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Palliative and End of Life Care support

Palliative & End of Life Care support for Children, Young People and their families who live in the Tees Valley.

The Children's Care Co-ordinator will support you and your family from the point of diagnosis by signposting and navigating you through the health, social care, and education system to ensure you get the right support and advice at the right time.  The co-ordinator will work in partnership with your family, providers, local authorities, and the voluntary sector, to ensure that the needs of your child are met, and your voices are heard. This support will be as personal and flexible as possible and provide you with a point of contact to support you through this journey.

The co-ordinator will utilise the personalised care approaches and support any transitions of young people to adulthood.

Please contact Children's Care Co-ordinator (Life Limiting Conditions). Email: necsu.cypcarecoordination@nhs.net

Rainbow Trust Children’s Charity supports families who have a child or young person aged 0-18 years with a life-threatening or terminal illness.

Some families may have to face the very real possibility that their child may die and struggle to cope on a day-to-day basis.  The Rainbow Trust's family support workers provide a lifeline to these families.

Family Support Workers support the whole family including parents, carers, the unwell child or young person, brothers, sisters, and grandparents.  Rainbow Trust Support Workers enable families to make the most of their time together, offering them practical and emotional support, whenever they need it, for as long as it's needed.

Support is varied and depends on the needs of the family and can include:

  • Listening to families fears and anxieties
  • Helping to explain illnesses, diagnosis and treatments
  • Keeping a seriously ill child or young person company during hospital stays
  • Driving families to medical appointments to help save time and money
  • Organise fun activities for unwell children or young people and their siblings
  • Offer support through bereavement and grief

For more information please visit: Supporting Children and Families | Rainbow Trust Children's Charity  

Together for Short Lives is a UK registered charity supporting children and young people receiving palliative care. Together with their members the charity will stand alongside families, supporting them to make sure they get the vital care and help that they need to help improve and support children and young people's palliative care services and professionals. Also raising awareness an understanding about childhood death so that every family can the right care and support. 

Their helpline is there for families facing the toughest of times.  They offer confidential emotional support and information on a range of issues and provide easily digestible information about available support, so families spend less time searching for help, meaning they have more time together.  The charity will connect families with support services and other families who understand what they are going through, so they don't feel along.

For more information and how to access please follow Together for Short Lives.

CHIPS is a specialist service designed to provide expert palliative care support for babies, children and young people with serious and life-threatening conditions and their families.  The services works alongside other clinical teams that are caring for them.

CHIPS is a regional service working across North East and North Cumbria and their roles include, general advice and support for clinical teams, children young people and their families, introduction palliative care at the point of diagnosis or another point in their illness, support with planning and managing complex symptoms, co-ordinating end of life care whether that is at home, hospice or at hospital, bereavement support and signposting and teaching and training teams and individuals.

For more information and how to access please follow: CHIPS - Newcastle Hospitals NHS Foundation Trust (newcastle-hospitals.nhs.uk)

Zoe's Place provides a short break service, palliative and end of life care to babies and infants aged from birth to 5 years old, living with life limiting or life-threatening conditions.  Compassionate care is provided to all who access Zoe's Place and there is no cost to families for this service.

For further information please access and contact the following:
Tel: 01642 457985
Email: info@zoes-place.org.uk
Website: Middlesbrough - Welcome to Zoё's Place Baby Hospice (zoes-place.org.uk)

Butterwick House offers a warm welcome and support to babies, children, teenagers, young adults, and the whole families diagnosed with a life limiting condition, palliative and end of life care. The care team is comprised of Registered Sick & Learning Disability Nurses, nursery nurses, health care assistants, and trained volunteers, all here to make sure our children and young people are cared for, feel happy, safe, are listened too, and have fun.

Butterwick House offers a bright and happy environment where families can make the most of every moment.

Access to Buttterwick House is by referral from a medical professional. For further information please visit Butterwick Hospice.

The Home and Hospital Service provides education for children out of school or in hospital due to a health need.  This service is offered to children of statutory school age and unable to attend school due to their physical health and provides education to help prevent them from slipping behind in their schoolwork.

Teaching sessions are offered at a location near to your home or if necessary, in your home. Staff will work closely with children to ensure they follow the right programmes of study and support integration back into school as soon as possible following advice from a medical professional.

For further information please contact the education department within your local authority or the SENCO within school.

Carer support services provide a range of different services to help support adults, children, young people, and their families who are in a caring role. Please follow the information below and click on the areas where you live to find more information about carers support.

Darlington - Darlington BC - Young carers and young adult carers and/or Home - Durham County Carers Support (dccarers.org)

Stockton - Eastern Ravens Trust and/or Support for Carers
Hartlepool - Hartlepool Carers

South Tees
Redcar & Cleveland
The Junction Foundation Young Carers

Parent Carer Forums work in partnership with Health, Education and Social Care to ensure that the voices of parents and carers of children and young people are heard. The parent carer forums will also offer support, advice, and guidance to families with Children and Young People with Special Educational Needs and Disabilities (SEND). To access your local parent carer forum please visit:

SEND Family Voice Redcar & Cleveland
Middlesbrough Parents 4 Change
Hartlepool Parent Carer Forum
Stockton Parent Carer Forum
Darlington Parent Carer Forum

To access the regional parent carer forum information please visit here.

The SEND Local Offer is for families, children and young people with special educational needs and disabilities from birth to 25 years old. It provides local information, advice and support about education, health & social care. Each Local Authority have a local offer.  On your local offer you will find information relating to Early Help, Portage and Short Breaks as well as other information that might be useful to you.

Please take time to look through these pages for advice, guidance, and support for your family.

To access the local offer for Darlington Click Here
To access the local offer for Hartlepool Click Here
To access the local offer for Stockton Click Here.
To access the local offer for Redcar and Cleveland Click Here
To access the local offer for Middlesbrough Click Here

Learn more about the Needs Led Neurodevelopmental Pathway Bubble of Support here.

Find out about Leo's Perinatal Services - supporting families through pregnancy and baby loss in South Tees here.

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