'I have lost care support because of coronavirus'

Fern used to live independently with the help of a care package

By BBC Disclosure
BBC Scotland

Fern Adams is one of thousands of Scots who have lost their home-care support during the coronavirus crisis.

The 26-year-old used to have a team of carers who came into help her four times a day but since lockdown she has had to move back in with her mum, a two-hour drive away.

Fern says she has lost her independence and she now spends 23 hours a day in bed. She is worried about her future once the pandemic subsides.

A BBC Disclosure investigation found that many of Scotland's health and social care partnerships have made large reductions in the number of clients who have home care packages, as they concentrate resources on those who they say are in most "critical need".

Fern has a number of complex medical conditions that affect her autonomic nervous system. These cause her a lot of pain and fatigue, and affect her ability to stand or even sit up.

Fern used to live on her own with the help of a care package

She can't stand long enough to make meals or a hot drink, but her carers used to help her with that - getting her washed and dressed, preparing her meals, even opening and closing the curtains.

Before lockdown she lived in her flat in Clydebank. She had an electric wheelchair to get around and carers who would come in to help as part of a 36-hour-a-week package of home-care support.

Fern says that a week before lockdown her care provider sent a text to her mum, Jenni Foote, to ask if she could take over and when she could start.

Her mum lives near Oban, almost 90 miles away, and her house isn't suitable for Fern's wheelchair or other needs.

Fern could not bring her electric wheelchair to her mother's house

"Nobody's actually been in direct contact with me at all about it yet, other than through my mum," says Fern. "That's four weeks in now. It was all very quick and sudden. So much so I completely got my packing priorities wrong, and have turned up with loads of books and no clothes."

They couldn't arrange for Fern's electric wheelchair to move with her, so she is back to trying to use a manual one, which is very tiring for her.

In her new remote location Fern has found it difficult to get the specific drugs she needs and without her specialised mattress has developed pressure ulcers.

She says the change has made her feel vulnerable.

"I think what's frustrating with this, is the system, and the fact that it can just collapse," she says.

"Other people can control what my life looks like, so if care stops, that will affect how my life looks. If I have a fantastic care package and really good carers, I could have a really quite a good life. But I'm not in control of how that happens, or if that happens."

She adds: "I don't really feel I'm living at all. It's kind of just getting through the basics of being alive from day-to-day, and that's it."

A BBC Disclosure investigation has found many thousands of people across Scotland have lost their home-care support during the coronavirus crisis. Many others have had the level of their support dramatically reduced.

Home care support for elderly, disabled and other vulnerable people across Scotland is managed by 31 Health and Social Care Partnerships (HSCP), which are run jointly by local authorities and health boards.

Disclosure contacted all the HSCPs to ask about the number of home care packages they had in January and how many in April.

Fern is living with mum Jenni

The picture across the country is stark. Of the 23 who responded, the largest reductions in clients and home-care visits are in Glasgow (34% - 1,884 clients) and Inverclyde (27% - 4,589 visits).

West Dunbartonshire HSCP, which managed Fern's care, has reduced the number of people receiving home-care by 284, almost 20% of its usual numbers.

It told the BBC: "Any temporary changes in care as a result of this challenging and unprecedented situation are optional and are only made after consultation with, and agreement from, residents and their families, and only where the alternative was considered to be in the resident's best interests."

Glasgow, the largest health and social care provider in the country, has sent letters to 1,600 clients saying it could no longer support them as it was concentrating resources on "critical care" for the most vulnerable service users.

A third of the elderly and disabled people in the city who were receiving home-care visits no longer are.

Glasgow HSCP says it is running at a reduced capacity of almost 40% in its care staff due to illness and others being in self-isolation.

It said that the families of those whose care has been suspended were contacted to ensure they were supported in other ways.

Other HSCPs said they had reduced their services to meet critical need only and because more families were able to assist with the care of their relatives.

Tressa Burke, from the Glasgow Disability Alliance, says the virus has made disabled people's lives significantly harder

The Glasgow Disability Alliance (GDA) is concerned for its members. Chief Executive Tressa Burke says the virus has made disabled people's lives significantly harder.

"The impact of the virus, of Covid-19, on the lives of disabled people is absolutely devastating and what it has done has supercharge the already existing inequality that disabled people are experiencing in their lives across a range of areas," she says.

She said that asking families to step in was not a proper solution for many people receiving care and that help with personal care, meals and medication was in some cases "a tall order".

Ms Burke said: "Social care is usually something that people have training and experience in. Some people's families and neighbours may themselves be socially isolating, they may be people who should be shielding, they may be people who are themselves vulnerable to the worst impacts of the virus."

A survey of thousands of its members in Glasgow found the virus was having an impact on the levels of social isolation that disabled people feel as well as negative impacts on their mental and physical well-being.

Disclosure: Pandemic Frontline is on BBC One Scotland at 20:30 BST on Monday 27 April and on the iPlayer.

Changes to care packages. . .

Figures supplied by Health and Social Care Partnerships. Numbers can fluctuate from month to month because of changes in circumstances and personal choices.