HRH The Princess Royal, as Royal Patron of the Motor Neurone Disease Association, visited the Norfolk and Norwich University Hospital (NNUH) today (31st January) to launch the Norfolk MND Care and Research Network. Her Royal Highness met patients, carers, professionals and volunteers from across Norfolk who work to support people with Motor Neurone Disease.
Mrs Sally Light, Chief Executive of the Motor Neurone Disease Association, said: “We are delighted that our Royal Patron, HRH The Princess Royal, has joined us today to celebrate the launch of the Norfolk MND Network, which provides care for people in Norfolk, wherever they live, and makes the vital connection between both care and research into MND.”
Mark Davies, Chief Executive of NNUH said: “We were honoured to welcome HRH The Princess Royal to our hospital, especially as it is almost 14 years to the day since the Hospital was officially opened by Her Majesty The Queen. We would like to thank Her Royal Highness for her words of encouragement and support for this MND Network. We look forward to continuing to work closely with the MND Association, and the other partners in the Network, in helping improve care for people affected by MND across Norfolk.”
Dr David Dick, who is a consultant neurologist at NNUH and has a particular interest in the diagnosis and management of Motor Neurone Disease, has for many years run an ad hoc clinic for patients with this condition. He said: “I have always looked for opportunities to develop the service so the award of Care Centre Status by the Motor Neurone Disease Association and the appointment of a Care Coordinator will allow a long hoped for expansion in the clinical service which will allow us to bring expertise to patients in peripheral hospitals, improve support for patients and their families and establish close research links with UEA.”
The Norfolk MND Care and Research Network is based at the Norfolk and Norwich University Hospital, and is jointly funded by both NNUH and the Motor Neurone Disease Association.
The Network serves the populations of Norwich, Norfolk and Waveney Valley, and operates from three hospitals: the Norfolk and Norwich University Hospital in Norwich, the James Paget Hospital in Great Yarmouth and The Queen Elizabeth Hospital in King’s Lynn, as well as satellite clinics in Beccles and Cromer. Staff overcome the geographic dispersal of people living with MND in Norfolk by rotating between these centres, taking their expertise direct to people living with MND as much as possible.
By attending the event The Princess Royal was recognising the combination of important services which are provided by the Network including care, respiratory management and scientific research.
Dr Mioshi, Professor of Dementia Care at the UEA, said: “It was a privilege to meet The Princess Royal today and to celebrate our involvement in the Network. We look forward to continuing our research and working with the Network to look further at the practical impact of clinical symptoms in everyday life, family carers, and healthcare management, and ultimately improving the lives of people with Motor Neurone Disease.”
About motor neurone disease (MND)
• MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
• It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
• It can leave people locked in a failing body, unable to move, talk and eventually breathe.
• Over 80% of people with MND will have communication difficulties, including for some, a complete loss of voice.
• It affects people from all communities.
• Around 35% of people with MND experience mild cognitive change, in other words, changes in thinking and behavior. A further 15% of people show signs of frontotemporal dementia which results in more pronounced behavioural change.
• It kills a third of people within a year and more than half within two years of diagnosis.
• A person’s lifetime risk of developing MND is around 1 in 300.
• Six people per day are diagnosed with MND in the UK.
• It affects up to 5,000 adults in the UK at any one time.
• It kills six people per day in the UK, this is just under 2,200 per year
• It has no cure.
About the MND Association
The Motor Neurone Disease Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND.
HRH The Princess Royal became our Royal Patron in 2008. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
We improve care and support for people with MND, their families and carers. We fund and promote research that leads to new understanding and treatments, and brings us closer to a cure for MND. We campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society.