Supporting childrens palliative care across Dorset from diagnosis to - PowerPoint PPT Presentation

Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond Gully’s Place Trust Fund is supported by Poole Hospital Charity – registered number 1058808

Foreword Gully’s Place Trust Fund – a short history T I hroughout Dorset there are around 400 infants, n 2009, the team working on the children’s unit at Poole Place was not just a physical suite, but an ethos, that could children and young people with a life-limiting or Hospital were approached by local dance teacher Diane be provided to families in need wherever and whenever they life-threatening illness. Gulliford (Gully), who wanted to make a significant needed it? charitable donation to hospital services. Gully asked the These children can have a short life expectancy and may team to identify how the money would be best spent. Could the team provide the same level of support in the not survive to adulthood. They may need palliative care for community as they did in the hospital? It fitted with what weeks, months or years before they approach the end of The team had long known that children with life-threatening parents were asking for, and was in line with the national their life. and life-limiting illnesses and their families really needed a guidance ‘Together for Short Lives’ and ‘Better Care, Better private, comfortable and calm environment, away from the Lives’, which states that families should be able to choose Gully’s Place Trust Fund has been developed to support main children’s unit, with access to professional support as where their child receives palliative care and where they should these children and their families, from diagnosis to death needed. die – at home, in hospital or in a hospice. and beyond. This support is offered by a team of experts, wherever and whenever it is needed. After much work with staff, partner organisations, parents In 2011, the NHS team across Dorset made a successful bid and families, Gully’s Place Suite at Poole Hospital was to the Department of Health for a grant to improve children’s The fund is registered under Poole Hospital Charity and opened in 2010. The suite is primarily used for families palliative care and provide a two-day learning event for the committee members, who range from professionals requiring palliative or end-of-life care, but it is also used professionals – Piecing it Together Family Feedback. in paediatric health, parents and community for transitional care, in case of sudden death supporters, have the necessary skills and and for children with severe autism. This work identified the need for two additional core areas of experience to help the fund achieve its work – providing care beyond the death of a child in the form goals. For those in need, Gully’s Place of a parents’ support group, and ongoing training and education became a much relied on support for staff dealing with bereaved families, and for families Gully’s Place Trust Fund is made system. The Collins family were themselves. up of three separate areas the first to use the suite. They of work – a physical Gully’s said: “It gave us the confidence The three strands of the trust became clear – Gully’s Place Place Suite located on the to care for our son while Suite, the parents’ support groups and ongoing education and children’s unit at Poole knowing there was help at the training for staff. Hospital, parents’ support touch of a button. groups and education and Throughout Dorset there are learning materials, for staff “It also gave our ‘home carers’ around 400 infants, children and and families. time to get to know him with the added back up, if they young people with a life-limiting or The concept of the Gully’s needed it. It provides the perfect life-threatening illness. Place Trust Fund is unique transition from hospital to home.” within acute trusts, and as far as we are aware, it is the first of its After the suite had been open a kind nationally. while, an idea was born – what if Gully’s Page 2 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Gully’s Place Trust Fund – our vision, our mission Gully’s Place Trust Fund committee O ur mission is simple – to provide care and support from How will funds raised be used? diagnosis to death, in hospital, at home and beyond. T To maintain the management of Gully’s Place Suite he committee was established in 2012 when the Our vision for the future sees us working to develop children in Poole team recognised that there was much more that and young people’s palliative care services across Dorset, to could be done to improve palliative care across Dorset provide choices for families receiving end-of-life care and To support the development of a Gully’s Place Suite under the Gully’s Place umbrella, such as providing supporting them beyond treatment. within children’s services in Dorset County Hospital more equipment, more support for families and more NHS Foundation Trust, Dorchester training for staff. To provide specialist equipment needed to support The committee, which incorporates health families and deliver palliative and end-of-life care in professionals, community supporters and service users Gully’s Place Suite Poole, and within the setting of from across Dorset, aims to ensure that donations families’ choice are spent appropriately and as intended and that the generosity of benefactors is appropriately recognised To provide educational materials to support families, and publicised. Gully’s Place Trust such as funeral options, registering the death and Fund committee teaching and support for complex procedures parents may have to carry out to care for their child To provide training to enhance learning and skills in delivering care for palliative children/young people and their families To continue to support the parents’ support group Page 3 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Children’s palliative care – an introduction O At this time, families want care ne of the most difficult things a parent faces being As they become bigger, heavier, stronger or more challenging, told is that their child is likely to die before they will. parents and carers themselves become less physically able to delivered by skilled professionals, manage. Families that face such huge responsibilities need to from diagnosis to death and beyond. Palliative care for children starts at diagnosis, and is about making be recognised and supported. experiences for children and young people who are diagnosed They want a skilled team that walks with life-limiting and life-threatening conditions better. At this time, families want care delivered by skilled the journey with them. professionals, from diagnosis to death and beyond. They want The range of illnesses, many of which rare, and symptoms, a skilled team that walks the journey with them. many of which are common, makes it hard to define and predict care needs. Gully’s Place Trust Fund aims to offer that support for children and their families across Dorset, in hospital and at home. These conditions can broadly be defined into four categories, It aims to compliment care already offered by children’s ranging from life-threatening conditions which may be cured hospices, empowering families to make informed decisions, to terminal illness, or non-progressive conditions which cause and giving them choices. severe disability. For many parents, looking after a child with a complex or rare health condition is a life-long responsibility. Their children will often not grow up and leave home as other children do, and their child’s requirement for complex care and support will not reduce over time as the child grows older - for many it increases. Page 4 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond