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help & information for parents

Click through to this section to see more about:

Help with money and benefits
Information about clinical trials
Lots of information about neuroblastoma
Talk to other parents and get support

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Resources

Talk to other parents

If your child has been diagnosed with neuroblastoma and you would like to talk to other parents in the same situation, please get in touch, as parents involved with the Neuroblastoma Alliance understand what you are going through and are happy to listen to you, and share their experiences.

Information about neuroblastoma

Straightforward information about the symptoms of neuroblastoma from the NHS.

National Cancer Institute (America) detailed general information about neuroblastoma.

Information from the Children's Neuroblastoma Cancer Foundation of America covering everything from diagnosis to treatment options.

Some parents want access to as much clinical information as possible. This US site provide cancer information for health professionals with comprehensive, peer-reviewed, evidence-based information about the treatment of neuroblastoma in North America. Please bear in mind that this is a resource for US clinicians. It does not provide formal guidelines or recommendations for making health decisions. The neuroblastoma treatments described are based on the Children's Oncology Group (COG) because most children with neuroblastoma in North America are treated according to the COG schema.

Information, support and clinical trials

NB Globe reports on published studies, meetings, and clinical trials enrolling patients. You will find objectively written posts thoroughly referenced to authoritative sources, general information relating to paediatric oncology topics, with an overall focus on what is of interest to parents of children with neuroblastoma.

Join the Neuroblastoma Online Support Group, an world-wide unmoderated discussion list for parents, family, friends, researchers and doctors. The group are there to discuss clinical and non-clinical issues and advances about neuroblastoma. This includes children's experiences, psychosocial issues, new research, clinical trials, alternative therapies and discussion of current treatments.

Information about neuroblastoma from Cancer Research UK, covering tests, treatment, neuroblastoma stages, clinical trials and the emotional aspects of coping with neuroblastoma.

Finding a clinical trial and questions to ask your doctor about taking part in clinical trials, from Cancer Research UK.

A link to a list of helplines and support groups from the Children's Cancer and Leukaemia Group.

The Children's Neuroblastoma Cancer Foundation of America have produced a Handbook for Parents of Children with Neuroblastoma, prepared by parents of children who are, or have been, in treatment for neuroblastoma. Although this is an American resource it has much of interest to UK parents.

The Children's Cancer and Leukaemia Group have easy-to-read summaries of all the published papers on clinical trials.

Information about complementary and alternative therapies

While some complementary therapies can offer comfort and relief to children with cancer, or while they are going through cancer treatment, it is a good idea to discuss therapies before trying them with your child's doctor to make sure they will not interact with other treatments they are having. Complementary therapy means treatments that are used with standard treatment. Alternative therapies refer to treatments that are used instead of standard treatment.

There are various reasons parents may look to alternative therapies. Sometimes it’s because they worry that conventional treatment won’t help their children, or concern about cancer treatments which cause unpleasant side effects and long term effects. However, substituting alternative therapies in place of clinical treatments is based on hope, and not on any kind of evidence that can be measured. (You can find a description of evidence based medicine here and here.)

It is unlawful to say that you have a cure for cancer in the UK. This is because some people would like to say that they have a cure, or suggest that an alternative treatment they know of, will help fight cancer. They may have a business that sells their suggested remedies to parents, and might use semi-scientific language to market their wares, or even say they know someone who was helped by them or cured from cancer.

Sometimes people promoting or selling alternative therapies for cancer argue that it is not them, but doctors and drug companies who have a vested interest. They suggest that doctors choose to harm patients through clinical treatments and suppress the truth about alternative therapies; they say there is a conspiracy. While modern medicine and drug companies are not above criticism, even a basic analysis of this theory can show how unlikely it is that there is a cruel conspiracy to hide effective treatments or a cure for cancer from the world.

Some countries do not have strong legislation like the UK. Mexico is well known as a centre for clinics where people are offered 'individualised' therapies. It is thought that there are as many as 35 to 50 alternative medicine clinics and hospitals in Mexican border towns, especially Tijuana. These clinics offer unproven, unregulated therapies. You can find comprehensive information about Mexican clinics at this link.

Sarah Macdonald, a British reporter who has experienced cancer herself, presents an investigative documentary for the Aljazeera news channel into how Tijuana clinics sell their alternative therapies.

We recommend that any parent who is concerned about their child's treatment discusses their worries with their child's doctor and with other mums and dads through the Neuroblastoma Alliance parent's group.

Help with money

Please see this list of links to charities and organisations that can help with the costs of having a child with cancer through benefits advice or by making direct grants.

Turn to us, a charitable service which helps people access the money available to them – through welfare benefits, grants and other help.

Clic Sargent provide direct grants to families.

Macmillan Cancer Support give grants as well as help with getting State Benefits through their benefits advice service.

The Lennox Children's Cancer Fund provide care grants and help with respite breaks for the family.

The Family Fund make grants to low-income families with seriously ill children and young people. They can help with essential items such as washing machines, fridges and clothing and will also consider grants for sensory toys, computers and much needed family breaks together.

Details of State Benefits you may be able to claim, and how to get help navigating the benefits maze.

React helps families caring for a child with life-threatening illnesses.

You might be able to get a Blue Badge which can help with London congestion charges and your parking costs.

We all need a break, and holidays can make such a difference to children suffering from cancer and their families. The Thomas Ball Children's Cancer Fund, which was set up by Thomas when he was aged just 9 years old, provides free holiday homes in Hampshire to children with cancer.

The Over The Wall charity provide free of charge residential activity camps for 8-17 year olds affected by serious and life-limiting illnesses in the UK. They also provide camps for the siblings of seriously ill children and family camps. You can view the camp programme and you can also apply online.

Help for bereaved families

What can you say to a parent who has lost their child? We found that the advice here provided very useful guidance.

The Child Death Helpline is for anyone affected by the death of a child of any age, from prebirth to adult, under any circumstances, however recently or long ago. The helpline is open 365 days a year. Your call will be answered by a bereaved parent. Call free on 0800 282 986 and free from all mobiles on 0808 800 6019.

Monday to Friday 1000-1300
Tuesday and Wednesday 1300-1600
Every evening 1900-2200

The Child Bereavement Charity provides specialised support, information and training to all those affected when a baby or child dies, or when a child is bereaved to families, young people, schools and health professionals

A Child of Mine - help for bereaved parents and families with the aim of offering help and information.