the family hospice for young lives
annual review 2012
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a welcome from the chairman vision and mission statement providing care, being there outstanding services offered at tyˆ hafan bbc documentary ‘beautiful lives’ tyˆ hafan in the community because you care, so can we chefs’ night out two major capital projects started our costs our plans for the future thank you
Tyˆ Hafan annual review 2012
a welcome
from the chairman It was an honour and a privilege to be appointed Chairman of Tyˆ Hafan, a charity that I have for so long admired and respected. During my period as Chair I aspire to capitalise upon the sound foundations created by all of those trustees who have gone before me to ensure that the invaluable service to children and their families continues to flourish. During 2011 Tyˆ Hafan had the foresight to commission an external strategy review into the provision of its care services; this review was undertaken by a respected expert in the field, Dame Elizabeth Fradd. The findings of this review were considered by the Board and subsequently circulated to key stakeholders. The review provides a valuable insight into what the world of paediatric palliative care could have in store and will inform our future strategy. I consider it to be a sign of Tyˆ Hafan’s maturity that it is prepared to undertake such an external review and to subject itself to the constructive criticism that comes with any such review (see page 8). As Tyˆ Hafan moves into the next phase of its development and as the size and complexity of what Tyˆ Hafan delivers increases, we shall be placing a keen emphasis upon the development of long term working relationships and will aspire to the highest possible standard of governance, be it clinical, corporate or charity.
In these changing and challenging times we look to our independence of thought, action and voice to help us continue the progress we have already made as an organisation, recognising that first and foremost we are a charitable organisation.
Mervyn Ham
Tyˆ Hafan annual review 2012
vision & mission statement Vision: “A Wales where children who are expected to die in childhood live a full family life.” 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.” Strategic Objectives for 2011-12 1. To identify and make contact with every child in Wales who is expected to die in childhood and offer them the opportunity to receive care and support from Tyˆ Hafan in the most appropriate way necessary to suit their needs.
9. Build the Tyˆ Hafan brand and position Tyˆ Hafan as the premier charity of choice in the Welsh community.
2. Maintain sufficient resources to ensure that every child who wants to receive our service is able to do so in the manner most appropriate to their needs.
11. To ensure that maximum advantage is taken of technology to support the business objectives.
3. To continually review the range, impact and effectiveness of the care services offered to children and their families and to proactively respond to changes in order to ensure that they receive the highest standard of care and support. 4. To ensure that all members of the child’s family are supported in the most appropriate way possible in order that they themselves are able to afford their child(ren) a supportive environment. 5. To ensure that any child in our care who exceeds the age of 19 is effectively prepared for, and introduced to, the adult services that they will need. 6. To maintain a physical environment for the delivery of care to the highest standard. 7. To secure the freehold of the land at the hospice.
10. To secure 30% of hospice running costs from statutory sources.
12. To be a demonstrable exemplar in the charity world of best practice in all of the activities undertaken including governance, fundraising, transparency and openness. 13. To be the only Wales charity for Children’s palliative care by 2015. 14. To relocate Tyˆ Hafan HQ closer to the hospice. 15. To ensure that there are always sufficient numbers of qualified and/or trained personnel to deliver the objectives. 16. To continually review and monitor the effectiveness of operation of the board of directors, its governance, adherence to legislation and ability to provide strategic direction. 17. To have reserves which would produce income equivalent to 25% of the annual hospice running costs.
8. Increase annual surplus to ensure the long term sustainability of service for the children and families of Wales. 5
providing care, being there Tyˆ Hafan offers specialist palliative care tailored to the needs of life-limited children and young people and is free of charge to families in Wales who need it. We recognise the four elements that constitute total care: physical, emotional, social and spiritual. Through assessment, planning, implementation and evaluation, a professional package of specialist palliative care is designed to meet the needs of every child and family member and we provide our support wherever it is needed – at home, in hospital, at school or at the hospice.
The year 2011-2012 saw 50 admissions to care services against a projected 45. At the year end 226 children were in receipt of care services. The increasing complexities of care have necessitated the up-skilling of staff and an increase in medical support from the hospice doctor. Care services were available throughout the year with the hospice remaining open for emergencies. Out of a possible 3,660 nights, 3,532 nights were available for short break care, with 2,581 bed nights utilised. This was the highest number of bed nights recorded since the hospice opened. Sadly there were 20 deaths during the year. Working in partnership with acute hospital staff, twelve children and their families were actively supported at end of life in the hospital environment. An antenatal referral, (the third since the hospice opened) enabled a family to be supported by care services staff before, during and after the birth and subsequent death of their child. Tyˆ Hafan continues in its commitment to a care services workforce delivering the highest possible evidence based paediatric palliative care. The increase in numbers of referrals has brought with it an
increase in the complexity of physical palliation required and therefore a requirement to upskill care services staff particularly in neonatal care. During the latter quarter of 2011, Cardiff and the Vale University Health Board as the Lead Health Board, coordinated a welcomed external review of the Service Level Agreement (SLA). Chaired by Baroness Rennie Fritchie, it recognised the importance of Tyˆ Hafan’s independence and recommended building on the already strong relationships with the commissioning Local Health Boards to further develop the service.
