A Wisbech man fighting to remain in his own home after the NHS refused to pay for individual care is being backed by a national charity.
Lee Thorne (45) has a severe form of Facioscapulohumeral (FSH) muscular dystrophy and is now permanently ventilated after he suffered a respiratory collapse in July.
He now faces having to live in a care home for the rest of his life as the NHS won’t pay the higher costs of him living at home in Victoria Road, where he had lived for 13 years. The cost to keep Lee in the care home is £1,800 per week, compared to the £5,000 cost of him living at home.
The Muscular Dystrophy Campaign is backing Lee’s fight and said its advocacy service has already managed to overturn rulings in similar situations.
Nic Bungay, director of care and information for the charity, said: “A decision that will fundamentally affect Lee’s future – confining him to a residential care home for the rest of his life – has been made without his full involvement. The NHS has a responsibility to behave appropriately and transparently with those in its care.
“Lee has already been hit by a painful and debilitating condition and this situation is causing him additional stress and misery. We are working with Lee to try to find a workable solution and to get him home.”
Lee contacted the Citizen after his appeal was rejected and is trying to bring as much media attention to his plight as possible.
He said: “They have based their decision on cost and not taken into account my human rights, my right to independence, my right to a family life. I used to go out for the day, used to be able to just do things on a whim. But instead of living at home – and the word is living – I’m existing in a care home.”
Lee’s former carers Christina Morgan and Wendy Trower are his firm friends and waiting for the day they can work with him again. Wendy called the situation “disgusting” and said she feared Lee would give up.
Wednesday was the first time Lee had been out of the care home since January, with the exception of hospital appointments, a devastating blow for someone who was so independent.
A spokesperson from Cambridgeshire and Peterborough CCG said: “Cambridgeshire and Peterborough CCG cannot comment on individual cases due to patient confidentiality. Patients’ continuing care needs are continually reviewed to ensure the care provided best meets the patient’s needs.
“We make every effort to try to help patients stay in their own home but have to ensure the highest level of care and safety can be assured at all times. The CCG must follow the criteria for funding as set by the Department of Health and outlined in the National Framework for NHS Continuing Healthcare.”