{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,5]],"date-time":"2026-08-05T06:06:32Z","timestamp":1785909992026,"version":"3.56.0"},"reference-count":68,"publisher":"Public Library of Science (PLoS)","issue":"7","license":[{"start":{"date-parts":[[2025,7,11]],"date-time":"2025-07-11T00:00:00Z","timestamp":1752192000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:p>According to the National Institute for Health and Care Excellence, motor neuron disease assessment and management should be a coordinated, clinic-based, multidisciplinary team approach. However, the wellbeing, work experiences, and the alignment with national frameworks and standards of the motor neuron disease (MND) nurses and allied health professionals\u2019 workforce are severely underreported and under-researched within the literature. Therefore, this report aimed to capture the workforce and their alignment with national frameworks and standards, and to assess their experiences working as an MND health care professional. A pragmatic research paradigm and a mixed methods approach was employed using a cross-sectional questionnaire survey to collect, compare, and interpret quantitative and qualitative data points. Data was gathered under the remit of an audit and service evaluation under NHS Lothian. Demographics data and work-related characteristics were collected. Job experience and wellbeing were collected using <jats:italic>Likert<\/jats:italic> scales and open-ended questions. The level of burnout was assessed using the validated tool, the Burnout Assessment Tool (BAT). Compliance with national frameworks were based on the NICE guidelines and the Scottish MND Advanced Clinical Nurse Specialist Pillars of Practice Competencies. 64 HCPs completed the questionnaire, with the majority of respondents from England (54.7%) and Scotland (35.9%). Education level was mainly having a Bachelors (or equivalent) degree (40%) or a Masters (or equivalent) degree (31%), with the remaining having a diploma-based qualification (29%). The analysis revealed three key themes: the importance of the multi-disciplinary team (MDT), the roles and the level of competencies, and the benefits and challenges in providing direct care. This was associated with 14% and 12% of respondents being at medium and high risk of burnout, respectively. This report highlighted the importance of a collaborative MDT to support the needs of patients, their carers\/ family members and HCPs themselves. The workforce found the flexibility, autonomy, and variety within their role beneficial where almost 80% of the respondents engaged in 8 of the 15 competencies. The benefits of providing direct care were found to be associated with feeling valued by the patients, their carers\/ family members, and the core and extended MDT, and feeling satisfied about their work. The perceived challenges of providing direct care involved isolation, lack of direct funding, and a high caseload with complex needs and not enough time to provide quality care. It is recommended that a national competency programme or a Masters level course in MND care should be developed to maintain the quality of care, and future research should aim to evaluate the entire workforce longitudinally, address organisational barriers, and explore burnout preventative strategies to maintain a resilient workforce.<\/jats:p>","DOI":"10.1371\/journal.pone.0319628","type":"journal-article","created":{"date-parts":[[2025,7,11]],"date-time":"2025-07-11T17:45:27Z","timestamp":1752255927000},"page":"e0319628","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":3,"title":["An Evaluation of the United Kingdom Motor Neuron Disease Nurses and Allied Health Professionals (UK MND NAHP) Workforce: A Census"],"prefix":"10.1371","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-5893-1229","authenticated-orcid":true,"given":"Isaac","family":"Chau","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ethan","family":"Stoker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-2736-5583","authenticated-orcid":true,"given":"Jessica","family":"Gill","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Newton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"on behalf of