Querying the CC diagnosis to treatment pathway

Helen Morement from AMMF attended Cancer52’s briefing at the House of Lords on 18 October, where Professor Sir Mike Richards, National Cancer Director at NCAT (1), stated that the diagnosis and treatment path for the rare cancers is now, “GP for referral – general/district hospital for diagnosis – specialists/specialist centre for treatment”.

In AMMF’s experience this pathway is often not followed – it would seem, in fact, that it often stops at the general/district hospital and many patients diagnosed with cholangiocarcinoma do not get referred to those specialists/specialist centres for their treatment.

AMMF feels strongly about this and raised the issue with Professor Richards, asking him exactly what is being done to make general hospitals aware that once a diagnosis of cholangiocarcinoma has been made, then treatment should be under the care of experienced specialists.

The series of correspondence is copied below for information.  Some very interesting points have been made in the replies received – Professor Richards has said he will be contacting Chris Carrigan (2) and Mick Peak (3) about this issue.  He mentions that it may be possible to get some information through The National Cancer Data Repository on the number of patients with specific cancers (and he added, “say cholangiocarcinoma”) who never get to a specialist centre.  If we had those figures, they could well prove an important weapon in our armoury …

Liver and biliary cancers were not covered by the Improving Outcomes Guidance programme, and Professor Richards copied Stephen Parsons (4) for his comment.  Stephen Parsons replied saying he will be forwarding comments in a few days.  So we wait for those  comments, and will report further when we get them.

As we believe that this is an area of concern to several of the other rare cancer groups, AMMF has agreed, together with the support of Cancer 52, to push this issue forward on behalf of everyone.  However, we will continue banging the drum loudly for cholangiocarcinoma …

 The series of correspondence to date between AMMF and Professor Richards follows:

Letter from Helen Morement of AMMF to Professor Sir Mike Richards, National Cancer Action Team, dated 30 October 2012:

Dear Professor Richards

I attended the Cancer52 House of Lords briefing on 18th October and, had there been more time, I would have liked to have raised an observation on one of your comments, namely (and I’m paraphrasing) that the path to diagnosis and treatment of the rare cancers is now, “ GP for referral – general/district hospital for diagnosis – specialists/specialist centre for treatment”.

In the experience of many of those who contact us, very often the path stops at the general/district hospital and patients do not get referred on to specialist centres for treatment.  In the case of cholangiocarcinoma, this results in precious time being lost and can make the difference in what could have been an operable situation becoming inoperable by the time a second opinion is sought (if it ever is).  And, as currently surgery is the only potentially curative treatment, this is a dire situation.

Is there anything actually being done to make the general hospitals aware that when there is a diagnosis of a rare cancer, treatment should always be in the realm of MDTs with experience of that particular disease?

I would very much welcome your comment.

Your sincerely

Helen Morement 

Chairman Trustee / AMMF


And the emailed replies:

From: Mike Richards <Mike.Richards@ncat.nhs.uk>
Thu, 1 Nov 2012 10:22:21 +0000
‘Helen Morement’ <helen@ammf.org.uk>, Chris Carrigan <chris.carrigan@nhs.net>
Mick Peake <mick.peake@uhl-tr.nhs.uk>
Subject: RE:


Thanks very much for getting in touch about this.  As ever, this is not just a straightforward matter of data analysis.  Where patients are referred urgently through the 2 Week Wait process we can track them from referral to treatment (for the 62 day standard), which will often be in a specialist centre.  However, for patients who are not referred urgently (and we know this is quite a high proportion for many cancer types) we can only track them from decision to treat  to treatment (for the 31 day standard).

As you indicate, the issue is that it may take some time for the diagnosis to be made at the general/district hospital and for a decision to be made that referral to a specialist centre is appropriate.  This may particularly be the case for some less common cancers, where non-cancer diagnoses may be much commoner than a cancer diagnosis.

I will talk to Chris Carrigan and Mick Peake about this.  It may be possible using The National Cancer Data Repository  to get some information on the number of patients with specific cancers (say cholangiocarcinoma) who never get to a specialist centre.  However, we would need to recognise that this may well be clinically appropriate in some cases.  However, this would of course need to be considered alongside many other priorities in their work programmes.

Best wishes


From: Helen Morement [mailto:helen@ammf.org.uk]
Sent: Friday, November 02, 2012 12:06 PM
To: Mike Richards; Chris Carrigan
Cc: Mick Peake
Subject: Re: AMMF Query

Dear Mike

Thank you very much for your speedy reply, and for your helpful and well considered comments.

Many thanks, too, for suggesting you will speak to Chris Carrigan and Mick Peake about this.  It would certainly be interesting to us if we can get information from The National Cancer Data Repository on the number of patients with cholangiocarcinoma who never get to a specialist centre. I suspect other rare and less common cancer charities would also find this information useful for the patient groups they represent.

The one crucial point that I think remains outstanding though is whether district/general hospitals are to be made aware of that onward referral pathway and whether they are equipped to make a diagnosis of a rare cancer.

I appreciate that, as you mention, there may be a number of reasons why this doesn’t happen, but unless those making that decision are specialists in that particular rare cancer, can we not empower the patient by ensuring they are given the option for a specialist referral?

I believe AMMF/cholangiocarcinoma is not alone in coming up against this problem, and we do have the assurance of Simon Davies that Cancer52 will help with a solution if there is anything we as a group can offer to do.

