Mis-diagnosis

[mallet]

My father was diagnosed with IBS (irritable bowel syndrome) back in September 2011, by his GP after a 10 minute appointment. He was referred to a counsellor, as the GP thought the IBS must be stress related, and the GP failed to identify the "red flag" signs, such as a family history of cancer (his brother died from bowel cancer), so my father was kept in Primary Care. He was asked to keep a food diary and even the counsellor was convinced my father was depressed and IBS had been brought on because of it.

We all know how quickly pancreatic cancer spreads, and vital months were lost by this mis-diagnosis.

He had not got any better by November 2011, so my wife, a nurse, took a look at the NICE guidelines (http://www.nice.org.uk/nicemedia/pdf/CG061NICEGuideline.pdf) and noticed that a blood test had not been taken to confirm the IBS diagnosis.

He went for a blood test 22 November 2011. The results came back 4 December 2011 and he was advised to go straight to A&E due to a high t-cell count. He was admitted to hospital same day and diagnosed with late-stage metastasis, primary cancer pancreatic. He died on the 20 December 2011 in a hospice.

I recently took legal advice on this, but was told this would be a high-risk case, as the diagnosis of IBS *might* be reached by a panel of GPs anyway, and that NICE guidelines are just guidelines and blood tests not a mandatory part of IBS diagnosis. It seems GPs are free to diagnose whatever they want without "legally" having to follow NICE guidelines, which came as a surprise to me.

I'm not saying this would have saved by father's life, but given 2-3 months notice of this devastating condition he would certainly have been strong enough to undergo chemotherapy and plan for palliative care, and lived longer.

To die from pancreatic cancer within 16 days of Secondary Care diagnosis is terrible, especially where Primary Care had failed to identify the condition.

There perhaps is merit for a test case here - GPs will soon take notice of the danger signs and take care to correctly diagnose conditions such as IBS with blood tests, if a threat of potential litigation sits above their heads.

Sounds like a harsh thing to do, but are GPs going to listen to research companies and read leaflets sent through their doors when they just have so much else to do?

[J_T]

Such a sad story. The symptoms are so non-specific that late diagnosis is all too common. My husband got diagnosed after getting jaundice and got a CT scan. Prior to that he was getting PPIs and ultra sound scan for 'indigestion' type pains. He had non specific symptoms from Christmas 2012 and got a diagnosis in March this year.

I can well imagine your frustration, anger even, that something as simple as a blood test was never carried out. I can also understand your desire to go to court but I fear the system for medical negligence cases is even more problematic than getting a diagnosis. It can cost ££££££s and take years, all this will take a toll on you and your family.

Its your choice of course but do you think it would help you more if you put your energies into campaigning on behalf of Pancreatic Cancer and highlight, wherever and whenever you can, the insidiousness of this awful disease?

[KATB]

Hi Mallet,

I am so sorry to hear your story.

It's well known that we need to raise awareness of pancreatic cancer, both among the general public AND GPs. I have had a boyfriend and a husband who BOTH had cancers (not pancreatic) missed by GPs so I understand how you feel.

The problem is that many symptoms are so generic that they can be attributed to any number of causes. You are right that NICE guidance is just that - 'guidance'. While doctors do generally follow NICE guidance, ultimately they make decisions based on their own clinical judgement.

What symptoms did your dad have when he presented? My dad was investigated for stomach symptoms initially, so was given PPIs and referred for an endoscopy. It was only when he meanwhile presented with painless jaundice that the GP immediately referred him for a CT scan. I know a few doctors personally and they all immediately think 'pancreatic cancer' when they are presented with this symptom, but I think otherwise the symptoms are very general and so ulcers, IBS and the like are usually investigated first.

I think you are right that GPs are perhaps not likely to read leaflets pushed through their door - they get so many along with pharma rep visits too. Maybe we should be seeking more urgent referral to secondary care for a specialist opinion but the focus these days is on keeping patients OUT of hospital and providing as much care as possible in the primary care setting.

