A redesign has been under way since 2010 at the Lanfine Unit at Astley Ainslie Hospital, which provides care and respite services for people with progressive neurological disorders (PNDs) such as multiple sclerosis (MS) and Parkinson’s disease.
NHS bosses insist the plans to reduce the number of beds from 18 to ten will create a more community-based care system for a larger number of people. It will include an annual fund for breaks for carers as well as a specialist carer support officer.
But frustrated patients say they have been left without suitable alternatives and have now written to MSPs to call for beds to be reinstated.
Leith grandfather Robert MacPherson said the unit had been “a lifeline” after he was diagnosed with MS more than 20 years ago.
Mr MacPherson, 69, said: “It is an utter disgrace that approximately 150 service users and their unpaid carers with some of the highest level of need – plus a waiting list of patients with progressive neurological disorders who will not even be offered an inpatient assessment – are left bewildered and abandoned with no suitable alternative that will provide inpatient assessment and rehabilitation.”
Mr MacPherson, who uses a wheelchair, has visited the unit four times a year for two-week stays during the last 11 years but has recently been told he no longer qualifies for inpatient care.
He said: “They felt the service would be better delivered as an outreach programme, which we agreed with as not everybody wants to be an inpatient.
“But there is a strong feeling that we have lost out due to these plans.
“It’s a centre of excellence, and I cannot praise it enough. These cuts are too extreme.”
Edinburgh Northern and Leith MSP Malcolm Chisholm echoed concerns and promised to raise the issue with NHS Lothian. He said: “It is difficult as there is a whole group of people who have been reliant on the unit in the past. I think there’s definitely a problem that needs to be addressed.”
The redesign followed an expert review and a lengthy consultation with staff, patients and carers over how to meet the needs of a wider group of patients, said Professor Alex McMahon, director of strategic planning and modernisation at NHS Lothian.
Prof McMahon said: “The service previously catered for a group of around 140 people and has been redesigned to meet the needs of around 3000.
“The consultation is complete, the implementation of the recommendations began in 2013 and we are working to ensure patients, relatives and carers are kept fully informed as the changes take place.
“One of the key aims of the redesign, in line with the views expressed in the options appraisal, was to provide assessment and rehabilitation in a more personalised and flexible way, rather than focusing on inpatient care and this new model was designed to reflect that.”