The All Party Parliamentary Group on Pancreatic Cancer is launching a special inquiry into early diagnosis. The inquiry will build upon our prior inquiry reports, Pancreatic Cancer Research: A roadmap to change and Time to Change the Story: A plan of action for pancreatic cancer.

The APPG inquiry will aim to:

  • Asses the progress made against existing APPG recommendations on early diagnosis;
  • Analyse the early diagnosis developments made in the last few years (since the APPG’s previous inquiries), specifically any relevant successes and failures;
  • Identify the most promising initiatives aimed at improving early diagnosis;
  • Assess to what degree early diagnosis initiatives taken forward by NHSE and possibly other NHS entities in the UK will benefit pancreatic cancer patients; and
  • Make recommendations for early diagnosis and pancreatic cancer in the future.

We are calling for written evidence from a range of stakeholders including patients, carers, family members, clinicians, researchers, charities, policy makers and others.

To respond to the inquiry consultation, please see the Terms of Reference for further background to the inquiry, questions for stakeholders and a guide for written submissions.

The deadline for written submissions has been extended to Friday 27th February 2017.

As part of the inquiry, we will also be holding oral evidence sessions, taking place on dates in January and February. Click here for further information on these oral evidence sessions.

Please send your written submissions to APPGPC@pancreaticcancer.org.uk with the subject “Pancreatic Cancer APPG Early Diagnosis Inquiry”.

If you would like any further information, please contact the APPG Secretariat at appgpc@pancreaticcancer.org.uk

 

 

3 Comments

  1. David Fullard says:

    My 45 year old daughter presented to her GP in November last year with left upper quadrant and back pain. She was treated for a UTI then recommended for chiropractor help. After 6 weeks of no respite she researched her symptoms and told her GP she thought her symptoms were pancreatic based. Her GP disagreed, too young, not enough other symptoms, diagnosed an ulcer. Another few weeks passed again represented to GP again insisted it was pancreas based pain, GP said she would eat her hat if it was cancer. It was, she didn’t! CT ordered with no priority placed on it, CT undertaken 4 months after initial presentation, showed inoperable pancreatic cancer. Early diagnosis might have allowed our daughter a better chance of the Whipple procedure, her GP simply refused to listen to her patient. It IS unusual for a woman of this age to be diagnosed with ca Pancreas but no stool samples were taken, no weight measurements there was a refusal to countenance the possibility of it being cancer. These shortcomings are replicated throughout the country when we read the tragic stories on the families with pancreatic cancer website. Doctors need to be more aware of PC, they need to stop best guessing, they need to recognise that mot al, PC patients present with all of the symptoms and PC isn’t confined to the elderly. We lost our daughter, not through negligence, not through any lack of caring we lost her to PC BUT she might, just might, have had a better survival chance had she been listened to and given an earlier diagnosis.

  2. Barbara Thornton says:

    My husband had a cancer of the Ampulla of Vater (adjacent to the pancreas and same treatment) in 2011; he was 75 years old. Thanks to early diagnosis his treatment was successful and he remains cancer free. He was fortunate in having a doctor who realised that three bouts of acute pain could point to something serious and because we had private health insurance we were able to get a very quick ultrasound and subsequently CT scan. within one month he had had the Whipple operation.

  3. Miriam Dutoy says:

    In 2014 my husband, who was not overweight suddenly lost two stones in weight and developed sudden onset type II diabetes. We controlled this by switching to a slow release carb diet and cooking from scratch, at the end of 2015 he had bouts of bowel disturbance pain in his back and frequent belching and was given an urgent referral to the bowel team at our district hospital, the nearest of which is 45 minutes away. He was subjected to an unskilled radiologist causing him immense pain during a colonoscopy after refusing him any sedation (hospital have admitted this was incorrect in writing) and, because he was referred to a bowel team the results were not acted upon promptly or communicated within the hospital and to us because we came in through “the wrong route”. Apparently we would have had more effective treatment and communication had we been referred to the GI team! Plainly this is ridiculous because the symptoms could be either gastrointestinal or bowel. The hospital are short of GI consultants, they have been advertising GI consultant posts for three years and do not seem to be able to fill them. The outcome of this is that we were seen by a variety of people who made errors and omissions in ordering tests and in one instance ordered a dangerous and inappropriate test in error. They have admitted this verbally and in writing. It took 3months to get a diagnosis of inoperable pancreatic cancer, 3 months of an average 3 to 6 months life expectancy for someone of my husbands age and medical history. Half his life expectancy. During this 3 months no one was treating his pain or weight loss and we were unable to get anyone to tell us who was in charge of his case, all we were repeatedly told was the MDT. MDT’s do not work for the patient. To add insult to injury our final appointment post diagnosis was with a consultant oncologist who turned up 40 minutes late for the appointment. By this time my husband had lost a huge amount of weight, was in significant pain which no one was treating or medicating, my husband remarked that we had been kept waiting and was told that he, the oncologist had people sicker than my husband to deal with and he must be patient. I believe that any suspected pancreatic cancer should be treated as a clinical emergency in terms of diagnosis and treatment. The outcome may not have changed for my husband but he would have been spared quite a bit of pain, repeatedly being starved for tests and a huge amount of anxiety waiting for results, and incredibly tiring journeys. I have taken all these points up with the hospital and am working with them to identify improvements however, I do not believe that the previous recommendations of this committee have been understood or acted upon by GPs and District Hospitals.

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