I was invited to give a speech at the Irish Melanoma Forum annual meeting in Dublin so I stayed at the Herbert Park Hotel where it was taking place on the 2nd December I want to thank them for the opportunity which was greatly appreciated. I hadn’t attended before because it is a Scientific meeting that is not open to patients, It is attended by Oncologists, Surgeons, Radiologists, Nurse Specialists and any other professionals with an interest in Melanoma. It is a shame patients cannot attend because although a lot of the information is quiet technical, I am sure many would still like the opportunity.

This was the sixth year of the conference which was originally the brain child of Dr. Paul Donnellan UHG, but this year Dr.Derek Power from CUH , was Chairman and he opened the conference by welcoming all who were attending, and reminding us of how fast things were moving in the field of melanoma treatment.

First to speak was Dr Myles Smith from the Royal Marsden in London on the role of Surgery for Metastatic Melanoma in an era when drug therapy is considered the most effective treatment. He outlined many cases where surgery even in stage 4 advanced disease had made a difference to patient outcomes and it shouldn’t be discounted as a method of controlling spread of metastasis, in the right situation.

Dr Mary Laing from UHG is a consultant Dermatologist and she spoke about the advances in the early detection of melanoma and the Irish attitude towards sun exposure. When Irish patients are asked to identify themselves on the Fitzpatrick scale of skin types the majority fail to recognise which type they are often convincing themselves they are they type who tan, instead of the type, the majority of us actually are, which is pale skinned, burns easily and high risk of skin cancer.  Dr Laing uses a system not widely used in Ireland to reduce the number of unnecessary surgical removals of moles, it is called (RCM) Reflectance Confocal Microscopy this technique allows the dermatologist to exam down to cellular level for any changes that might be suspicious before removal of a mole, so it can prevent unnecessary removals and be used to keep close observation of a suspicious lesion. There were many questions on the application of this technology in a clinical setting and the cost of equipment which Dr Laing approximated at 150K. So not exorbitantly priced by any means, the problem however remains of staffing levels in the area of dermatology there are 4 dermatologist covering the west of Ireland at the moment according to Dr Laing the optimum cover would be gained from 11.  This situation is replicated throughout the country and leads me to wonder if vast sums are spent on early detection campaigns, how do the public actually access a dermatologist within an agreed time frame of course if there were guidelines available from NCCP for referral times for suspected melanomas it would be somewhere to start from, in the UK  guidelines from NICE( we often follow for other treatment pathways)  recommended time for a patient to be seen after visiting their GP is TWO weeks, because as we all know speed is of the essence when it comes to detection of early melanomas.  In Ireland it can take 6-8 weeks  to get an appointment even at a rapid access lesion clinic. You are relying on your GP’s referral letter and their often limited knowledge of melanoma to get you seen quickly. There is a lot of talk about the cost of systemic treatments with two new treatments refused this year due to costs. We cannot as a country refuse to provide patients with effective treatments at stage 3-4 when we have failed to provide enough staff to meet the demand to detect melanoma at early stage when a simple surgical procedure could have sufficed.

Next to speak was Dr. Josephine Barry Consultant Radiologist at CUH, on the role of the radiologists in staging and re-staging of advance melanoma. A question was asked from one of the attendees about the use of MRI’s for the detection of brain metastasis because they did not have access to them in their hospital and would CT suffice the answer was NO it is necessary to use MRI get a baseline image of the brain, and to exam any suspicion of brain Mets, again this question showed the urgent need for national guidelines. This is an area where NO Irish guidelines exist, Dr Barry called for national guidelines for follow-up and uniformity of treatment across the country. She discussed the use of CT and Sentinel Node Biopsy in patients stage 1B and above, she stated they should receive a brain MRI but also a CT of the neck Thorax and Abdomen to rule out the possibility of distant metastasis. Proper scanning is also crucial for the patient receiving immunotherapy treatment, it is crucial that they are scanned 2-3 times to be clear if the patient is progressing or it is simply a sign of tumour flare following treatment.

Following the coffee break it was time for me to speak on the Patients Perspective, I had a half an hour to speak the same as all the other speakers. That can seem a daunting length of time but once I had started to form my speech and slide presentation I realised I could probably have spoken for a lot longer, but that’s just me!! I have been told in the past I could talk for Ireland or I would speak to the stones on the road, I have actually been doing a lot of that on my long walks since my reoccurrence. I divided my speech into sections having been given some good advice at the MPNE workshop in Sweden last week on presentation from Simon Crompton  and Anna Wagstaff from cancerworld  , keep it short and snappy and get your three main points across, I hope I succeeded in at least getting the message of how important Emotional Support is to patients and the vital and unique role that Melanoma Support Ireland plays in that, now driven by the patients and carer’s for the patients and carer’s. I told my melanoma story never easy and as my oncologist was also sitting in the audience, they were also hearing my perspective of my treatment before and after I became their patient not something you get time to discuss in clinic normally, I always wonder how it is for the professionals to hear the other side of the story, the anxiety, the pain, the feeling of helplessness,the desperation for answers when often there are none to be had, the worry about accessing the best treatments they are trained not to get emotionally involved, but I was there to explain just what the emotional and physical toll of melanoma is to a patient. I also spoke about what I have being doing this year in terms of advocacy for our group, liasing with other organisations such as cancer trials Ireland and  melanomapatientnetworkeu.org I also got to inform them of an upcoming event for us in conjunction with Mariekeating.ie which will take place in February, it will be a Patient and Carer’s seminar aimed at giving information on treatments, and helping them to cope with advanced melanoma.

