annual review 2013/2014

annual review

2013/14 the hospice for children in Wales

15 years of being there

annual review 2013/14

chairman’s welcome The children in the care of Tyˆ Hafan are expected to die in childhood.

The conditions that beset them are varied yet all are complex and place great demands on the child, their family, their carers and their friends.

Tyˆ Hafan provides the highest standard of comfort and support that they and their families need, in our hospice in Sully in the Vale of Glamorgan, in the community and in their homes throughout Wales.

We aim to help them realise their potential and live a full family life, creating and cherishing a lifetime of memories, making the most of short and precious lives. Since our inception in January 1999, Tyˆ Hafan has been there, and continues to be there, for nearly 600 families in Wales.

For parents and families, as well as coping with the enormity of their child’s diagnosis, they must also provide around-the-clock care and be on constant alert throughout their child’s life.

We believe that no family should go through this alone. We offer comfort, care and support services to suit the assessed needs of each family. This might include shortbreak care, therapeutic services, physical, social, psychological or spiritual support and it will engender end-of-life care and bereavement support.

A Wales where children who are expected to die in childhood live a full family life

By providing care, by always being there when needed, Tyˆ Hafan imparts some sense of normality that is so often taken for granted by others.

Tyˆ Hafan is an independent charity and in the 2013-2014 financial year received less than 4% of our total income from statutory funding. To continue to offer this unique service to families, we rely on the generosity of the Welsh public, our fantastic supporters and donors, our corporate sponsors and volunteers. To you, I extend a massive thank you for everything you do to make what we do possible.

It is an honour to serve as Chairman of a charity that is truly innovative, a world leader in paediatric palliative care and an organisation of which all of Wales should be justly proud.

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

Mervyn Ham

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our vision

our mission To offer a high standard of free care and support to the families of children in Wales who are expected to die in childhood

contents chairman’s welcome............................ 2

overview of care services ..........12 + 13

how it all started................................... 3

our plans for the future...............14 + 15

our 15 year journey ........................4 + 5

our outcomes...............................16 + 17

key achievements..........................6 + 7

financial summary..............................18

our year in numbers......................8 + 9

thank you ............................................19

fundraising overview ...................10 + 11

how it all started It was the determination of one woman from Beddau, combined with the generosity of the people of Wales, which led to the creation of Tyˆ Hafan – Wales’ first children’s hospice.

Our service has evolved tremendously since our inception. Originally, Tyˆ Hafan was a bright and beautiful building where lifelimited children and their families could go for care and comfort. Today, we focus on providing a philosophy of care and take our support to wherever it is needed; whether that is at home, at school or in hospital.

Research into the need for a children’s hospice, established that there were as many as 300 children who could benefit from the service.

Jacob Ferriday, 17, was one of the first three children to be referred to Tyˆ Hafan in 1999.

Recognition of the lack of provision for lifelimited children and their families inspired Suzanne Goodall’s 11 year fundraising campaign to build our hospice overlooking the Bristol Channel in Sully, Vale of Glamorgan.

The South Wales Echo played a big part in the campaign, launching the Tyˆ Hafan Appeal in 1994. Diana, Princess of Wales, became a Patron of Tyˆ Hafan and organised a fundraising concert with Luciano Pavarotti a year later.

More than £2.3m was raised towards building and equipping the hospice, which finally opened on 25 January 1999. We welcomed the first three children to Tyˆ Hafan and, to date, we have supported a further 598 life-limited children and their families thanks to continued generosity of the people of Wales.

In the future, we expect this number to rise significantly. Our mission is to identify and make contact with every child in Wales who is expected to die in childhood and offer them our unique care and support.

Suzanne Goodall, MBE, said: “I had no doubts that the people of Wales, understanding the situation that these children and families faced, would open their hearts and give generously. My faith was, indeed, justified”.

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annual review 2013/14

our 15 year journey 1994

1996 Building of the hospice commences.

Luciano Pavarotti Concert in Cardiff raises money for Tyˆ Hafan.

Tyˆ Hafan registers as a charity.

1993

1994

Site acquired from Llandough NHS Hospital Trust for the building of the hospice.

South Wales Echo launches Tyˆ Hafan HRH Diana, Princess of Appeal.

Wales becomes patron of Tyˆ Hafan.

