Parliamentary Campaigning

DID YOU KNOW? There is currently NO formal data collection, monitoring and sharing of side effects* for Standard Treatment Guidelines used for many children suffering with cancer.

Many children, including Skye died due to neurotoxic side effects of their treatment which were not made available to or shared among paediatric consultants quickly and efficiently due to NO DATA COLLECTION SYSTEM for standard treatment protocols in this country. This fundamental area of care must be addressed to prevent future deaths. We are working together with PHE and our sister charity Brain Tumour Research to call for this to be remedied.

*Side effects: Paralysis or objective weakness with impairment of function, coma, seizures, toxic psychosis, cerebellar necrosis, locomotor ataxia, severe constipation, severe deafness, symptomatic subtotal or total loss of vision, unrelating and severe headache, severe somnolence.

“The complete absence of monitoring for adverse effects of standard treatments of childhood cancers can lead to life-long disability and death.”

Baroness Nicola Blackwood Under Secretary of State at the Department of Health and Social Care from January 2019 to February 2020

Coroner’s Report

Report to prevent future deaths

“In my opinion there is a risk that future deaths will occur unless action is taken.

The concern is in respect of the difficulty which Clinicians have in sharing and accessing results (particularly in respect to complications) for new treatments such as the Milan Protocol. It is not clear if any person or organisation has responsibility for monitoring and recording the results. As I understand it, if there is a clinical trial, then there is a framework for centrally recording and collating this information. It is all part of the trial. If it is a standard treatment and not a clinical trail, the position is less certain. Indeed, the evidence that I received is that it is often left to Clinicians in individual centres to telephone colleagues in other centres to try and find out information. I understand that the difficulty in sharing information outside of a clinical trial is that there are issues of confidentialiality and governance which restrict the ability of Clinicians to share valuable information about results / complications with one another. It appears there is a need for a system of formality collecting and sharing data from non-clinical trial treatment protocols.

In my opinion action should be taken to prevent future deaths and I believe that your organisation (NHS England) have the power to take such action.”

“We definitely agree with Skye’s parents." What we really want is a national database to collect information in real time.”

Dr Nicola Thorp Consultant Clinical Oncologist, Liverpool

“The architecture for collecting the information is in place, but the lack of a formal data collection requirement and of a single responsible body can have devastating consequences for families.”

Baroness Nicola Blackwood Under Secretary of State at the Department of Health and Social Care from January 2019 to February 2020

Shocking Truth about Side Effects Monitoring

March 7, 2015

Nicola Blackwood MP arranged a meeting between us and Secretary of State for Health, Jeremy Hunt at the Oxford University Hospitals Trust today. He asked probing questions about the Milan Protocol and National Database for monitoring Standard Treatment Guidelines to Senior Management team at OUHT and said he would look into the matter personally.

Please listen to this short interview on BBC Radio Oxford at the very least out of respect for the person who all this has affected more than anyone else and who is not here today to be heard.

SHORT RADIO INTERVIEW

Nicola Blackwood MP Presents in Parliament

February 25, 2015

Nicola Blackwood MP presented Skye's case, and posed questions to Public Health Minister, Jane Ellison about some serious issues relating to the treatment of children's cancer. In order to view her presentation, go to 19:16:25 for a full version of the session. The video link does not seem to work in Chrome unless you have Silverlight installed but works well in Firefox.

Hansard Transcript

Parity of funding

The first ever Select Petitions Committee Report on the chosen topic of Brain Tumour Research, resulted in a packed public gallery and over 60 MPs debating in Parliament.

The overwhelming message was that the number of life years lost to Brain Tumours are greater than any other cancer, yet the funding is pitifully low. Ministers were humbled and shocked at the enlightening information they gathered in preparation for this debate and that Brain Tumour Research is now well and truly in the public eye.

We have met some parents, all with desperate stories and we wish you all much love and strength. With the incidence of brain tumours on the rise, MPs Guy Opperman, Ian Stewart and Nicola Blackwood brought a fantastic level of clarity and understanding for the way forward for a despicable Cancer which claims more lives of children and young adults than any other. I am absolutely sure they will they continue to support us so that our children do not die in vain as we strive for better survival rates and a better quality of life post treatment.

Full 3 hour Debate

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