DarmKanker Nederland is an associate of EuropaColon, the European patient organisation. Mid November we will present the European Parliament a 'white paper' concerning the treatment and screening of colorectal cancer at a European level. More about this can be read in our monthly ‘Darmkanker e-nieuws’.
To provide patients with correct information, giving care and support. Jolien Pon explains what SPKS Darmkanker Nederland stands for.
Darmkanker Nederland is one of five cancer patient groups under the umbrella of SPKS (Foundation for patients with cancer in the Alimentary Canal).
The diagnosis of colorectal cancer is overwhelming. You're numb and you do not know where to begin. Darmkanker Nederland tries to give first of all, practical and useful information to patients and their families, both orally and in writing.
Originally the organistion was involved in advocacy and mutual support of fellow sufferers, now they are also committed in the provision of care and its quality transparent for the CRC-patient. By offering choice-information from the patients' perspective we put the CRC-patient really central. On the website you can find the Patient guide, where people can see which hospital provides good basic care to CRC-patients. In this way patients can, possibly together with their GP, make conscious choices and prepare for their visit to the hospital.
In their quarterly magazine ‘Doorgang’ we published articles with information about the newest treatment options. additionally there is a monthly E-news newsletter with short messages, calls and other news.
Darmkanker Nederland regularly organise special events in hospitals: ‘Darmkanker, hoe verder’ to a particular theme in depth. For this we invite one or two oncology specialists from the hospital. After the presentations questions can be asked and interested parties can get acquainted with Darmkanker Nederland.
Every year in Spring and Autumn we organise a national contact day on which several medical professionals give a presentation of a specific topic. The participants can also participate in various workshops.
In short, we want to give CRC-patients accurate information, care and support. We like to do this in collaboration with medical professionals.
We will continue working on further professionalisation – both preserving and further develop our expertise and knowledge– in relation with providing insight into the medical needs and care needs of CRC-patients
All this is only possible with more (active) members to increase the lobby and input from the perspective of the patient towards healthcare provider, health insurer and politics.
They help us to highlight our organisation, Darmkanker Nederland, among Dutch CRC-patients.
Jolien Pon SPKS
Voorzitter Darmkanker Nederland
The month of March is declared to be European Colorectal Cancer Awareness Month. Darmkanker Nederland organised a kick-off for this month with a symposium for colon cancer patients, their families and other interested parties.
This was the sixth time that this meeting was organised to celebrate the start of this special month. During the morning there were three presentations:
In the afternoon at four tables there was lively discussion about 'What is going fine, what could be better'. Consider, for example, follow-up care, more attention may occur here.
What was expressed by many participants was that there is hardly any support for life after cancer. The interest of people around you drops, while there is still a need to speak about this.
In the Netherlands the group organised a symposium on 1st March to kick-off the colorectal cancer month - March.
It was a success with excellent speakers and very curious participants.
For the upcoming year, we will fully focus on more transparency in multidisciplinary care and new treatment options. We intend to provide even more information to our readers with our magazine ‘Doorgang’. This will offer objective information that the patient requires both regular, complementary, and alternative.
The website www.DarmkankerNederland.nl is a work in progress and will be completed by March 2013 (colon cancer month). It will be a place where CRC-patients and their loved ones can find everything about the various stages of colon cancer. In the long run patients will be able to exchange their best practices. This will imply a step towards empowerment of the CRC-patient.
If possible, we would also want a direct participation in medical and scientific research and policy. The working group WIWO (Werkgroep Inbreng Wetenschappelijk Onderzoek) is currently being formalised.
In 2012 SPKS Darmkanker Nederland has been involved in lots of activities in the field of colorectal cancer. One of the main areas of focus was to become widely known as the patient organisation for people with colorectal cancer. This has only partly succeeded.
However, we are happy that you as a healthcare provider have found us! This resulted in requests to act as a patient advocate, read along with various scientific studies, participation in the committee of scientific research (NFK) and guideline committees (anus carcinoma and CRC).
In the Northern provinces, we were invited to provide input into the patients’ perspective for the CRC-guidelines of hospitals. We were involved in the establishment of the Oncology Centre Deventer. Recently we had the opportunity to give a response to the draft report on cetuximab 1st and 2nd line in colorectal cancer.
This year we were involved in the organisation of the colon cancer screening, and we look forward to the start of this screening.
This year had sad sides too though. A number of our active volunteers died or had to withdraw because of progressive disease. New volunteers are taking up their work, but still not nearly enough to meet all demand. We tried to reach Dutch patients with various activities. Despite all our efforts, this unfortunately didn’t succeed.
We realise that the small number of members makes us vulnerable. We are reflecting on the impact of the current situation.