Useful Links
Action for Sick Children supports sick children and their families, and works to ensure that health services are planned for them. It was originally a pressure group to improve the plight of children and their parents in paediatric wards. Now it has information leaflets, videos, etc. available about children in hospital. www.actionforsickchildren.org.
ACT (the Association for Children's Palliative Care) maintains a database of support services for parents with sick children, and can give information about the location and activities of community nursing teams (including 'Diana Nurses'). www.act.org.uk.
Adam's Hats is a charity supporting research into neuroblastoma in older children, the least-represented group www.adamshats.org. It also offers holidays for children with neuroblastoma and their families. Download details of the programme here. Your Hospital Social Worker can download an application form here.
Cancer Backup is Europe's leading cancer information service, providing accurate, up-to-date and authorative cancer information, resources and support. www.cancerbackup.org.uk.
CancerHelp UK is a free patient information service from Cancer Research UK providing non- medical summaries of all open trial protocols. These can be found at www.cancerhelp.org.uk/trials/trials/default.asp. Click on 'Children's' in the drop down menu that appears for a list of all trial summaries, including those for neuroblastoma.
Cancer information by NHS Choices offers information on cancer including causes, symptoms, diagnosis, risks and treatment and with links to other useful resources. These can be found at www.nhs.uk/conditions/cancer.
Cancer Research UK is the UK's leading cancer charity with general and specific information about cancer, treatment and trials. www.cancerresearchuk.org.
Carers Gloucestershire is a charity providing information, support, advice and advocacy to carers and the person they care for in Gloucestershire, including giving an opportunity to meet other carers, share experiences and work together to get things changed for the benefit of everyone. www.carersgloucestershire.org.uk.
The Children's Cancer and Leukaemia Group (CCLG) is a national professional body responsible for the organisation of the treatment and management of children with cancer in the UK. www.cclg.org.uk.
CLIC Sargent Cancer Care for Children may be able to offer financial help with any expenses directly incurred because of a child's illness and treatment. The charity finances some social workers at treatment centres. www.clicsargent.org.uk.
FaceBook has a Society presence www.facebook.com.
The Family Fund gives grants to lower income families with severely disabled children for things that make life easier and more enjoyable. It is the largest charitable sector grant-maker to families, giving around £29million to about 48,000 families each year. The Fund helps with things to meet the additional needs of caring for a severely disabled child such as holidays, washing machines, driving lessons, computers and hospital visiting costs. All funding comes from the government. www.familyfund.org.uk.
Helping Hands is an initiative by WellChild to provide one off practical home improvement projects that have a positive impact on the quality of life of seriously ill children and young people. Download further information here.
Homes with Heart is the only agency which allows private holiday home owners to donate a week to families who really need some time together away from hospitals and treatment. All the houses are self-catering, comfortable holiday homes and all families need to be referred by a medical professional who knows them well, knows that they will look after the house and really benefit from some time away in a pleasant environment. Ideally, families should be able to travel during term time as that means the owners aren't interfering with their commercial bookings. The agency is run by one woman from her kitchen so the service offered is friendly, accommodating and is able to adapt to individual needs. Call Jane on 01372 844330 or look up www.homeswithheart.org and see what Homes with Heart has to offer.
MacMillan Cancer Support is a self-help organisation for patients and their families. www.macmillan.org.uk.
NACCPO (The National Alliance of Childhood Cancer Parent Organisations) are parent run organisations with common aims of working together to support children and young adults with cancer. NACCPO is the UK member of the International Confederation of Childhood Cancer Parent Organisations. It has a list of holidays available for children with cancer at www.naccpo.org.uk/content/holidays-children.
One Parent Families is a support organisation for all lone parents and their children. www.oneparentfamily.co.uk.
Over the Wall provides residential activity camps during the Easter and summer holidays to children aged 8 - 17, who are affected by serious illnesses. www.otw.org.uk.
Self Help is a directory of information covering a range of disorders and diseases, including a reading list about neuroblastoma. www.ukselfhelp.info.
Société Internationale d'Oncologie Pédiatrique (SIOP) is the International Society of Paediatric Oncology www.siop.nl/.
The Thomas Ball Children’s Cancer Fund works to relieve sickness and distress among children suffering from cancer and members of their families in any way that will be beneficial to the sick child, usually in the form of medical equipment, holidays, special gifts and research. www.thomasball.org.uk.
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