ty hafan annual review 2014/15

annual review

2014/ 15

the hospice for children in Wales

annual review 2014/15

chair’s welcome Since 1999, Tˆy Hafan has supported 617 families and 640 children. Today, Tˆy Hafan cares for 254 children and this is made possible by the support of businesses and the generosity of the people of Wales who back Tˆy Hafan’s fundraising initiatives, who leave bequests, shop in Tˆy Hafan’s shops or play the Tˆy Hafan lottery, Crackerjackpot.

The number of children who qualify for the support of Tˆy Hafan is, thankfully, modest but the unimaginable circumstances of the families facing the prospect of the death of their child during childhood means that the impact of the service we provide is enormous.

Add to that the support we receive from our ambassadors, trustees and volunteers and you’ll understand my need to express my heartfelt thanks to all those who supported Tˆy Hafan during the year, all those who volunteered their time and all those who helped us provide free palliative care services.

Whether it is for short break care, emergency care for social, spiritual, emotional or physical care, the provision of therapies or creating memories that will be cherished long after the death of a child; or perhaps just knowing that there is somebody there, 24/7, to listen, to understand; the service we provide is vital and is, to many of our families, a lifeline.

It is an honour to serve as Chair of a charity that is in the vanguard of the provision of paediatric palliative care, in the United Kingdom and internationally, an organisation of which all of Wales can be rightfully proud.

Tˆy Hafan is an independent charity. In 2014/15, Tˆy Hafan derived approximately 3% of total income from statutory funding and around about the same amount from income investments.

That means that well over 90% of our funding was derived from the support we receive from individuals, groups and businesses.

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I hope you enjoy reading the annual review, a snapshot of our activities and services and a glimpse of how these have had an impact on the lives of those we serve.

Maria Timon Samra

contents chair’s welcome....................................2 what’s new............................................4 key achievements.......................... 6 + 7 our year in numbers...................... 8 + 9 income generation overview...... 10 + 11 overview of care services................... 12 our plans for the future...................... 14 elain’s story..........................................17 financial summary.............................. 18 thank you............................................. 19

029 2053 2199 www.tyhafan.org

Tˆy Hafan is not just about care at the end of life but rather throughout the child’s life. Consequently, the focus is on the quality of a child’s life.

Our Mission is to offer a high standard of free care and support to the families of children in Wales who are expected to die in childhood.

Tˆy Hafan has a vision of a Wales in which every child that is expected to die in childhood lives a full and fulfilling family life.

It’s not just about the child.

It is equally focused on family, on the Mums and Dads, the siblings, carers, the extended family and friends.

Tˆy Hafan’s hospice is only occasionally a place of sadness. It is most often a vibrant, joyous and colourful place filled with the laughter of children.

Tˆy Hafan provides care in the community, in hospital, in school and at home throughout Wales, and from a beautiful purpose built hospice overlooking the Bristol Channel in Sully, between Barry and Penarth in Glamorgan.

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annual review 2014/15

what’s new The Tˆy Hafan hospice has been much-loved and well-used during our 15 year existence. To ensure that the services we provide our children and families remain at the forefront of paediatric palliative care, the hospice has enjoyed considerable upgrades over the last year.

Our beautiful setting on the shore of the Bristol Channel is the inspiration behind the desert island theme of our new £250,000 adventure playground.

The entire area is fully accessible to wheelchair users, from the sunlight tunnel to the wheelchair see-saw.

It is an area where children can enjoy many of the same activities that their brothers, sisters and friends do and allows families to enjoy these experiences together, in many cases, for the first time. The bespoke lighthouse, wheelchair swings and trampoline, water activity station and race track are all designed to provide a fully inclusive environment.

Former Director of Care, Jayne Saunders, said: “This new facility allows children of all abilities to enjoy the exciting and therapeutic benefits of a playground. We are incredibly grateful to our wonderful supporters for funding this fantastic facility – it will make such a difference to the families we support.”

