Neuroendocrine Cancer in UK – a growing crisis?

I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP). He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several parts of his submission.

“The label of “rare” can often be a dangerous misnomer in our healthcare system”

Firstly, the description of ‘rare’ as a ‘dangerous misnomer’ when applied to a cancer which is now more prevalent than better known cancers such as Stomach and Pancreatic. That essentially connects all other parts of this article and is at the root of the problem.

I prompted Dr Scott in a comment on his Facebook page, to consider that the sheer quantity of Neuroendocrine Cancer diagnoses has overtaken UK healthcare processes to the point that it has become recognised as the 10th most common cancer thanks to the work of Neuroendocrine Cancer UK and NHS England. The hint about accurate data was also interesting, again something I have been vocal on by suggesting this is clearly hiding the real incidence (and therefore probably also the prevalence). The challenge here is to ask the ‘system’ to produce statistics by cancer type in the case of Neuroendocrine Neoplasms, rather than by organ which is pretty standard worldwide.

Dr Scott suggested that while the UK has 13 accredited Centres of Excellence, access to them is inconsistent for those in rural areas. I know many of my readers from USA, Canada, Australia and New Zealand; will know about distance difficulties! Clearly there’s still room for improvement in smaller countries too. But I get his point about access because it reminded me that I had some luck in 2010 when I had a win on the postcode lottery, a term Dr Scott used in his Parliamentary submission. I had access within 15 minute drive from my home. Clearly everybody should be winning that lottery and I will try harder to support people in UK going forward.- cue the justification for the use of the term ‘crisis’ which I borrowed for the blog title.

“This is not a niche health concern, but a rapidly growing challenge that the NHS is ill equipped to meet”

He went on to say this (NET) is not a niche health concern, but a rapidly growing challenge that the NHS is ill equipped to meet. What I didn’t expect was the statement that Neuroendocrine Cancer could be headed for a crisis in UK. It appears to be directly inferring that the use of ‘rare’ labels may be a ‘dangerous misnomer’ for Neuroendocrine Cancer. I interpret that as the perfect storm of the following:

increasing numbers of Neuroendocrine Cancer diagnoses;
…..subsequent increase in prevalence;
…..combined with difficulties accessing specialists care;
….and the ability to quickly extract accurate data from our ‘organ based’ registries with which to justify increased support.

NICE/NHS England, the approvals authorities for funding treatment, have recently refused to fund two treatments because they think NET doesn’t need it (NHS England refused SIRT for NET even though NICE approved it; and NICE is not recommending funding for Cabozantinib). So they’re unlikely to fund increased resources to cater for patient demand if we cannot produce the data to support it!

One quick win might be to setup more ‘satellite hospitals’ as part of the ENETS Centre of Excellence (CoE) network (i.e. coordinate MDTs across multiple satellite (smaller regional) hospitals as part of a single ENETS CoE) – this is already happening across the country but more is required and may require inter-trust agreements. Then create more CoEs as growth meets the minimum requirements for a dedicated centre. That still needs resources though (£).

If I made it sound easy – then let me just say it is not!

Thanks for reading

You can read the Member of Parliament’s Facebook post and my comment on that post by clicking here.

You can go direct to his article in the UK Parliament newspaper – click here.

Kind regards

Ronny Allan

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