A bleak funding landscape could push lifeline children’s hospices to their limits, warns Together for Short Lives

Children’s charity Together for Short Lives warns that lifeline children’s hospices face an uncertain funding future. As the UK gets set to take tentative steps to leave Covid 19 behind, our children’s hospices feel its effects more than ever – with over three quarters expecting their income to fall yet again this year, leaving them on a vulnerable financial footing. They need additional cash support to stop them being pushed to their limits.

The number of seriously ill children is rising, which means children’s hospices need to raise more money to provide essential care. But this demand is growing as children’s hospices feel the financial impact of the pandemic

77% of children’s hospices expect their income to fall this year

63% of children’s hospices expect their local authority funding to be cut or frozen

Local authority funding covers just 4% of the charitable costs incurred by children’s hospices

83% of children’s hospices expect to report a deficit in 2021/22

Children’s hospices deliver lifeline care to the UK’s most vulnerable and seriously ill children and families. Caring for a seriously ill child 24/7 at home can be exhausting, lonely and isolating, and after a year of shielding from the pandemic families need the support of their hospice more than ever.

Carly, Mum to Aidan, who has a serious and rare condition relies on Alexander Devine children’s hospice for vital support and would be lost without it says:

“This last year has been like a pressure cooker for our family. We’re exhausted and worried. We’ve never felt so isolated. A year of shielding and lockdown has pushed my family to our limits.”

Together for Short Lives has published new findings of a children’s hospice funding survey today (23 June 2021) which reveals the impact of the pandemic on hospice funding and predictions for their income 2021/22.

The charity is calling on the public to support their local children’s hospice by pushing themselves to the limit by taking on a fundraising challenge or making a donation. The call comes in Children’s Hospice Week (21-27 June), the only UK fundraising and awareness week for children’s hospices and the seriously ill children and families who rely on them for support. Families like Elijah’s who receive lifeline support from Little Haven’s hospice.

“It’s so important that parents of life-limited children – and the wider community – understand what children’s hospices do and how much they benefit these children who, a lot of the time, are scraping up the little bits of help the NHS is able to give them in term of therapies. The people at Little Havens understand Elijah’s needs, they’re enthusiastic at helping us get the best out of his life, and everything is tailored to allow us to do that,” adds Elijah’s mum, Natasha.

Last year children’s hospice fundraising was hit hard by the pandemic, especially income from charity shops, community and events fundraising, and public donations. In 2020/21 the survey found:

On average hospice income from charity shops and trading activities fell by over half (57 per cent).
Average income from fundraising challenge events fell by over half (58 per cent).
Income from community fundraising fell by a third (33 per cent) and individual donations fell by 8 per cent.

Although children’s hospices received much-needed government covid emergency funding last year, that funding has ceased. And while the UK economic outlook is more positive, children’s hospices predict that fundraising will not reach pre-pandemic levels in the coming year.

Together for Short Lives says that children’s hospice sector faces a perfect storm. The number of seriously ill children is rising, and so is demand for hospice care, which means children’s hospices need to raise more money to provide essential care. But this demand is growing as children’s hospices feel the financial impact of the pandemic.

This coming year will be especially challenging for children’s hospices who predict that fundraising and income levels will drop below their 2019/20 levels. Children’s hospice funding predictions for 2021/22 show:

Over three quarters (77 per cent) of children’s hospices expect their income to fall this year.
On average children’s hospices expect their income to decrease by 17% and expect a net deficit of £324,307.97 in 2021/22.
Individually, over 80% (83 per cent) of children’s hospices expect to report a deficit in 2021/22.
Children’s hospices anticipate that although income from trading and traditional fundraising will be up on last year, they say they will not reach the pre-covid income levels of 2019/20: Community fundraising (20% down on 2019/20), challenge events funding (21% down on 2019/20), and charity shops and trading (3% down on 2019/20)

Although children’s hospices in England receive government and NHS income from a variety of funding streams, this only accounts for about a third of what they spend on providing lifeline care and support. The majority of funding continues to be met by trading income, corporate funders and trusts, and the generosity of the public.