As many of us have found on this forum, patient knowledge and willingness to ask questions and push for action and answers is absolutely key, particularly in this cancer. So perhaps a wider awareness campaign targeting the public would be one of the best ways to improve diagnosis and care. Look how much is going on for breast, prostate and bowel cancer. Not a day goes by that you don't hear something on the TV or radio about these cancers and, in my opinion, we need to be getting the same coverage for pancreatic.

Do keep us posted on what you decide to do and how you get on.

K

[mallet]

The irony with NICE guidelines is that there is a book on the GP's desk that details recommended procedures for diagnosing pretty much anything. Perhaps legislation should change to make it mandatory for GPs to follow NICE guidelines?

"Red flag" indicators should be thoroughly investigated and not left to the GP's judgement in a 5-10 minute appointment.

Primary Care is failing suspected cancer cases. If the GP is not worried, then the patient generally won't be either and just wouldn't think to get a second opinion or follow up.

If we lived in France or the USA for example, blood tests and investigations would be carried out immediately, as with my step father whom presented similar issues and had a successful malignant bowel tumour removal procedure carried out. Within a few weeks of seeing his GP.

We could run an e petition and get this heard in the House of Commons, or all write to our constituent MPs and get this put in front of the Minister for Health.

I feel the need to take some sort of action and do something - we need to be heard!

[J_T]

You are absolutely right of course. I don't know whether its the case but I think we should be looking at other countries models for health if they seem to be more successful than us. There again, our services are free and they are not elsewhere.

There is an e-petition already doing the rounds to try and get more funding and raise awareness here

http://epetitions.direct.gov.uk/petitions/48389

Likewise many of us have involved our MPs there is a copy of a letter I received back here

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=21&t=1043&p=8171#p8171

Also All Party Parliamentary Group Meetings taking place this spring, the next one is 18 June.

http://www.pancreaticcancer.org.uk/about-us/blog/archive/2012/may/first-meeting-of-appg-on-pancreatic-cancer-is-held-at-the-house-of-commons

Regards

Julia

[KATB]

Yes, as we have just found out to our financial cost, US doctors will do anything and everything because you are paying them! However when it comes to cancer treatment, patients there are often treated according to what their insurance covers and what they can afford in co-pay(when it comes down to medication) so it's not perfect there either.

Did the GP not investigate the possibility of bowel cancer given that his brother had it? What symptoms did he have?

K

[mallet]

Good point - he did have a bowel cancer check on an annual basis and the last was all-clear.

As for symptoms, just "gut-ache" that got gradually worse. This was probably signs of metastasis as he really didn't have any other symptoms. The primary cancer we suspect had perforated his stomach, which masked the weight loss as fluid built up in body cavities instead. He looked and felt very bloated, but this was put down to IBS.

I've seen the e-petition now, thanks. It's difficult for that one to go viral as it's quite "technical".

With regards the MP's letter, just asking for research funding is the wrong approach IMO - we need to raise awareness of pancreatic (and all) cancers and the fact that NICE Guidelines already provide the means for early diagnosis, if followed. If we could enshrine "pancreatic cancer" into NICE Guidelines so that this (and other cancers) are eliminated from something as simple as an IBS prognosis.

If diagnosis is broken at the Primary Care level, this is where it needs fixing.

There's a certain technique to lobbying - if we get as many people as possible to send a "unique" letter to their MP, then the Minister of Health will be forced to taking action. e-petitions don't work unless they go viral, are clear as to what they're about, and have well over 100,000 signatures. Even then, a House of Commons debate might not solve anything.

I've managed to raise £1,700 for Pancreatic Cancer UK through a charity bike ride - just feel there's something more proactive I could be doing.

[LindaH]

To my cost, I know exactly how you feel.

I went through months of my GP telling me it could be this.....it could be that, we even went down the line of Gluten Free foods.

First went to see my GP June 2012......finally taken into hospital December 2012.

I wrote a letter of complaint as the GP didn't even do a blood test or urine test. They fussed over me for a few weeks, phoning me asking how I was, how do I feel?.....how was I, how do I feel ? .....erm I have an inoperable 6cm tumour in my pancreas and told I could die within the year leaving my darling hubby of 29 years and my beautiful 21 year-old daughter....how do you think I b*oody feel?

Linda