With kind regards
Helen Morement
Chairman Trustee

From: Mike Richards
Sent: Fri, 2 Nov 2012 13:04:44 +000
To: Helen Morement; Chris Carrigan
Cc: Mick Peake, Stephen Parsons
Subject: Re: AMMF Query


I understand the point you are making. All DGHs should be able to make the diagnosis of cholangiocarcinoma and indeed almost any other cancer. When problems arise it is usually because the possibility of a relatively rare cancer has not been considered.

In addition all cancer networks should have agreed pathways covering all cancer types linking DGHs to specialist centres. I suspect that these may be less well developed for liver and biliary cancers than for others as these were not covered by the Improving Outcomes Guidance programme. I am copying this on to Stephen Parsons who may wish to comment on this point.

Best wishes


From: Helen Morement [mailto:helen@ammf.org.uk]
Sent: Sunday, November 04, 2012 07:25 PM
To: Mike Richards; Chris Carrigan
Cc: Mick Peake, Stephen Parsons
Subject: Re: AMMF Query

Dear Mike

I really appreciate your reply, and look forward to the thoughts and comments from Chris Carrigan, Mick Peak, and especially from Steve Parsons re the liver and biliary cancer pathways, in due course.

Many thanks for what you are doing – this is an important area of concern not only to AMMF and cholangiocarcinoma patients, but to several of the other member charities of Cancer52.

With best regards



From: Stephen Parsons <Stephen.Parsons@ncat.nhs.uk>
Date: Sun, 4 Nov 2012 19:58:06 +0000
To: “‘helen@ammf.org.uk'” <helen@ammf.org.uk>, Mike Richards <Mike.Richards@ncat.nhs.uk>,S
Subject: Re: AMMF Query

Dear Helen

Thank you for your note concerning the above. I will forward some comments to you over the next few days.

With kind regards.



Links for info: 

(1) National Cancer Action Team (NCAT)


(2) Chris Carrigan – National Coordinator for Cancer Registration at National Cancer Action Team

For information on Cancer Registries click here

(3) Mick Peake, Chief Clinician at the National Cancer Intelligence Network (NCIN),

For information on Mick Peake, click here

(4) Stephen Parsons – Director, National Cancer Action Team



06 November 2012

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3 Responses to Querying the CC diagnosis to treatment pathway

  1. Margaret Noone says:

    Hi Helen
    My husband was diagnosed with C.C at our small local hospital but his consultant was going to refer him to Jimmy’s at leeds to have a liver transplant. Some three weeks later we were still waiting for a bed. Feeling a deep sense of despair I contacted my local MPs secretary at the house of commons one morning and was told a bed was available the same afternoon. Sadly my husband wasn’t suitable for a transplant but at least he did have the best chance. That was 19 yrs ago and prognosis seems to have changed very little. Thankyou for all your hard work. Margaret.

    Hi Margaret:
    Amazing that so little seems to have changed in 19 years … but, behind the scenes there really is a lot going on now – but of course, it all takes time and, as we know with CC, time is not on our side.

    I was surprised to read that you husband was considered for a liver transplant having been diagnosed with CC (although he didn’t get it, of course) – although at 19 years ago, this was possibly before this procedure was deemed to have too many risks and too high a mortality rate with CC patients to continue to be considered a viable treatment.

    Thank you for your kind comment – we will keep going until we have those answers!


  2. Bob Talbot says:

    It may seem rather obvious but are many cases of CC not associated with earlier gall-bladder problems often treated by its removal or by stenting? If so, should it not be mandatory for patients exhibiting symptoms which could be caused by gall bladder problems to be automatically flagged up as possible CC cases, and the appropriate tests and scans not be performed immediately, and that these patients referred to specialist diagnostic centres immediately?

    In my wife’s case the medics removed her gall bladder 18 months before CC diagnosis, and so this might have meant much earlier diagnosis and possible treatment, instead of the “you have only got 3 months” statement when the medics finally found out, by which time, of course, no treatment other than palliative was possible? It was especially (if you will pardon the pun) galling that after the op to remove her gall bladder the surgeon pronounced gleefully that there was absolutely no sign of anything cancerous. Oh and yes, this all took place in a hospital with a “Multi Disciplinary Team”, although in Scotland, not England.

    Lastly of course, there is always the possibility that removing the gall bladder actually triggers CC, and it would be interesting to know if there is any evidence for or against this supposition. If patients who have their gall bladder removed routinely go on to develop CC then all patients who undergo this procedure should be carefully monitored after it? Are they?

    Lastly, disregarding genetic factors, CC incidence does seem in the literature to be associated with a number of known chemical and biological risk factors. I don’t think that enough time is spent in the diagnostic process to rigorously investigate these, a situation which could be easily remedied if the above “gall bladder problem” trigger was used routinely to identify any possible risk factors.

  3. helen says:

    Hi Bob:
    One of the established risk factors for CC as listed in the recently published Guidelines, is, “Chronic Intraductal Gallstones”. Other than that I am not aware of gallbladder problems being associated with CC. I will ask the question for you, and let you know the response …

    CC is such an insidious disease, and so frequently does not readily reveal itself despite scanning and testing. I’m sure at the time the surgeon said there was nothing malignant to be seen, he genuinely felt that to be the case.

    There is so much that needs to be investigated ...


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