The Health and Social Care (HASC) team at the ME Association is committed to working towards better hospital care for people living with Severe ME. At present, there is only one NHS hospital admission protocol specifically designed for people with Severe ME, developed by the Royal Devon University Healthcare NHS Foundation Trust. While this document provides valuable guidance, it makes limited reference to how the complex nutritional and hydration needs of patients, particularly those who are malnourished or experiencing severe feeding difficulties, should be met.
We are keen to learn from clinical specialists to ensure that we can advocate effectively for improved hospital care. Recently, we met with a Speech and Language Therapist to better understand their role in supporting individuals who experience eating and swallowing difficulties due to fatigue, positioning challenges, breathing pattern disorders, or cognitive impairment. Through this connection, we were introduced to a dietitian with experience in supporting people with ME. We have reached out to them and hope they will collaborate with us to develop a clearer understanding of the role of dietetics in maintaining adequate nutrition and identifying when alternative (non-oral) feeding methods may be required.
We have also learned about the vital role of ‘nutrition nurses' in supporting patients with complex nutritional needs, and we plan to engage with the National Nurses Nutrition Group to gain further insights. In addition, we will be contacting the Royal College of Speech and Language Therapists and the British Dietetic Association to raise our concerns and seek advice on establishing a best practice model.
Ultimately, our aim is to help develop more comprehensive and informed hospital admission guidance that fully addresses the nutritional needs of people with Severe ME. We are committed to ensuring that the experiences of those living with Severe ME, and their carers, are central to this work.
We look forward to sharing more updates as this important project progresses.