1995

1990

2001 HRH the Prince of Wales becomes patron of Tyˆŷ Hafan and makes his first visit to the hospice.

2003 Tyˆ Hafan increases service to seven days.

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1997 The hospice building is handed over to Tyˆ Hafan for fitting and equipping.

2014 Tyˆ Hafan celebrates its 15 year anniversary.

2013 Tyˆ Hafan receives awards from the Royal College of Nursing.

today

2012 Tyˆ Hafan creates Education and Research department.

2011 BBC Wales screens four-part series, Beautiful Lives.

2009

2004 Tyˆ Hafan founder Suzanne Goodall is awarded an MBE in Her Majesty the Queen’s New Year’s Honours.

2008 2005

Tyˆ Hafan rebrands and celebrates its 10th birthday.

We are the nurses a nd therapists helpin g families at home, in hospital, at school or at the hospice; the exp erts on the end of th e phone; the advisers telling families which benefits and services they’re entitled to; th e volunteers helping a nd championing Tyˆ Hafan; the fundra isers who make it all possible.

Tyˆ Hafan scout group is formed.

Expansion of family support team.

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annual review 2013/14

key achievements Opening our state-of-the-art hydrotherapy pool was a significant highlight of 2014.

The pool provides an ideal environment for therapy, communication, socialisation and play. It is fully equipped with speakers, disco and sensory lights as well as hoists to help children exit and enter the pool.

children with complex medical needs.

We are passionate about providing our families with enriching experiences and believe that every child has the right to enjoy facilities like a hydrotherapy pool.”

Jayne Saunders, Director of Care at Tyˆ Hafan, said: “The facility provides a fun, safe and comfortable environment for

Tyˆ Hafan Ambassador Leigh Halfpenny officially opened the pool in April 2014.

The rugby star was delighted to cut the

ribbon in front of thrilled families and staff members who couldn’t wait to use the facility.

hydrotherapy treatment is in providing both physiological and psychological benefits.”

He said: “It was an honour to officially open the hydrotherapy pool and it was wonderful to see the children and families enjoying the new facility. As a professional sportsman, I know how effective

We are incredibly grateful to the many groups, businesses and supporters that contributed towards the £400,000 cost of the hydrotherapy pool.

emporium Expanding and diversifying our retail portfolio was a focus for us in the 2013/2014 financial year.

One of the ways we achieved this was through the launch of our boutique range – Emporium.

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Selling high-end items in a boutique environment proved to be a big success in our first Emporium store in Cowbridge.

We now have plans to open additional boutique-style shops across Wales in addition to exploring the launch of Outlet shops, selling quality items at affordable prices.

new playground A turf cutting ceremony marked the start of building work on our new £230,000 adventure playground.

The design of the new site is based on a desert island theme due to our location next to the Bristol Channel. The entire space is accessible for wheelchair users and every piece of equipment has been designed with integration in mind.

insight new events Keeping the public engaged with exciting and innovative events has been key for Tyˆ Hafan.

In 2013, we launched our Insight journal to provide a platform for sharing experiences and ideas on best practice in paediatric palliative care.

Launching a Bubble Football fundraising event, a particular favourite with our dads’ group in 2013, and rolling out a new Rainbow Run has been a focus for our events team.

Edited by Mandy Brimble, our Lead Practitioner for Education and Research, the publication is distributed to healthcare professionals, GPs and specialists in paediatric palliative care.

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Cath Thompson, Tyˆ Hafan’s Head of Care Services, said: “Hydrotherapy is an effective treatment that creates a sense of well-being and healing for the child and all members of the family.

“It can alleviate many symptoms associated with pain, whether physical or spiritual and can be quiet and reflective. It can alleviate social isolation and bring families closer together, literally, allowing parents to physically hold their children no matter how big they may have grown.

“Of course water can also just be fun. It can break down barriers, be noisy, exciting and give freedom to those who feel restricted either physically or emotionally.”

