Registered charity number: 1056114

Annual Review2018/2019

St Peter & St James Hospice continues to provide expert care and support for people with complex needs at the end of their lives and to those close to them. We have supported over 1,000 people living with a terminal illness, most of whom wish to die in their own home. In the last year, 182 have been cared for in the beautiful surroundings of the hospice.

In this last year we have developed a new clinical strategy which is now front and centre of our ambitions for the future. At the heart of this is a commitment to person-centred care and an ‘integrated approach’. We recognise all aspects of our services and support are equally valuable to individuals and their families. We know the opportunity to attend an art class, a discussion group or have a befriender visit is not just ‘nice to have’ but a ‘lifeline’ for someone who is struggling to hold on to their sense of who they are in the midst of illness.

Our wider ambitions are to:● Identify and meet need – to engage with people who use our services to

understand their expectations and personal choices at the end of life● Support people to live well – to focus on what matters most to people at

the end of their lives● Extend our reach – to offer support to more people who can benefit from

being connected to the hospice● Develop our expertise – focusing on education, learning and development

for our staff and volunteers and the professionals they work within the community

With our now robust financial position, we are poised to take forward these ambitions and translate them into action in our local community. Of course, there will always be more need than resources available, but as we grow and flex our services to be modern and relevant for the future we believe people will want to continue to support our vital work. Not least in this is our ambition to start to provide hospice care at home in the coming year.

We are hugely grateful to our funders and supporters for their continued commitment to the hospice. Of course, we could not do what we do without our teams of skilled and experienced staff and volunteers, including our trustees, who ensure high quality, responsive care.

A message from the Chief Executive and Chairman of Trustees

Honorary President: Dame Vera Lynn

Trustees: Keith Banbury, Harriet Creamer, Nick Barrie, Julie Burgess, Andrew Cook, David Crudge, Christine Gibbons, Tim Hancock , Deirdre Prower, Jo July (resigned January 2019), Kate Birrell (resigned January 2019)

Patrons: Anne Bilson, The Viscount Brentford, Sir Edward Cazelet, Katie Derham, Edward Fox OBE, Piers Morgan, Edna Sugarman

Barbara WilliamsChief Executive

Keith BanburyChairman of Trustees

32 St Peter & St James Hospice | Annual Report | 2018/2019

Our strategy, approved by the Board of Trustees in September 2018, sets out how we will achieve our charitable objectives including the principal activity and public benefit of the provision of hospice care and services. Progress on our priority activities in 2018/19 is reported below, as well as our plans for 2019/20.

Agree on a clinical strategy to shape the future of our hospiceThe key themes of our clinical strategy are to:• identify and meet need• enable people to live well• extend our reach• develop our expertise

In 2019/20 our plans are to bring the strategy to life through:• a programme of individual

interviews and focus groups to highlight the need for and experience of our services

• extending our wellbeing services to provide more opportunities for people to benefit from activities and therapies at the hospice and in the community through developing partnerships and collaborations

• extending our befriending and carer support services to more people in our local community and offering more choice to people at the end of life through the development of a hospice at home service

• appointing a Practice Educator to develop our internal education programme and support on-going learning and development for staff and volunteers

Develop innovative education tools to support more providers in our community to develop the capabilities and confidence to deliver, excellent end of life careRecognising we did not have the resources to act independently in developing educational resources, we were pleased to be able to progress this work as part of the Sussex Hospice Collaboration Project. Project Echo is a Hospice UK backed programme using video conferencing

to support the development of communities of practice across care homes and primary care services, enabling hospices to share their expertise and support professional development. The seven Sussex hospices are developing a proposal for implementation in 2020.

To ensure individual experience and feedback informs our service development and improvementOur experience of ‘journey mapping’ led us to identify key touchpoints for people who use the hospice and these are now a focus of our service improvement activity:• arrival at the hospice • first night• when things change

In 2019/20 we expect to:• have more systematic reporting

on comments, compliments and complaints

• develop a framework for interviews and focus groups and train volunteers to support a programme of user involvement

Develop plans to diversify incomeWe have developed plans to invest in diversifying our fundraising income and particularly to grow the number of regular donors and committed givers. Following a review of options for potential income generation, this was identified as the most cost-effective way to generate new income. We also developed plans to bring our fundraising and retail team together, consolidating them into an income generation team.

Increase our presence on the high street with more retail outletsWe opened a new shop in Heathfield to maintain our number of retail outlets and have kept further options under review.

In 2019/20 we expect to:• See the benefits of integrating

fundraising and retail teams with increased efficiency and a rise in our income from both sources

• Develop an income generation plan and bring forward business cases for new fundraised income streams for the future

Operate a well-governed, sustainable businessTrustees commissioned a Board Effectiveness Review led by Cass Business School. An action plan was created which has been overseen by the Board Development Committee, a sub-committee of the board. As a result of the review, the committee structure was revised with the new approach being implemented from 1 April 2019.

Following the Review and in the light of the ambitions set out in the clinical strategy, proposals for the restructuring of the senior team at the hospice were consulted on and also implemented from 1 April 2019.

