UHS response to Ashya King article in The Sun on Sunday

University Hospital Southampton NHS Foundation Trust is appalled at the content of an article which refers to Southampton General Hospital on page 19 of today's The Sun on Sunday entitled 'NHS CLIMBDOWN ON ASHYA SMEAR'.

The Trust would like to confirm a full comment and background information was supplied to the newspaper's reporter Mike Hamilton. None of this information was included or referred to in the article.

As a result, the copy is not only incorrect but extremely misleading. The newspaper has shown complete disregard for fairness, balance and ethical standards.

Above everything, the biggest concern is for patients, parents and their families who may see or hear about the report - which is in no way representative of evidence-based clinical opinion - and find it deeply upsetting and concerning. This is distressing for all clinicians who treat children with brain tumours and it is extremely regrettable.

There is a clear international consensus that the gold standard of treatment for medulloblastoma is surgery to remove the tumour followed by radiotherapy (either photon (standard) or proton) and chemotherapy. Proton beam radiotherapy is a type of radiotherapy and not a new treatment. In patients with medulloblastoma, the dose of radiation delivered is the same whether delivered by standard photon or proton beam radiotherapy. The only difference may be a potential reduction in some side effects in this patient group but that is still subject to ongoing research.

With the gold standard combination, the rate of survival among this patient group is 80% after five years. Without this combination, survival is reduced from 80% to 50%. These statistics are not Southampton-specific, they are quoted by all cancer specialists in the field of paediatric neuro-oncology. They are backed up by two clinical studies, Deutsch et al. Journal Clinical Oncology. 2000 and Packer et al. Journal Clinical Oncology. 2006.

The trust could never admit not having this information as it is not the trust's information to hold. The Sun on Sunday was told explicitly that the reference to survival statistics applies to all patients with medulloblastoma and that, if the newspaper wished to dispute this data, it should contact the Children's Cancer & Leukaemia Group and NHS England to discuss, which it did not do.

The trust has never suggested this data is incorrect and will not apologise for referring to evidence-based statistics.

It is of great concern that a national newspaper felt it appropriate to ignore the information presented to it and seriously misrepresent the facts to members of the public, families and patients. 

On behalf of the paediatric oncology community and families of children who have received treatment for brain tumours or are newly-diagnosed, this newspaper should correct this and offer an apology.

Posted on Sunday 20 September 2015