After me we had a presentation from Ms Claire Gorry of the NCPE which followed on nicely as I had spoken about the problems relating to reimbursement for treatments in Ireland. This is an area that the medical staff admitted a lack of knowledge of, Yes the HTA reimbursement process affects what they can prescribe but it’s not an area they have direct contact with in their working lives. Claire gave  a very detailed presentation which outlined the process and whats taken into consideration in the decisions reached by NCPE on recommending a reimbursement. It is a complex process, there is a lot of information available on their website and also you can check to see the status of a drug your waiting for information on. They also now encourage patient groups to make submissions for the approval of new treatments which Melanoma Support Ireland did twice this year.img_1551

Next up was Prof Christoph Hoeller-Medical Uni of Vienna, he spoke about the use of viruses in the management of melanoma his presentation focused on T-Vec how it is used and the advantages of using it for patients with in transit mets, this is a treatment that is not available at present in Ireland but is being used in other countries with good results. There was a lot of interest in how it is administered and it does seem to be a straight forward process. There would be some specialist training and facilities for correct storage of the vaccine required.

After lunch we had a presentation by Dr Brian Steadman from University hospital Southampton on the management of Ocular Melanoma. This disease is much rarer than skin melanoma but Ireland it seems has a higher incidence per capita than other countries with approx 15 cases per million. Irish patients with Ocular melanoma can be referred to Southampton for assessment and treatment where they have the specialist facilities to treat what is a complex disease, current treatments available there include Delcath and also SIRT which he considered a better option for patients with existing heart problems. He outlined some case history’s of Irish patients who have attended Southampton and it really did give an overall impression of the complexity of treating Ocular melanoma and for the patients the struggle to come to terms with it.

Next was Mr. Hojabr Kakavand of the RCSI and Melanoma institute of Australia spoke about the perceived idea that melanoma is an Australian cancer, yes it is true that they have very high rates due to high sun/uv exposure over their lifetime and an interesting fact that came to light was the googling habits of Australians as opposed to Europeans relating to melanoma, it seems Europeans think of melanoma as a summer issue and do most of their research on it during the summer months, but Australians research it on-line year round. That is a worrying concept to think that Europeans somehow think that melanoma will not effect you once the sun stops shining in the Autumn.

Dr. Jens Rauch Biochemist from UCD spoke about overcoming drug resistance in targeted therapy it is a global initiative that UCD are involved in researching. The research is focusing on the Ksri-Mek complex and trying to target the seemingly un-drugable RAS pathway they have made some progress on this by trying to target downstream PPI to inhibit RAS, it is vital work to help prolong the effectiveness of treatment, as the majority of patients eventually progress on Target Therapy even though initially it may work very well for them, trying to understand what switch turns on this resistance is key, they hope by solving the problem they can develop drugs to counteract that effect, prolonging patients lives even further.

Dr. Derek Power gave a very comprehensive presentation of What’s changed in 2016 in managing Advanced Melanoma, he gathered all the information from ASCO, ESMO, scientific papers and gave us a whistle-stop tour of the years advances in treatment, this year has really been more about the combination of existing therapies than new discoveries, there are some promising new treatments at early stages of development and in early phase trials but combinations of what we already have licensed have been the focus this year, of course all these developments are wonderful but you must have ACCESS for them to be of any benefit to Irish Patients, and at the moment we do not have that access to many new wonder drugs that they laud as our best hope at these big international conferences, as an Irish Patient it makes me angry listening to this data, that, I have heard presented time and time again this year but still we cannot access, because the HSE refuse to reimburse at submitted price, and the negotiations drag on as patients desperately hope they don’t progress and need them, or make treatment choices without all the options to hand,  In an ideal world all of the drug combinations Dr. Power spoke about would be available to me and all other Irish patients but we are not living in that world.

The final presentation of the day was from Ms. Shelia Talbot a Clinical Nurse Specialist from UHG her presentation was on Managing Toxicities of Immunotherapy and Targeted Therapies. This is an incredibly important subject and Ms. Talbot’s presentation showed the importance of a CNS yet again, as part of the Multi disciplinary team in charge of your care. A specialist nurse trained in communicating with patients and who has an ongoing relationship with them is one of the best placed members of the MDT to pick up on the early symptoms of an adverse effect. Some of the adverse effects experienced by patients whilst rare can be life treathing, and need urgent assessment, a good CNS has the trust of the patient and they should be able to contact her when need be. There is also the need for members of A & E departments to be trained in the treatment of these very specific adverse effects, which differ greatly from those experienced by cancer patients who receive treatments such as chemotherapy, the treatments melanoma patients are having are not in any way related to chemotherapy and they need to be treated specifically for the effects these drugs are known to cause. Of course as we have heard in other areas throughout the day there is a huge shortage of specalist CNS working with Melanoma Oncologists in Ireland so again we lose out on a piece vital to our care plan.

How did I feel after the day? I can see, and this is my own personal opinion that we have very good highly professional people working within our health system trying their best to provide a high standard of care for their patients with limited resources,but their hands are tied, they suffer from staffing levels, access to radiology, they are unable to prescribe to us some medications that can potentially prolong or save our lives, we don’t always have access to trials that are open in other countries, the patients are having to provide emotional support services for each other, our early detection and prevention programs are insufficiently organised and funded, and services in dermatology are underfunded and understaffed, for a patient advocate it is depressing and disheartening having to fight for services that should be in place but lack of investment in front line and support services in the HSE are all too apparent, it effects every patient in the country and at some stage every member of the public, a country’s ability to provide good public funded health care for its citizens is a measure of how a country values its citizens, as a melanoma patient I don’t feel valued, by my country.