Background Respiratory muscle weakness is a common feature of neurological conditions (Hough A, 2014). It is essential patients at risk of respiratory difficulties have timely access to specialist support to manage symptoms (NICE. Motor Neurone Disease: assessment and management. [NG42], 2016) and improve quality of life (Oliver, Borasio, Caraceni, et al, 2016. Eur J Neurol. 23:30). Therefore, it is concerning that over half of people with neuromuscular conditions have insufficient access to community respiratory services demonstrating a ‘postcode lottery’ (Muscular Dystrophy UK, 2015) similarly indicated in the Swindon area (Moffatt, 2018).
Implement and evaluate a specialist role within a hospice palliative care service.
Manage a caseload, lead and co-ordinate care.
Address local inequalities in accessing community respiratory provision for people with neuromuscular disease.
Improve patients’ and carers’ experience, upskill health care professionals in respiratory symptom management.
Methods A new hospice, community and hospital based neurology and respiratory service was established.
Quality improvement methodology was used to provide an eight month review. This included:
Cough augmentation clinical audit review against NICE guidance.
Patient/carer interviews, questionnaires, case studies.
Feedback and surveys from healthcare professionals.
Plan Do Study Act (PDSA) cycles.
Results 20 patients, 22 carers and 96 health care professionals have accessed the service. Excellent patient, carer and professional feedback demonstrated the quality of coordinated and timely response of the service. 100% of interviewees (14) reported feeling more confident with positive impact on quality of life and respiratory symptom burden. This was a highly valuable, crucial role sitting perfectly in palliative care.
Qualitative feedback is available with patient stories - these include avoiding hospital admission and management of non-invasive ventilation. At this early stage it is apparent that more capacity is required to provide an equitable service for all patients.
People with neuromuscular conditions experience respiratory difficulties. Access to specialist respiratory community services is inconsistent. A dedicated service for this cohort can have a positive impact in supporting people to manage their symptoms.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.