People with neuromuscular diseases will have the tools to better manage and live well with their condition. The interactive resources will provide them with a platform to set goals and understand their disorder better by reading about others who have similar conditions.
The NHNN of UCLH is the national centre for people with neuromuscular diseases (NMDs) in the UK which sees patients all over the UK traveling for treatment. NMDs are a group of rare and complex conditions which can be life-long and have pathological characteristics including muscle weakness and wasting. The disorders are often progressive meaning that the condition worsens overtime. Doug Sager, pictured, has a neuromuscular disorder called Charcot-Marie-Tooth. He explains the difficulty he faces in this short video.
Due to the nature of NMDs along with the fact that many patients of the NHNN travel from long distances for treatment, managing the condition can be complex. Gita Ramdharry, Specialist Neuromuscular Physiotherapist at the NHNN says that best practise is to empower the patient to take charge of their chronic symptoms. “This leads to a better quality of life and could reduce reliance on the specialist services that can be far away.”
Bridges self-management resources were developed by Professor Fiona Jones from St George’s University of London to help patients live well with acute and long-term conditions. UCLH Charity funding will mean that the resources will be created specifically for those with neuromuscular diseases. The tools – previously books but now also web and app based, will provide patients with the ability to track their progress and set personal goals.
A key feature of Bridges self-management is patient stories which provide insight into the lives of patients with similar conditions by sharing their experiences, tips and coping mechanisms which provides patients with ideas to manage their own symptoms.
The patients featured in the materials will consist of 20 patients from UCLH who have different types of NMDs, for instance nerve diseases or muscular diseases, such as muscular dystrophy. This wide spectrum of MNDs will mean that a reader is more likely to closely identify with at least one of the patients featured.
The development will take approximately one year and a pilot project will measure the impact for patients and the implications for the NHS. Gita Ramdharry said that if proven successful, there could be potential for a national roll-out. “These materials really have the potential to improve people’s lives through a unique and holistic approach with patients learning from other patients.”