Forgotten nurses of the pandemic

While the NHS is hailed as heroic, other areas of health and care have felt ignored, misunderstood and their funding restricted

• Nurses in the voluntary and charity sector hurt by perceived lack of recognition or appreciation
• Lockdown and effect on economy have hit fundraising, leaving charities vulnerable
• Dementia care appears trumped by front-line services, and social care left behind

Ask Sarah Gigg what it feels like to be a nurse working in the voluntary or charitable sector in the middle of a global pandemic and she replies without hesitation.

‘Forgotten,’ she says simply. ‘And misunderstood. Definitely misunderstood. That’s how we’ve been feeling.’

As director of nursing and interim head of hospices with the charity Sue Ryder, Ms Gigg faces the same challenges as any other nurse leader, including how to keep staff and patients safe, secure enough access to personal protective equipment (PPE) and testing, and keep services going with up to 40% of staff self-isolating at any one time.

‘COVID-19 affects every element of health and social care – not only the NHS’

Sarah Gigg, director of nursing at Sue Ryder

But like others in similar roles she has also had to cope with additional stress – including the survival of their organisations – amid a perceived lack of recognition or appreciation. While the NHS has been hailed as heroic, other areas of health and care have felt all but ignored, at least at the beginning.

‘From a day-to-day perspective, a disparity between the NHS and the voluntary sector has been in the narrative,’ says Ms Gigg.

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‘It was the volume of the conversation that was NHS-focused, the “clap” that was for the NHS at the very beginning. It’s been important to get the idea out into the public domain that there’s social care out there, there are nurses working in prisons, in hospices and all sorts of places. It is about understanding that COVID-19 affects every element of health and social care – not only the NHS.’

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The charity sector as a whole has been feeling the effect of COVID-19. The lockdown and the economic downturn have hit fundraising with a vengeance, and many have launched extraordinary appeals for money amid fears they might have to close.

Charities in the health and social care sector have arguably been affected even more – not only do they face the same financial challenges, but their staff have in some cases been taken away from their primary duties to support their NHS colleagues at a time when demand is if anything increasing. 

Dementia UK’s Admiral Nurses, who provide support for people with dementia and their families, are also being redeployed, says consultant Admiral Nurse for South West England and South Wales Emily Oliver.

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‘For example, we’ve got two nurses in an acute hospital who are actually mental health trained, so they have been redeployed to occupational health, and they’re using therapeutic intervention, counselling and coaching skills to support staff at this time.

‘Another example is a nurse who works in Royal Cornwall Hospitals NHS Trust, she usually supports people with dementia and their carers on the wards, but now that COVID-19 has happened she’s offering telephone support from her home.

‘Before, the referral criteria was anyone who had been admitted, but now she’s opened up to the whole of Cornwall, so any professional in Cornwall can refer on to her. Using telephone support means she’s preventing spread of infection not only in people’s homes but also on the ward, where previously she’d have been going between different areas.

‘We also have nurses in Devon who have expanded their areas of practice so they are providing support to a much larger locality. Again, that’s predominantly by phone, but it also involves visiting people in their homes.’

Restrictions of lockdown can have devastating effects on people with demenita

Admiral Nurses are reporting that as the pandemic continues, people with dementia and their families need more intense support to help them cope with the restrictions of lockdown and social distancing, which can be devastating for people with dementia, particularly if they usually find an outlet in going outside several times a day, for example.

‘At first they were being asked for information and advice about COVID-19, but now that “Dunkirk spirit” is diminishing, the carers, predominantly, are needing much more support. Other services such as respite, day centres and memory cafes are closed, so nurses are having to provide much more intense support to people who aren’t getting their usual support from other services.’

Other Admiral Nurses have been redeployed to support district nursing teams, who are also seeing an upsurge in people in their caseload with dementia, she says, while others have expanded the localities they cover.

