NPF Patient Representative Attends ENETs

I attended the European Neuroendocrine Tumour Society -ENETS –  Conference last week as a patient representative and  hope it may be interesting to have some feedback.

The event  was huge – much bigger than I’d expected –  for some of the major  lecture presentations  there were 1500 members in the audience from all  over the world. Most were Doctors but there were a lot of Nurses, some dieticians and other allied medical professionals. There were quite a few patients as well – I met  ones from Israel, USA, Australia, Holland & the UK. It was really very encouraging to see how much interest there is in NETs and how much research is going on into improving the management of NETs  from earlier, more accurate diagnosis to more effective treatments and to improving the Patient’s experience. It was also very heartening to realise that there are very strong, very active, patient advocate groups in many other parts of the world who all are part of INCA The International Neuroendocrine Cancer Alliance. 

The global picture however showed some terrible inequalities; for example monthly  Somatostatin Analogue injections like the Lanreotide preparation  Somatuline Auto gel, are not available to 80%  of the population of Brazil.  PRRT – like Lutetium Dotatate or Yttrium Dotatate is even less freely available world wide and the latest high powered most accurate  scans are of course not even available in all NET Centres of excellence in the UK . Net Specialist Cancer Nurses are very rare in some parts of the world – amazingly there are only two in the whole of Australia one of whom presented very eloquently at the Nurses meeting.

There were four sessions of particular interest to patients in The ENETS/INCA symposium

The first session  was on Identifying Unmet needs of NET patients and proposing appropriate actions to improve the situation. 

INCA  had done a detailed survey which listed a number NET patients’ requirements or  ‘needs’ for optimal management of the condition in terms of information they received and how often they received such information. The same questions  were compared & contrasted with the impressions  Health Professionals have of how effectively they have dealt with those needs. Of course there is quite a difference or  ‘Gap’ between the two sets of results with the Health Professionals thinking they are doing a lot better than the patients feel in some areas particularly when it comes to giving patients information about the choice of treatments possible. Please click here to see this very interesting survey. 

The lead oncologist, from  a UK NET Centre of Excellence, showed their, very well worked out, patient pathway & explained how they try to ensure patients get the information & services they need for optimal care. The problem being of course that even in the UK patient access to a Centre of Excellence is limited. 

This was followed by a presentation from  two NET Nurse specialists & a patient representative on The Critical Elements of Information patients need. 

The second session was on Patient involvement in identifying priorities  & procuring funding for Research into NETs. An American patient recounted his long & very active involvement as a patient advocate & referred to the numerous pertinent committees he has served on. He was, if you like, an example of a  ‘Super-advocate’ and clearly has personally  made a significant difference to the lot of NET patients.  An oncologist from New Zealand recounted how successful NET patients have been there in facilitating research & influencing politicians to release funds for NET  research.

In the third session a Dietician presented research on the not inconsiderable Nutritional Risks to NET patients and made a strong case for active Out Patient screening. This was followed by a 

a survey of patients side effects on Somatostatin Analogues highlighting that they report more side effects  & different ones  than those  referred to in the Manufacturer’s Patient  information sheets. One key message was that  if a patient experiences symptoms s/he should report them to whoever is prescribing their treatment even if they are not listed in the Patient Information sheet .

In the fourth session a Senior Nurse Matron demonstrated that although it is very rare for Nurses to prescribe anti-cancer drugs when this had been done in her Unit it had been very successful & well received by patients & Doctors alike.

Finally Catherine Bouvier, The CEO of The UK Net Patient Foundation presented a survey which included Nurses from 26 countries who help manage & support  NET patients,  on the challenges they face to to ensure they are fully competent to care for NET patients. Only 8% of them solely manage NET patients and not surprisingly given how diverse NETS are, many had concerns that they needed more training. 

There were questions and discussions after each session. The energy & commitment of all the speakers and the audience was very impressive.

NETs are being diagnosed far more frequently now than in the past with evidently almost seven times the number detected in 2012 as was the case in 1973. It was speculated that this was partly through better awareness of the condition and also possibly because far more scans and screening tests are being done than previously so that ‘incidental’ tumours are being picked up that would not have been possible before. 

I  came away from the conference feeling  that although, as a still rare cancer, NETs get far less funding than we would all feel they deserve, nevertheless there is a determination among some very impressive people to raise standards of care throughout the world.