In 2019/20 we expect to:• Implement a revised organisational

staffing structure and committee structure for our board

• Recruit new trustees to fill vacancies through an open process involving staff and volunteers in the selection process

To improve communicationsOur staff and volunteer survey in the summer of 2018 highlighted communications across the organisation as a key issue. As a result improvements have been made to staff and volunteer induction, and appraisal processes have been standardised.

In 2019/20 we expect to:• Bring forward plans for digital

transformation and communications to ensure the hospice is maximising the opportunities presented by digital and IT solutions in our work, particularly in reducing silo-working

• Complete all the actions from the staff and volunteer survey and provide feedback on progress

Who we are and how we help Key activities in 2018/19Many people think a hospice is a building where you go to die. We challenge that perception with everything we do to support, empower and care for people towards and at the end of life.

Through our Inpatient Ward, Wellbeing services and our specialist community nursing team, we provide expert and compassionate hospice care to adults living with terminal illness in Haywards Heath, Burgess Hill, Uckfield, Lewes and the surrounding villages. We’re here for their family and friends too.

We’re passionate about helping people to live well and enjoy the best quality of life possible. We personalise care to every individual and focus on the things that are important to them.

On our 14 bed Inpatient Ward, many people have a short-stay to get difficult symptoms such as pain or breathlessness under control. Others may come in for end of life care. Everyone who stays with us has their own private room with stunning views and is provided delicious home cooked meals. Family and friends can also visit whenever they wish.

Our Wellbeing services help people feel calmer, happier and more in control. We offer practical and emotional support to both patients and their relatives through a range of interesting courses and classes, complementary therapy, counselling, welfare advice, spiritual care and a befriending service.

Our specialist community nurses visit people in their own homes to provide expert advice and support. While out on a visit, they might review someone’s medication or work to ease difficult symptoms, offer guidance around the next stages of illness or help somebody put plans in place for the end of their life.

St Peter & St James Hospice | Annual Report | 2018/2019 54 St Peter & St James Hospice | Annual Report | 2018/2019

We cared for over

1,000 people affected by terminal illness

182 people received compassionate care on our inpatient ward

190 families were given expert advice and support from our Community Nursing Team with 2,043 home visits and 8,940 phone calls

84people made friends, got creative, relaxed through therapies or enjoyed gentle exercise at our Beacon View Wellbeing Centre

42,874hours were kindly donated by volunteers who kept our hospice and charity shops running

2018-2019 A year at our hospice

Our donkeys, Dudley and Dylan,

enjoyed78 supervised walks

around the hospice gardens, bringing joy and laughter to the families they met

485 peoplewalked in celebration

of loved ones atour Star Walk,

raising an incredible £31,000

Our befrienders made

345 home visits,providing carers,

someone to talk to or the opportunity to take

time for themselves knowing their loved

ones were safe

246 peopleaccessed welfare advice

to ensure they were receiving all available

practical and financial support

184 peoplewere supported

through griefand loss by our bereavement

team

Customersspent over

£1.2 millionon bargains in our

charity shops

254 peoplecame together to

reflect on treasured memories at our

hospice remembrance services

St Peter & St James Hospice | Annual Report | 2018/2019 76 St Peter & St James Hospice | Annual Report | 2018/2019

Financial review 2018-2019

The total income of the Group in 2018/19 increased by 18% to £5.2m compared to £4.4m in 2017/18, with expenditure increasing by 9% to £4.6m (2017/18: £4.2m)

• Income from legacies, donations and our charity shops contributed 78% of our income during the year (2017/18: 74%) and increased by 19.8% to £4.09m (2017/18: £3.28m). This is thanks to the generosity of supporters and the efforts of our committed fundraising and retail staff and volunteers

• Several large legacies were received during 2018-19, which led to a 78% increase in legacy income to £1.6m (2017/18: £0.9m)

• Income from donations and fundraising increased by just over 3% to £1,316,960 (2017/18: £1,274,151)

• Shop and Trading income increased by £61,569 to £1,168,825 (2017/18: £1,107,256), and costs increased by £61,946 to £963,030 (17/18: £901,084), leading to a similar net contribution of £205,795 (2017/18: £206,175) to the Charity

• Income from grants decreased by 3% to £750,115 (2017/18: £773,767), and Income from Charitable Activities saw a slight increase of 0.9% to £367,122 (2017/18: £363,912)

• Due to the growth in service delivery, charitable expenditure (excluding fundraising costs) increased by almost 10% to £3,138,175 (2017/18: £2,838,221), and again comprised 68% of total expenditure (2017/18: 68%)

• Fundraising Costs increased by 14.5% to £498,918 (2017/18: £426,538) due to investment in the fundraising team for future income generation

• Although investment income fell slightly to £18,267 (2017/18: £20,334), gains on investments during the year were £16,905 (2017/18: £4,616 loss)

The Group could, therefore, report a total surplus in 2018/19 of £637,625 (2017/18 £265,922), which is largely due to the significant increase in legacy income, and as such total funds increased to £4,401,495 (2017/18: £3,763,870).

