Families at breaking point over adult care blunder

Fife Health and Social Care Partnership had initially said it was waiting on Scottish Government guidance on when it could reopen respite care, however, a letter sent by the Scottish Government to all local authorities stated that adult care could reopen on August 3.

Sandra Bremner runs Nickerian care in Glenrothes, offering overnight respite to clients in Fife and beyond.

She said that many families are feeling the strain of caring for adult children with additional needs.

The provider said a lack of communication had let families down: “These people are being ignored.

“People are getting in touch asking for respite.

“Social workers say they have been in touch with clients throughout the whole of lockdown but we know that’s a lie.

“Some families are trying to find out from the council what’s happening but they’ve heard nothing back.

“I’ve made an official complaint to Steve Grimmond, chief executive.”

With no business coming in, the provider warned that services could disappear from Fife.

“Right now I’m shut. I’m pretty much on my knees. I’ve just paid off five staff ,because, with furlough ending, I’ve got no money at all coming in to this business.

“People keep calling us to ask when we’re open.

“Fife Health and Social Care Partnership say they’ve waiting on guidance from the Scottish Government.

“The Scottish Government said respite care could open on August 3 if it was signed off by the Health and Social Care Partnership.

“No one is taking decisions.

“Because Fife won’t sign us off, it’s stopping other local authorities from using us – I actually have a better relationship with them than Fife Council.

“I know how much people need respite - go without for six month.

“You have elderly people looking after their children in their 50s because they have no choice.

“Someone is going to die, be abused, or become very ill as a result of this.

“We’ve heard stories of people sitting crying at night with the stress.

“If they don’t fix this there will be no respite services for people to go to in Fife.

“They can open the pools, the pubs, and the hotels, but why not respite?”

Fiona Mckay, Head of Strategic Planning, Performance and Commissioning, Fife Health and Social Care Partnership, said:

“We understand this has been an extremely challenging time for many families and carers of adults who use our day services, which were closed at the start of the pandemic.

“We received information from Scottish Government on 3 August outlining that services could open in accordance with local public health, where it is safe to do so and we have been working in partnership with the local Public Health team to prepare for the safe opening of day and respite services.

“Following on from the service specific guidance issued on 31 August, the local Public Health team has approved the risk assessment for day and respite settings, which ensures that we continue to manage and support the safe return of any individual to a service.

“Services may look different, and all providers will need to complete the risk assessment to ensure we support the people of Fife to be as safe as possible and minimise the risk of the virus spreading to vulnerable members of our community.

“The risk assessment will need to be approved by the Partnership and Public Health before services can resume.”

A Scottish Government spokesman confirmed that respite care had already been given persmission to reopen on August 3.

The spokesperson said: “We recognise how important day services are for people who receive support and for their unpaid carers.

“Some day support has remained open throughout with appropriate physical distancing and hygiene measures, and other services have re-opened or are providing support in a different way, including online or through activity packs.

“Ministers wrote to all local authorities on August 3 to confirm that registered building-based adult day services and dedicated overnight respite can reopen, subject to risk assessment in line with existing guidance and agreement with the Care Inspectorate and local Health Protection Team.

“Guidance on reopening of school age childcare services was published in July and we also published guidance on 31 August to support the reopening of adult day care services.”

We need care. Respite gives us a chance to breathe

Andrew Donaldson (66) and his wife Gillian (63) care full time for daughter Beverley (37) after she had a traumatic brain injury in 2000.

As a result, Beverley has severe mobility issues and needs full time care to help with most things.

“We do need respite care,” said Andrew. “It can be hard work looking after someone 24/7, respite gives us a breather.

“Stress is the biggest problem. She needs to get away too, being in the house all the time is difficult for her.

“I have heart problems, and my wife has functioning neurological disorder and is almost in a wheelchair herself.

“I can’t do everything for Beverley, but I’m trying.

“We’ve had no indication of when we’ll be able to get respite care. We’ve been trying to find out but we’ve given out as we were just getting nowhere.

“The system’s just not working.

“If Nickerian were unable to take her, no one else can as they won’t have the facilities.

“They’ve been all set up ready to open, but they haven’t been given permission.

Norrie Finlayson (54), has been looking after his son Ryan (23), who has cerebral palsy.

“It’s nice to get time away. I’m more fortunate than others, as I’ve got my wife and we have support from family. Others might not have that.

“It’s not easy, but we just get on with it. He can be quite heavy, but we have specialist equipment to help us.

“People need breaks.

“I think it has affected Ryan, he’s a different person. There hasn’t been the same structure.

“We tried to get out during lockdown but there were very few places to take him.

“He needs to get away and be in the company of someone else.

“Before he was meeting people and seeing different things, but now he’s just stuck at home all day with mum and dad.”

Another parent, who asked not to be named, also has an adult son with cerebral palsy.

The parent told the Press: “He can’t walk or talk, he needs care 24 hours a day, seven days a week.

“He used to get more help but my partner died so it’s just us.

“It’s hard going. For 12 weeks I’ve been looking after him myself, one day just ran into the next, it was the same very day.

“We get 34 days’ respite care a year. I’ve lost days, I’d booked before lockdown and I’m told that we won’t get those days back.”

The parent said that there had been a lack of communication from the authorities regarding a return date.

“We’ve had nothing at all.

“I think it’s affected his mental health. He’s had seizures, one per week. That’s not like him.

“He’s always been very sociable, but imagine just being stuck at home with a parent – it’s not much fun for him.”

“Leonard Cheshire and RNIB have been really supportive throughout all this.

“It seems the authorities in Fife are just dragging their heels, and the communication hasn’t been great.