gRoWe

• Research type

  Research Study

• Full title

  Understanding experiences of receiving care in Motor Neurone Disease (MND): a national study-gRoWE

• IRAS ID

  365905

• Contact name

  Eneida Mioshi

• Contact email

  e.mioshi@uea.ac.uk

• Sponsor organisation

  University of East Anglia

• Duration of Study in the UK

  2 years, 10 months, 16 days

• Research summary

  Motor Neurone Disease (MND), is a progressive condition that affects many parts of the body. Over time, the nerves that control movement stop working, leading to increasing muscle weakness. This can affect a person’s ability to walk, speak, swallow, and eventually breathe. Around half of the people with MND also experience changes in their thinking or behaviour, and about 15% develop a type of dementia called frontotemporal dementia.
  People living with MND and their families often face emotional, psychological, and social challenges, including anxiety, depression, and significant strain on carers. The disease progresses quickly, as such, people with MND need timely, well-coordinated support from many different professionals.
  In the UK, the National Institute for Health and Care Excellence (NICE) provides guidance on how MND should be assessed and managed (NG42). To help deliver this care, the MND Association funds a national network of MND Care Centres/Networks. These services play a central role in confirming diagnosis, coordinating care, and bringing together health, social care and research.
  There is limited research evidence of the experiences of care received by those affected by MND – people living with MND, and their family members. Additionally, despite the wide reach of MND Care Centres/Networks across England, Wales and Northern Ireland, there is, to date, very little understanding of how MND care is received and experienced at a national level. This current study aims to understand the experiences of people affected by MND in receiving care based on the NG42. Identifying what helps and what hinders the delivery of high-quality MND care will enable the MND Association to work more effectively with partners and promote good practice.
  

• REC name

  West Midlands - Coventry & Warwickshire Research Ethics Committee

• REC reference

  26/WM/0037

• Date of REC Opinion

  17 Mar 2026

• REC opinion

  Further Information Favourable Opinion