The United Kingdom Motor Neuron Disease Nurses and Allied Health Professionals Consortium","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2025,7,11]]},"reference":[{"issue":"5","key":"pone.0319628.ref001","doi-asserted-by":"crossref","first-page":"480","DOI":"10.1016\/S1474-4422(21)00465-8","article-title":"Recent advances in the diagnosis and prognosis of amyotrophic lateral sclerosis","volume":"21","author":"SA Goutman","year":"2022","journal-title":"Lancet Neurol"},{"issue":"9","key":"pone.0319628.ref002","doi-asserted-by":"crossref","first-page":"585","DOI":"10.1056\/NEJM199403033300901","article-title":"A controlled trial of riluzole in amyotrophic lateral sclerosis. ALS\/Riluzole Study Group","volume":"330","author":"G Bensimon","year":"1994","journal-title":"N Engl J Med"},{"issue":"6","key":"pone.0319628.ref003","doi-asserted-by":"crossref","first-page":"343","DOI":"10.2217\/nmt-2020-0033","article-title":"Riluzole for the treatment of amyotrophic lateral sclerosis","volume":"10","author":"Y Saitoh","year":"2020","journal-title":"Neurodegener Dis Manag"},{"key":"pone.0319628.ref004","doi-asserted-by":"crossref","first-page":"1473981","DOI":"10.1155\/2020\/1473981","article-title":"Minimizing the Diagnostic Delay in Amyotrophic Lateral Sclerosis: The Role of Nonneurologist Practitioners","volume":"2020","author":"M Matharan","year":"2020","journal-title":"Neurol Res Int"},{"key":"pone.0319628.ref005","doi-asserted-by":"crossref","first-page":"205","DOI":"10.2147\/JMDH.S134992","article-title":"Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach","volume":"10","author":"A Hogden","year":"2017","journal-title":"J Multidiscip Healthc"},{"key":"pone.0319628.ref006","author":"National Institute for Health and Care Excellence (NICE)","year":"2016"},{"issue":"3","key":"pone.0319628.ref007","doi-asserted-by":"crossref","first-page":"360","DOI":"10.1111\/j.1468-1331.2011.03501.x","article-title":"EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)--revised report of an EFNS task force","volume":"19","author":"EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis","year":"2012","journal-title":"Eur J Neurol"},{"issue":"2","key":"pone.0319628.ref008","doi-asserted-by":"crossref","first-page":"157","DOI":"10.2217\/nmt.13.7","article-title":"Multidisciplinary Clinics: Optimizing Treatment for Patients With Amyotrophic Lateral Sclerosis","volume":"3","author":"KA Riemenschneider","year":"2013","journal-title":"Neurodegen Dis Manage"},{"issue":"4","key":"pone.0319628.ref009","doi-asserted-by":"crossref","first-page":"188","DOI":"10.12968\/bjcn.2022.27.4.188","article-title":"Perceptions of people with motor neurone disease, families and HSCPs: a literature review","volume":"27","author":"H Brewah","year":"2022","journal-title":"Br J Community Nurs"},{"issue":"18","key":"pone.0319628.ref010","doi-asserted-by":"crossref","first-page":"1080","DOI":"10.12968\/bjon.2004.13.18.16141","article-title":"Healthcare professionals\u2019 knowledge of motor neurone disease","volume":"13","author":"MR O\u2019Brien","year":"2004","journal-title":"Br J Nurs"},{"key":"pone.0319628.ref011","first-page":"165","volume-title":"Multidisciplinary care in ALS: expanding the team","author":"O Hardiman","year":"2012"},{"issue":"2","key":"pone.0319628.ref012","doi-asserted-by":"crossref","first-page":"228","DOI":"10.1017\/S1478951517000700","article-title":"Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis","volume":"16","author":"M Harris","year":"2018","journal-title":"Palliat Support Care"},{"issue":"1","key":"pone.0319628.ref013","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1111\/ene.12889","article-title":"A consensus review on the development of palliative care for patients with chronic and progressive neurological disease","volume":"23","author":"DJ Oliver","year":"2016","journal-title":"Eur J Neurol"},{"key":"pone.0319628.ref014","doi-asserted-by":"crossref","first-page":"606","DOI":"10.3389\/fpsyg.2015.00606","article-title":"Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis","volume":"6","author":"A Soundy","year":"2015","journal-title":"Front