Together for Short Lives

Last updated
Together for Short Lives
Formation2011;12 years ago (2011)
Merger ofACT,
Children's Hospices UK
Type Nonprofit
Registration no.1144022 (England & Wales),
SC044139 (Scotland)
Legal statusCharity
FocusTo secure the best quality of life and best end of life care for children who will have short lives
HeadquartersSuite 1b, Whitefriars, Lewins Mead, Bristol, BS1 2NT
Location
  • United Kingdom
Chief Executive
Andy Fletcher
Website www.togetherforshortlives.org.uk

Together for Short Lives is the UK registered charity for children's palliative care. Together for Short Lives’ vision is for children and young people in the UK with life-limiting and life-threatening conditions and their families to have as fulfilling lives as possible, and the best care at the end of life.

Contents

Together for Short Lives is a registered charity in England and Wales (1144022) and Scotland (SC044139) and is a company limited by guarantee (7783702).

Together for Short Lives' president is Professor Sir Alan Craft, and Vice President is Dr Ann Goldman. Its patrons include: Simon Cowell, Dame Elizabeth Fradd DBE, FRCN, Rosa Monckton, Mason Mount, John Overton and Holly Willoughby. Rebecca Front is an ambassador for the charity, along with Alex Corbisiero and Lucy Watts MBE.

History

Together for Short Lives was launched as a new UK charity [1] on 1 November 2011.

Together for Short Lives was developed as the new name for ACT & Children's Hospices UK, which merged in October 2011. Prior to merger ACT and Children's Hospices UK were two UK registered charities working within children's palliative care and offering membership services to children's hospice services, children's palliative care professionals and families.

ACT and Children's Hospices UK merged [2] on 1 October 2011 to become one voice for children's palliative care in the UK. [3]

ACT (Association for Children with life-threatening and Terminal conditions) was established in 1988 under the direction of Professor David Baum, at the Institute of Child Health, Bristol and Sister Frances Dominica founder of Helen House hospice for children in Oxford.

ACT was established to develop an information service for families and professionals supporting them; to develop a national network for children's palliative care and to co-ordinate statutory and voluntary services concerned with delivering palliative care to children and families.

Children's Hospices UK (previously known as ACH) was established in 1998 as a national umbrella charity working with independent children's hospices across the UK. It was established to provide a national voice for children's hospices by raising awareness, improving statutory funding of hospices, and to foster collaboration between children's hospice services and to help develop professional practice.

Both ACT and Children's Hospices UK were based in Bristol, UK and had a history of working collaboratively on awareness raising and lobbying, prior to merger in 2011.

Membership and Services

Together for Short Lives is an umbrella charity for services and professionals working across children's palliative care. It offers membership to organisations, including the children's hospice and palliative care services and professionals who provide care and support to babies, children and young people with life-limiting and life-threatening conditions and their families.

It offers membership and support to families and runs a UK helpline called the Together for Families Helpline.

In December 2014 Together for Short Lives launched an animation called We’re Having a Baby to communicate the needs of families when they hear the news of their child's diagnosis and also to reassure families that there are specialist children's palliative care services to support them. [4]

The charity provides information and support to families and professionals working across children's palliative care. Together for Short Lives has developed a care pathway approach to delivering care and support to children and families and has published a series of resources to support this including a Core Care Pathway for Children with Life-limiting and Life-threatening Conditions and a Family Companion.

Together for Short Lives’ activity is informed by the needs of children and young people with palliative care need and their families, and by the experience of children's hospice and palliative care services. The charity has an established Parent Carer Advisory Group.

In 2012 Together for Short Lives published a report called Square Table – Local learning and evaluation report which captured the findings of a national listening tour of 42 'square table' events held across England, Scotland and Northern Ireland throughout 2011. More than 1,500 people took part in these events – including families of children with life-limiting and life-threatening conditions, young people who have grown up using children's palliative care services, health, social care and education professionals and other representatives from across the community.

They were designed to provide insight into the lives of children and their families as well as an opportunity to understand the perspective of a wide range of professionals who support them.

Lobbying and awareness raising

The charity lobbies and raises funds for children's hospice services and voluntary sector organisations through a national fundraising scheme and corporate partnerships. Together for Short Lives raises awareness of children's palliative care and the needs of children with life-limiting and life-threatening conditions. The charity lobbies governments and influences policy for children's palliative care in all four UK nations.

The charity runs an annual fundraising and awareness raising week called Children’s Hospice Week. Since 2011, Together for Short Lives has benefited from the proceeds of sales of The X Factor charity and winner's singles. [5]

Together for Short Lives had been one of the ITV Text Santa charities for two years since the show's inception, benefitting in 2012 and 2014, raising money for UK children's hospices. [6] Together for Short Lives also works internationally through its close collaboration with the International Children’s Palliative Care Network (ICPCN) by sharing resources and information to help the children's palliative care sector across the globe.

