Rare Cancer Foundation Patient Day

I was invited today to attend a ‘Patient Empowerment Day‘ hosted by the Rarer Cancer Foundation (“RCF”).

As you know, Phyllodes is considered a rarer cancer as the incidence has historically been incredibly low.  Why ‘Rarer’?  Well there is a school of thought that says that rare cancers at the ones that a lot of people know about but don’t feature in the top 5.  RareR cancers are those that constantly need education for people to know about!  However it’s worth noting that there are a tremendous amount of rare and rarer cancers that barely make it into the press and therefore often miss out of funding and research as they’re deemed to be too quiet!

My invitation to this conference was firstly because of being diagnosed with a rarer cancer (and a member of the RCF) but also for the work that I do as ‘Living Beyond Diagnosis’ advocating for better care and survivorship issues for all cancer patients and their carers.

The Day was opened with an introduction by Andrew Wilson, CEO of Rarer Cancer Foundation.  Andrew is passionate about improving the standard of care for rarer cancers.

Professor Martin Gore, Medical Director at the Royal Marsden talked about how to work with your clinician and explained more about the role of the MDT (MultiDisciplinary Team) in patient care. He felt it was imperative that patients in the UK were aware and understood that each patient was to be discussed at an MDT.  What they do at their meetings?  What it means for the patient?  I certainly had no idea what an MDT was until I was thrown into ‘cancerland’!  Macmillan Cancer have a good explanation here.  It is essential that all parties involved are represented at an MDT when discussing each case.  Of course there are time and logistic considerations however should one party not be there, it may be that the patient’s case is perhaps not as holistic as it could be.  All MDT meetings are minuted and again it’s important that patients are aware of this as it can be referred to at any time by any member of the medical team to ensure the procedures and rules are adhered to as well as being reconvened should the patient’s situation change.

He spoke of the importance of patients knowing their rights within the NHS.  He highlighted that the NHS is OUR service and in order to be part of our care we should not be afraid to ask questions, make choices, take part in clinical trials and, with advice, own our care.

He spoke about the importance of clinical trials and how most private patients in the UK do not get access to clinical trials.

He explained a little more about the New Cancer Drug Fund (NCDF) and the changes that mean that there are more drugs now routinely available.  It is crucial that we start to see more trials and subsequently more drugs available to the rare and rarer cancers.

Our next speaker was Rachel Rowson, Media and Communications Professional.  Rachel is a policy advisor to the RCF and was recently involved in the development of the RCF’s report There when you need it the most?  The Cancer Drugs Fund: 2011-12 annual report.

Rachel spoke at length about the need for patient advocacy.  She said how important it was that rare and rarer cancers should have a voice in the media.  She used breast cancer as the perfect example of how the voice of patients is often at the fore of media subjects.  Rachel encouraged us all to get involved and also to ask others to contact them if they would be interested in doing so.  The question of support for the patient/carer was raised during the Q&A session and I was pleased to hear that training and support is provided.

Would you be prepared to take part in pro-actively campaigning, perhaps doing radio, newspaper or TV interviews about your experience?  Also RCF are putting together a patient panel.

If you are interested in becoming involved in this worthwhile task, please email info@rarercancers.org.uk with the following information:

Email address
Year of Birth
Cancer Type

Rachel also launched their new publication “The Informed Patients Toolkit” – a truly valuable booklet for people entering cancerland for the first time or unsure of the structure and where to go.

Lynda Pyle, Senior Research Nurse at the Royal Marsden then spoke about the role of the Clinical Nurse Specialist (“CNS”).  We know from the results of the past Cancer Patient Experience Survey that there is a direct correlation between better patient outcome and have a CNS.  (I don’t understand why when we know this that this role is being marginalised by less recruitment and overloading with other tasks on the remaining staff!!).

Lynda in her role as Senior Research Nurse spoke about the importance of clinical trials and recruitment for them.  She also explained that we needed to try to remove the myth and worry about clinical trials from people’s minds.  A good Research Nurse will, of course, discuss everything with you, answer all questions and be available to you should you have more questions.

Maggie Wilcox – Independent Cancer Patients Voice and Helen Bulbeck – Brainstrust

Both Maggie and then Helen spoke of how their roles have been developed from their own experiences.  They spoke about the importance of patient advocacy.  About the need for a cancer community of people affected by cancer who can share their experiences (both cancer and career) to make changes and influence the way cancer services are developed in the UK.  Both organisations are great examples and if you’re considering doing more as a patient or carer advocate then these would be an ideal place to find out about opportunities.

After each presentation there was a session of Q&As followed by a short exercise wherein we were asked on each table to talk about our own experiences (or those of others we know well).  In all cases very lively discussions and a great deal of notes for the RCF to go through after the Day.

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