Income£5,223,882

Expenditure£4,603,162

25.2%

20.9%

10.8%

28%

11.1%

6.5%

22%

30.7%

22.4%

14.4%

7%

Investment income0.3%

CharitableActivitiesIncome

Grants and Contracts

Shops and Trading

Legacies

Donations and Fundraising

Investment Management Costs0.1%

External Clinical Services0.6%

ContinuingCare

WellbeingServices

CommunityCare

Hospice Care

FundraisingCosts

Shop and Trading Costs

Income£5,223,882

Expenditure£4,603,162

25.2%

20.9%

10.8%

28%

11.1%

6.5%

22%

30.7%

22.4%

14.4%

7%

Investment income0.3%

CharitableActivitiesIncome

Grants and Contracts

Shops and Trading

Legacies

Donations and Fundraising

Investment Management Costs0.1%

External Clinical Services0.6%

ContinuingCare

WellbeingServices

CommunityCare

Hospice Care

FundraisingCosts

Shop and Trading Costs

Income % £

Donations and fundraising 25.2 1,316,960

Legacies 30.7 1,602,418

Shops and trading 22.4 1,168,825

Grants and contracts 14.4 750,115

Income from charitable activities 7.0 367,122

Investment income 0.3 18,267

Other income 0.0 175

Total 100.0 5,223,882

Expenditure % £

Shop and trading costs 20.9 963,030

Fundraising costs 10.8 498,918

Hospice care 28.0 1,286,931

Community care 11.1 509,050

Wellbeing services 6.5 298,751

Continuing care 22.0 1,013,954

External clinical services 0.6 29,489

Investment management costs 0.1 3,039

Total 100.0 4,603,162

8 St Peter & St James Hospice | Annual Report | 2018/2019 St Peter & St James Hospice | Annual Report | 2018/2019 9

DEBBIE’S STORY DEBBIE’S STORY

When Gary’s adored partner, Debbie, received the news that her cancer had spread and was incurable, the couple welcomed hospice support. Gary believes this was one of the best decisions they could have made.

Her strength was astounding and she never stopped looking out for us

She had such a warm energy about her and a beaming smile – one she was rarely without

‘I thought Debbie was beautiful from the second I saw her,’ Gary says. ‘She had such a warm energy about her and a beaming smile – one she was rarely without.

‘Debbie was fiercely loyal, had a wicked sense of humour and was the kindest, most selfless woman I’ve ever met – she had time for everyone and people warmed to her instantly. She was an avid gardener and loved her holidays, spending her days in the pool or soaking up the sun with a good book. She always looked immaculate; she was naturally stunning but loved her make-up and fashion. I was definitely punching above my weight!

‘Debbie had two children, Sam and Ben, from a previous relationship, and we had a daughter, Caitlin, who’s 12 now. The children were Debbie’s biggest love in life; she was so proud of them. Family time was her priority – even when she was very unwell we enjoyed a day

‘When Debbie passed away, I stepped outside to let the nurses do what they needed to. When I came back into the room, she had been

looked so beautiful. I will be forever grateful for that moment.

‘At Debbie’s funeral, there was a sea of colour that took our breath away. 300 people – each with lovely stories to tell – turned up to celebrate her life. She was a truly fabulous, inspiring woman and I know for as long as I live I’ll never meet anyone like her. As a family, we’ll think of her in everything we do and try to live with the same strength and generosity that she did.’

out at Marwell Zoo. She was mad about Christmas and made it so special; preparations and present-buying started in January!

‘Debbie was diagnosed with breast cancer in 2011. Over the years she went through chemotherapy, radiation, and had a mastectomy as well as reconstructive surgery, after which she nicknamed herself ‘Lady Twoboobs’! There were moments when Debbie struggled, but even on her dark days she’d crack a joke and end up in stitches. Her strength was astounding and she never stopped looking out for us.

‘In January 2018 we found out that Debbie’s cancer had spread to her lungs and was terminal. Still, she remained positive. She decided to make memory boxes for the children, which they will treasure forever.

‘Initially, the hospice supported us at home. Nurse Gary would visit often, some days reviewing and changing Debbie’s medication,

and others talking us through what to expect next. After the first visit Debbie smiled and said ‘I like him’. The two built a fantastic relationship; it was Debbie’s wish to be well-informed and Nurse Gary was open and honest throughout. During his visits somebody always ended up giggling. To have such compassionate, personalised care in our own home was hugely comforting.

‘Debbie spent a week at the hospice at the beginning of March to get her pain under control, and when she deteriorated at the end of March, Gary arranged for her to be admitted again. She spent her final three weeks at the hospice; it was a sanctuary. We enjoyed time together in the gardens, welcomed visitor after visitor and even had our dog, Alfie, in for cuddles. To see Debbie so comfortable, receiving the very best care, meant everything and it was a privilege to be by her side.

freed of medical equipment and flowers had been placed around her. It was as if all her pain and struggle had gone; she was peaceful and

10 St Peter & St James Hospice | Annual Report | 2018/2019 11

St Peter & St James HospiceNorth Common Road, North Chailey, Lewes, East Sussex, BN8 4ED

01444 471242 | stpjhospice.org