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We supported more than

ÂŁ10,137 = daily cost to run care services

615

100

community-based partner staff via teaching and support sessions

Three children died at the hospice and four families were supported at end-of-life in hospital or at home

volunteers 598

life-limited children supported since 1999

49 children admitted during the year

216

staff members

69% of children in our care received community outreach care 85% of children received care in the hospice

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annual review 2013/14

fundraising overview 2013-2014 was a year of great change, success and evolution at Tyˆ Hafan. Thanks to our donors’ generosity and the huge commitment of our volunteers and staff, we brought in record total income that enabled increased charitable expenditure and investments that will provide sustainable long-term returns.

More children than ever before are being cared for by Tyˆ Hafan. The number increased to 260 following the admission to care of 49 children in the 2013-14 financial year. Yet we know that there are families in Wales that would benefit from the care of Tyˆ Hafan, whose children have qualifying conditions and who we have yet to identify.

While a good job has been done, making those health and social work professionals that might refer children to our care aware of the scope of our services remains a priority.

The number of children in care, the increasing scale of our commitments to hospice, outreach and respite care and the increasing complexity of assessed care needs, especially as the average age of admission declines, means that our focus on fundraising has never been greater.

Thankfully, we can report that income derived from fundraising and commercial activities increased by 4.7% in the 2013-14 financial year when compared to the 2012-13 financial year and that the targeted financial surplus from these activities was achieved.

Tyˆ Hafan’s income is principally derived from charity fundraising, retail operations and the Crackerjackpot lottery supported by grant aid from local health boards and return on the investment of reserves.

We have plans to increase the services we provide, the number of children we care for and the number of families we support both in the hospice and in the community.

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Charitable expenditure will grow and it is vital we invest in fundraising and commercial activities to deliver these ambitious plans.

In 2013-14 we bolstered fundraising efforts and restructured to enable greater focus on grant-making bodies, the legacy programme, business and community fundraising and the development of a base of regular donors. The latter is an investment that will provide sustainable future income.

We also rejuvenated and extended our organised events portfolio. Two new shops were opened, one of which is the first to utilise the ‘Emporium by Tyˆ Hafan’ premium brand. This brought the total number of shops to 25 and signalled a programme of diversification in retail that also encompassed the introduction of a low-cost concept that has, so far, been applied to three shops. Crackerjackpot was hived off as a wholly owned subsidiary to afford the prospecting of the business of other good causes and consequent further growth of this vital income stream.

The measures we have taken and the future plans we have for the further development of fundraising are scalable and sustainable and we are confident about the future prospects for Tyˆ Hafan and our delivery of the ambitious commitments we have made.

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retail 31%

income derived from supporter fundraising and commercial activities

increased by 4.7%

fundraising 34%

www.tyhafan.org

local health boards 4%

lottery 28%

investments 3%

in the 2013-14 financial year

Our Welsh 3 Peaks Challenge in 2013 11

annual review 2013/14

“We know that withou t T yˆ Hafan wouldn’t b she e achieving h e Every time r full poten tial. she stays a t T yˆ Hafan , we can see her de veloping.

“When we were told s he held a ra the first tim ttle for e at T yˆ Hafa n , we could it! They sp n’t believe end hours giving diffe in the mus rent therap ic, sensory ies and play ro oms –

it makes su ch a differenc e to her life,” said Willow

’s mum, Ke

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lly

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www.tyhafan.org

overview of care services We strive to provide excellence in all services we deliver to children with life-limiting conditions and their families.

Each family has their own set of individual needs and so our challenge is to make sure everything we do makes a difference to the lives of every child and family member.

Symptom management

Putting play first

Asking the families

By increasing our physiotherapy provision within the hospice environment to five days every week, we have been able to be more reactive to symptom management for children at the end of their lives. The hospice physiotherapist can liaise with the community or hospital team so that children staying for short break care benefit from coordinated care.

This year, we will recruit a Palliative Care Play Practitioner to support and develop a play service to meet the play needs of children both in the hospice and in the community. This role will drive forward a core value of the right of each child to play and to be themselves.

This year we will repeat a service evaluation study last carried out in 2012. This time we will be able to compare results to other children’s hospices who are taking part in the project being carried out by Beaufort Research.

Determining need We began working with the Welsh Institute of Health and Social Care to determine the needs of children and families living with lifelimiting conditions. This research will assist in determining a strategic direction for children’s palliative care in Wales. The results will be available in 2015.

Another important development will be the recruitment of a Male Family Support Worker to expand the current provision that specifically supports the psychological and social needs of men and boys.