A full kitchen refurbishment has also been high on the priority list, with the staff-proclaimed “hub of the building” requiring a bit of a refresh having been 4

so heavily used since the hospice first opened its doors in 1999.

Thanks to a £140,000 investment, made possible by the tireless fundraising of members of the public and significant donations from local businesses, the kitchen has been transformed. It now offers state-of-the-art catering facilities, a separate domestic kitchen and opportunities for cookery therapy.

Jayne Saunders said: “We aim to create a homely atmosphere for our families, which is why the new kitchen is a wonderful addition to the hospice. The refurbishment provides a positive and uplifting environment and the feedback we’ve had from families has been fantastic.

“We are delighted with the new kitchen and we can’t thank our supporters enough for making it happen.”

We are incredibly grateful to the many groups, supporters and businesses that made these fantastic projects possible.

029 2053 2199 www.tyhafan.org

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annual review 2014/15

key achievements Tyˆ Hafan’s continued success relies heavily on the kindness and generosity of many, from the corporate supporters whose backing becomes part of organisational culture to the many individuals and groups who take on incredible challenges in the name of Tyˆ Hafan.

Events

Children’s hospice week

Tˆy Hafan has a history of organising fantastic events for supporters of all ages and abilities.

Pendine Sands in Pembrokeshire was the scene for our first Rainbow Run in September 2014, an event based on the Indian Holi festival of colour and the first of its kind in Wales.

There are no winners, no official times, and only two rules: entrants must wear white at the start and be plastered in colour by the end.

This year’s Children’s Hospice Week, the only national awareness and fundraising week for children’s hospice services in the UK, culminated with Hero Friday. We asked supporters to dress up as their hero and help raise money to provide 24/7 care for seriously ill children.

Helen Gibbons, event organiser at Tˆy Hafan, summed up the event perfectly: “The Rainbow Run is not a race, nor is it about speed or fitness; it’s about celebration, having fun with friends and raising a smile for Tˆy Hafan.”

Former Wales rugby stars Colin Charvis, Rhys Williams and Mark Jones, formed a team to take on the Welsh3Peaks, sponsored by GE Aviation Wales. The event, now in its 16th year, saw teams set out before dawn to summit Snowdon, the highest mountain in Wales, then take on the might of Cadr Idris and Pen y Fan before nightfall.

Colin said: “It is a small ask for the rest of us to step up to a challenge once in a while to support these very special people. It was so humbling to spend time at Tˆy Hafan. It is such a fantastic cause doing amazing things for families across Wales.”

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National play day National Play Day is a campaign that highlights the importance of play in children’s lives and is a celebration of children’s right to play, so we made sure we celebrated in true Tˆy Hafan style.

Carol was one of the children who got involved in a day filled with bubble making, bug catching and den-building. Mum, Dong Luo said: “Carol was so excited when we told her we were going to Tˆy Hafan for the day! It has been a fantastic day and all the kids have had such fun. Play is really important for Carol and the staff at Tˆy Hafan are really good at knowing what activities suit her individual needs.”

Children in Need

Social media

This year, we celebrated being awarded a BBC Children in Need grant of £107,238 with a Pudsey Party at the hospice.

Our social media platforms have been incredibly successful in taking the sense of joy, fun and care that is so synonymous with the service provided by Tˆy Hafan and presenting it to more supporters than ever before. The launch of #FamilyFriday, our weekly blog, allows people a glimpse into our world. It has been packed with truly illuminating posts, from why our supporters choose to raise money for Tˆy Hafan and a day in the life of an employee, to the heart-breaking family stories that remind us of the importance of Tˆy Hafan.

Visiting children and their families, along with staff members, donned their pyjamas for the party, which included face-painting, cake decorating and a surprise appearance from Pudsey Bear himself!

The grant will fund the post of a full-time Palliative Care Play Therapist for the next three years. Cath Thompson, former Head of Care Services at Tˆy Hafan, highlighted the importance of the role and said: “This new post will provide further opportunities for a child’s voice to be heard and, ultimately, will empower the children we support to be involved in decisions that affect them through the medium of play.”

