The new NICE guidelines entitled ‘Brain tumours (primary) and brain metastases in adults’

Wednesday 11 July 2018

These guidelines, published today, have been updated for the first time in over a decade

We were keen that patients were very much kept at the heart of this process, to complement the already excellent professional panel who pulled this together.

During January and February this year we participated in the consultation for these guidelines and asked our community what they thought of the draft guidelines and fed in their views.

This is important to our work, and that of NICE, as it put patient voice front and centre as they were discussed.

Within the document itself we are delighted to welcome 5-ALA. This has now been recommended in the guidelines that it be used for all appropriate patients.

This builds on the work that NHS England had already committed to as part of the UK Brain Cancer Summit, arranged by Tessa Jowell, earlier this year.

Our collaborative approach

We have long campaigned for its wider use, and there are many healthcare professionals who have likewise been on this journey and helped inform our opinion.

A special mention from us for Stephen Price (Clinician Scientist & Hon. Consultant Neurosurgeon at University of Cambridge), Colin Watts (Professor of Neurosurgery, Chair Birmingham Brain Cancer Program at University of Birmingham) and Pablo Goetz (Consultant Neurosurgeon at Cardiff & Vale University Health Board), who have all worked with us over the last few years to see this inclusion happen and have helped us to understand this issue in much greater detail.

Another welcome inclusion in the guidelines is the encouragement of rehabilitation assessments during all stages of treatment. Through our Quality of Life reports we know the devastating physical, cognitive and emotional impact of brain tumours.

These include 38% experiencing balance problems, three in five experience fatigue and 29% feeling severely isolated. This more well-rounded and holistic approach is bound to benefit patients and their families in both the short and long term.

NICE guidelines is exactly that, they are guidelines and whilst there is a clear statement at the start of the document, for those tasked with applying it, they have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it."

It does also specify that it is not mandatory to implement the guidelines.

It is now our role to ensure that healthcare professionals are in a position to be able to implement these guidelines and they are given the resourcing and assistance they need to ensure that this the pathway for all patients.

Patient choice is key

One aspect of the guideline that we would have liked to have seen be slightly different is in regards to alternative treatments like cannabis oil and the ketogenic diet where it states that patients should be advised that the available evidence does not support the use of these treatments.

We would never want healthcare professionals to endorse or recommend anything that contradicted their professional opinion, however as people in our community are trying these things we would like to have seen a more explicit recommendation for clinicians to engage with patients on these issues.

From a recent survey we conducted on patient choice, we know that this is something that would have been welcome by the community.

Overall it is welcome news that these guidelines have been updated and that our community have been heard.

The 5-ALA recommendation is fantastic news and a real tribute to the work of Tessa Jowell and those surgeons we have been working with over many years to get this rolled out.

The new NICE guidelines represent another progressive stepping stone on the way to equal access to the best treatment and care for brain tumour patients and their families.