On 3 June 2015 Patron Simon Cowell hosted the first Together for Short Lives Midsummer Ball at Banqueting House in support of seriously ill children and their families. [7] Marvin and Rochelle Humes hosted the night's entertainment, introducing performances from Ronnie Scott's Jazz Orchestra, Katie Melua, Stephen Mulhern, Britain's Got Talent 2014 finalists Jack Pack and Britain's Got Talent 2015 finalist Isaac Waddington. The night culminated with a DJ set from Grammy award-winning music producer William Orbit.

From February 2022, Together for Short Lives is the official charity partner of UK supermarket Morrisons, a partnership which will run for three years. [8]

Children’s Hospice Week

Run by Together for Short Lives, Children’s Hospice Week is the UK's only awareness raising and fundraising week for children with life-threatening and life-limiting conditions and the services, like children's hospices, that support them.

Children's Hospice Week 2014 saw Together for Short Lives patrons Simon Cowell [9] and Holly Willoughby launch #WeCare247 – a campaign to highlight the round the clock care that seriously ill children require and the services, like children's hospices, that are there to support them.

Children's Hospice Week 2015 focused on ‘Making every moment count’ to raise awareness of how precious time is for families caring for a seriously ill child and how services support families to make the most of their time together. The Duchess of Cambridge offered a message of support [10] for Children's Hospice Week 2015 and the campaign was backed by a host of celebrities including Louis Walsh, Alex Corbisiero, Ben Haenow, Rebecca Front, Kate Silverton, Dave Berry and Ben Hanlin, as well as patrons Holly Willoughby and Simon Cowell.

Research

In 2011, Together for Short Lives commissioned research on the number of children and young people with life-limiting and life-threatening conditions in the UK who may require palliative care. The research [11] shows that there are 49,000 children and young people with life-limiting and life-threatening conditions in the UK.

In 2010, the Transition Partnership (a collaboration between Together for Short Lives, Hospice UK and the National Council for Palliative Care) working with researchers at the University of York was funded by the Big Lottery Research Programme to conduct the STEPP Project (supporting health transitions for young people with life-limiting conditions: researching evidence positive practice). The research was published in 2013.

In 2013, Together for Short Lives published the BIG Study, a two-year research project undertaken with five university partners, funded by the Big Lottery Fund Research Programme. The Study explored how well the needs of life-limited children were being met in the West Midlands.

Related Research Articles

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.

<span class="mw-page-title-main">Marie Curie (charity)</span> United Kingdom charitable organisation

Marie Curie is a registered charitable organisation in the United Kingdom which provides hospice care and support for anyone with an illness they’re likely to die from, and those close to them, and campaigns for better support for dying people. It was established in 1948, the same year as the National Health Service (NHS).

<span class="mw-page-title-main">Sue Ryder (charity)</span> British palliative neurological and bereavement support charity

Sue Ryder is a British palliative, neurological and bereavement support charity based in the United Kingdom. Formed as The Sue Ryder Foundation in 1953 by World War II Special Operations Executive volunteer Sue Ryder, the organisation provides care and support for people living with terminal illnesses and neurological conditions, as well as individuals who are coping with a bereavement. The charity was renamed Sue Ryder Care in 1996, before adopting its current name in 2011.

<span class="mw-page-title-main">Martin House Hospice</span>

<span class="mw-page-title-main">Children's hospice</span>

A children's hospice is a hospice specifically designed to help children and young people who are not expected to reach adulthood with the emotional and physical challenges they face, and also to provide respite care for their families.

Sobell House Hospice is an Oxford-based hospice serving the residents of Oxfordshire, England affected by life-limiting illness.

<span class="mw-page-title-main">Shooting Star Children's Hospices</span>

Shooting Star Children's Hospices is an English children's hospice charity. The charity cares for babies, children and young people with life-limiting conditions, and their families, across Surrey and West London. They provide specialist clinical and holistic care to families from diagnosis to end of life and throughout bereavement.

<span class="mw-page-title-main">Demelza Hospice Care for Children</span> Hospital in Kent, England

Demelza Hospice Care for Children, more commonly referred to as simply 'Demelza' is a Children's hospice and a registered charity based in Kent, England, delivering clinical care and emotional support to babies, children and young people facing serious or life-limiting conditions, throughout Kent, South-East London and East Sussex. The charity is named after Demelza Phillips, who inspired the creation of the first hospice in Sittingbourne in 1998 Demelza continues to be dedicated to reaching more children and families who need support across the South East of England.