Another very successful campaign was our Precious Moments Advent Calendar, where for the 24 days of December leading up to Christmas, we were treated to some of our families’ most precious moments they have had with the help of Tˆy Hafan, in a campaign fronted by little Liorah McCarthy.

She added: “We are tremendously grateful to BBC Children in Need for awarding the grant as it will make such a difference to the families we support from across Wales.”

Retail The Retail department has gone from strength to strength over the last year, expanding our portfolio of shops from 25 to 29 throughout south and mid Wales. We expanded our unique boutique range with the opening of an “Emporium” in Abergavenny, and regular shops opening in Haverfordwest, Aberystwyth and Tenby vastly improved our exposure in west Wales.

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36 children accepted

97 sessions of music therapy delivered in hospice and community

r 70 Ove entary ns plem com y sessio e ap ther ered in th deliv ice and hosp unity m com

72%

our y in num

2014/

of referred children were under school age.

Average age at referral continues to drop – three years

13 children discharged as attained 19 8

Over 100

specialist play sessions delivered in the community

25

children sup

year umbers

014/15

54

n supported

029 2053 2199 www.tyhafan.org

75% of children

24 children died

five died at hospice and ten were supported by Tˆy Hafan staff in their choice of place of death

who died were less than one year old and 50% had been in receipt of care services for fewer than six months

Over 70 families

Over 600 siblinpgsactivities

30 grou were invited to over ilies benefiting with around 52 fam from group support

Outreach services continue to be popular. Approximately 60 families were actively supported by a Family Support Practitioner and around 25% of these are bereaved families

were supported by parent/carer groups

42 Ambassadors 669

Volunteers

234 Staff 9

annual review 2014/15

income generation overview Thanks to the generosity of our supporters and the huge commitment of our ambassadors, volunteers and staff, in 2014-15 we were able to achieve record levels of income and significantly increase charitable expenditure whilst affording investments that will provide sustainable long-term returns.

Top of our list of priorities is to extend the scope of our service. Despite our concerted efforts, we know that there are children in Wales who are expected to die in childhood who we have yet to identify, families that would greatly benefit from our support that we’ve not yet discovered.

We work tirelessly with health and social care professionals developing awareness of our services and encouraging those that might be hesitant to accept a referral to a hospice to look again, to reconsider.

We use our shops to represent us in communities that might perceive Tˆy Hafan as a south Wales charity.

It’s not for economic reasons that the four shops we opened in 2014/15 are in Abergavenny, Haverfordwest, Aberystwyth and Tenby. These shops develop the awareness of

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Tˆy Hafan by providing a presence in communities in which the prevalence of children in care is lower than in the valleys and urban communities of south Wales.

The number of children in care, the increasing complexity of children in care, the tenure of children in care and the extension of our services in the hospice and in the community throughout rural Wales means that our focus on fundraising and commercial initiatives has never been greater.

Thankfully, we can report that 2014/15 was a year of income growth, a year in which we benefitted from the additional scalability and opportunity afforded by a restructure of the income generation teams in 2013/14.

Despite difficult trading conditions,

overall Fundraising and Commercial income increased by 11.3% on 2013/14. The surplus generated enabled the amount spent on care to increase by 15.2% despite continued significant investments being made in developing a base of regular donors, an activity that will provide long-term sustainable income.

Community Fundraising team.

Following Crackerjackpot being hived as a wholly owned subsidiary last year to enable it to provide a white label service to other good causes, we’re pleased to report the first customer of that service, Longfield, an organisation providing hospice care in the Cotswolds, joining the lottery.

To have significantly grown the business whilst investing in its future demonstrates a well considered strategic balance and bears witness to the commitment of a well motivated team, well integrated with, and supported by, Care and other departments. As well as the opening of four shops and the extension of the individual giving programme, the year also witnessed an expansion of our Business and

The measures we have taken and the future plans we have to further extend and develop income generation give confidence that Tˆy Hafan can continue to extend the service we provide, in the hospice and in the community and can continue to spread awareness amongst professionals and families alike to ensure we are able to offer care and support to all those that would benefit.