Psychol"},{"key":"pone.0319628.ref015","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1080\/21678421.2020.1813780","article-title":"Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease","volume":"22","author":"SM Aoun","year":"2021","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"2","key":"pone.0319628.ref016","doi-asserted-by":"crossref","first-page":"104","DOI":"10.1097\/JNN.0000000000000573","article-title":"Mutuality in Motor Neuron Disease: A Mixed-Method Study","volume":"53","author":"S Cilluffo","year":"2021","journal-title":"J Neurosci Nurs"},{"issue":"1","key":"pone.0319628.ref017","doi-asserted-by":"crossref","first-page":"81","DOI":"10.1186\/s12904-016-0153-0","article-title":"Caregiving in ALS - a mixed methods approach to the study of Burden","volume":"15","author":"M Galvin","year":"2016","journal-title":"BMC Palliat Care"},{"key":"pone.0319628.ref018","doi-asserted-by":"crossref","first-page":"4129","DOI":"10.1111\/jocn.13945","article-title":"Supportive care needs of patients with amyotrophic lateral sclerosis\/motor neuron disease and their caregivers: A scoping review","volume":"26","author":"J Oh","year":"2017","journal-title":"Journal of clinical nursing"},{"key":"pone.0319628.ref019","doi-asserted-by":"crossref","first-page":"1838","DOI":"10.1111\/jocn.15692","article-title":"Coping in people with amyotrophic lateral sclerosis and motor neuron disease: Systematic review","volume":"30","author":"J Oh","year":"2021","journal-title":"J Clin Nurs"},{"issue":"2","key":"pone.0319628.ref020","doi-asserted-by":"crossref","first-page":"320","DOI":"10.1017\/S1478951522000311","article-title":"Interventions targeting psychological well-being for motor neuron disease carers: A systematic review","volume":"21","author":"P Cafarella","year":"2023","journal-title":"Palliat Support Care"},{"issue":"6","key":"pone.0319628.ref021","doi-asserted-by":"crossref","first-page":"2282","DOI":"10.1111\/hsc.13049","article-title":"Supporting access to activities to enhance well-being and reduce social isolation in people living with motor neurone disease","volume":"28","author":"S Simpson","year":"2020","journal-title":"Health Soc Care Community"},{"key":"pone.0319628.ref022","doi-asserted-by":"crossref","first-page":"521","DOI":"10.1080\/21678421.2019.1621344","article-title":"Needs and preferences for psychological interventions of people with motor neuron disease","volume":"20","author":"KR Weeks","year":"2019","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"pone.0319628.ref023","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/21678421.2020.1788094","article-title":"Psychological interventions for people with motor neuron disease: a scoping review","volume":"22","author":"N Zarotti","year":"2021","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"pone.0319628.ref024","unstructured":"Research NIfHaC. The United Kingdom and Republic of Ireland Clinical Research Nurse and Midwife Census 2021. National Institute for Health and Care Research. 2023 2 February 2023."},{"key":"pone.0319628.ref025","author":"Health RCoPaC","year":"2019"},{"key":"pone.0319628.ref026","year":"2022"},{"key":"pone.0319628.ref027","volume-title":"Designing and Conducting Mixed Methods Research","author":"JW Creswell","year":"2017"},{"issue":"2","key":"pone.0319628.ref028","doi-asserted-by":"crossref","first-page":"202","DOI":"10.1177\/1558689815607096","article-title":"The Value of Mixed Methods Research","volume":"11","author":"CA McKim","year":"2016","journal-title":"Journal of Mixed Methods Research"},{"key":"pone.0319628.ref029","author":"A Bethall","year":"2019"},{"key":"pone.0319628.ref030","author":"W Schaufeli","year":"2020"},{"key":"pone.0319628.ref031","doi-asserted-by":"crossref","DOI":"10.1093\/acprof:oso\/9780190215491.001.0001","volume-title":"Content Analysis","author":"JW Drisko","year":"2015"},{"key":"pone.0319628.ref032","author":"Lumivero","year":"2023"},{"issue":"1","key":"pone.0319628.ref033","doi-asserted-by":"crossref","first-page":"1175","DOI":"10.3126\/nje.v12i1.43633","article-title":"The Growing Importance of Mixed-Methods Research in Health","volume":"12","author":"SP Wasti","year":"2022","journal-title":"Nepal J Epidemiol"},{"key":"pone.0319628.ref034","doi-asserted-by":"crossref","first-page":"85","DOI":"10.3389\/fonc.2020.00085","article-title":"The