NICE Quality Standards are a concise set of prioritised statements designed to drive measurable improvements in the three dimensions of quality – safety, experience and effectiveness of care – for a particular area of health or care.
We are really pleased to see that the first Quality Statement in the new QS states that GP's should have direct access to diagnostic tests including MRI. This is something that we have been asking for and it is fantastic to see it included in this new QS, as we know that people really struggle to obtain a diagnosis of a brain tumour.
As revealed in our Losing Myself: The reality of life with a Brain Tumour report, one in three people need to visit a medical professional more than five times before they receive their diagnosis of a brain tumour. According to data from the National Cancer Registration & Analysis Network, 53% of high grade brain tumours were diagnosed as an emergency in 2013 – more than any other cancer.
Whilst we welcome the fact that NICE have endorsed that GP's should have direct access to MRI, we are disappointed that this new QS is based on a recent update of the NICE Suspected Cancer Guideline, which we feel is inadequate when it comes to helping GP's identify brain tumours.
This is because the guideline is predicated on positive predictive values (PPV) for cancer. This method assigns a numerical value to a symptom based on the likelihood of a person presenting with that symptom having a certain type of cancer.
This works very well for cancers where the symptoms are limited and distinct, for example a persistent cough in lung cancer, but they work less well in cancers such as brain tumours, where the symptoms are varied and often mistaken as being indicative of other conditions.
In the NICE Suspected Cancer Guideline, the only presenting symptom which should result in an urgent referral for MRI is loss of neurological function in both adults and children.
When NICE consulted on this guidance we responded by stating this was inadequate and pointed out the research that underpins our HeadSmart campaign.
This research shows that children and young people may present with a number of different symptoms and that it is in fact clusters of symptoms that GP's should be aware of. We raised the same issue in our response to the NICE consultation on this new QS too and are disappointed that it hasn't been reconsidered or addressed.
We will continue to work with NICE, NHS England, NHS Scotland, NHS Wales, NHS Northern Ireland and other policy makers to raise awareness about the signs and symptoms of brain tumour.
Read the NICE Quality Standard on Suspected Cancer
Read the NICE Guidance Suspected Cancer Recognition and Referral