Pancreatic Cancer Action
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NICE Referral for Suspected Cancer Guideline update

On Monday I travelled to Manchester for the first of what will be many meetings to discuss the update to the NICE Referral for Suspected Cancer Guideline for GPs. Pancreatic Cancer Action is a stakeholder in this process and Monday’s meeting was to discuss the scoping of the update.

One of the changes from the current guideline (last published in 2005) is that the new guideline is to be more symptoms based than previously. I can hear you all saying now that surely the current guideline is already symptoms based and why do we need the change? Well that is true to a certain extent but the current guideline was structured around cancer type rather than presenting signs and symptoms so the guideline user (the GP) had to first think cancer, then think site and finally compare the patient’s symptoms with the guideline.

A little back to front, especially for pancreatic cancer, when it is difficult to get clinicians to think of this cancer first off when making a diagnosis. This goes some way to explain why general practitioners in the UK diagnose only 18 per cent of cases.

What also came out of Monday’s meeting is that there will be a focus on clusters of symptoms. This too is good news for pancreatic cancer, as symptoms of pancreatic cancer in isolation can, more often than not, be thought of as being related to benign disease. The late Dr Simon Cats, a London GP who diagnosed himself with pancreatic cancer in 2011 succinctly argued the point in an article to the Daily Express; “Every symptom was mild. You have a little bit of pain, a little bit of heartburn, a little bit of fullness, a little bit of nausea, a little discomfort – which is what I call my dressing-gown sign – and a little bit of backache. If you have three or four of these symptoms you should be checked.” He went on, “…if you have these symptoms and they persist, you should have them investigated.”

This is all great but the current guideline does not include a diagnostic algorithm for pancreatic cancer and this is something that I will be pushing for. With pancreatic cancer, GPs need to act fast and they need to know when to refer, who to refer to and what investigative tests for pancreatic cancer need to be performed and when. I will be working with pancreatic cancer specialists up and down the UK along with the Pancreatic Society of Great Britain and Ireland to ensure that the right information is included in the new guideline.

This will mean a lot of travel and meetings. However, ensuring future patients are diagnosed earlier and in time for potentially curative surgery is fundamental to what Pancreatic Cancer Action is all about and it is so worth the investment of our time, effort and money.


4 Replies

Thank you Ali. If this makes a difference even for one family you will be rewarded for all your hard work. May I make some comments just to add to what you have already said?

My thoughts are based on personal experience from my husband's and one other family member's encounter with GP diagnostics and application of NICE guidlines. Sadly this was despite pressure from me to get my husbands symptoms taken seriously.

I think another challenge is to get GPs to even read the guidlines in the first place. Otherwise all the work producing new guidlines risks being in vain. Also the guidlines should strongly feature care and treatment of diagnosed patients not just the diagnosis - vitally important though that is.

So my questions are:

1. How do we ensure GPs keep up to date with new guidlines?

2. How can we ensure and monitor if they are being used and applied (in diagnosis and care and treatment)

3.. How can we make them accountable for their actions when they do not follow them?

My experience not just with GPs but also other medical professionals showed that the NICE guidlines (Upper GI) were not only dismissed but dare I say it laughed at when I dared to even mention them. This shows there is no penalty or accountability applied - so why should they even bother to read them?

I repeatedly suggested that PC should be considered and I was ignored while he languished on 6 month waiting list for a scan.

If the existing guidlines had been followed even with all their flaws, then my husband may still be with me and his children today. As a minimum, they should have used the information in the guidlines for his treatment and care. Unacceptable delays even following diagnosis (obtained by private scan and not until it had spread to the liver) contributed to his early demise.

I would also like to mention symptoms. Although it is good that specialists will be consulted to contibute information to the guidlines, I believe there should be patient and family (in the case of deceased relatives) input. I would urge that the list of symptoms be updated because it is incomplete and misleading.

My husband's signs and symptoms were ignored even as they increased and they were not mild by any stretch of the imagination. He displayed symptoms of diabetes for many months even before the pain and so called 'vague' sysmptoms started.

My other relative, (not blood related) despite having none of the risk factors for diabetes was diagnosed with type 2 diabetes with very little follow up. Her PC was so advanced when identified, they said it must have been slowly growing for many years.The link with diabetes and/or symptoms needs to be strengthed.

Another area that needs to be strengthed in the guidlines is specialist dietry needs - the ignorance in this factor is staggering. Again, this ignorance contributed to his poor quality of life when his "specialist" team insisted that they had to "fatten him up wth as much junk food as possible". I was dismissed and ridiculed when I tried to address this - I was even made to attend an appointment with the hospital dietitian who lectured me about how much fat he needed and all cancer patients needed in their diets. Good God they so added to his physical pain by forcing him to eat indigestable food.

The myth that pancreatic cancer is usually or often accompanied by jaundice MUST be strongly covered in the guidlines - my husband's GP insisted he could not have PC because he was not jaundiced. This critical error certainly contributed to the missed diagnosis.

I also don't believe PC should only come under the category of Upper GI cancers. There should be reference to it in the upper GI cancers but point to more in depth information. It MUST have it's own category to highlight it's unique traits and treatment needs.

I stongly believe there also needs to be a culteral shift in attitude of medical professionals toward Pancreatic Cancer.

The additional heartache caused by the gimaces on the faces of all staff from the top down at the mere mention of the words Pancreatic Cancer, is something I and my children will never forget. It was their signal to give up on even basic care let alone the specialist care this cancer needs. We were all abandoned and I am still haunted by that.


I have to agree, agree agree. We will be using data we collected from our patient survey last year on symptoms and other anecdotal evidence for the NICE update. Attitude is a difficult one and probably our awareness campaigns will do more to address that than the NICE guidelines. What we need to ensure that diagnosing doctors know is that if patients are diagnosed in time for surgery, their chance of surviving 5 yrs increases ten fold. I am living proof of that and will sing this from the rooftops. I too have had those awful grimaces from health professionals (& still do) which didn't make it easy to stay positive while undergoing treatment!

Our e-learning module which we hope to launch in June will be addressing some of the symptoms issues you mentioned including the type 2 diabetes link.

Feel free to get in touch if you want a more in-depth conversation via

Best wishes,



Thank you so much Ali and especially so for all your efforts to try and improve things. This task cannot be in better hands than you singing your message from the rooftops.

Your story gives the best message that there is hope for many and they desperately need to understand how the dismal figure can and MUST be improved.

I truly believe the negative aspects and culture have a strong influence on their treatment protocols and contribute to the failure to improve the outcomes.

Thanks again. I will message you my contact details so you have them if you need or think more information would be helpful to fight the cause.

Take care and wishing you all the best.


Thanks ALI you work so hard for PC , and as you are a survivor of this criminal and non forgiving cancer , you know only too well the devastation it causes .

Thankyou for all the good work you do .

Cath x x x


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