029 2053 2199 www.tyhafan.org

investments 2%

fundraising 40%

retail 31%

local health boards 3%

lottery 24%

income derived from supporter fundraising and commercial activities

increased by 12%

in the 2014/15 financial year 11

annual review 2014/15

overview of care services We continue to deliver increasing numbers of children and their families a range of care services that endeavour to meet their individual and complex needs. Each family is unique in the needs they have and this depends on many factors, including the child’s condition, age, life expectancy and lots of other family and social factors. Our challenge is to help families identify these wide-ranging and complex needs and tailor our service to meet them.

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Neonatal care

Transitioning to adulthood

The last year has seen an increase in the number of very young babies referred to the service. The prognosis for these babies can be very poor and families have often spent several weeks or even months in hospital with their babies. Families in this situation are offered support either by coming to the hospice for end of life care or by having community outreach services in the hospital and home. Close working relationships with the neonatal units are being fostered as it is appreciated that the ongoing nature of the support Tˆy Hafan can offer, including bereavement and sibling support, is something that hospital staff are not in a position to do. By working closely together, we can ensure that families have the best possible experience at such a devastating time.

An increasing number of young people accessing Tˆy Hafan services are now reaching adulthood and being discharged from care services. This presents an enormous challenge for the young people, their families and for service providers, including Tˆy Hafan. We have been working very closely with adult service providers to ensure that the complex needs of this group of young people are taken into account and appropriate services made available.

We hope to be in a position to extend this support with the appointment of a Transition Worker later in 2015.

Service user involvement We commissioned our second biennial service user survey from Beaufort Research in autumn 2014. The survey questions were

largely the same to allow comparison and we also joined with other hospices so that we were able to benchmark our results against other hospice settings.

The results were really pleasing, with 98% of families surveyed saying they were happy with services provided and that they would recommend us to other families. The research commissioned by the Welsh Institute of Health and Social Care was completed and will be launched later in 2015. The results of this will help to determine the future strategic direction for Tˆy Hafan and children’s palliative care in Wales.

We involved some young people and parents in supporting recruitment of senior posts in the organisation including the new Director of Care who is due to start later in 2015.

Goodbyes This year saw care services saying goodbye to two very long-serving members of the senior management team. Both our Director of Care, Jayne Saunders, and Head of Care, Cath Thompson, left in early 2015 after having spent over 16 years involved in the delivery of care services. Both had been here at the opening of the hospice in 1999, so it was a huge change for the staff and also the children and families who had known them for so many years.

We wish them both the very best as Jayne goes on to enjoy a well-earned retirement and Cath begins a new chapter, directing a programme of growth and service development at Skanda Vale Hospice.

029 2053 2199 www.tyhafan.org

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annual review 2014/15

our plans for the future strategic objectives and offer care to all • Identify qualifying children in Wales

• Innovate funding to ensure sustainable

the best and most • Provide comprehensive care possible

Attract , retain and engage the • best volunteers and staff

the primary authority • for Become paediatric palliative care in

most effective use of • Ensure charitablethefunds

Wales

priorities for fundraising in regular donor • Invest recruitment to develop sustainable income

• develop a community • of Further friends Innovate to engage youth

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• Grow of shopsand diversify the network e-commerce • Harness

develop Crackerjackpot • byFurther extending membership to other good causes

029 2053 2199 www.tyhafan.org

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annual review 2014/15

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029 2053 2199 www.tyhafan.org

elain’s story

Elain James, aged five, was referred to Tyˆ Hafan in January 2011. She was antenatally diagnosed with congenital heart disease, but it wasn’t until she was born that her family knew the full extent of her illness.

