New network brings Sussex motor neurone disease care into one place for first time

Prof Nigel Leigh, Head of Neurology at BSMS, is Director of the Sussex MND network.

A new network to strengthen integrated care for patients with MND in Sussex is being inaugurated during Motor Neurone Disease (MND) Awareness Month.

Funded by the MND Association, the Sussex network will be the association’s 20th care and research centre (or network).

The Director of the new network and Head of Neurology at Brighton and Sussex Medical School (BSMS), Professor Nigel Leigh, established the very first MND care centre at King’s in 1995.

He said: “By bringing experts working in MND together, we can provide a more patient-focused approach to caring for patients. Patient feedback has shown that their greatest need is for someone to coordinate their care, and to have their needs met as and when necessary. We believe that the network will help the region provide a better integrated approach to care, ensuring that equitable and accessible services are available across the region.”

The network will build on the expertise of existing multi-disciplinary clinics that are already delivering services in neurology, speech and language therapy, occupational therapy, nutrition, physiotherapy and palliative care across the region, and help all health and social care professionals to improve services and support for people affected by MND, especially where there are gaps in local services.

The network will achieve this through educational activities, discussions with patient groups, working with clinical commissioning groups to create new coordinators’ posts, and developing care pathways that will enhance transparency and equity of access.

The network will also coordinate and audit efforts to achieve the standards set out in the recent NICE guidelines on MND care and to acquire feedback on the services from people affected by MND.

Stakeholders in the new network include patient representatives, local MND Association branches, hospital and community health professionals, palliative care and hospice teams, and researchers.

While the primary focus is on care, the network will also provide a robust infrastructure for an ambitious programme of clinical research activities in areas such as epidemiology, neuroimaging, clinical trials, genetics and biomarkers.

Karen Pearce, Director of Care (South) at the Motor Neurone Disease Association, said: ‘We are delighted to launch our 20th care and research network. We know that good research results in good care, and that coordinated care adds further to ensuring people with MND, their carers and families receive the best possible support. This is all the more significant as the launch is during the MND Association Awareness month.”

The inauguration will take place at BSMS on Friday 23 June.

BSMS is a partnership between the Universities of Sussex and Brighton and the local NHS health community.

BSMS identifies research areas in medicine where it believes it can make a rapid and real difference. The focus is on the continuous improvement of medical treatment to deliver more personalised healthcare for patients, by applying basic science to answer fundamental clinical questions.

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Posted on behalf of: Brighton and Sussex Medical School
Last updated: Tuesday, 20 June 2017