In November 2015, Pancreatic Cancer Awareness Month, I spent a week educating primary care professionals, scientists and politicians across Europe.  Here is a diary of my adventures:

Friday 6th November: Primary Care Society of Gastroenterology, London

At the Primary Care Society of Gastroenterology, I presented to primary care specialists with an interest in gastroenterology. While they naturally knew about pancreatic cancer, many were informed by the statistics, the causes and risks and some were amazed by the link between new-onset type-2 diabetes not associated with weight gain. This is something that can happen to patients up to 2 years before diagnosis and indeed, happened to me a year before my own diagnosis.

Many were very interested in joining with us in our research project to audit patients in primary care with a diagnosis of type 2 diabetes and a BMI of less than 25. We hope to be able to extend more widely our pilot study in 2016.

Saturday 7th November: The Pancreatic Cancer Forum, Milan

Ali Milan November 2015
Venue for Milan conference

Here I presented to a conference of international scientists and clinicians from across the globe, all with an expertise in pancreatic cancer. It was a large, well-attended conference and the sheer size of the conference hall was a little daunting. I spoke about the European situation for pancreatic cancer: about how it is the fourth leading cause in cancer death in Europe and that there are vast differences in both one and five-year survival rates between countries.

Eurocare 5 5year survival comparisons

Sadly, UK countries fare really badly in these league tables with some of the worst survival rates across the whole of the EU.

I also spoke about the work I have been doing with the EU Multi-Stakeholder Platform on Pancreatic Cancer; now thankfully shortened to just Pancreatic Cancer Europewww.pancreaticcancereurope.eu

The ‘Platform’ is made up of specialists, researchers and patient groups across Europe and I am the UK representative. I told the conference about the three workstreams: Awareness (which I head up), Diagnosis (of which I am a key member) and Registries. I let them know too about the outputs of those three groups – 10 key facts booklet, a symptoms poster (based on the PCA one!), a EU Parliament Declaration, a GP fact-sheet on how to spot pancreatic cancer and an update of the crucial work of the registries project – to consolidate and improve the data we hold on pancreatic cancer, its diagnoses and treatments across the EU.

My talk was very well received and afterwards many clinicians wanted to have copies of my slides for them to communicate the messages in their own countries.

Monday 9th November : European Parliament, Brussels

Ali and MEP Liadh Ní Riada at EU Parliament
Ali and MEP Liadh Ní Riada at EU Parliament

On Monday, I flew in to Brussels to have talks with MEPs about the work of Pancreatic Cancer Europe and also to have a meeting with with the Platform Members. The MEP meetings were to encourage them to support the Platform but also to get them to sign the declaration document to enable increased focus on pancreatic cancer in the European Parliament.

The Pancreatic Cancer Europe meeting was very productive – included the final plans for dissemination of the workstream outputs including translations into 12 languages of the key documents and an introduction of the website (www.pancreaticcancereurope.eu) and an awareness microsite  for WPCD2015.

It was agreed that for 2016 there would be another Workstream for a communications function and this would be run by the European Cancer Patients’ Coalition (ECPC) of which PCA is a member. I will be heading up ECPC’s workgroup for pancreatic cancer in 2016.

There was discussion about the key focus areas for the Platform for 2016 –

  • continuation of communication/dissemination of the workgroup outputs.
  • collation of the European specialist centres for pancreatic cancer on the website (for patient information).
  • It was discussed that a criterion should be set for exactly what constitutes a specialist centre – surgical Whipple’s throughput as one, clinical MDT, relevant palliative care pathways etc – these exist in both the UK and in Germany.
  • Early diagnosis function to work with COST ACTION (EU Pancreas) to work on the key clinical areas and research priorities.
  • Exploration of diabetes mellitus not associated with a metabolic condition (current work of PCA), CA-19-9 and other tumour markers.
  • Palliative care pathways.
  • Access to latest chemotherapy drugs.
  • Encouraging other countries to take part in the registry trials.
  • Patient information and resources.

Also there was discussion surrounding the governance – what type of legal entity should we be working with – as little bureaucracy as possible – clinicians having little time for this.