Tests revealed Elain had multiple complicated heart conditions and a rare genetic disorder called 22q11.2 Deletion Syndrome. She also has a permanent feeding tube attached to her stomach.

daughter, Martha, offering short break care at the hospice, a listening ear, a shoulder to cry on and vital emotional and practical support for Bridget and Gareth, at their home in Aberystwyth.

Elain underwent heart surgery at just three months old and spent five months in hospital. Elain now has a good quality of life, but sadly, it is only a matter of time before her condition deteriorates.

Bridget said: “Elain loves Tˆy Hafan. They are a lifeline for us and help us create special memories which we’ll cherish forever.”

Her mum, Bridget, said: “Her heart condition is repairable in many cases but unfortunately for us, not in hers. It’s very rare to have a child with a heart condition that can’t be fixed.”

Caring for a child like Elain can, and does, affect all aspects of family life.

Tˆy Hafan provides vital support for the whole family, including their baby

Elain adores relaxing in the hydrotherapy pool and its new desert-island themed adventure playground.

“We are able to relax at Tˆy Hafan and do the normal things that other families may take for granted. It can be difficult at times, but knowing that Tˆy Hafan is there for us is such a comfort,” said Bridget.

Not knowing how long they have left with their beautiful daughter means Bridget, 30, and Gareth, 35, want to make every

moment count. Bridget added: “We feel extremely lucky that Elain currently has such a great quality of life and is an extremely happy and content little girl.

“We would like to thank Tˆy Hafan for all they do for us and are so grateful they are with us on our journey.”

“It can be difficult at times, but knowing that Tˆy Hafan is there for us is such a comfort.”

“Her heart condition is repairable in many cases but unfortunately for us, not in hers. It’s very rare to have a child with a heart condition that can’t be fixed.”

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annual review 2014/15

financial summary During 2014/15, the cost of providing comfort, care and support to the children and families was ÂŁ4.0m, a rise of 8% on the previous year. We received 3.6% of our income as funding from local health boards and the Welsh Government during 2014/15.

We are pleased to report that income derived from fundraising and commercial activities increased by 12.4% in 2014/15 when compared to 2013/14 and that the targeted financial surplus from these activities was achieved.

income ÂŁ9.3 million

expenditure ÂŁ8.4 million 45% charitable activities

24% lottery 31% retail

care services expenditure

40% fundraising

26% cost of running retail operation

1% investment engagement costs

15% cost of fundraising

3% local health boards 2% investments 18

2% medical costs

13% cost of running lottery operation

45% care staff costs

14% support costs 22% hospice running costs

16% care in the home and in the community

1% research and training

029 2053 2199 www.tyhafan.org

thank you Once again, we would like to thank each and every Tˆy Hafan supporter.

As you can see, 2014/15 has been yet another fantastic year for the charity thanks to your incredible support. We are truly grateful to every corporate supporter that chose Tˆy Hafan as its charity of the year, every team that got together to take on an epic challenge, each individual that played the lottery and everyone who donated their preloved items to one of our shops – every single supporter makes a difference to the lives of children not expected to reach adulthood.

Without our fundraisers, volunteers and ambassadors who give up so much to help Tˆy Hafan provide vital support to the families who depend on us, it simply would not be possible.

Thank you to every member of the Tˆy Hafan family

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our outcomes There are 12 outcomes we want families in our care to say:

Our child’s referral to Tyˆ Hafan was dealt with swiftly and professionally

We are receiving the best specialist care to meet our needs, as individuals, and as a family

We know how to get expert help

We have opportunities to discuss our feelings with others in the same situation

We feel supported in the whole journey, through life and after death

My child will be helped to reach their true potential

029 2053 2199 www.tyhafan.org Tyˆ Hafan, Hayes Road, Sully CF64 5XX Registered Charity No: 1047912

we can live a full, family life

We are supported in the best environment for us

We receive the information and guidance we need so we can make informed decisions

We can choose where to spend our child’s last days

We feel supported and don’t have to face our journey alone

We understand what type of care and support we need