MS sufferer from West Lothian fears new Scottish Government care guidance will send him far from home

John Findlay’s options are narrower because he’s 58 – too young for many homes

Multiple sclerosis sufferer John Findlay has been stuck in hospital for the past five months and is desperate to move into a suitable care home.

He would like it to be as close as possible to his wife and family and friends in Fauldhouse, West Lothian, but is ready to accept one within a reasonable distance. However, John, whose brother is former Lothian Labour MSP Neil Findlay, is just 58, below the age threshold for many homes.

And new Scottish Government guidance designed to speed up discharge from hospital means he could end up having to go to a home far away from his family or one whose standards are so poor no-one wants to go there.

John Findlay (left) with his brother Neil, former Labour MSP for Lothian.

Neil Findlay said: "John has had MS for about 30 years. He was getting care at home, but it became too much. He went into hospital seven months ago with a view to going into long-term care when he was discharged. That was obviously a difficult decision for him to make, but he needs 24 hour care now.

"He has been in hospital since the summer and is looking to come back to his own community if possible because that's where his social support is, where his pals are, where people will visit him and take him out, but there are no care places available. He's down on the list for the care home where my mother is, but he's something like number seven on the list. He's willing to accept other places, but there's new guidance on discharge of hospital patients to care. It says, quite reasonably, that patients don't have the right to stay in hospital waiting for the care home of their choice – it costs £4,000 a week for someone to be in hospital. So it's saying they've got to be willing to accept other places.

"That's bad enough when you're over 65, but it's worse when you're younger because many care homes won't take under-65s, so the pool of places you can choose from is much, much reduced and it potentially ends up forcing people either to accept a care home that is very far away from their social network, from their community and people they know, or it will be a care home that has vacancies because of the poor quality standard of care they provide. The whole ethos of the health service is supposed to be patient-centred care, it's supposed to be all about co-decision-making and putting the patient at the centre. But where is that in this situation?

"Meanwhile, John remains in hospital. He desperately wants out to somewhere where he has a bit of privacy, his own space, where he can have a bit of a life, where people know and care for him, but no place is available."

He said John cannot walk, uses a wheelchair and needs help eating but is mentally fine.

"He's been ready to leave hospital for about five months. The situation is very upsetting for him and for his wife and family. He has been fortunate that he has a wide circle of friends who have visited him and been there to try and keep his spirits up, but that's a long time to be in hospital when you don't need to be there."

John's case was raised at First Minister's Questions by Lothian Labour MSP Foysol Choudhury, who quoted from the new guidance, which says: “Where the preferred choice(s) of care home is not immediately available the person will be required to make a temporary ... move to another home with a suitable vacancy to wait.”

Mr Choudhury said the guidance could mean people having to take places in homes a long distance from their own community or one with a poor record of care. And he asked: “Will the First Minister tell us how that is putting patients at the centre, and why people like John are denied their rights because of the Scottish Government’s failure to deal with social care?”

Nicola Sturgeon said she would be happy to respond in more detail if Mr Choudhury sent her details of the case. But she said: "No one should be denied their rights or forced into a place that is inappropriate for their needs." She said work was under way to gain a better understanding of care homes data, not just the total number of places available but the type of care that individual care homes were offering. "These issues are complex but important and, as we continue to reform health and social care and better integrate it to ensure that people get the care that they need in the best place, we need to continue to grapple with those issues to get the right outcome."

Neil Findlay said Mr Choudhury had sent Ms Sturgeon details of John's case, but no reply had been received yet.