Worryingly the survey found that statutory income from local authorities in England remains patchy and inconsistent and is not enough to make sure all seriously ill children and their families can access the hospice respite breaks they desperately need. Despite recent modest increases in local authority funding, it only covers a small proportion (4 per cent) of the charitable costs incurred by children’s hospices, and funding varies considerably across local areas. The charity’s survey showed that:

Three quarters (74 per cent) of children’s hospices reported a cut or freeze in their local authority funding between 2019/20 and 2020/21.
63 per cent of children’s hospices expect their local authority funding to be cut or frozen between 2020/21 and 2021/22.

“Caring for a seriously ill child brings many life-enriching joys but caring round the clock is exhausting and takes a huge toll on the whole family. After a year of shielding, families with seriously ill children are pushed to their limits and need support more than ever. They rely on a range of local services, including their children’s hospice to provides them with the time and care they need to make memories that last a lifetime – the chance to be parents, not carers,” says Andy Fletcher, CEO for Together for Short Lives.

“Throughout the pandemic children’s hospices stepped up their efforts to take the pressure of the NHS, as well as delivering lifeline support and emergency crisis care to seriously ill children, and thankfully the government provided much-needed emergency funding last year in return for hospices providing that capacity.”

“But as the UK starts to move forward this summer, it’s vital we don’t leave our children’s hospices behind. We are calling on the public to help children’s hospices to be there for families, today and long into the future, by pushing themselves to their limits this Children’s Hospice Week and raising vital funds – so children’s hospices aren’t pushed to theirs.”

You can support your local children’s hospice by making a donation here

Images, spokespeople and case studies available on request

About Children’s Hospice Week
Children’s Hospice Week is the only week in the year dedicated to raising awareness and funds for children’s hospice and palliative care services across the UK, and the seriously ill children and young people they support. This year it’s taking place between 21-27 June 2021This year for Children’s Hospice Week, we’re asking supporters to push themselves to the limits so children’s hospices aren’t pushed to theirs. Right now, families with seriously ill children are pushed to their limits. Caring for a child with serious health needs can be exhausting – and often the challenges families face are little understood. At the same time, children’s hospices are being pushed to their limits too – with more and more children in need of their care. We want people to push themselves to their limits and raise vital funds this Children’s Hospice Week.About the Survey: Pushed to the limits: UK children’s hospices’ funding 2019/20-2021/22In April and May 2021, Together for Short Lives asked children’s hospices across the UK how their funding has changed as a result of the COVID pandemic. We asked what impact this has had on the services they have been able to provide to seriously ill children and their families. We also asked them how they expected this to change in 2021/22.Some of the topline data is as follows.

In 2020/21, average income increased, largely as a result of support from government and the wider state, but behind this, charitable sources of income were badly affected:

On average, children’s hospices reported an income of £6,954,324.79 for financial year 2020/21. This was 6 per cent greater than the £6,576,501.24 income they reported for 2019/20.
On average, children’s hospices each received £1,330,050.72 in emergency funding for hospices in England from HM Treasury or from the equivalent schemes in the other UK nations and regions in 2020/21. Other forms of funding, including the UK Government’s Coronavirus Job Retention Scheme and local authority retail grants, provided an average of £1,051,432.50 per children’s hospice in 2020/21.

Yet two fifths (40 per cent) of children’s hospices reported that their income had decreased between 2019/20 and 2020/21.

Unsurprisingly, income sources which depend on face-to-face contact fell dramatically between 2019/20 and 2020/21. On average, income from trading activities fell by over half (57 per cent) from £1,447,822.72 in 2019/20 to £620,436.50 in 2021/22.

