Julia's House: Impact Report 2020

IMPACT REPORT 2020 IN THE HEART OF YOUR COMMUNITY Julia’s House is a children’s hospice based in Dorset and Wiltshire for children and young people, with life-shortening and life-threatening conditions. We provide expert nursing care and a wide range of family support to reduce the exhaustion, isolation, stress and anxiety that comes with caring around the clock for a seriously-ill child.

Our care is rated ‘Outstanding’ by the Care Quality

In 2020, the flexibility and community-based nature of our

Commission and our services have been described as a ‘lifeline’ by many parents. Over 170 families depend upon the help and support we give them.

care service was able to respond swiftly to the COVID-19 pandemic. The Government fully recognised the vital role that hospices like Julia’s House played in the frontline fight against COVID-19, providing specialist clinical care and

Our services are free to families and we have an open referral

staffing to relieve pressure on the NHS during this critical

system. We are there for the whole journey, supporting

time. They announced one-off emergency

families from the birth or diagnosis of their child, until they

funding to ensure such services could be maintained

reach the age of 18; or for up to five years after their death.

throughout the crisis.

OUR ACHIEVEMENTS IN 2020 The pandemic has affected every aspect of life for the children and families we care for, as well as every aspect of our service. In a normal year, two-thirds of our care is provided in the community, so we were in a good position to adapt quickly to providing 100% of our care to support families who were increasingly cut off at home. This became vital as isolation and pressure - a challenge for families caring for a child 24/7 at the best of times - ratcheted up during the lockdowns.

Julia's House continually adapted to suit the changing environment throughout the year, which included: •

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Rigorous COVID-safe procedures following the latest government guidance, changing between visits, appropriate PPE including advanced PPE for Aerosol generated procedures, symptom screening questionnaires and COVID-19 postal and instant lateral flow testing for staff.

Increased community care sessions while families taking up care at home initially dropped due to shielding, those that were requesting care needed more, so we increased the hours available, so the most vulnerable children and families had the respite they needed.

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Supported our staff and volunteers keeping in touch during lockdown, furlough and beyond, updating systems to support remote working, and prioritising wellbeing, providing a range of resources.

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Made savings - utilising the Government's furlough scheme, making redundancies and restructuring our staffing.

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Adapted fundraising programmes -

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Supported the NHS - offering emergency nursing transfers and making our hospices available as part of the NHS extra capacity provision to relieve pressure if local hospitals became overwhelmed.

1-2-1 hospice sessions when restrictions allowed - these were very important to the children who enjoy using our specialist bathing and play facilities, allowing independence and a change of scene.

Virtual care development -

new online one-to-one and group sessions for story time, play sessions, music making, baking, gaming and, later on in the year, one-to-one support for siblings, which helped to reduce the increased isolation for those unable to return to school due to their families' vulnerability.

Online and phone support from the

- nurses and carers supported shielding families with telephone and video calls, ensuring they had everything they needed, delivering supplies and medicines.

care team

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Continued emergency care, end of life

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Ensured our 12 shops were safe for

- our hospices stayed open for end of life care that was not COVID-related. care and bereavement support

our staff, volunteers and customers negotiating rent reductions during periods of closure and managing overwhelming volumes of donations safely.

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finding new ways of fundraising using online and virtual events as well as communicating directly with our supporters.

Continued our lobbying of government for greater local authority financial support of regular respite - sharing research on the positive effect of respite care on family mental health. The "Give Me a Break" report was published in November 2020 in collaboration with Together for Short Lives.

We have been proud to make a difference to families in the community who were in the most need during lockdown - from the pregnant mum who needed us to help look after her seriously ill daughter so she could go into hospital to have a baby, through to supporting a child and his parents through a really tough and anxious time as he was airlifted to hospital twice with life-threatening emergencies, being by their side at the hospital and when they returned home.

Every family's journey has been different.

Every family's care has been different.

But every family has felt safe and supported

by Julia's House.

FINANCIALS 2020 saw our highest ever income from legacies, which accounted for around 50% of our fundraising income. This provided a much needed, but unexpected boost, in what has been a difficult year for other fundraising activities. Legacy income is unpredictable, so while this is a growing area for us, we can't as yet rely on this in any year.

5%

Income

£10,058,107

13% 7% °

8 0

48%

e

Gift Aid - £205,089

• Major donors - £238,448 • Legacies - £2,867,135

e

2n%

Gifts in kind - £173,813

• In memorium - £50,787 • Corporate support - £295,879 • Individual donations - £377,731

• Shops - £1,361,559

Community fundraising - £295,189

• Investments - £3,298

• Trust & foundation grants - £278,235

• Donations - £4,788,413

Miscellaneous income - £6,107

• Statutory funding (Dorset) - £492,938 • Fundraising events and lottery - £707,336 • Emergency Governement Covid grants - £2,704,563

Our retail income was down nearly £1 million (40%) as our shops were shut for much of the year.