The outdoor play equipment was installed earlier this year and so the project will continue with the landscaping of the grounds to make it a remarkable area for exploration, play and relaxation.

The refurbishment of the Multi Sensory Room will complete our commitment to the putting play first agenda.

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annual review 2013/14

s y a w y n a m o s re a re e h "T e Tyˆ Hafan continues to b mily. there for oufror mfa our family support 14

one calls “From the visits and ph ve at the hospice, the short breaks we ha practitioner, Hayley, to th Alice is spent ery moment we have wi they help make sure ev ow that when t will last forever. We kn creating memories tha her life, they ce reaches the end of Ali d an s, me co e tim the that too,” will support us through ah. said Alice’s mum, Hann

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our plans for the future We are acutely conscious of the importance of the palliative care we provide to the children we care for and the support we are able to afford their families.

Tyˆ Hafan is one of the world’s leading providers of paediatric palliative care and continues to define and share best practice.

We are an ambitious charity targeting provision of the best and most comprehensive possible care, provided in the hospice and in the community to children destined to die in childhood from throughout Wales.

The greatest challenges that faces Tyˆ Hafan are being able to predict the future requirements of the people of Wales for the charity’s services, respond in a timely way and ensure the continued relevance of the charity.

Epidemiology, changes to the make up of the population of Wales, changes to practice within the National Health Service in Wales,

changes to condition-based prognosis and the increasing awareness of our services amongst health professionals, especially those involved in pre and immediate postnatal care, make predicting the future needs more difficult than might be evident.

The constant, however, is that providing increasingly complex care in more places to more children, geographically dispersed throughout Wales, requires a focus on the development of scalable and sustainable income streams.

Tyˆ Hafan has developed a sophisticated fundraising and marketing infrastructure and is already scaling and diversifying its operations to meet the future needs of children and families.

strategic objectives Identify and offer care to all •

qualifying children in Wales

Attract, retain and engage • the best volunteers and staff

the best and most • Provide comprehensive care possible

to ensure sustainable • Innovate funding

Develop awareness and become • Demonstrate independence • the premier Welsh charity of thought and action Achieve best practice, • collaborate and be transparent and open

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

• Develop friends and • community programmes

Innovate to engage youth

and diversify the • Grow network of shops

• Harness e-commerce Develop Crackerjackpot • by extending membership to other good causes

ocus on high income • Fopportunities 15

our outcomes

Every week, parents in Wales are told the devastating news that their child has a life-limiting condition.

We want to identify every child in Wales who is expected to die in childhood and offer them and their family our unique care and support.

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

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My child will be helped to reach their true potential

We are supported in the best environment for us

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

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

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

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 can live a full, family life.

We understand what type of care and support we need

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

We know how to get expert help 17

annual review 2013/14

financial summary During 2013-14, the cost of providing comfort, care and support to the children and families was ÂŁ3.7m, a rise of 4% on the previous year. During 2013-2014, we received 4% of our income as funding from local health boards and the Welsh Government.

We are pleased to report that income derived from fundraising and commercial activities increased by 4.7% in 2013-14 when compared to 2012-13 and that the targeted financial surplus from these activities was achieved.

income ÂŁ8.3 million

expenditure ÂŁ8.4 million

care services expenditure

44% charitable activities 31% retail

28% lottery 1% governance

4% public 3% investment funding income

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34% voluntary income

24% cost of running retail operation

49% care staff costs

2% medical costs 9% support costs

1% investment management costs

14% cost of running lottery operation

16% cost of fundraising

24% hospice running costs

14% care in the home and in the community

1% research and training

1% child therapy

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thank you We would like to take this opportunity to thank each and every Tyˆ Hafan supporter.

The public helped to create Tyˆ Hafan more than 15 years ago and their generosity continues to ensure we can provide vital care and support to life-limited children and their families.

It could be a business supporting Tyˆ Hafan as its charity of the year, a team climbing mountains, an individual playing the lottery or someone donating unwanted items to one of our shops – every single supporter is making a difference to the lives of children not expected to reach adulthood, and for that, we are truly grateful.

Whether you are a supporter, a volunteer or an Ambassador – you are all part of the Tyˆ Hafan family.

Thank you for caring x

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15 years of being there