Dementia UK has noticed an increase in calls to its helpline, says Dr Oliver, both from carers and from people with dementia. Concerns include social distancing and restrictions on visiting. Admiral Nurses in care homes are also making use of technology to help residents and families stay as connected as possible.

‘People are valuing the role of the Admiral Nurse more… there are opportunities for further development of the role’

Emily Oliver, consultant Admiral Nurse

Is she worried that having been diverted from their posts, Admiral Nurses who are employed directly by the NHS and other organisations won’t go back to their specialist roles?

‘Where nurses are sitting in their host organisations, their role has been valued,’ she says. ‘But I do think that dementia in general has almost been trumped by intensive care and other front-line services. Social care has been left behind, particularly for people with dementia – we saw this in care homes, because at the start there wasn’t a lot of support and guidance out there.’

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Having said that, she sees some positives in the current situation. ‘We’re actually seeing opportunities where people are valuing the role of the Admiral Nurse more, and where they are changing their work and expanding, there’s opportunities for further development of the role. So there have been positives.’

Care has shifted and changed, and nurses have had to adapt at a fast pace

Sue Ryder staff have also been adapting the way they work, says Ms Gigg, but it has been challenging. ‘From a nursing perspective, it’s tough. The care has shifted and changed. It’s exactly the same for anyone working in healthcare. They are having to adapt at such a fast pace to a different way of working.

‘We’ve followed all the guidance, we’ve sought advice and we’ve been planning for weeks and yet we haven’t been able to sift through that significant constant change to help the staff ease into this, and we’re not unique.’

Has it been different for the charity sector? ‘In our experience, especially at the beginning, it felt incredibly difficult. It felt as if the whole sector was forgotten. It felt like the guidance didn’t match.’

Money is, of course, an ever-present concern for charities, and especially now. With major funding boosts like marathons cancelled or postponed, and shops closed during lockdown, many have been forced to set up their own fundraising drives.

‘Now that “Dunkirk spirit” is diminishing, the carers, predominantly, are needing much more support’

Emily Oliver, consultant Admiral Nurse

Sue Ryder was one of the leading voices in calling on the government to provide aid to the sector – warning at one point that it might have to close hospices and return patients to the NHS. Since then the chancellor, Rishi Sunak, has announced a package of support.

Demand for charity helplines is rising as finances contract

‘Without a doubt that was a very worrying period,’ says Ms Gigg. ‘Statutory income pays for around one third, and that doesn’t even pay for the inpatient unit beds. It was a significant worry for a good three to four weeks. Thankfully, expressing that did get a result, but that’s still not long-term. None of us knows what the world will look like as we come out of lockdown, so that worry still exists.’

Charities are also reporting increased calls to their helplines, meaning demand is rising as finances contract.

Age UK has reported an unprecedented number of calls to its advice line since the crisis hit, peaking at an 88% increase in demand.

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Its telephone befriending services, which support more than 3,500 older people weekly, have seen demand increase by 290%.

Macmillan Cancer Support reported in April that its income had fallen by 50%, while calls to the Macmillan Support Line soared. In March, cancer nurses on its support line handled almost 4,500 calls, the highest number over the past year and 37% higher than the monthly average.

Many calls related to COVID-19, including concerns about treatment delays. Hundreds of Macmillan nurses have been deployed, and the charity has dedicated a £5 million coronavirus response fund to support professionals and address needs.

Positive steps and attempts to change the narrative

Nationally, there have been positive steps – not least in attempts to change the narrative to include all key workers in the Thursday evening Clap for Carers.

But there is little doubt that many nurses working in charities, such as Ms Gigg, feel forgotten and misunderstood. ‘It’s the questions we’ve been asking: why didn’t the guidance apply, why were we not being mentioned? It took probably about six weeks for the word hospice to be mentioned in the prime minister’s presentation, and collectively we just said, “Wow, he said the word.”

‘It was one of those moments when you think: “At last.” ’

Jennifer Trueland is a health journalist