Wednesday 11th November: K.E.F.I patient group, Athens

I was invited by K.E.F.I – a cancer patient group in Greece to speak at their pancreatic cancer awareness event in Athens to mark World Pancreatic Cancer Day. I was presenting with a specialist surgeon, a specialist oncologist, a specialist nurse and a palliative care consultant. It appears that services for patients are not quite as joined up as they are in the UK and that some patients do not get access to all available treatments, especially palliative care and pain management.

My talk not only included my experience as a patient of pancreatic cancer but was used to disseminate the work of the Multi-Stakeholder Platform to the Greek people.

We were joined by a 10-year survivor of pancreatic cancer who was speaking for the very first time about his diagnosis and treatment. His talk was not only inspiring, but it was extremely emotional and a powerful way to put across the messages about the disease.

It’s been a long and tiring week but well worth it. The encouraging thing is that there is now a community of like-minded people who want to improve pancreatic cancer survival and the patient experience across Europe. This is the beginning but the momentum is building and building fast. I am pleased to be able to play a part in this and take it to the next level. Exciting times are ahead for pancreatic cancer awareness in Europe!

For more information on our campaigning work, please visit: https://pancreaticcanceraction.org/about/what-we-do/campaign-influence/

pansy-in-handWhen I launched Pancreatic Cancer Action in 2010, I chose the pansy to be the logo at the time.  While the Pancreatic Cancer Action logo has been updated, the pansy is still an important party of the charity and to me personally.

It all started with the colour purple. Some, all or none of you may know that purple is the internationally recognised colour for pancreatic cancer. Pancreatic cancer charities in the USA universally adopt the purple colour in their branding. Other pancreatic cancer organisations in the UK and abroad have also adopted purple as their brand colour. We have all seen what pink can do for breast cancer, so maybe purple can do the same for pancreatic cancer? We can but try.

So, we have the colour and we are a charity in the cancer sector. Surely we need a ribbon, don’t we? Well, we could, but the ribbon, to me, doesn’t say anything other than cancer. And while we are an organisation dealing with cancer we are also dealing with other things too such as awareness and survival.

So, back to the pansy. Although it is found in other colours, the pansy fits the purple theme rather nicely and what is even more special is that it flowers during November (the winter variety anyway), which is the month during which we have Pancreatic Cancer Awareness Month.

However, while the pansy ticks the boxes on colour and flowering time, to me the most important symbol of the pansy that it is a living thing. Having a living thing as a logo is important, as I want it in itself to convey a message of hope.

The main focus of our work here at Pancreatic Cancer Action is to raise awareness of the disease and that means shouting about the dire survival rates, the fact that nothing has improved for over 40 years, the underfunding of pancreatic cancer relative to the disease burden and to stop pancreatic cancer from continuing to sit in the shadows of public consciousness. This is all too difficult to hear when you yourself have been diagnosed with the disease. A plague of negative statistics can be upsetting.

The flip side to this is that I too am a pancreatic cancer patient and as a survivor, I want to offer some form of hope to others who have found themselves in the same situation I did 6 years ago in August 2007 when I was diagnosed. And I continue to campaign so that more people will be able to have the same outcome that I have had.

Hope when there seems none is difficult to maintain unless there are advocates promoting the potential of hope.

The problem is, we in the pancreatic cancer world are short on survivors to provide that advocacy role (as so many have successfully done for breast cancer and recently prostate cancer) as only 3 to 4 % of the 8,000 or so people in the UK newly diagnosed with pancreatic cancer each year will survive 5 years. Randy Pausch (the American university professor who sadly died of pancreatic cancer in July, 2008) noted, “There aren’t celebrity spokespeople for the disease because too few survive long enough to take on that role.”

Celebrity or not, that campaign mantle role must be filled in order to awaken society to the realities of this disease – the 5th most common cause of cancer death in the UK and allow for pancreatic cancer, its risks, symptoms and prognosis to be familiar to us all.

If you have been diagnosed with pancreatic cancer and want to take on an advocacy role by sharing your story on our website or in the press, please get in touch via our contact us form

 

We’ve sadly seen a few of our treasured celebrities and legendary greats such as David Bowie, Lemmy, Alan Rickman and lately Sir Terry Wogan pass away from cancer over the past few weeks. Alan Rickman, we now know, suffered pancreatic cancer. Not a nice start to the New Year, especially for their families and friends.

