10 children and young people are diagnosed weekly in the UK, according to The Brain Tumour Charity and this introduces permanent change to the child, their family and friends. 

Change is difficult no matter what that change involves.  In theory, change requires time, a different mindset, a new discipline and acceptance.  In practice, this may not always be possible and for families in this situation, a brain tumour diagnosis is never welcome change. 

When a child is diagnosed, the child and their family enter into this new complex world of specialist medicine and science.  A world of clinicians, oncologists, neurologists, cancer nurse specialists, neuro-oncologists, neuro-pathologists, neuro-psychologists, neuro-endocrinologist, neuro-radiologists, radiation oncologist and other specialist multi-disciplinary teams (MDT) professionals committed to the best standard of medical care for that child.  However, families are almost always unprepared for the wealth of information they will have to learn very quickly and this can affect how well they respond and interact with these specialist professionals.  The news of their child's diagnosis, the pace at which medical care needs to happen and the use of new and sometimes complex medical terminology, are often examples of new changes that can leave families feeling breathless and as if there isn't enough time to process these different changes. 

The British Medical Journal describes the summary of the 8 stages a child diagnosed with a life limiting condition will pass through as the End of Life Care pathway.  This is another terminology families may be unfamiliar and needs to be clearly explained.  According to Marie Curie, End of Life Care is treatment, care and support for people who are nearing the end of their life.  It’s an important part of palliative care but not the same as palliative care.  Palliative Care is treatment, care and support for people with a life-limiting illness, and their family and friends.  It’s sometimes called ‘supportive care’. 

There are several myths around having palliative care which only adds to the mis-information.  Palliative care can be received at any stage in a child's brain tumour illness.  Having palliative care doesn’t necessarily mean that a child is likely to die soon – some children receive palliative care for years.  A child diagnosed with a brain tumour, can also have palliative care alongside treatments, therapies and medicines aimed at controlling your illness, such as chemotherapy or radiotherapy.  At a time like this, communication between the child's family and the medical teams around their child is everything and we encourage our families to reach out to our medical advisors for extra support in de-mystifying the myths and mis-information around their child's brain tumour care.  You can learn more about other myths around palliative care here.