Public fundraising was down by £1.3 million (65%), despite generous gifts from many of our major donors, trusts and the amazing support from the local community.

Government support has proved vital. As well as income from retail grants and the job retention (furlough) scheme, we have also received funding, along with all UK children's and adult hospices, in return for providing support and extra capacity to the NHS when needed, helping to relieve pressure and ensure the NHS did not become over-whelmed.

• Retail grants - £317,727 • Job retention scheme - £898,923 • Hospice UK extra capacity grant - £1,487,913

Nearly £600,000 of savings were made in lottery canvassing, event costs and marketing activity. We also restructured staffing, sadly making some redundancies. This did not affect our frontline care team.

We raised £4.60 for every £1 spent on fundraising.

78% of expenditure (excluding retail) was spent on care .

Shops - £1,668,125 • Raising funds - £1,190,964 • Delivering care - £4,266,696

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MAKING A DIFFERENCE As the first lockdown was announced, virtually all the families we support started shielding. We weren't able to visit to provide expert nursing care in person but maintained vital connections over the phone and video with families, who were instantly isolated with a seriously ill child.

With government clarity on PPE, families felt more confident about the Julia's House nurses and carers visiting them at home. Our numbers gradually increased, so we could provide the specialist support needed by the children and relieve exhausted parents.

The number of children receiving care 100 90 80 70 60 50 40 30 20

- 2019 - 2020

10 0 Jan

Feb

Mar

Apr

May

Jun

Jul

Aug

Sep

Oct

Nov

Dec

While we were seeing fewer families at the peak of the pandemic, we provided increased levels of care - an average of just under 25 hours of care per family in May which was vital as other care services had halted. Living in fear of infection, many were struggling to cope with the 24/7 care needs of their seriously ill child, alongside siblings and family working from home.

We cared for

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The average hours of care received

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12Sch�fclren

25 - 2019 - 2020 20 15 10 5

C,

siblings

0 Jan

Feb

Mar

Apr

May

Jun

Jul

Aug

Sep

Oct

Nov

Dec

But our achievements in 2020 are not just about the number of children and families we have supported or the hours of care. They are also about the wider impacts we have been able to achieve in the local community: Helping to keep children safe and well at home and out of hospital Building a closer connection with the NHS - working together on providing the best care for seriously ill children at home to relieve pressure on local health services as well as providing end of life care

bereaved families

Supporting families wherever we were able, especially when other vital services such as physiotherapy and speech therapy had stopped Continuing to be able support new referrals during the pandemic

GOALS FOR 2021 CARE IN CHANGING TIMES

PEOPLE, CULTURE & STANDARDS

Increase flexibility of our care service

Maintain our CQC outstanding rating

Extend the reach of our care service to families who would benefit from receiving the support of some of our individual services, such as sibling support and complementary therapy, to meet their very specific needs rather than accessing the whole service.

Further strengthen our supervision provision, with the launch of a new safeguarding and clinical supervision programme for nursing staff, applying sector best practice and learnings and retain constant diligence over risk management and response.

Enable more families to access the service on a daily basis

Optimise staff retention and recruitment

Keep the positives of the changes we have made to our service as a result of COVID-19, by enabling more families to access a library of recorded virtual sessions from story time to music making, whenever and wherever they want.

Further invest in activities and resources that continue to enhance our working environment, supporting the emotional health and wellbeing of our nurses, carers and all staff, retaining our 2 stars ‘Best Places to Work’ rating and top 25 national rating.

Improve diversity of staff and board Extend our Family Support Services team Expand the range and availability of specialist family support services by launching a counselling service and more informal support groups for parents, extended family members and children to better support their mental and emotional health and recruiting an additional complementary therapist.

Expand choices for parents at End of Life and increase referrals Build partnerships with the local NHS and wider healthcare community to enhance our End of Life service by improving access to paediatric palliative care specialists, so we can provide End of Life care to more families and increase choices on location and treatment for their child at the end of their lives.

Improve our care service for young people Acknowledge the very specific needs of the young people we support to socialise and spend time with their friends and peers in a safe environment, by opening the hospices for evening respite care sessions, so they can have their own space.

Continue to ensure Julia’s House is an inclusive organisation to work and volunteer for, with a commitment to embrace diversity and address unconscious bias through ongoing training and staff development.

FINANCE, FUNDRAISING & COMMUNICATIONS Increase the extent and level of donor support in Wiltshire Launch a Wiltshire fundraising appeal to present a compelling case for support to maintain the Wiltshire service, raising £1.5 million each year in order to fund our Wiltshire care service, now and in the future.

£

Innovation in fundraising Increase financial investment in digital marketing activities to achieve more innovative supporter recruitment and communication, and new virtual fundraising events and activities.

Increase retail presence Open two new shops in Wiltshire to raise the charity’s public presence in local communities and increase retail income and profits.

Find out more about the children and families we support

Visit juliashouse.org/stories