Average income from challenge events fell by over half (58 per cent) from £199,647.56 in 2019/20 to £83,653.50 in 2021/22.\
Income from community fundraising fell by a third (33 per cent) from £549,254.19 in 2019/20 to £367,566.92 in 2021/22.

Other forms of income generation were also affected: average individual donations fell by 8 per cent from £1,093,993.68 in 2019/20 to £1,009,733.86 in 2020/21.

The funding landscape in 2021/22 could push children’s hospices to the limits:

A combination of COVID-related statutory funding schemes coming to an end and the uncertain economic outlook mean that 2021/22 is likely to be much more challenging for children’s hospice income.

On average, children’s hospices expect their income to decrease to £5,805,250.72 in 2021/22, a fall of 17 per cent. Over three quarters (77 per cent) expect their income to fall.

On average, children’s hospices expect to report a net deficit of £324,307.97 in 2021/22.

Individually, over four fifths (83 per cent) children’s hospices expect to report a deficit in 2021/22. Only four (14 per cent) expect to report a surplus.

Children’s hospices expect average income from trading activities to increase by 126 per cent to £1,399,619.60, although this would still be 3 per cent below the 2019/20 figure.

Children’s hospices expect average income from challenge events to increase by 89 per cent to £158,020.31, although this would still be 21 per cent below the 2019/20 figure.

Children’s hospices expect average income from community fundraising to increase by 19 per cent to £437,728.68, although this would still be 20 per cent below the 2019/20 figure.

Worryingly, other forms of fundraising are likely to generate even less income in 2021/22 compared to 2020/21; children’s hospices expect average income from individual donations to fall by nearly a fifth (18 per cent) to £824,779.93 in 2021/22, an overall fall of a quarter (25 per cent) compared to 2019/20.

Local authority funding for children’s hospices in England is not enough to make sure all seriously ill children and their families can access the breaks they desperately need

Despite the welcome 29 per cent increase in local authority funding for children’s hospices between 2019/20 and 2020/21, it was still a small proportion (4 per cent) of the charitable costs incurred by children’s hospices in 2020/21. It is also small considering the proportion of children’s hospice activity that short breaks for respite represents – and the fact that local authorities have a legal duty to ensure disabled children can access short breaks.

Despite the average increase in local authority funding across England, funding varies widely between children’s hospices. Three quarters (74 per cent) of children’s hospices reported a cut or freeze in their local authority funding between 2019/20 and 2020/21.

63 per cent of children’s hospices expect their local authority funding to be cut or frozen between 2020/21 and 2021/22.

Children’s hospices in England benefited from the larger Children’s Hospice Grant, which totalled £15 million across the sector in 2020/21. Average funding from NHS clinical commissioning groups (CCGs) in England increased by 3 per cent between 2019/20 and 2020/21. On average, CCG funding represented 16 per cent of their charitable expenditure. However, as with local authorities, funding varies between children’s hospices. As many (13) children’s hospices (48 per cent) reported that their CCG funding fell between 2019/20 and 2020/21 as reported an increase.

11 (41 per cent) of children’s hospices expect their CCG funding to fall between 2020/21 and 2021/22 compared to 12 (44 per cent) who expect their CCG funding to increase.

About Together for Short Lives
When a child’s life is expected to be short, there’s no time to waste. Together for Short Lives is here to make sure the 99,000 seriously ill children and their families across the UK can make the most of every moment they have together, whether that’s for years, months or only hours. We stand alongside families, supporting them to make sure they get the vital care and help that they need.

We estimate that there are 99,000 babies, children and young people are living in the UK with health conditions that are life-limiting or life-threatening. Many of these children have complex conditions and need specialist care 24 hours a day, seven days a week. The impact is enormous; affected parents, brothers and sisters, grandparents, and the wider family make up an estimated that there are at least 790,000 family members who are actively involved in care. For those who love these children, accessing help and the right care can be emotionally stressful. For those of us who haven’t faced it, it’s unimaginable.