Governance As one of Wales’ foremost charities operating in the sensitive area of paediatric palliative care, we believe that good governance is not an aspiration but a requirement. We are required to meet the standards of a highly regulated environment. For example, we are accountable to Healthcare Inspectorate Wales, the Gambling Commission and the Charity Commission, amongst others. We operate under a Scheme of Governance which regulates the proceedings and business of Tyˆ Hafan, providing a comprehensive business framework designed to assist Tyˆ Hafan in achieving its objectives with probity, complete openness and transparency. We have a comprehensive range of policies that fulfil the dual role of protecting the interests of the charity and protecting staff, volunteers and Trustees. Inherent in Tyˆ Hafan’s undertaking (that of providing care to life-limited children and raising the funds to enable it to do so) there are many, varied and significant risks. To comply
with the legal requirement for charity trustees to give consideration to the major risks to which the charity is exposed, Tyˆ Hafan has a comprehensive Risk Register with clearly delegated responsibilities for mitigating and managing risk. During 2011-12, Clinical Governance was further strengthened by reviewing the terms of reference of the Care Committee and refocusing and restructuring into two committees: • The Clinical Assurance Committee that ensures that the provision of care services is to the highest standards, with particular relation to quality assurance, operational clinical governance and reports to the Board. • The Strategic Service Development Committee which will consider and scrutinise strategic service development plans and strategies and recommend outcomes to the Board. The Trustees The commitment of our trustees is invaluable and their professionalism key to the delivery of our vision and mission. The trustees who served the company during the period were as follows: • Mr Mervyn Ham - appointed 4 October 2011 (chairman from 28 October 2011) • Robert Lewis - retired as Trustee and Chairman 28 October 2011 • Siân Jones • Dr Terry Morris • Dr Timothy Jenkins • Sheelagh Lloyd Jones • Iona Wyn - appointed 1 June 2011 • Jane Edge - appointed 1 June 2011 and resigned 26 September 2012 • David Farnsworth - appointed 1 June 2011 and resigned 26 September 2012
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“outstanding” services offered at tyˆ hafan In August 2011, Tyˆ Hafan engaged the services of Dame Elizabeth Fradd, a highly respected paediatric nurse, to carry out a review of the care services provided to the life-limited children and families supported by Tyˆ Hafan. This was an independent assessment requested by the Board of Tyˆ Hafan to inform strategic decision-making. Dame Elizabeth studied the range of palliative care services provided and critically analysed the quality, delivery, effectiveness and relevance of those services. She conducted over forty interviews with staff, families, children and other stakeholders, observed practice, assessed systems and reviewed policies, record keeping and business planning. Dame Elizabeth concluded that whilst there is room for improvement (for example, improved staff communications, regular feedback from families, changes to the reporting process and more status to be given to the current work with siblings), nonetheless, the services provided by Tyˆ Hafan are in some areas outstanding. This included the flexible and creative approach to family day care and the model of family support, with the latter being exemplified as a model of good practice for other children’s hospice services to follow. The report also recognised that after twelve years, change is necessary and indeed inevitable. Dame Elizabeth provided a number of suggested areas for future development and ways to expand the service range. Work has already started assessing those ideas and the work carried out by Dame Elizabeth has been helpful in the planning process and the continuous improvements being made to the palliative care services we provide.
There were six areas of commendation: 1. External clinical governance work with Cardiff and the Vale University Health Boards 2. Policy Version Control 3. Neonatal care 4. Advance Care Pathways for young people 5. The dependency matrix 6. Ensuring inclusion of families in the documentation review.
Tyˆ Hafan annual review 2012
bbc documentary ‘beautiful lives’ ‘Beautiful Lives’ – a four part documentary following the lives of families supported by Tyˆ Hafan – was screened on BBC Wales in September 2011.
The screening was the culmination of eight months of sensitive and skilled interviewing and filming of families, who shared their life stories with dignity and courage, often at the most difficult time in their lives. The documentaries reinforced two messages to professionals, the families and the public. The first was that expert palliative care and support provided by Tyˆ Hafan is delivered through a range of interventions that are specifically designed to meet the unique needs of each child and family. The second message was that Tyˆ Hafan has no physical boundary within which it delivers these interventions, be it hospice, home, hospital or school in partnership with the family and the professionals involved in the care of the child.
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tyˆ hafan in the community Tyˆ Hafan has come a long way since opening its doors in 1999. Our holistic approach to caring for life-limited children, young people and their families is now reaching into more families’ homes and communities right across Wales.
