16 September 2024 News

Image Speaks at the launch of the latest MND Association Care Centre and Research Network

The MND Association has made a four year funding commitment to an MND Care and Research Network across South West London and Surrey to improve support for people affected by MND, in partnership with the NHS. 

The joint venture will build on the success of St George’s specialist MND clinic, based in the Atkinson Morley Wing of St George’s Hospital, Tooting, which has been running since 2017.  

The launch of the Network will mean improved support and co-ordination of services for approximately 180 people living with motor neurone disease in South West London and Surrey.  

It brings the number of MND care centres and research networks across England, Wales and Northern Ireland to 23 representing an annual commitment by the MND Association of £1.6 million. 

Kuai Peng is a carer for her husband KT, who was diagnosed in 2015. She said: “I am delighted to see the MND Association, and the NHS have opened a new care centre and research network in our area.  

“Coordination of care for people with this disease is vital, as is communication and continuity between different clinicians and departments.  

“Spending less time on health appointments, factoring in the difficulty in travel that is required to attend them, means you have much more time for other things.  

“Caring for someone with MND is not always easy, so to have this support is brilliant and I hope it will benefit many families who use the service in the future.” 

The network launch will see an MND Care Co-Ordinator, based at St George's Hospital, Tooting, become the single point of contact for people with MND, ensuring a joined-up approach to individual care plans and signposting to extra support for them and their loved ones.  

Image Dave Setters with Pablo Garcia-Reitboeck and Niran Nirmalananthan

Without this role, the complexities of the disease mean people affected by MND can be in touch with numerous healthcare professionals at any one time, which can be overwhelming and exhausting.  

The Co-ordinator will link in with eight community MND multidisciplinary teams, eight hospices and eight district general hospitals in the area, supplementing the care already provided and enabling the development of the network over the next four years. 

Claire Bickley, Head of Regional Services and Partnerships for the South East at the Motor Neurone Disease Association, said: “We are delighted to launch our latest care network, the first of its kind in six years, in partnership with the amazing team at St George’s. 

“With the geographical catchment area of the clinic increasing in the last two years, it is vital every person with MND in the region receives the care they need and deserve. 

“This includes support as close to home as possible with access to specialist advice for diagnosis, symptom management, genetic testing and clinical trials as appropriate.” 

As well as offering specialist clinical care, St George’s supports people to take part in MND research. Since 1990, the MND Association has developed 23 MND Care Centres and Networks across England, Wales, and Northern Ireland.

They focus on improving the support and co-ordination of services for people living with MND and developing partnerships between health, social, research and voluntary organisations.  

Dr Clare Galtrey, a neurological specialist in MND and joint Clinical Director, said: “This role will provide a single point of contact to improve patient experience and provide coordinated, proactive community care, while ensuring people stay safe at home. 

“We want to enhance the quality of life of people with MND and their families through self-management and empowerment while identifying gaps in support.” 

To read more about the MND Association’s Care Centre and Network Programme, please click here.