In June we hosted the second MND EnCouRage UK event for early career researchers (ECRs) which aims to support them to continue working in the field of MND. The event included lots of talks and workshops from senior researchers to provide tips and advice on moving forward in their careers and help them to develop new skills in areas like presenting their work to non-scientific audiences. We also challenged the ECRs to write a blog to explain their research to the MND community. This guest blog is from Charlotte Massey, one of the ECRs who came to the event this year.
My name is Charlotte and I am a specialist physiotherapist who has worked within the field of MND and neuromuscular disease for many years. Prior to starting my PhD, I worked as the lead physiotherapist on the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, part of UCL centre for neuromuscular diseases in London. As part of my role I, alongside a speech and language therapist colleague, set up the first specialist clinic in the UK to manage cough and secretion issues for people with neuromuscular disease. Over 50% of the patients attending this clinic were people with MND. Within this clinic we were able to provide specialist advice, management and care plans to support people with cough and secretion issues.
My PhD project
Saliva, secretion and cough issues are common for people with MND and these have a profound impact on quality of life and can also impact the ability to tolerate other interventions such as non-invasive ventilation. My experience working on the ward and in our specialist clinic has enabled me to be able to see, first hand, how these issues impact patients and has made me passionate to find better care solutions.
It is well known from previous projects involving people with and affected by MND, that as the disease progresses people with MND find it harder to access care in specialist centres due to physical and respiratory issues and distances needed to travel. During the COVID-19 pandemic this became even more apparent as people with MND were encouraged to shield. Within our clinic we had to find different ways of working to be able to provide the care and support people needed which included consideration of remote monitoring and linking in with community therapy colleagues. Community therapists often see a wide variety of patients and reports from these therapists and research tells us that that they often lack the specialist skills and knowledge needed to manage rare, complex, progressive neurological conditions such as MND. This led me to think about other ways to support and provide the best possible care.
The project aims to work with healthcare professionals, people with MND and their care givers to co-design a tool, using telemedicine (technology that enables healthcare professionals to monitor people’s health from afar). The new tool will support cough and secretion management.
It will be split into 4 parts:
[toggle title=”Survey and focus groups”] A survey and focus groups of healthcare professionals to understand their perspective of current cough and secretion management in people with MND and how it could be improved.[/toggle] [toggle title=”Interviews”] Interviews with people with MND and their caregivers to understand their perspective of the current support for cough and secretion issues and how they think it could be improved. [/toggle] [toggle title=”Co-designing a new tool”] Co-design of a tool that uses technology to support cough and secretion management. The co-design will involve people with MND, their caregivers and healthcare professionals. [/toggle] [toggle title=”Pilot testing”] A small pilot study of the co-designed tool in clinical practice to show whether it is user-friendly for people with MND and healthcare professionals. [/toggle]The main aim of this project is to develop a tool which can be used to support the management of cough and secretion issues. The tool itself will be informed by people who will be actively using it and therefore it will be designed with the end user in mind. The tool will benefit both people with MND and their caregivers and healthcare professionals caring for them by providing a way for patients to share and manage their symptoms at home and to support healthcare professional decision-making regarding management of these issues. Hopefully this will support people with MND to have the best care in the place they would like it.
If you are a healthcare professional in the UK, who supports people with MND to manage cough and secretion issues, and want to get involved in the first phase of this study please click the button below to find out more.
We would like to thank Charlotte for taking the time to write this guest blog about her work and also thank everyone involved in making MND EnCouRage UK 2023 such a success.
