NHS North Lincolnshire CCG has agreed to adopt the motor neurone disease (MND) Charter to support local people living with the devastating effects of the condition and their carers.
MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.
Catherine Wylie, Director of Nursing and Quality Assurance, NHS North Lincolnshire CCG, said “Adopting the Charter is a chance to positively influence the lives of people living with MND in our local community.”
“Until there is a cure for MND, what matters most is that people with MND receive the right care, in the right place at the right time,” said Mrs Wylie. “Increasing awareness of the disease can help earlier diagnosis which can support people to live as well as possible for the limited time they may have.”
The CCG joined North Lincolnshire Council in officially signing the Charter at the Civic Centre in Scunthorpe, alongside volunteers from the MND Society, including Mr Charles Dowie, from Epworth, who is living with the condition.
Following the signing of the MND Charter, representatives from the CCG discussed the specific needs of people living with MND with Mr Dowie, who was diagnosed in October 2014 and is learning to adapt to and manage the condition.
Mr Dowie, prior to developing MND enjoyed a full and active military career serving in the army for 33 years and also a successful athletics career as the army’s 200m champion for two years running, before moving onto Project Management.
Charles explained, “Motor Neurone Disease (MND) is a rapidly progressing muscle wasting disease that steals your hopes and dreams for an active and long life. I loved my life of sporting activities – from short fast sprints in athletics to long distance orienteering events and every other sport in between. I particularly loved to ski, but with MND, I can no longer walk unaided and require a wheelchair, and my outdoors sporting life came to an abrupt end with no hope of recovery.”
He added, “However, I consider myself fortunate to have a superb integrated multi-disciplinary team of medical and social care staff supported by the North Lincolnshire CCG. Other people haven’t had as good an experience and my mission now is to make life as near perfect as possible for everyone including the carers, and it will be my remaining life’s work to help achieve that by joining up the services in a way that works for patients.”
Cllr Julie Reed, cabinet member for Adults and Families and Health at North Lincolnshire Council, said: “Unfortunately MND is still little understood and as there is currently no cure, it’s essential that care and support services are readily available.”
Cllr Carl Sherwood, cabinet member for Health and Wellbeing, added:
“I am proud that North Lincolnshire Council is adopting the MND Charter. It is vital that more people are aware of the needs of people with MND so those living with the disease can maximise their quality of life and die with dignity”.
You can find out more about the MND Charter and how you can get involved by visiting www.mndassociation.org/mndcharter.
For further information contact the North Lincolnshire CCG Communications Team on 03300 249301.
Photograph taken at the Civic Centre on 14th June
From left to right:
Cllr Julie Reed, Cabinet Member for Adults and Families and Health
Chloe Nicholson, Head of Quality NLCCG
Catherine Wylie, Director of Nursing and Quality NLCCG
Sarah Glossop, Designated Nurse and Head of Safeguarding NLCCG
Hazel Moore, Head of Nursing NLCCG
Nick Tyson, Visitor with the MND Association
Steve Goulding, Helper to Mr Dowie
Charles Dowie, MND Warrior
Julie Poole, Partnerships and Governance Manager, NL Council
Julie Compton, Campaigns Manager MND Association
Hannah Almey, Volunteer Campaigner MND Association