annual review 2013/2014

annual review

2013/14the hospice for children in Wales

15 years of being there

Ty 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, Ty 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 short-break care, therapeutic services, physical, social, psychological or spiritual support and it will engender end-of-life care and bereavement support.

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

Ty 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

The children in the care of Ty 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.

chairman’s welcome

annual review 2013/14

contentschairman’s welcome ........................... 2

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

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

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

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

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

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

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

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

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

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

our visionA Wales where children who are expected to die in

childhood live a full family life

our missionTo offer a high standard of free care and support to

the families of children in Wales who are expected

to die in childhood

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Our service has evolved tremendously since our inception. Originally, Ty Hafan was a bright and beautiful building where life-limited 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.

Recognition of the lack of provision for life-limited 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 Ty Hafan Appeal in 1994. Diana, Princess of Wales, became a Patron of Ty 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 Ty 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”.

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

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

how it all started

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our 15 year journey

1990

Ty Hafan registers as a charity.

1993Site acquired from Llandough NHS Hospital Trust for the building of the hospice.

1994South Wales Echo launches Ty Hafan Appeal.

1994HRH Diana, Princess of Wales becomes patron of Ty Hafan.

1995Luciano Pavarotti Concert in Cardiff raises money for Ty Hafan.

1996Building of the hospice commences.

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

2001HRH the Prince of Wales

becomes patron of Tyŷ Hafan and makes his first visit to the hospice. 2003 Ty Hafan increases

service to seven days.

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2004Ty Hafan founder

Suzanne Goodall is awarded an MBE in Her Majesty the

Queen’s New Year’s Honours. 2005

Expansion of family support team.

2008Ty Hafan scout group is formed.

2009Ty Hafan rebrands and celebrates its 10th birthday.

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

2012Ty Hafan creates

Education and Research department.

2013 Ty Hafan receives

awards from the Royal College of Nursing.

2014Ty Hafan celebrates its

15 year anniversary.

todayWe are the nurses and therapists helping families at home, in hospital, at school or at the hospice; the experts on the end of the phone; the advisers telling families which benefits and services they’re entitled to; the volunteers helping and championing Ty Hafan; the fundraisers who make

it all possible.

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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.

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

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.”

Ty 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.

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

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

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.

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.

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

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.

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

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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029 2053 2199 www.tyhafan.org

Cath Thompson,Ty 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.”

volume 1 issue 2

sharing best practice in paediatric palliative care


insight

inside this issue:editor’s welcome 2editorial panel

2-3wait, watch and wonder 4hydrotherapy 6 ty hafan care services 9epidermolysis bullosa 10-13 together for short lives

conference 14publications of interest

and study days 15

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our year in numbers

2013/2014615 volunteers

260Three children

died at the hospice and four families were

supported at end-of-life in hospital or at home

life-limited children supported

216 staff members

49 children admitted during the

year

£10,137 = daily cost to run

care services

598 life-limited

children supported since 1999

69% of children in our care received community

outreach care

We supported more than

100

community-based partner staff

via teaching and support sessions

85% of children

received care in the hospice

41Ambassadors

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our year in numbers

2013/2014We delivered nearly 50 scoutgroup sessions, including scout camp

260 Our outreach play practitioners provided over

75 specialist play sessions

We facilitated more than

70 mums’

and dads’ group activities

Our complementary therapists delivered nearly 300 sessions in the hospice

and in the community

300 sessions

life-limited children supported

Average age of referral = 4.2 years

Our music therapist delivered 190 individual music sessions,

0Over 150

families have

been supported

emotionally and

practically by our

family support

practitioners 15We ran

24 group

sessions

for brothers and sisters

that were attended by

nearly 300 siblings

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More children than ever before are being cared for by Ty 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 Ty 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.

Ty 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.

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 Ty 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 Ty Hafan and our delivery of the ambitious commitments we have made.

2013-2014 was a year of great change, success and evolution at Ty 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.

fundraising overview


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income derived from supporter fundraising and commercial activities

increased by 4.7%

in the 2013-14 financial year

retail31% local health

boards4%fundraising

34%

lottery28%

investments3%


Our Welsh 3 Peaks Challenge in 2013

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“We know that without Ty Hafan she wouldn’t be achieving her full potential.

Every time she stays at Ty Hafan, we can see her developing. “When we were told she held a rattle for the first time at Ty Hafan, we couldn’t believe it! They spend hours giving different therapies

in the music, sensory and play rooms –

it makes such a difference to her life,” said Willow’s mum, Kelly

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Symptom management

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.

Determining need

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

Putting play first

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.

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.

Asking the families

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.

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.

overview of care services


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"There are so many ways

Ty Hafan continues to be

there for our family. “From the visits and phone calls from our family support

practitioner, Hayley, to the short breaks we have at the hospice,

they help make sure every moment we have with Alice is spent

creating memories that will last forever. We know that when

the time comes, and Alice reaches the end of her life, they

will support us through that too,”

said Alice’s mum, Hannah.

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Ty 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 Ty 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.

Ty 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.

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.

our plans for the future

strategic objectives• Identify and offer care to all qualifying children in Wales

• Provide the best and most comprehensive care possible

• Develop awareness and become the premier Welsh charity

• Achieve best practice, collaborate and be transparent and open

• Attract, retain and engage the best volunteers and staff

• Innovate to ensure sustainable funding

• Demonstrate independence of thought and action

priorities for fundraising• Invest in regular donor

development to develop sustainable income

• Innovate to engage youth

• Develop friends and community programmes

• Focus on high income opportunities

• Grow and diversify the network of shops

• Harness e-commerce

• Develop Crackerjackpot by extending membership to other good causes

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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.

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

our outcomes

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

Our child’s referral to Ty Hafan was dealt with

swiftly and professionally

My child will be helped to reach their true

potential

We feel supported in the whole journey, through life

and after death

We are supported in the best environment

for us

We have opportunities to discuss our feelings with others in the

same situation

We are receiving the best specialist care

to meet our needs, as individuals, and as a family

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We know how to get expert help

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 understand what type of care and

support we need

We feel supported and

don’t have to face our journey alone.

we can live a full, family life.

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financial summary


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.

During 2013-14, the cost of providing comfort, care and support to the children and families was £3.7m, 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.

49% care staff costs

14% care in the home and in the

community

2% medical costs

9% support costs

care services expenditure

24% hospice running costs

1% research and training 1% child therapy

expenditure £8.4 million

44% charitable activities

1% governance

1% investment management costs

16% cost of fundraising

14% cost of running lottery operation

24% cost of running retail operation

income £8.3 million

31% retail 28% lottery

34% voluntary income

3% investment income

4% public funding

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thank you


The public helped to create Ty 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 Ty 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 Ty Hafan family.

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

Thank you for caring x

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www.tyhafan.org

annual review 2013/2014

Documents

Transcript of annual review 2013/2014