Disabled people have been left feeling abandoned after being told that essential care packages would be suspended with immediate effect due to staff pressures resulting from the coronavirus epidemic.
Those who spoke to The Ferret about the “distressing” and “incredibly serious” cuts to services included Maria Quinn and her now-wife Susan McKinstery, who featured in our Just Surviving series with HuffPost UK last December.
The Glasgow-based couple, who got married last Friday, were told on Thursday afternoon that Quinn’s package of social care, which included help to get in and out of bed, dress and shower, was being suspended that evening.
She uses a wheelchair and has a range of both physical and mental health conditions. Her new wife, who has spina bifida, and also uses a wheelchair, is not physically able to offer personal care.
Quinn’s care had recently been reassessed by Glasgow’s Health and Social Care Partnership and she had been told the two daily visits would increase to four. Instead they have been indefinitely cut to zero.
The Ferret also heard from another Glasgow woman whose 84-year-old mother has skin cancer, limited mobility and uses a zimmer frame. She had her support cut on Friday from four daily visits to zero the following day. The family, several of whom were self-isolating, were given nine hours notice.
Glasgow Disability Alliance said it was aware of several others who had seen support packages reduced or cut to zero and raised concerns that disabled people were “invisible” in the midst of a crisis, which put lives at risk.
Glasgow City Council says it has been forced to suspend services due to the number of its staff now self-isolating and has put an appeal for volunteer social carers to step forward.
But Susan McKinstery said she was “completely blindsided” to receive a call, as she prepared for her wedding the next day. She was informed her partner’s support was to be completely suspended that day.
“I phoned Maria’s sister first to let her know what had happened and then I collected my thoughts a bit and called back to explain our situation,” she added. “I am disabled and I can’t step in and do Maria’s care.”
Last time I wasn’t able to be showered I ended up getting a bacterial infection. I have reduced lung function and asthma. There are lots of reasons why I am high risk. I would have thought that was a reason to give me more support. Maria Quinn
Quinn added: “Last time I wasn’t able to be showered I ended up getting a bacterial infection. I have reduced lung function and asthma. There are lots of reasons why I am high risk. I would have thought that was a reason to give me more support.
“We’ve been told the service available now is just “life and limb” which as I understand it means someone who needs help to eat and so on. But it seems so short sighted.
“We know we are not alone. Our care workers have had their lists cut and they are worried sick about how people are going to survive.”
The wedding went ahead at home with close family present and was described by the couple as “a bright spot amongst the chaos”.
But when it was over Susan picked up a message on her phone from her own care manager advising her that though her support would continue for now, it was also subject to being cut.
After long consultations with family the couple’s 17-year-old niece has moved in to help care for them. But it’s had a dramatic effect on both of the women.
“I can’t even describe the overwhelming feelings,” said McKinstery. “My anxiety is through the roof.”
Quinn added: “I’m in a semi-constant panic and I’m disassociating. We are just married and yet we can’t stop crying. It seems to me that what this will do is mean that more people will end up in hospital at a time when the system is least able to cope.
“I am desperately worried about the critical frailty scale – even if I don’t get coronavirus if I end up in hospital will I be able to get the treatment I need? It feels to me that this comes back to money.”
Only hours of notice
Their experience was echoed by Rose, who has mental health issues and cirrhosis of the liver, which means she is immune compromised. Her sister was contacted just hours before her 84-year-old disabled mother’s care package stopped.
She said: “My sister does additional care for my mum on a Wednesday, Thursday and Friday but she has a disabled husband too so she can’t do any more. My brother usually stays with my mum over the weekend but he was self-isolating [with symptoms] so he wasn’t able to.
“I usually see my mum socially – but I have physically and mental health issues so I’m not able to help with her care – and I am immune compromised so I’ve been told I’m high risk.”
In the end Rose was forced to abandon plans to stay at home and come to her mum’s aid, sharing tasks with her sister. Her brother has since finished his isolation period and moved in, but he has never done any of her mother’s personal care, leaving the family unsure what to do for the best.
“My mother is very upset and distressed,” said Rose. “On Saturday and Sunday morning she was physically sick and when I went round to cook her a meal on Sunday she couldn’t eat anything. She was a carer herself for 15 years and she can’t understand it.”
Family members are frustrated and upset that they were not consulted, or that services were not more considerately phased out.
“It couldn’t have happened at a worse time for us because my brother was self-isolating,” added Rose. “They maybe assumed he would be coming that weekend but if they’d spoken to us first they would have realised that was not the case.”
We are hearing from people needing essential shopping and medication and not getting access to this at all. There’s a real lack of communication and information too for disabled people. Tressa Burke, Glasgow Disability Alliance
Chief Executive Tressa Burke said Glasgow Disability Alliance was working round the clock to contact all 5,000 of its members and finding that many felt they had been abandoned by services after cuts started without warning last week. It is committed to ensuring people now get support.
“We’ve found that there have been lots of cuts to social care and packages because Glasgow has moved to providing substantial and critical care to just critical,” she said.
“We are hearing from people needing essential shopping and medication and not getting access to this at all. There’s a real lack of communication and information too for disabled people. One massive issue is that lots of people have no access to broadband or IT equipment.
“People are reporting isolation and loneliness escalating to extreme fear and anxiety and that’s partly because they have only heard from us. People have expressed such gratitude to us, because it feels like no-one else is looking out of them.
“We spoke to some yesterday and she has mental health issues anddisabled had been trying to get her psychiatrist and her CNP on the phone and it was just ringing out. It’s awful.
“No-one can get through to anyone. Services appear to have disappeared and then people who are in vulnerable groups are being putting more at risk because they have to step up and care from their families.
“Local services are being cut and responses might just miss disabled people out because they are otherwise so invisible.”
It’s desperately concerning in terms of the spread of the virus but it’s not necessarily the virus that is going to kill people. It’s going to be the absolute failure to provide people with the support they need. Sally Witcher, Inclusion Scotland
Dr Sally Witcher, chief executive of Inclusion Scotland, said she understood that issues were widespread across Scotland and said lives were being put at risk.
She added: “It seems there is no contingency planning. Family carers are under-supported at the best of times and now we see even greater reliance on them being required.
“What is going to happen if they get ill? There are so many implications in terms of what is happening and none of it is being adequately communicated. It’s desperately concerning in terms of the spread of the virus but it’s not necessarily the virus that is going to kill people. It’s going to be the absolute failure to provide people with the support they need.”
She claimed social care had an important preventative function which did not seem to be being heeded and could lead to an even greater demand on health services.
“The amount of distress, suffering and desperation that is being inflicted on people is alarming,” she added. “The shortage of social care has been a longstanding problem for years and this situation is now exacerbating it. More than ever we need to look at this extremely seriously now.”
A spokeswoman for Glasgow’s Health and Social Care Partnership said: “Unfortunately, in these most challenging and exceptional circumstances, we are being forced to make some very difficult decisions.
“Our staffing levels are currently reduced, due to people self-isolating and we must target our limited staffing resources on providing support to Home Care Service users with the most critical need.
“We are also having to provide support for patients being discharged from hospital to free up beds for people affected by the virus.
“We understand that this situation is far from ideal and is concerning for families. We apologise most sincerely for this unprecedented interruption to care and support. It is not something we would want, but it is unavoidable while we help to tackle this public health emergency.”
A Scottish Government spokeswoman confirmed it was working closely with NHS Boards and local authorities to scale up social care services to meet the additional demands. “This includes additional funding to support agreed local plans,” she added.
“The care at home sector is vital to the wider health and social care system and it is essential it continues to function in an effective way so that communities remain supported.”