When Leyland nurse Vicky Round heard about the ‘ice bucket challenge’ back in 2014, she was quick to sign up.
Like the many others who volunteered to be drenched in freezing cold water that summer, she wanted to help raise money for research into the terminal nerve disorder motor neurone disease (MND). Little did she know at the time, she was already displaying early symptoms of the condition herself.
Five years later - and now in a wheelchair - she was at County Hall to ask a powerful group of councillors and health bosses to pledge their support for a patient charter drawn up by the Motor Neuron Disease Association.
Fighting back tears, she told of the devastating effect of the disease, supported by her husband Nigel - now her round-the-clock carer. He retired from work ten days before her diagnosis.
“His dreams were shattered, as were mine - I had planned to go on long walks with him and continue working part-time for the NHS,” Vicky said.
“At the moment, I feel very lucky that this disease has not affected my swallowing, speech and breathing.
“I’m at the point now where I need help with everyday activity. From putting me to bed at night, to getting me up in the morning - showering, dressing and feeding, literally everything.
“But I have always been the care-giver and nurturer, so it is totally alien to have to be looked after and something I have to learn to accept,” she added.
Members of Lancashire’s health and wellbeing board sat in silence listening to Vicky’s story and her appeal for them to sign up to the charter.
Eighty authorities around the country have already committed to its five aims, including the right to early diagnosis and to maximise quality of life.
But Lancashire County Council’s cabinet member for adult services, Graham Gooch, was concerned about the implications for the authority of signing the pledge. He told members that County Hall could not be held responsible for the clinical aspects of the charter, but only those relating to social care.
“When we sign up to anything, we’re making a promise - and I think it would be dishonest to make a promise to [influence] something which we know, even as we sign, we can do nothing about,” County Cllr Gooch said.
“MND is a terrible disease - but so is multiple sclerosis and Huntington's. Our promise to the people of Lancashire is that we provide services on the basis of the needs of each individual, regardless of their disease.”
However, Pauline Callagher, who leads the specialist MND nursing service at the Royal Preston Hospital, said that the charter was about collaboration not shifting liability.
“We take our clinical responsibility extremely seriously. We’re asking you to work together with us on that - not take over that responsibility,” she said.
The health and wellbeing board as a whole - which comprises NHS and local government organisations from across Lancashire - agreed to sign up to the charter collectively.
Speaking after the meeting, Vicky said she had just wanted to ensure a “consistency” in the service provided to fellow MND sufferers.
“I’m delighted they signed,” she added.
THE MND CHARTER
The right to an early diagnosis and information
The right to access quality care and treatments
The right to be treated as an individual and with dignity and respect
The right to maximise quality of life
The right for carers of people with MND to be valued, respected, listened to and well-supported