Tyˆ Hafan annual review 2012
Eleven-year-old Bailey Williams was almost three when he suffered his first seizure and was diagnosed with Lennox Gastaut Epilepsy. This form of epilepsy, usually diagnosed in children in their early years, causes them to have “drop” attacks, meaning that they collapse suddenly and are not able to put their hands out to lessen their fall. Bailey can have many and varied seizures a day, often between 20 – 100, and needs oxygen to help him recover. To avoid serious head injury Bailey, like many other children with this condition, wears a helmet. Unfortunately it doesn’t stop him bruising on other parts of his body because of frequent falls. Looking after Bailey and his six-year-old brother is exhausting for mum Rachael and dad Craig. Apart from him being typically hyperactive during the day, Bailey’s seizures can continue through the night so one of his parents has to sleep in the same room. Rachael benefitted greatly from massage and relaxation sessions provided by the Outreach Complementary Therapist. These sessions provided a much needed safe space to relax and share some of her worries. In between their stays at Tŷ Hafan, the family have benefitted from calls and visits from a Family Support Practitioner – part of a team of six who spend most of their time supporting families in the community, at home and in hospital. Their roles can vary widely from providing much needed emotional support to advocating on behalf of a family at health or social care meetings and working alongside other professionals to ensure families have the necessary support, equipment, housing etc. They also provide essential support to families when they need to make difficult decisions about the care of their child.
It was during the family’s stay at Tyˆ Hafan that Bailey’s love of music became evident and he was referred to Tyˆ Hafan's Outreach Music Therapy service. The sessions, delivered by experienced therapist Diane Wilkinson, enabled Bailey to express himself through the medium of music. Play is a very important part of a life-limited child’s life and parents often find it difficult to facilitate this because of their child’s extremely complex needs. Play isn’t just about having fun; it enables life-limited children to learn, develop cognitive and motor skills, express themselves and form the play bond between parent and child in a family environment. Tyˆ Hafan’s Outreach Play Practitioners travel many miles to visit children and families in their own homes, using specialist toys to facilitate skill development, learning and expression through play. Tyˆ Hafan’s philosophy is to care for the whole family; parents can become extremely stressed and tired by attending to the complex needs of a life-limited child and brothers and sisters often don’t get the attention they deserve. Tyˆ Hafan is there for the whole family.
• Through assessment, planning, implementation and evaluation, a professional package of specialist palliative care is designed to meet the needs of every family member. • We are able to deliver an excellent standard of care through qualified and trained staff, who specialise in family health, social care and palliative care. These include children’s nurses, social workers and play workers. • We are regulated by Healthcare Inspectorate Wales under regulations set by legislation.
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because you care, so can we We delivered a positive financial performance in a challenging economic climate thanks to our supporters’ continued generosity and the enormous commitment of our staff and volunteers. The combined fundraising departments (including commercial activities) made a contribution of £2.8 million towards Care Services compared with £2.7 million last year.
provided a contribution of £941,000. This was down 2% on the previous year and reflects the issues associated with operating within the confines of the south Wales market.
Our ambition to extend our reach to every lifelimited child and their family in Wales, sits alongside the need to invest in sustainable income streams to further our vital work.
We continue to promote a number of flagship events, such as the Welsh 3 Peaks and the Taff Trail Cycle challenge. The popular Chefs’ Night Out event was a huge success, helping to generate more than £100,000 for the charity.
As with many other charities, we have seen a decline in some aspects of fundraising, such as income from business and community sources, whilst other areas have performed well, particularly our retail activities and legacies. Although the retail environment continued to be challenging, it didn’t hinder our success as the contribution made by our shops increased by 50%. We have opened three new outlets in Penarth, Whitchurch and Merthyr Tydfil, as well as a “pop up” store in the Rhiw Shopping Centre in Bridgend, bringing our total number of shops to 21. Our shops have a deserved reputation for providing high-quality items along with an enjoyable shopping experience. Each shop is run by a professional manager, deputy manager and a group of volunteers. Income from legacies has significantly helped to boost our voluntary funds and we are grateful to everyone who has mentioned Tyˆ Hafan in their Wills. Our legacy income has increased by 29% and our future focus will be on raising public awareness of this income stream through campaigns such as ‘Write a Will Week.’ We run the UK’s largest hospice lottery; last year membership was increased by 8% and
The synergies evident in the business and community prompted a reorganisation to bring these two areas together. At the same time, a new initiative was launched to grow income from individual donors. It is anticipated that these new strategies will provide sustainable growth in the future. We have always been fortunate in benefitting from the overwhelming dedication of our many volunteers who contribute towards the continued growth of Tyˆ Hafan. There were 528 people registered as volunteers last year and we value not only the money they raise but also their willingness to act as Tyˆ Hafan ambassadors in the community. Our firm intention remains to continue to provide care for an increasing number of children in need of specialist palliative care. The need to identify new and sustainable sources of income to support this goal is at the forefront of our research and development. We are not dependent on government money and we remain positive about the future, having done much in recent years organisationally and financially to ensure we are in good shape both for the short and long term.
