‘Forgotten’ and struggling financially: can health charities survive COVID-19?
With staff redeployed and fundraisers cancelled, charities must find new ways to stay afloat
- Nurses in the charity sector have struggled to continue providing their services with some colleagues redeployed to the NHS
- Shop closures and restrictions on movement during the lockdown have hampered fundraising initiatives that charities rely on
- How new ways of working have led to increased skill sharing and cooperation between teams during the pandemic
Ask Sarah Gigg what it feels like as a nurse working in the voluntary or charitable sector in the middle of a global pandemic, and she doesn’t hesitate.
‘Forgotten,’ she says simply. ‘And misunderstood. Definitely misunderstood. That’s how we’ve been feeling.’
The NHS has been centre stage during the pandemic
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 during the outbreak, including how to keep staff and patients safe, access to personal protective equipment (PPE) and testing, and keeping services going with up to 40% of staff self-isolating at any one time.
But she has also had to cope with additional stresses, as have others in similar roles (including for some, the survival of their organisations) amid an apparent lack of recognition or appreciation. While workers in the NHS have been hailed as heroic, other areas of health and care have felt ignored – at least at the beginning of the crisis.
‘The disparity between the NHS and the voluntary sector has been in the narrative,’ says Ms Gigg.
‘The conversation was focused on the NHS and the Thursday-night “clap” was only for the NHS at the very beginning. It’s been important to get the idea out to the public that there’s social care out there, and there are nurses working in prisons, hospices and all sorts of places. COVID-19 affects every element of health and social care, not only the NHS.’
Charities struggling to raise funds during lockdown
Lockdown and the accompanying economic downturn has hit charity sector fundraising hard, and many organisations 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 in their sector may in fact be increasing.
‘One nurse is providing an epilepsy service from her own home because she’s shielding. She’s doing the job of four people because the rest of her team has been redeployed to the ward’
Louise Griew, chief executive of Roald Dahl’s Marvellous Children’s Charity
Roald Dahl’s Marvellous Children’s Charity, which supports about 21,000 children with serious and life-long conditions and their families, is one such charity. Many of its 78 specialist children’s nurses have taken on new roles, often in addition to their usual duties.
‘I think the NHS has been amazing in the way it has risen to the challenges and set up different ways of working,’ says the charity’s chief executive Louise Griew. ‘But I know that some of our nurses are being pulled to do different jobs, essentially because other nurses have been called to the front line. So they’re trying to do these other jobs while caring for the families and the children they look after.’
One Roald Dahl nurse has been asked to stand in for a matron on a paediatric ward, another was redeployed to work on an adult ward. Two epilepsy nurses are providing essential support to families in the community where telephone and video consultations aren’t enough.
‘One of our nurses is supporting children at hospital who need blood transfusions, we also have one nurse who is providing an epilepsy service from her own home because she’s shielding herself as she has underlying health problems. She’s doing the job of four people because the rest of her team has been redeployed to the ward, including one of our other nurses,’ says Ms Griew.
Nurses who work for charities have been redeployed to the NHS front line
It’s often forgotten that this specialist work hasn’t simply gone away as a result of COVID-19, and this means extra pressures on nurses, she says.
‘They want to help, they want to do their bit and they want to use their skills. They are continuing to provide the support and care that the children need, albeit not face-to-face. They always go above and beyond what’s expected in the normal world, but in the COVID-19 world they’re going beyond above. It might not be what they should be doing, but it’s just the way they are,’ says Ms Griew.
Dementia UK’s Admiral Nurses, who provide support for people with dementia and their families, are also being redeployed, explains Emily Oliver, a consultant Admiral Nurse for South West England and South Wales.
‘For example, we’ve got two nurses in an acute hospital who are trained in mental health, so they have been redeployed to occupational health and they’re using therapeutic intervention, counselling and coaching skills to support staff at this time,’ she says.
Other Admiral Nurses have been redeployed to support district nursing teams, who are also seeing an upsurge in dementia among people in their caseload, she adds, while others have expanded the areas they cover.
A support system for all: Macmillan nurses sharing their skills
Sally Hayes is Macmillan lead cancer nurse with Gloucestershire Hospitals NHS Foundation Trust – or at least, that’s her usual role.
She has been seconded to the trust’s medicine division as deputy divisional director of quality and nursing during the pandemic. She is one of a number of cancer specialist nurses, including Macmillan nurses, to have moved jobs temporarily as a result of the crisis.
‘My job has changed quite significantly,’ she says. ‘Initially I was asked to look at what the cancer nurse specialists (CNSs) were doing, and if we needed to redeploy them. I set up what we’ve called a supportive care role – cancer nurses, including Macmillan nurses, have underlying skills of breaking bad news and sometimes have to do that over the phone. We were looking at how we could support staff who weren’t used to making these difficult phone calls.’