<span class="mw-page-title-main">Acorns Children's Hospice</span>

Acorns Children's Hospice Trust is a registered charity, offering a network of palliative care and support to life-limited and life-threatened children and their families across the West Midlands region and part of South West England. Acorns has three hospices, situated in Birmingham, Walsall and Worcester as well as a community team that offer support to families in their homes. The catchment area for the Hospices comprises the counties of Warwickshire, Worcestershire, Herefordshire, Gloucestershire as well as parts of Staffordshire, Shropshire, and the West Midlands.

<span class="mw-page-title-main">Julia's House</span>

Julia's House is a children's hospice located in Corfe Mullen, Dorset, England and Devizes, Wiltshire. It is a hospice for children with life-limiting, life-threatening or terminal conditions. The majority of the children who are cared for by Julia's House are unlikely to live beyond the age of 18. The hospice costs £1.9 million to be maintained. Only 3% of this cost is provided by the government.

<span class="mw-page-title-main">Hospice care in the United States</span>

In the United States, hospice care is a type and philosophy of end-of-life care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature. The concept of hospice as a place to treat the incurably ill has been evolving since the 11th century. Hospice care was introduced to the United States in the 1970s in response to the work of Cicely Saunders in the United Kingdom. This part of health care has expanded as people face a variety of issues with terminal illness. In the United States, it is distinguished by extensive use of volunteers and a greater emphasis on the patient's psychological needs in coming to terms with dying.

Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals.

Rainbows the East Midlands Children’s Hospice is a registered charity in England, Number 1014051. The charity provides palliative care and support for children, young people, and their families, when faced with life-limiting conditions.

<span class="mw-page-title-main">Helen & Douglas House</span> Hospice in Oxford, England

Helen & Douglas House is a registered hospice charity based in Oxford, England, providing palliative, respite, end-of-life and bereavement care to life-limited children and their families.

<span class="mw-page-title-main">Children's Hospices Across Scotland</span> Scottish charity

Children’s Hospices Across Scotland (CHAS) is a registered charity that provides the country's only hospice services for children and young people with life-shortening conditions, and services across children’s homes and hospitals. The first hospice was built thanks to the late editor-in chief of the Daily Record and Sunday Mail, Endell Laird, who launched a reader appeal which raised £4million. CHAS offers children’s hospice services, free of charge, to every child, young person and their families who needs and wants them.

<span class="mw-page-title-main">Naomi House Children's Hospice</span> Hospital in Hampshire, England

<span class="mw-page-title-main">Tŷ Hafan</span> Welsh palliative care charity

Tŷ Hafan is a Welsh registered charity that provides holistic palliative care for children with life-limiting conditions and their families from throughout Wales. A wide range of care and support is offered at the hospice, based in the Vale of Glamorgan in south Wales, in the community, at hospital or in schools.

<span class="mw-page-title-main">Gina Long</span> Philanthropist, entrepreneur, journalist, radio presenter and global charity campaigner

Gina Long is a philanthropist, entrepreneur, journalist, radio presenter and global charity campaigner. She was awarded an MBE for services to the charity sector in December 2015. She was made a Honorary Fellow of the University of Suffolk in October 2018.

Havens Hospices is a charity (No:1022119) which runs hospice services in Essex. It is intended to support and provide palliative care to babies, children, young adults and adults. Havens Hospices offers community based support to families in Essex and runs two hospice services: Fair Havens Hospice and Little Havens Hospice.

References

  1. Together For Short Lives: TFSL new voice for children's palliative care
  2. Together For Short Lives: 2294 Act children's hospices UK merge to become the single voice
  3. "Together for Short Lives" . Retrieved 2015-09-04.
  4. "Real stories add impact to Hurricane Media's animation for children's charity, Together for Short Lives" . Retrieved 2015-09-04.
  5. "The X Factor Celebrity finalists release charity single". The X Factor, ITV. Archived from the original on 2019-12-16. Retrieved 2019-12-16.
  6. "Stars to join forces for return of ITV's charity fundraiser Text Santa". Together for Short Lives.
  7. "Lauren Silverman steals the spotlight at Simon Cowell's star-studded charity ball". Hello. Retrieved 2015-09-04.
  8. "Our new Charity Partnership". MyMorri. Retrieved 2021-11-15.
  9. "Simon Cowell supports Children's Hospice Week". Digital Spy . Retrieved 2015-09-04.
  10. "Kate Middleton writes emotional letter urging people to support Children's Hospice Week". Daily Mirror . Retrieved 2015-09-04.
  11. Fraser L K, Parslow R C, McKinney P A, Miller M, Aldridge J M, Hain R, Norman P, (2012), Life Limiting and Life-threatening conditions in children and young people in the United Kingdom; Final Report for Together for Short Lives (Leeds). Paediatrics, Volume 129, Number 4, April 2012 http://pediatrics.aappublications.org/content/129/4/e923