Screening and specialist nurses central to patient care

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Published: 16 Jul 2012
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Jola Gore-Booth – EuropaColon, France / UK

Founder and CEO of EuropaColon Jola Gore-Booth talks to ecancertv at the 14th World Congress on Gastrointestinal Cancer in Barcelona.


In the interview, Ms Gore-Booth discusses some of the work the patient advocacy organisation does, including some of its latest initiatives.


She highlights how early screening for colorectal cancer (CRC) saves lives yet very few European countries currently have formal population-based programmes. The lack of harmonisation needs to be addressed.


Ms Gore-Booth also discusses patient access to the best available care and the vital role that clinical nurses specialists play in the care of patients with CRC.


This programme was supported by BAYER.

World Congress on Gastrointestinal Cancer 14, Barcelona, Spain


Screening and specialist nurses central to patient care


Jola Gore-Booth – EuropaColon, France/UK



Are there other groups besides EuropaColon that exist to help patients with CRC in Europe?


Well there aren’t. Basically, what happened was that although we have an abundance of organisations in the UK that are working with colon cancer, in Europe there was nothing, there was absolutely nothing. We did a very, very good survey, there was one organisation in Germany called the Burda Foundation, but we realised that there was nothing and that we had to start from zero setting up patient organisations. Today, seven years later, we have 21 organisations. It’s still a bit of a way to go but it’s pretty good progress in seven years.


What are some of the functions of EuropaColon?


We focus mainly on two or three key issues, the first one being screening because we all know that screening saves lives. Colon cancer is highly treatable if it’s diagnosed early, unfortunately at the moment the statistics show that most people present with late stage colon cancer and therefore we have very high deaths. So screening has to happen and in 2003 the Commission made a recommendation that every citizen over 50 should be screened for colon cancer through quality assured formal population screening programmes. Unfortunately, at the moment, we only have five or six countries that are actually doing formal population screening. There is a huge confusion and harmonisation has to happen and I think that is being slowly addressed. The second thing we focus on is access to best treatments and care and especially now in times of austerity patients are finding it very difficult to have access to best treatment. It is very difficult because governments are struggling to find the funds to pay for what are now quite expensive therapies but we have a view that governments have to invest in health because they’re investing in their citizens. CRC is a disease of the over-50s and we have an aging population and these people have to be treated. So that’s the second part of our work. We are very politically active, both at Brussels and with our groups at national level. I will be speaking at the World Congress on Gastrointestinal Cancer to the nurses, stressing how critically important clinical nurse specialists are in the patient pathway. From the moment a patient is diagnosed to whatever the outcomes, they need someone there to support them, to guide them and to help them and there’s no-one better than a clinical nurse specialist. I believe that a recent survey has proven that if a clinical nurse specialist is involved in the patient pathway, it is a cost-effective exercise but above cost comes the support that patients desperately need when they’re told they have cancer.


What are some of the barriers to getting the issues you’ve raised addressed?


Oh dear, I think everybody would like to say that the barrier is money but I don’t think it’s money, I think it’s... In screening, as I’ve already mentioned, there is so much confusion. There are different tests, there are different ways of doing the tests, there are different views on who should do what and it’s very difficult to get consensus despite the fact that guidelines have been produced for colorectal cancer screening. I’m afraid to say that these guidelines are not being taken into account and are not being looked at. I’ve again mentioned that access to quality treatment is very difficult and part of the difficulty is that what new innovative treatment can do now is that if you have an advanced colon cancer, with some of the new therapies it is possible to shrink tumours, to resect them and for patients to have another four to five years of life minimum. So these are very difficult to make governments understand that they’ve got to invest in that. I think another terribly important barrier is the fact that there are still an awful lot of people in Europe who do not know what colorectal cancer is and that early diagnosis is critical.


What are some of EuropaColon’s future plans?


We’ve always been accused of being an organisation that has funding for a Mini but wants to drive a Rolls Royce, so we always have very ambitious plans but the most important event that we’re doing is next year - our second Colorectal Cancer Patient Conference, once more in partnership with the World Congress on Gastrointestinal Cancer. I warmly invite anybody who is watching this video to please come to our conference because we have some wonderful speakers and there is a lot to learn.


Do you have a final take-home message for the viewers?


The most important message I can give is don’t think that you’re not possibly going to get cancer. Don’t make excuses for not being screened. It can happen to any one of us and yet is so easily avoidable if only we all went and got screened at 50.