Factsheet on Children s Palliative Care at Jersey Hospice Care

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1 Factsheet on Children s Palliative Care at Jersey Hospice Care 'The crux of our mission statement is as pertinent today as it ever was; to enable our patients to live the remainder of their lives to the full, to remain at home if they wish and to die with dignity where they choose' Jurat Jean King MBE, ( ) founder member of Jersey Hospice Care

2 Key definitions Children s palliative care Children s palliative care is an active and total approach to care, from the point of diagnosis or recognition, throughout the child s like, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family. It includes the management of symptoms, provision of short breaks and care through death and bereavement. Children s hospices Children s hospices provide palliative care for children and young people with life shortening conditions and their families. They are delivered by a multi-disciplinary team and in partnership with other agencies and take a holistic approach to care, aiming to meet the needs of both child and family physical, emotional, social and spiritual through a range of services. Life shortening and life threatening conditions Life shortening conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the children increasingly dependent on parents and carers. Life threatening conditions are those for which curative treatment may be possible but can fail, such as children with cancer. Children in long-term remission or following successful curative treatment are not included. Hospice at home Hospice at home is a term commonly used to describe a service that brings children s palliative care into the home environment. Hospice at home works in partnership with parents, families and other carers. End of life The end of life phase begins when a judgement is made that death is imminent. It may be the judgement of the health or social care team responsible for the care of the patient, but it is often the child, young person or their family who first recognise its beginning. End of life care End of life care helps all those with an advanced progressive, incurable illness to live as well as possible until they die. It focuses on preparing for an anticipated death and managing the end stage of a terminal medical condition this includes care during and around the time of death and immediately afterwards. It enables the supportive and palliative care needs of both the child, young person and their family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support and support for the family into bereavement.

3 About Jersey Hospice Care Jersey Hospice Care currently supports approximately 450 adults with terminal and life shortening conditions each year. We provide a holistic approach to care, incorporating physical, emotional, social and spiritual aspects. We also have an important role in supporting people s families, especially in providing emotional and bereavement support. More than 370 people receive bereavement support from us each year. We support people with a wide range of conditions including (but not limited to) cancer, motor neurone disease, cardio-vascular diseases, dementia, multiple sclerosis and Parkinson's disease. Currently 45% of our patients do not have cancer. The majority of hospice care (80 per cent) is provided in community-based settings, including home, care or residential homes, hospital and Day Hospice. More than 450 people give their time to volunteer for Jersey Hospice Care each year, with many others helping to raise the 5.3 million it costs each year for our adult services. What is Children s Palliative Care? Children s palliative care is an active and total approach to care, from the point of diagnosis or recognition, throughout the child s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. What is the difference between children s and adult s palliative care? Children experience a variety of rare conditions specific to childhood. It is acknowledged that the child may survive to early adulthood. Children are also growing and developing as they go through illness. Therefore, all specialised medical care, including palliative care, must be tailored to meet the changing needs of infants, children and young people. Palliative care can be helpful to all patients with a serious illness and at any stage of their disease. The timeframe differs for children, as it may vary from a few days to a number of years. It also embraces the whole family who may be vulnerable at this time. Provision of education and play when a child is seriously ill is essential. This introduces an additional dimension, which adds to the complexity of care provision.

4 The story so far In 2016, in consultation with our Board of Trustees, we made the decision to extend our services to offer specialist palliative care services to children, young people and their families. The expansion to our services will mean that we will be able to care for anyone in Jersey with a life shortening condition, irrespective of diagnosis or age. We started our journey this year within our Emotional Support team, appointing a Trainee Counsellor with extensive experience working with children and young people. The new service will provide a range of emotional support to children, young people and their families, from diagnosis, through treatment and beyond. We have also appointed a Paediatric Doctor with a specialist interest in paediatric palliative care. Dr Natalie Kemp is developing our strategy for Children s Palliative Care, working closing with the Wessex Deanery, under the leadership of Dr Michelle Koh, Specialist Paediatric Palliative Care Consultant. Dr Kemp is undertaking further studies in Paediatric Palliative Medicine, providing Jersey with its first specialist in this area. Next steps We want to start making a difference to children, young people and their families as early as possible. Children and young people don t always need to be in a hospice to receive palliative care. They can receive palliative care wherever they receive care; in the hospital, during clinic visits, or at home and at any time during a serious illness. With this in mind, early in 2018, we will introduce a 24 hour out-reach service and day hospice provision for children, young adults and their families. We will also be appointing a Project Delivery team, who will be responsible for the design and construction of a specialist purpose-built facility for children and young people, with family accommodation, at Jersey Hospice Care. We will launch our fundraising campaign once further elements of the build facility are agreed. We are committed to improving the experience of every child and young person with a life shortening or life threatening condition and that of their families. Throughout our journey, we will continue to work closely with other agencies and healthcare providers in this field.

5 Our aim for Children s Palliative Care Services in Jersey

6 The numbers There are currently 44 children in Jersey living with a life threatening or life shortening condition Five new paediatric cancer diagnoses per year Between 2012 and 2016 : 24 children aged between 0 and 16 died in Jersey 19 young people aged between 16 and 24 died in Jersey Our philosophy Promoting the best possible quality of life and care, for every infant, child or young person, with a life shortening or life threatening condition and their family. Giving families real choice is key to this approach, with a choice of o place of care o place of death o emotional and bereavement support. Putting the child, young person and family at the centre of decision making will enable them to have the best quality of life and death possible. (Adapted from Together for Short Lives)

7 Myth-busters about children s hospice care Hospices are just places where people go to die. Children s hospices offer a vast range of support, from the moment of diagnosis. Whilst end of life care is an important part of the service, children s hospices provide support including short breaks, 1-1 counselling, music and play therapy, sibling support groups and craft activity sessions Support from children s palliative care services does not extend to the whole family Children s hospices support the entire family, often over many years and at any stage of a child or young person s illness. They offer the opportunity for healthy brothers and sisters to take part in activities including craft activity sessions and sibling support groups Children can only receive palliative care in a hospice or hospital Children s hospices support families in their local hospice buildings, but most also provide support in people s homes and in their community Children s hospices are sad and depressing places to visit People often have a picture of children s hospices as dark and depressing places. Yet if you walked into any children s hospice you would be left in no doubt that they are bright, colourful and vibrant, focused on life however short that may be They are a real home from home. Children, young people and families will tell you how much they love their hospice and the staff that work there

8 Contact details Our address: Jersey Hospice Care Mont Cochon St Helier JE2 3JB Telephone Number (01534) administration@jerseyhospicecare.com Website : jerseyhospicecare.com Chief Executive Emelita Robbins (01534) emelitarobbins@jerseyhospicecare.com Director of Palliative Care Services and Deputy Chief Executive Gail Caddell (01534) gailcaddell@jerseyhospicecare.com Paediatric Doctor (specialist interest in paediatric palliative care) Dr Natalie Kemp (01534) nataliekemp@jerseyhospicecare.com Media contact Linzi Duckworth, Marketing and Communications (01534) linziduckworth@jerseyhospicecare.com