Multidisciplinary Team (MDT) Approach and Quality of Care","volume":"10","author":"M Taberna","year":"2020","journal-title":"Front Oncol"},{"issue":"3","key":"pone.0319628.ref035","doi-asserted-by":"crossref","first-page":"911","DOI":"10.1007\/s10072-020-05011-2","article-title":"Multidisciplinary care in Amyotrophic Lateral Sclerosis: a systematic review and meta-analysis","volume":"42","author":"FEO de Almeida","year":"2021","journal-title":"Neurol Sci"},{"issue":"1","key":"pone.0319628.ref036","doi-asserted-by":"crossref","first-page":"13","DOI":"10.3109\/17482968.2012.690419","article-title":"The natural history of motor neuron disease: assessing the impact of specialist care","volume":"14","author":"T Aridegbe","year":"2013","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"pone.0319628.ref037","doi-asserted-by":"crossref","first-page":"569","DOI":"10.1080\/21678421.2017.1349151","article-title":"The benefit of evolving multidisciplinary care in ALS: a diagnostic cohort survival comparison","volume":"18","author":"S Martin","year":"2017","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"9","key":"pone.0319628.ref038","doi-asserted-by":"crossref","first-page":"1258","DOI":"10.1136\/jnnp.74.9.1258","article-title":"Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996\u20132000","volume":"74","author":"B Traynor","year":"2003","journal-title":"Journal of Neurology, Neurosurgery, and Psychiatry"},{"key":"pone.0319628.ref039","article-title":"A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland","author":"J Rooney","year":"2014","journal-title":"Journal of Neurology, Neurosurgery & Psychiatry"},{"issue":"2","key":"pone.0319628.ref040","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1177\/0269216311398697","article-title":"Social services homecare for people with motor neurone disease\/amyotrophic lateral sclerosis: why are such services used or refused?","volume":"26","author":"MR O\u2019Brien","year":"2012","journal-title":"Palliat Med"},{"issue":"6","key":"pone.0319628.ref041","doi-asserted-by":"crossref","first-page":"708","DOI":"10.1177\/0269216320908775","article-title":"The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review","volume":"34","author":"K Flemming","year":"2020","journal-title":"Palliat Med"},{"key":"pone.0319628.ref042","author":"Multidisciplinary Pan Dorset Group","year":"2020"},{"key":"pone.0319628.ref043","author":"Middlesbrough MND Centre","year":"2022"},{"key":"pone.0319628.ref044","author":"J Leicester","year":"2020"},{"key":"pone.0319628.ref045","author":"Ipswich and East Suffolk MND Clinic"},{"key":"pone.0319628.ref046","author":"H Copsey","year":"2018"},{"key":"pone.0319628.ref047","author":"National Institute for Health and Care Excellence"},{"key":"pone.0319628.ref048","author":"National Neurosciences Advisory Group","year":"2023"},{"key":"pone.0319628.ref049","author":"University Hospitals Bristol and Weston NHS Foundation Trust","year":"2023"},{"key":"pone.0319628.ref050","author":"Motor Neurone Disease Association","year":"2025"},{"key":"pone.0319628.ref051","author":"R Hall","year":"2024"},{"key":"pone.0319628.ref052","author":"Motor Neurone Disease Association","year":"2021"},{"key":"pone.0319628.ref053","author":"MS Trust, Parkinson\u2019s UK, Motor Association","year":"2020"},{"issue":"1","key":"pone.0319628.ref054","doi-asserted-by":"crossref","first-page":"39","DOI":"10.1186\/s12904-019-0423-8","article-title":"Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study","volume":"18","author":"C Mc Veigh","year":"2019","journal-title":"BMC Palliat Care"},{"issue":"6","key":"pone.0319628.ref055","doi-asserted-by":"crossref","first-page":"623","DOI":"10.1111\/jnu.12594","article-title":"Factors Related to the Clinical Competence of Registered Nurses: Systematic Review and Meta-Analysis","volume":"52","author":"J Gunawan","year":"2020","journal-title":"J Nurs Scholarsh"},{"issue":"5","key":"pone.0319628.ref056","doi-asserted-by":"crossref","first-page":"362","DOI":"10.1177\/1049909111423774","article-title":"Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care: the case for a better understanding of patient experiences","volume":"29","author":"G