chefs’ night out David Loosemore has a unique reason for wanting to help Tyˆ Hafan. His daughter Isabella was diagnosed with a rare, life-limiting brain disorder at eight months old. He and his wife, Ruth, were told Isabella would not live past the age of three. Now aged six, Isabella has benefited greatly from the help of Tyˆ Hafan. Having experienced the charity’s positive impact, David felt inspired to help. Chefs’ Night Out was an idea he and a friend devised and last year’s event was hailed a huge success. The event sees a range of top chefs cooking gourmet four-course meals for 150 guests.
“Tyˆ Hafan provides care and support for the children and their families absolutely free of charge,” says David. “And I just wanted to do something to help other families and their life-limited children. This event has been set up for one reason only – to raise money for this fantastic cause.”
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Tyˆ Hafan annual review 2012
two major capital projects started In early 2012 it was agreed to proceed with two major capital projects for implementation in 2012-13. Following the purchase of the freehold land at the hospice, the Board agreed to the construction of a care services wing on site to provide much needed training facilities for our care staff and result in all Tyˆ Hafan head office staff being located at the hospice from January 2013. This will help build a cultural unity among all staff. We are also pleased that in so doing we are removing the significant long term overhead associated with rented premises, thereby utilising our charitable income more efficiently. The second project was the construction of a state-of-the-art hydrotherapy pool to provide a valuable sensory experience for children and their families. First Minister Carwyn Jones visited Tyˆ Hafan to cut the turf for the new pool and commented: "The services provided here at Tyˆ Hafan are invaluable not only to the children, but the whole family, providing help and support at what can be a very difficult time. I’m sure that the addition of another hydrotherapy pool will be of huge benefit to the children and young people who visit Tyˆ Hafan." The pool will provide sensations involving sound, light, music, bubbles, cascades and many other touch and feel experiences. The palliative benefits of such a pool for the children and their parents will be significant.
our costs Financial Activities in the 12 months to 31 March 2012 During 2011-12, the cost of providing comfort, care and support to the children and families was ÂŁ3.5 million, a rise of 8% on the previous year. During 2011-12, we received 10% funding from the Local Health Boards but did not receive any funding directly from the Welsh Government. Incoming resources only rose 3% mainly due to a fall in voluntary income (-8%) and a more dramatic fall in statutory income (-24%).
Incoming Resources Voluntary Income 33% Commercial Activities 58% Investment Income 5% Statutory Income 4%
Resources Expended Costs Generating Voluntary Income 13% Cost of Commercial Activities 38% Investment Management Costs 1% Governance Costs 1% Providing Care 47%
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our plans for the future We have had some great achievements since opening our doors in 1999, but we need to work even harder to accomplish our vision to realise “A Wales where children expected to die in childhood live a full family life.” Our key aims will be to: 1. Identify and make contact with every child in Wales who is expected to die in childhood and offer them and their family the opportunity to receive palliative care and support which meets assessed needs and is delivered in the most appropriate manner; 2. Review continually the range, impact and effectiveness of the care services offered to children and their families and proactively respond to changes in order to ensure that they receive the highest standard of care and support; 3. Ensure that all members of the child’s family are supported in the most appropriate way possible in order that they are able to give their child(ren) a supportive environment particularly as the child reaches adulthood; 4. Build the Tyˆ Hafan brand and position it as the premier Welsh charity of choice, leader in paediatric palliative care and employer of choice; 5. Achieve best practice, transparency and openness in care, fundraising and governance;
6. Review continually and monitor the effectiveness of operation of the Board of Directors, its governance, adherence to legislation and ability to provide strategic direction;
7. Provide sustainable funding to support care services through maximising income from a mix of fundraising activities and developing existing and new commercial activities; 8. Demonstrate independence of thought, action and voice.
Tyˆ Hafan annual review 2012
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thank you We could not provide specialist care to life-limited children, young people and their families without the unstinting support of the people of Wales. We are helping more families than ever before thanks to the commitment and talent of our volunteers, Tš Hafan professionals, staff members and our thousands of supporters. Not forgetting the generous support of Welsh businesses, partners in the community, medical professionals and our board of Trustees. Thank you for making a difference and being part of Tš Hafan’s team.
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the family hospice for young lives
T天 Hafan Hayes Road Sully Vale of Glamorgan CF64 5XX 029 2053 2199 www.tyhafan.org Follow us on Thanks to photography student Christoph Soeder for supplying photographs for the Annual Review
Registered Charity No: 1047912