Life-limiting conditions for children and young people
Sadly, some children and young people have life-limiting conditions, and their families have to come to terms with the emotional and physical challenges that this brings.
Gaining the right support is vital to enable families to make the most of every moment they have together. This article covers the services and organisations who are able to provide you with information and support.
Page contents
- What does ‘life-limiting condition’ mean?
- Specialist support services
- Additional support
- Further information
What does ‘life-limiting condition’ mean?
A life-limiting condition is a term used to describe an incurable condition that will shorten a person’s life, though they may continue to live active lives for many years. Sometimes it is described as a life-limiting illness or terminal illness. This term terminal illness is usually used to describe a life limiting condition that is thought to have progressed to the final or terminal stage. If you are unsure, it is important to ask, what someone means when using these terms about your child.
Specialist Support Services
Lifetime Service-Sirona Care and Health are a team of community children’s nurses and psychologists which provide a service across Bristol, North Somerset and South Gloucestershire areas. They offer a service within the community for children with life threatening, life limiting conditions that are non-malignant and provide support for families.
Available services are:
- Nursing: Core Service
- Nursing: Children’s Continuing Care Team (CCT)
- Psychology - The clinical psychology team work alongside the nursing team to support the emotional and psychological wellbeing of the whole family, helping them to come to terms with diagnosis and the future.
A referral in to the Lifetime service can be made by anyone by either:
Telephone: 0300 124 5916
Post: The Lifetime Service, Corum One, Corum Office Park, Crown Way, Warmley, Bristol BS30 8FJ or by completing a referral form which is available on their website.
You can also email the service directly SIRCH.Lifetime@nhs.net
Children’s Hospice South West provide hospice care for children and young people who are expected to die in childhood. There are three hospice bases - situated in Bristol/North Somerset (Wraxall), Devon (Barnstaple), Cornwall (St Austell) .The hospices provide respite breaks with the goal of getting to know families who may need more intense support as their child becomes less well. They also provide emergency stays including for symptom control and end of life care. They are all able to provide help and support for families who face the emotional and physical strain of caring for a child who has a life-limiting condition, including support from their sibling team.
Charlton Farm Hospice in Wraxall is the hospice situated closest to South Gloucestershire. It is located in a secluded and beautiful setting, and it enables families to take some time out and enjoy time together as a family. It has eight child-friendly rooms and accommodation for parents and siblings. It has sensory room, a messy play room, a small heated pool and lovely grounds.
By visiting their website you can read examples of families stories.
Referrals can be made by email/phone or letter – by professionals or family members.
Contact details – 01275 866611
Jessie May Trust is a children’s hospice at home service caring for local terminally ill children in Bristol, North Somerset, South Gloucestershire,(as well as Bath & North East Somerset, Swindon & Wiltshire) . Jessie May Nurses provide vital respite care, emotional support, end of life care, and bereavement support alongside family events that help create treasured memories. Jessie May work alongside other professionals involved in supporting each family to ensure continuity of care. If your child has been diagnosed with a terminal or life-limiting condition, then you or a professional working with your family can make a referral to the service.
The Community Children’s Nursing Team (Bristol Royal Hospital for Children, UHBW) are a team of experienced Paediatric Nurses with specialist skills and experience in nursing children and young people at home and other community settings. The team aims to prevent admission to hospital, promote early discharge and prevent readmission. You can contact them by Telephone 01173427299 / 27299 – 24-hour answerphone, which is monitored frequently during the day.
You can also contact by email - Communitychildrensnurses@uhbristol.nhs.uk
The Paediatric Palliative Care and Bereavement Support Team is based at Bristol Royal Hospital for Children (BRHC). The team primarily provides inpatient palliative care support but will also work with community services including GP's, Community Paediatricians, Children's Community Nurses and Community Palliative Care Teams, as well as other local hospitals and hospices. When a life-threatening medical condition is diagnosed in an unborn baby the team works with teams at St Michael’s Hospital to deliver perinatal palliative care. In addition, the team helps to coordinate support offered to families in bereavement if their child dies in BRHC.
You can contact them by Telephone: 0117 3427293 (Mon-Fri 9am – 5pm)
You can also contact by email: childrenspalliativecare@uhbw.nhs.uk
Additional Support
There are other charities that are available locally or nationally that provide information to help you as a parent and carer.
Together for Short Lives is the UK charity that seeks to ensure that children and their families can make the most of every moment they have together. The charity has over 1000 members, including children hospices, voluntary and statutory sector organisations and professionals who care for seriously ill children and families.
A helpline is available for families facing the toughest of times offering confidential emotional support and information on a range of issues. Together for short lives also connect families with support services and other families who understand what they are going through, so they do not feel as alone.
Rainbow Trust support families who have a child with a life threatening or terminal illness and are in the greatest need. Family Support Workers provide a life line to these families and children. They support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. Families can receive support from the moment of their child or young person’s diagnosis, (including antenatal and neonatal periods when diagnosis has been made). Anyone can refer a family to Rainbow Trust provided consent from the family has been given for the referral to be made. The Trust can be contacted for support at any stage of illness from diagnosis, during treatment and into bereavement.
Sense provide services for people with complex disabilities and their mission is to remove barriers to communication so that everyone has the opportunity to live their life to the full.
Sense offer personalised support through their centres, holidays and short breaks, or within people’s own homes. Sense provides early intervention for children, help for young people to access education, and support to help transition into adulthood.
Sense has a specialist service for children and families, regional branches and a national family network. Sense may be able to advise you on the possibility of accessing a local parent and toddlers’ group or similar.
South Gloucestershire’s local SENSE centre is
Sense Family Centre – Woodside
Kingswood Foundation Estate, Britannia Road, Kingswood, Bristol, BS158DB
Telephone – 0117 9670008
Further Information
LIAISE is a dedicated patient and family support service for Bristol Royal Children’s Hospital for womens’ and childrens’ services based at St Michaels Hospital. LIAISE stands for Listening, Information, Advice, Involving, Support, Experience.
NHS continuing care for children
Children and young people with complex health needs may be eligible for NHS continuing care.
Children and young people’s emotional health and wellbeing
Children’s community health services provide a wide range of care and support for young people
Transitioning to adult health services
Young People may need continued support from health services once they are 18
Winstons Wish support children and young people after the death of a parent or sibling
Child Beravement Uk helps children, parents and families to rebuild their lives when a child grieves or when a child dies.
Cruse Bereavement Care provide free care and bereavement counselling to people suffering from grief. They offer telephone, email and website support.
Contact are a charity for families with disabled children. They support families with guidance and information.
South Glos Parents and Carers are a supportive community of parents and carers who work to improve services and support for children, young people with additional needs.
SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK.
NICE guidance This National Institute for Health and Care Excellence guidance covers the planning and management of end of life and palliative care for children 0-17 with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them.