Foley","year":"2012","journal-title":"Am J Hosp Palliat Care"},{"issue":"1","key":"pone.0319628.ref057","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0245798","article-title":"The relationship between workload and burnout among nurses: The buffering role of personal, social and organisational resources","volume":"16","author":"E Diehl","year":"2021","journal-title":"PLoS One"},{"key":"pone.0319628.ref058","doi-asserted-by":"crossref","first-page":"691","DOI":"10.2147\/PPA.S36759","article-title":"Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals","volume":"6","author":"A Hogden","year":"2012","journal-title":"Patient Prefer Adherence"},{"issue":"6","key":"pone.0319628.ref059","doi-asserted-by":"crossref","first-page":"1079","DOI":"10.3233\/JND-210687","article-title":"Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study","volume":"8","author":"M Kierkegaard","year":"2021","journal-title":"J Neuromuscul Dis"},{"key":"pone.0319628.ref060","doi-asserted-by":"crossref","first-page":"171","DOI":"10.2147\/LRA.S240564","article-title":"Burnout in healthcare workers: prevalence, impact and preventative strategies","volume":"13","author":"S De Hert","year":"2020","journal-title":"Local Reg Anesth"},{"issue":"6","key":"pone.0319628.ref061","doi-asserted-by":"crossref","first-page":"881","DOI":"10.1016\/j.jen.2023.08.002","article-title":"\u201cFeeling Like an Island\u201d: Perceptions of Professional Isolation Among Emergency Nurses","volume":"49","author":"M Kutoane","year":"2023","journal-title":"J Emerg Nurs"},{"key":"pone.0319628.ref062","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.g3231","article-title":"The impact of NHS resource allocation policy on health inequalities in England 2001-11: longitudinal ecological study","volume":"348","author":"B Barr","year":"2014","journal-title":"BMJ"},{"issue":"22","key":"pone.0319628.ref063","doi-asserted-by":"crossref","first-page":"14701","DOI":"10.3390\/ijerph192214701","article-title":"Factors Associated with Burnout in Healthcare Professionals","volume":"19","author":"SM Taranu","year":"2022","journal-title":"Int J Environ Res Public Health"},{"key":"pone.0319628.ref064","first-page":"1","article-title":"Nurses quietly quit their job more often than other healthcare workers: An alarming issue for healthcare services","author":"P Galanis","year":"2024","journal-title":"International Nursing Review"},{"issue":"8","key":"pone.0319628.ref065","doi-asserted-by":"crossref","first-page":"899","DOI":"10.1080\/19368623.2022.2136601","article-title":"The Great Resignation and Quiet Quitting paradigm shifts: An overview of current situation and future research directions","volume":"31","author":"S Formica","year":"2022","journal-title":"Journal of Hospitality Marketing & Management"},{"issue":"2","key":"pone.0319628.ref066","doi-asserted-by":"crossref","first-page":"401","DOI":"10.1108\/PR-03-2023-914","article-title":"Editorial: The great resignation: managing people in a post COVID-19 pandemic world","volume":"52","author":"E Ng","year":"2023","journal-title":"Personnel Review"},{"issue":"1","key":"pone.0319628.ref067","article-title":"Quiet quitting among nurses increases their turnover intention: evidence from Greece in the post-COVID-19 era","volume":"12","author":"P Galanis","year":"2023","journal-title":"Healthcare (Basel)"},{"key":"pone.0319628.ref068","doi-asserted-by":"crossref","first-page":"563","DOI":"10.1007\/978-3-030-14730-3_60","article-title":"Stress and burnout in health professionals","volume-title":"Occupational and environmental safety and health","author":"A Gon\u00e7alves","year":"2019"}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0319628","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,11]],"date-time":"2025-07-11T17:45:35Z","timestamp":1752255935000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0319628"}},"subtitle":[],"editor":[{"given":"Masoud","family":"Rahmati","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2025,7,11]]},"references-count":68,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2025,7,11]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0319628","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,7,11]]}}}