And while the media and press has been full of tributes, the Untitled design (1)headlines have screamed “silent battle with cancer”, “he kept if from all but his closest friends” and “nobody knew”.

Celebrities have chosen a career that has taken them into the limelight, the media spotlight and in some cases, such as Terry Wogan, they are such a household name we think we know them.

However, celebrities, like you and I are human too and a diagnosis of cancer is one that can be devastating for the patient and those around them. It’s a diagnosis that can be difficult to deal with when you do not have the world’s media trained on you let alone when they do. In the age of Twitter, one’s every move can be instantly shared with the globe – especially if you are famous. And, sometimes, when someone is in the public eye, the press and other media think they have a right to know and to tell the world.

As someone who is keen to raise awareness of pancreatic cancer, you may have thought that I would have wanted these celebrities with the disease to “come out’ and be public about what they are suffering when they are still alive. After all, the media attention this would bring to the disease can be enormous and we do need so much more attention focussed on pancreatic cancer. But, in my opinion, this isn’t the way to do it.

I remember poor Patrick Swayse (and to a certain extent), Steve Jobs, both of whom eventually went public with their pancreatic cancer diagnoses. I remember how brave Patrick was in particular about talking about his disease and about how he was going to beat it. His positivity certainly helped him survive a lot longer than the average, however the media were not always on his side. Keen to get the latest shot of a thin, gaunt man clearly in the last stages of his illness, they stalked him as he went to his chemotherapy sessions or to the doctor’s clinic.

This kind of salacious reporting is not in the public interest. It doesn’t help further the cause and in my opinion, there is a huge difference between what is ‘public interest’ and the fact that the ‘public is interested’.

Celebrities are keeping their illness private, not secret and we should respect them for that. There are so many reasons why a celebrity will want to keep their cancer diagnosis private; they may be worried about other people’s reactions, negative speculation in the media, not wanting people to feel sorry for them and, importantly, to protect those around them.

To further the cause for pancreatic cancer, we need to have celebrities who have, like me, survived the disease to become advocates for change, to show the world that with an early diagnosis it is possible to survive and that with a focus on improving early diagnosis we will change the numbers for pancreatic cancer.

My condolences and thoughts are with all families recently bereaved by cancer, whether they are a celebrity or not.

 

This week, NHS England have been reviewing whether the chemotherapy drug Abraxane should remain on the Cancer Drugs Fund (CDF) in England. Currently, the combination of gemcitabine and Abraxane is routinely available on the NHS in Scotland and Wales but patients in England (who make up 83% of all pancreatic cancer patients) are only able to access the drug by applying to the CDF. If Abraxane is taken off the CDF, then patients in England will only be able to access it privately. This is an unacceptable situation and why we have spent this week raising this issue in the media.

Radio Day July 2015On Tuesday, Pancreatic Cancer Action CEO and Founder (and nearly 8 year survivor of pancreatic cancer) along with Penny Lown (pancreatic cancer survivor and one of the faces of last year’s advertising campaign) and Broadcast Medic and GP, Dr Hilary Jones gave over 20 radio interviews across England.

On Wednesday morning, Ali Stunt and Penny Lown gave an interview on Sky News Sunrise programme which you can view here:

On World Cancer Day, Cancer Research UK released new statistics to show that cancer deaths are falling with ten year survival rates of some cancers improving significantly since 1971.10 yr survival by tumour site 1971-2011 crop

It is of course fantastic to see such an increase in survival rates with  testicular cancer rates increasing from 69% to 98%, and 57% of patients diagnosed with bowel cancer, which used to have one of the lowest survival rates, will now survive ten years.  As you can see in the graph below, many cancers have much better survival rates.

The media attributed this completely shocking situation to the fact that pancreatic cancer is diagnosed too late.  As a charity who focus on early diagnosis, we are all too aware of this problem, which is why we fund awareness campaigns and GP educational programmes.

However, one of the reasons that many cancer survival rates have improved significantly is because of huge investment in research and awareness campaigns for other cancers.

If you would like to support our campaign for more funding, please write to your MP today, to highlight the issues.

We have a dedicated way to find and contact your MP: http://write.pancreaticcanceraction.org/.

You can use this template letter if you wish: MP-template-letter10yearsurvivalrates