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.
The following charities can offer support to children, young people and their families.
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
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.
Aims to help sick children and their families through their journey. From the moment their child takes ill, during their time on the ward in hospital and then at home in the community they hope to provide support and items which make life a little easier. For those parents whose child sadly passes away they provide a variety of bereavement support, when the time is right. For further information please visit Team Evie Charity - Always Moving Forwards
Box of Sunshine are aimed at young people aged 11-16, who have a chronic illness, disability or condition (physical or mental) that prevents them from living a normal life. If you are a parent, carer, teacher, medical professional, relative or a friend of someone in this position, and you think a Box of Sunshine would bring a smile to their face, the please visit Charity Gift Boxes | Boxes Of Sunshine to see how it works.
Dreamflight UK is a charity that takes children with a serious illness or disability on their holiday of a lifetime to Orlando. The experience can be life-changing and gives young people an opportunity to do something that medicine can’t, discover independence, confidence and a new outlook. To find out more, please visit Dreamflight - Home
The Family Fund deliver grants for families raising a disabled or seriously ill child or young people on a low income across the UK. For further information please visit: Family Fund
You could get a grant from your council if you are disabled and need to make changes within the home. For example if you are physically disabled, have a learning disability, are autistic, have a progressive condition, have a terminal illness, have a mental health condition. You might need to, widen doors and install ramps or grab rail, improve access to rooms and facilities, for example with a stairlift, or level access shower, improve access to your garden, build an extension, for example a downstairs bedroom, provide a heating system suitable for your needs, adapt heating or lighting controls to make them easier to use. For further information please visit Disabled Facilities Grants: Overview - GOV.UK (www.gov.uk)
New Life Charity for disabled children have an emergency equipment service, they can help fund Equipment grants to keep them safe. To find out more please call 0800 902 0095.
The Bradley Lowery Foundation aims to support children, young people and their families living with a life limiting condition or terminal illness. To find out more visit Bradley Lowery Foundation.
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.
Hospices offer a very warm welcome to babies, children, young people and their families.
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.
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.
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:
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
Some families of children and young people with a life limiting condition have asked about potential organ/tissue donation following the death of their child. If you would like to find out more please visit Home - NHS Organ Donation
The following organisations provide accessible activities for babies, children and young people living with a life limiting condition or complex needs.
Senses Wellbeing Centre provides accessible, achievable and affordable sessions for everyone in a safe space. The centre is based in the Redcar and Cleveland area and is open Monday to Sunday from 9am - 8pm. For further information please visit Senses Wellbeing Centre.
The Wheelyboat Trust provides disabled people with freedom and independence on the water. Wheelyboats are a registered charity dedicated to providing mobility, learning and sensory impaired people of all ages with independent access to activities such as powerboating, nature watching, pleasure boating and angling in our uniquely designed wheelchair-accessible Wheelyboats. For further information please visit Wheelyboat Trust.
Finding travel insurance for children and young people with medical conditions can be very difficult. If you are concerned about whether travel insurance will be able to cover your child or young persons condition, the following may be able to help you - Insurance and Go.
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.