People diagnosed with a devastating and terminal condition in the Bristol area are now able to access well co-ordinated care closer to home following the opening of a specialist MND Care Centre at Frenchay Hospital.
Motor Neurone Disease (MND) is a fatal and rapidly progressing disease that leaves people trapped in a failing body, increasingly unable to walk, talk or take care of themselves. Half of people die within 14 months of diagnosis. Well co-ordinated care is vital when people have to call on up to 18 different health specialisms to help them manage life with the disease.
Richard Noble OBE, currently preparing for a 1,000mph world landspeed record attempt with his Bristol-based Bloodhound SSC venture, will officially open the City’s MND Care Centre on Wednesday 20 June. Guests at the opening will include people with MND who use the centre.
The centre’s establishment has been made possible through a partnership between the team at North Bristol NHS Trust, led by Consultant Neurologist Dr Andria Merrison, and the Motor Neurone Disease Association, the only national charity in England, Wales and Northern Ireland providing care and support to people with MND, their families and carers.
Frenchay currently provides care for around 90 people living with the condition from across Bristol and the surrounding areas after the designation this is expected to rise to approximately 140.
Previously, people with MND had to travel to London, Oxford or Southampton to receive this level of co-ordination of their care from a multi-disciplinary team (MDT) bringing together a range of health professionals, from neurologists and respiratory physicians to occupational therapists and physiotherapists.
Recognition as a specialist centre has meant that the MND Association has generously provided funding for a full-time care co-ordinator for four years to provide help and support to people living with the condition and their carers and families.
In addition the care co-ordinator will be involved in developing an education programme (for professionals and those who use the service) and develop MND research in Bristol.
The MND Association have also provided funding for both equipment and a respiratory technician to enable the team to perform respiratory function (breathing) assessments for people attending the outpatient clinic in Frenchay at the time of the clinic, rather than having to travel to Southmead Hospital or the Bristol Royal Infirmary for these tests.
Richard, whose mother died from MND and who is a patron of the MND Association, said: “Experience has taught me that whatever the challenge that you’re facing, you are most likely to face it positively when you have the right team around you. The essence of the Bristol MND Care Centre is simple: get the right team working together and no one has to face life with MND on their own.”
Dr Merrison, who is director of the Bristol MND Care Centre, said: “Whilst we are currently unable to prevent MND, there have been enormous advances in managing symptoms and improving quality of life and research holds much hope for the future.
“Establishing Frenchay as a specialist centre is a wonderful opportunity. We aim to promote a culture of clinical excellence; in accordance with the MND Association standards of care and to do this with sensitivity, compassion and kindness.
“We are extremely grateful to the MND Association for their very generous support. North Bristol NHS Trust now has greater resource to provide outstanding care for people living with MND, their families and carers, to support professionals and to develop research locally and nationally.”
Karen Pearce, Director of Care (South) at the MND Association, added: “I have been enormously impressed with the enthusiasm and commitment of the team at Bristol, our 19th MND Care Centre. June is the MND Association’s ‘Month of Optimism’, and there’s no better time to celebrate the centre’s role in helping people live as well as possible in the most challenging of circumstances.”
The designation will transfer to Southmead Hospital when acute services at Frenchay move to the new hospital in 2014.