She started to put together a group of nurses to work on wards, supporting staff, patients and relatives while making sure the cancer teams were still sufficiently staffed.
Redeployed nurses have created a support system for all
The CNSs who volunteered have been busy with tasks including supporting patients to stay in touch with relatives and helping to minimise risk for those visiting patients at the end of life. They have also been supporting staff, in part by role-modelling skills such as holding difficult conversations by telephone, but also by helping to manage staff well-being.
The cancer nurses have been welcomed on the wards. One sister described them as a ‘support system for all. They have made a huge difference to patients, relatives and staff’, while another said ‘I feel they are helping us to deliver a gold standard of care at a time that should be about surviving, not excelling – but in this area of care we are doing just that’.
When the nurses move back to their usual roles, Ms Hayes hopes there will be a positive legacy. ‘Our elective cancer services are starting to increase again, so some of the nurses are having to go back to support their teams and their cancer patients. But one of the great things that’s come of this is that while often in cancer services, everyone sticks to their specialist team, they have now all got to know each other so much better.
‘As a wider specialist team, they are talking much more about their practice and sharing ideas. That’s something really positive that’s come out of this. Good practice is being shared more widely because they’ve become friends.’
‘We felt the guidance didn’t match our sector’
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 really 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 escape the constant significant change to help the staff ease into this – and we’re not unique.
‘It was incredibly difficult, especially at the beginning. 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 – especially now. With major funding boosts such as sporting events cancelled or postponed, and shops closed during lockdown, many charities have been forced to set up fundraising drives.
Sue Ryder was one of the leading voices in a call for the government to provide aid to the sector – warning at one point that it might have to close hospices and return end of life patients to the NHS. Since then, chancellor Rishi Sunak has announced a £750 million package of support.
‘That was a very worrying period,’ says Ms Gigg. ‘Statutory income pays for about a third and that doesn’t even pay for the beds in our inpatient unit. 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.’
Demand for services is rising as finances contract
Charities are also reporting increased calls to their helplines, meaning that demand is rising as finances contract.
Macmillan Cancer Support, for example, reported in April that its income had fallen by 50%, while calls to its telephone helpline soared. In March, the cancer nurses on the support line handled almost 4,500 calls, the highest number in the past year and an increase of 37% compared with the monthly average, with 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 patient needs.
Nationally, there have been positive steps, not least in attempts to change the narrative to include all key workers in the Thursday-night ‘clap’. But there is little doubt that many nurses working in charities, like 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 just one of those moments when you think "at last".’
Marie Curie nurses are accustomed to working with patients and their families near and at the end of life, but COVID-19 has brought a new layer of complexity. Some families have decided to cut the number of people coming into the house to the bare minimum, and have asked the Marie Curie nurse to stay away. But others have gathered around their loved one, making it very hard to achieve proper social distancing – and social distancing itself makes it difficult for nurses to do their job as they would wish.
‘We have to do screening calls now [by telephone] to check if the patient or anyone in their home has any symptoms, so that’s a bit more time-consuming,’ says Rosemary Russell, a Marie Curie community nurse based near Belfast. ‘And we have to make it very clear to families that it’s not that we’re not going to call; we’ve just got to make sure we’ve got the right PPE.
'I’m finding that some families are saying that they’re okay and they don’t need a call when we normally would be calling with them, because they’re trying to cut down on the number of people coming into their home.
‘We see different and difficult situations – I was talking to the wife of a patient a couple of weeks ago and she was standing in the kitchen with me crying, saying that her son couldn’t come in, he could only talk to her through the window, and asking how she was going to cope as the disease progresses. With social distancing I was at the other end of the kitchen, which seemed so unnatural.
‘Then in some people’s homes, I’m finding that family are just coming and staying so that they are there [if anything happens]. So when we’re visiting, we’re asking if we can have a bit of space because you’re trying to socially distance, but it’s very difficult: a daughter will go to one side of the bed while you’re at the other side of the bed, but if you need to go round there, she’ll be standing back while you’re trying to get to that side of the bed to try and give you a bit of space.’
This can be even more of an issue when patients actually die, she adds. Although nurses will ask them to hold off calling other people until they have done what they need to do to verify the death, families are often not heeding this. ‘Other family members are arriving into the house and flooding into the room and it’s very difficult for the nurse to say I’m sorry, can you just step back a minute, because these people are grieving, it’s so raw, and it’s just happened. That’s just different for us.’
