“You have to wonder who else is also missing out”: Care services and the Coronavirus

“Hundreds of thousands of people throughout Scotland rely on home care, for various needs and conditions, not just dementia. My mum is just one. If carers aren’t being fully looked after by the government at a time like this, who is?”

SINCE the scale of the Coronavirus pandemic became clear across the UK, various measures have been taken – at a UK, Scottish and local level – to maintain the delivery of vital services and reassure the public that such services would continue wherever possible without disruption.

Chiefly, attention has been paid to those services upon which all of society relies – primarily the NHS, police, firefighters and the adequate supply of food and necessities. However, there remain a host of services which certain sections of our society require, and are arguably no less essential to their daily lives.

Amongst these services are those which provide care for people living with dementia. Since last week, the Alzheimer’s Society has been providing updated information for those affected by dementia, which emphasises that those living with the condition are at higher risk of severe illness if they catch the Coronavirus. While the Alzheimer’s Society helpline remains open, an emergency appeal for donations is underway.

Those living with dementia and related conditions may find it difficult to follow government-issued precautions for avoiding the Coronavirus, such as washing their hands regularly, and in some parts of the UK, some have already taken action to help: today (25 March), the Guardian reports that a group of care workers in Sheffield have left their families behind to move into a specialist care home for those with dementia, so that they can better support vulnerable residents during the pandemic.

However, despite care workers being listed among those that the UK Government considers essential to Coronavirus efforts, such levels of care may not be universal.

Last week, Source was contacted by an affected individual living in Scotland who revealed that a home care service available to Edinburgh residents through the NHS – a service their mother, who lives with dementia, relies upon for daily visits – has been cancelled in the wake of the pandemic.

The individual, who spoke to Source on condition of anonymity, explained their situation:

“My mum is 73 years old. She has dementia and lives alone in Edinburgh. She can mostly cope on her own, but the coronavirus situation has changed everything.

“Up until last week she was getting a visit every morning from an NHS home care service. The carer would stay for ten or fifteen minutes, chat to my mum, check the house was safe and in good order, and make sure she took her dementia medication. It was a quick visit, but it helped structure my mum’s day and reassured her friends and family that she was coping OK.

“But at the start of last week, the people who run the care service told me they were going to cancel the visits, effective immediately, because they had to scale back to ‘life and limb’ care, meaning the carers were only going to visit those patients – or ‘clients’ as the service calls them – that literally can’t get out of bed or feed themselves with help.

“On one hand I can completely understand that – resources are tight and they must be focused on those most in need. I also have concerns about carers travelling about Edinburgh during quasi-lockdown, visiting people who are likely to be in high risk categories, and potentially acting as unwitting transmitters of the virus.

“At the same time, my mum is vulnerable. She’s now pretty much totally on her own. I don’t live in Edinburgh, although other family members do. We call constantly, as do her friends. We drop hot meals off outside her house. We make sure she is as safe as she can be. Her neighbours are really thoughtful too. But the fact the care service cut back their visits so rapidly is worrying.

“Things are only going to get harder in the weeks to come. How limited are care resources in Edinburgh? Are care staff – who are putting themselves on the frontline of this crisis – getting the support they need? What measures are Edinburgh City Council and the Scottish government taking to ensure that frontline care staff are safe and supported?

“Hundreds of thousands of people throughout Scotland rely on home care, for various needs and conditions, not just dementia. My mum is just one. If carers aren’t being fully looked after by the government at a time like this, who is?”

Asked if their family had been given any guidance by the service provider on what to do in its absence, or if they were pointed towards any voluntary organisations that might provide an equivalent service, our source replied: “No, we were not offered any guidance or any alternative services.”

Source approached Edinburgh City Council for any information they could offer on what services in the capital had been rolled back due to the ongoing pandemic.

Responding, Judith Proctor, Chief Officer of the Edinburgh Health and Social Partnership, said: “Covid-19 presents significant challenges for us all. This includes how we deliver health and social care to people in the community. At the moment, the Edinburgh HSCP senior management is working extremely hard with its partners, the City of Edinburgh Council and NHS Lothian to plan for any impacts we might see in Edinburgh. 

“I’d like to reassure people that along with these partners and a wide range of voluntary and community organisations we’re looking at other ways we can provide support for people if that is what we need to do. We know that individuals and their families will also be thinking about what plans and support they can put in place and that is sensible.

“We’ve already made the very difficult decision to close day centres and day hospitals and in our care homes we are practicing physical isolation for our residents. There will likely be some other changes to our services but we will do our best to communicate them as clearly and as quickly as we can. We continue to do our utmost to care for those with the most critical needs in care homes and in the community within the available guidance from the government. We would really appreciate the understanding of the public just now as we all face an unprecedented situation.”

While Proctor’s comments provide some details of services that have been curtailed due to the Coronavirus, it does not address the Edinburgh service in question other than a vague reference to how the care is delivered to those in the local community. Beyond appealing to the public’s understanding and pointing towards government guidance, no more specific advice is given.

Responding to a further query from Source, a Scottish Government spokesperson offered the following comment:

“The Cabinet Secretary for Health and Sport Jeane Freeman has assured local authorities that the additional financial support they need to scale up services to meet the clear additional demands arising from the current situation will be met by the Scottish Government.

“The care at home sector is vital to the wider health and social care system. It is essential that it continues to function in an effective way so that people and communities are supported in the right way.

“Extensive work is underway with our partners to put in place arrangements to increase social care workforce capacity. This includes additional expenditure from Scottish Government for local authorities to maximise the care available to our communities. Local authorities will still be expected to do as much as they can to meet people’s needs, with appropriate safeguarding measures in place.

“As a consequence, the Cabinet Secretary would not expect to see significant reductions in care packages currently provided to those who need them.”

This comment would seem to suggest that “additional financial support” should be available to continue the kind of care services which our anonymous source has seen rolled back. Furthermore, Freeman’s expectation that such “significant reductions” would not transpire indicates that she and the Scottish Government are as surprised by the removal of this service as anyone.

In the midst of a crisis however, expressing confusion in the face of testimony is insufficient. Some might even find it more outrageous that such a vital service has been withdrawn at this time, and that the Scottish Government do not appear to be aware of it.

Asked if they felt Edinburgh City Council and the Scottish Government had provided enough detail to the public regarding what services were being rolled back during the crisis, the individual who first contacted Source said: “They certainly haven’t offered enough info about how home care services for the elderly and those with infirmities are being rolled back, no. There should be a mass advertising campaign at least. Their response, generally, looks ad hoc and a bit panicked.”

Regarding what immediate or short-term action they would like to see from local authorities and the Scottish Government to aid those in care and working in the care sector who have been affected by the pandemic, our source commented: “That’s a tough one, because I only understand the service from the perspective of my mum’s – fairly limited – care.

“I think the government needs to ensure that care workers have all the resources, and health protection, they need. They are indispensable front line workers and if my mum – who is over 70 and faces serious challenges in her day to day living – can’t get support at time like this, you have to wonder who else is also missing out.”

Despite the unprecedented circumstances both the country and the world at larges finds itself in, it is difficult to see how care for a person living with dementia – who may have difficulty remembering to take their necessary medication, to practice self-isolation and to observe other protective measures required to preserve their own health and safety – could be considered non-essential. From the local to the national level, it is responsibility of government to address this.

In the midst of this crisis, the vulnerable should not be forgotten, and they must not be left behind.