation. Third sector organisations in general were identified as a source of guidance and information, both from the organisation itself and through interactions with peers. This opportunity for knowledge transfer is well evidenced in the literature for people with PNCs [94,95]; meanwhile, peer support is recognised on a wider scale as being important to people with disabilities in enabling access to everyday participation [96]; in promoting engagement in healthcare [73,95], and in enabling participation in rehabilitation [78].

Further research is needed to explore what knowledge and skills are needed to empower people with PNCs to identify rehabilitation needs and proactively seek intervention; what is the best way of facilitating this learning; and what mechanisms are most effective to safety net people with low levels of activation?

The role of the HCP

HCPs have a role in creating an environment where empowerment can flourish [81,82]. Others exploring the healthcare experiences of people with PNCs [58,97,98] have concluded that a successful health care consultation is dependent on both patient and HCP factors. Two key determinants of success are the clinician’s ability to empathise, and the ability to competently inform, advise and educate [97,99]. In a recent study of primary care management of rare diseases, GP knowledge was more likely to come from the internet than from patients themselves [100]. Our study echoes other qualitative work identifying that HCPs do not always seem knowledgeable in the management of PNCs [18,101–103]. This is despite knowledge about various neurological conditions, their impact and local supports being included in the core curriculum for GPs [104]. Compared to other specialties, GPs rate their knowledge and confidence in treating neurology patients least [105,106]. The literature confirms our findings that there is a need to support primary care clinicians in managing people with rare and complex conditions in the community [100,107], although suggests that training alone is not deemed a feasible solution to increasing knowledge amongst HCPs [98].

Our participants desire to be listened to, and their willingness to be involved in education leads us to conclude that co-created interprofessional training, where patients and care professionals learn together, should be a priority for further exploration, echoing NHS England guidance [108]. This may also provide a marketing opportunity for neurorehabilitation services to clarify their role and referral pathways, the lack of which was identified as a barrier to access.

Additional factors determining access to neurorehabilitation

Waiting times to see AHPs with expertise in neurology was highlighted as a barrier to access. Across NHS services, a decade of progress in waiting lists was lost in a matter of weeks during the COVID-19 pandemic [109], with rehabilitation services bearing the brunt of service disruption for people with PNCs [110,111]. The mismatch between capacity and demand for rehabilitation services has widened [49]. Existing barriers to rehabilitation services have been amplified [112], while demand for rehabilitation has increased with lockdowns negatively affecting psychological health, motor symptoms and accelerating frailty in people with PNCs [112–114]. Lengthy community waiting list times as services continue to rebuild and face new challenges is of global concern [115] and needs addressed though the commissioning of properly resourced community rehabilitation services for people with PNCs [111].

Opportunities to improve access

Participants in our study suggested alternatives to the traditional doctor-led referral into rehabilitation. Specialist nurses and self-re-referral, where available, were identified as successful existing alternatives, while other initiatives such as neurology navigator roles and initial self-referral to therapy services were discussed. Ultimately, participants in our study wanted a single gateway to neurology services including neurorehabilitation. Triaging from a single point of contact is supported in recently published guidelines and prospective models of care [42,49,83,116,117]. Co-ordination of care is vital to ensuring the needs of people with PNCs are met in a timely, appropriate and comprehensive manner [118] with well-coordinated care enabling more straightforward access to relevant heath care services [116,119]. Care co-ordination may fall under the remit of a clinician, such as a specialist nurse [118,120] or may be the sole duty of a person in a non-clinical role. Navigation is one model of the co-ordination process, enabling integrated care by linking individuals to relevant health, social care and community services [121]. Navigators in primary care have been shown to have a positive impact on coordination and facilitation of access to healthcare [122]. While lay navigators are more likely to influence inequalities in socioeconomic determinants of health, care co-ordination models led by HCPs are more likely to reduce barriers to health care for people with complex health and social care needs [122]. It has been suggested that people with access to specialised care coordinators (for example specialist nurses or support from condition-specific organisations) have better access to rehabilitation [53,123,124], however; more recent studies have failed to demonstrate the impact of condition-specific specialist nurses on health outcomes for people with PNCs [118,120]. In a review of the evidence related to the co-ordination of care for people with MS [118], the authors summarised that it is more important for a point of contact to have knowledge of MS services and have access to HCPs with knowledge of the condition, as opposed to knowledge of MS itself.

Clinical guidelines for PNCs advocate for the involvement of neuro-therapists, working in a multidisciplinary setting [24,25,40,42], with an emphasis on people having access to HCPs and services who are best placed to deal with specific symptoms and the needs of the person, rather than condition-specific multidisciplinary teams [34,38,125]. Our participants were vocal about people with PNCs not fitting into boxes and the added challenges of living with a rare PNC, echoing the desire for needs-based, rather than diagnosis-dependent access to healthcare.

The current study aimed to generate recommendations for service improvement to facilitate good access to community neurorehabilitation for people living with PNCs. In isolation, none of our fundamentals of being empowered or given the opportunity to identify rehab needs; having access to a knowledgeable HCP; a single point of contact; timely appropriate care; support to self-manage or ongoing review, are new concepts. Together however, they create a blueprint for accessibility from the perspective of people with PNCs, which can be applied to both existing and alternative models of community-based neurorehabilitation for people with PNCs in NI.

Limitations and future directions

Our methodology allowed us to hear a variety of people across NI’s experiences, however our sample did not include any Black, Asian, or Minority Ethnic (BAME) participants, nor people without English as their first language. We did not collect any information on socioeconomic status. These would be important considerations in the future given the higher level of disease burden experienced by minority and vulnerable populations living with PNCs [29,126,127], and the fact that minority groups are known to experience health care access differently [128]. While recruitment was open to anyone who had sought rehabilitation, whether successful or not, all the participants in our study had received an intervention, with people speaking of their experiences in the maintenance through to palliative care stages of their or the cared for person’s journey. Further research is needed to investigate the experiences of people who have not had access to rehabilitation and those who are newly diagnosed. Moreover, the proportion of different neurological conditions represented in our study did not reflect the prevalence of these conditions in NI. MS is known to be the most prevalent PNC in NI [129], yet our study only included the experiences of one person with MS. Our participants were recruited through support groups, suggesting they were already proactive information seekers, as such; their experiences may not be generalisable to everyone living with a PNC.

Finally, data saturation as an end point of recruitment is debated in qualitative research [130,131]. Given the underpinning assumptions and theoretical positioning of our research, data saturation was not explored during our analysis. To provide a more comprehensive and balanced view, the perspectives of HCPs referring into rehabilitation services should also be considered in future research, along with the use of alternative data collection methods, including a countrywide survey, to increase the validity and reliability of the findings.

Acknowledgements

The authors would like to thank the participants who provided valuable data and feedback to this research. Additional thanks go to Shane Breen, Olga McAlister, Hazel Pryde and Gillian Wilson for their contributions to this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available on request from the corresponding author, [KP]. The data are not publicly available due to their containing information that could compromise the privacy of research participants.

Additional information

Funding

This project was undertaken as part of a Masters of Science degree. This degree was funded by the Department of Health, Northern Ireland.