This is having an impact on nurses themselves, she says. ‘I think a lot of us feel we’re not giving our best care, or care the way would normally do things and you come away feeling disheartened yourself, thinking you’ve not done what you would normally do. I try to acknowledge that by saying that to people, that this is not the way we normally do things, that I would normally be close to you [when breaking bad news]. I guess our bereavement services are going to be so busy after all this because people will no longer have grieved in the normal way. I’d say clinical supervision for nurses is going to be so essential in the next few months, because the staff are going to have so many things they just want to talk over.’ [BOX ENDS]
For charities working with people with learning disabilities, COVID-19 has brought new challenges. Those running residential services have had to find a new way of working to try to minimise risks to service users and staff, while campaigners have been burning the midnight oil to advocate for people with LD.
MacIntyre is a charity that runs a range of services for adults and children who have a learning disability and/or autism. The charity has been working proactively with local councils and public health teams with the aim of ensuring that everyone they look after has fair and equal access to care and treatment.
At a national level, it has launched an emergency recruitment drive to make sure it can keep services going at a time when staff are absent due to sickness or self-isolation, and it has also taken proactive steps to keep funds coming in. For example, in May it launched Move with MacIntyre, encouraging people to raise money for the charity through diverse means as climbing ‘Everest’ on a stairway, or holding a dance contest via Zoom.
Keeping residents safe and well has been a priority for staff at the charity’s residential facilities, including at Anvil Close in South London. Kelsey Bellchambers, a nursing associate apprentice, has been playing a key role.
‘We check the guys’ temperatures regularly [10 men and one women live there] – we’re keeping them here at home at this time where we can, and if staff have any concerns about any of the guys we support, they would contact me and we’ll do temperature checks and just generally see how they are, and if they do have symptoms we would isolate them and contact 111.’
The residents all have their own rooms, which makes it easier to organise self-isolating, says Ms Bellchambers, who started her two-year nurse associate apprenticeship last June, but who has worked at Anvil Close for six years.
So far one resident has been diagnosed with COVID-19 early on in the pandemic, as has another at a sister facility. ‘Both the people we support had gone into hospital with chest infections and they were tested and found to have it. They were kept in hospital for 14 days then came home and were self-isolated for seven days,’ she says. ‘Both of them are back to normal, no problem.’
All those living at Anvil Close have had to accept the limitations of social distancing, which have meant they are confined to the facility, with no visitors. Getting the message across has required a consistent approach. ‘They understand to a certain degree that they can’t go out because there’s an “illness” – that’s how we’ve described it,’ says Ms Bellchambers. ‘Because obviously if we say coronavirus, they wouldn’t have an idea of what that is. But they do have an idea of someone being sick or ill, so we say there’s a nasty bug going around and we want to keep you safe by you staying indoors.’
Staff have increased the number of activities, including painting, egg and spoon races, and extra colouring books. ‘Luckily we have a garden as well, and we’ve been doing baking and a whole range of activities.’ Surprisingly, she says, the lockdown has been going really well, even with those accustomed to going out. ‘Every day we explain that the day centre is closed because of the bug, for example, and they understand.’
Staff are also supporting residents to keep in touch with their families, often using technology including tablets. ‘We’ve been doing a lot of virtual meetings with them to contact their families, and if we feel like someone we support is feeling down or upset, we would contact their families and they can speak to them and usually that cheers them up.
In her experience, the facility has not had a problem accessing PPE, including masks, which were provided by the local authority. She does not grudge nurses working in the NHS the accolades such as the ‘clap’ which was initially for the NHS, but says there needs to be a wider appreciation of others doing their bit.
‘I know that the NHS are on the frontline and they’re doing an amazing job, but there are also other people who are working who need that recognition, such as supermarket workers and bus drivers. They’re doing their day-to-day job and are at just as much risk of catching it as anybody is.
‘For me, I’d say that life has changed a bit for our guys, but we’re still doing exactly the same support. If you didn’t love the job, you wouldn’t be doing this kind of job.’ [BOX ENDS]
Government efforts to help the charity sector
In April, the government announced a £750 million pot for front-line charities across the UK – including hospices and those supporting victims of domestic abuse.
Some £360 million is being directly allocated by government departments to charities providing key services and supporting vulnerable people during the crisis.
As well as this, £370 million for small and medium-sized charities, including through a grant to the National Lottery Community Fund for those in England, will support those community organisations, including those delivering food, essential medicines and providing financial advice.
The government also pledged to match public donations to the BBC’s Big Night In charity appeal on 23 April, starting with a contribution of at least £20 million to the National Emergencies Trust.
It followed previous announcements by chancellor Rishi Sunak to support charities and businesses, including deferring VAT bills and furloughing staff where possible, with the government paying 80% of their wages.
Jennifer Trueland is a health journalist