Launch by Irish College of General Practitioners

HI Ladies, as you know the late Daisies and I and many more have raised issues around Ovarian Cancer Diagnosis with Irish Cancer Society, Our Caretaker Minister for Health and Irish College of General Practitioners on the lines that early diagnosis leads to better prognosis.  So last week I received an invitation to attend the launch of a survey of gps on Acess to Diagnostics to Detect Cancer.   So in honour of Daisies, yesterday I attended the launch of this report.   The report in general says that public patients do not have as rapid access as private patients.  What worried me most was that the graph showed that the longer waiting list around the country is for gynae referrals. A gp who organised the survey spoke as did a researcher and a bowel Cancer Patient.    There was a very short time for questions and answers so I asked a question, I commented on the fact that as an OC patients, I was extremely concerned at the waiting times for gynae referral.  However I feel I was fobbed off and was told there were more reasons for gynae referral than Ovarian Cancer.  Daisies would have sorted this guy fast and quick.   Another issue was that gps stated that once they referred a patient to a hospital for diagnostics, there was very little feedback from the Consultant.  In fairness I have never had that issue.   Gps want rapid access to tests more locally and better feed back from Consultants and hospitals.  GPs want better awareness of Cancer symptoms from their patients.  They want radiographers and lab techs to work longer hours to improve access for patients.  All in all it is an interesting report and can be downloaded from the Irish Cancer Society Website.   I gather that the Consultants are now meeting to discuss this issue because they are so overworked at the moment they will not be able to cope with more patients.  Any one attending a Clinic of any kind will agree with this.  Obviously what is needed is to ensure that the money going into the HSE is fed to the right areas.  I tried to do my bit but as someone pointed out that my question has to go on record as it was an official event.    

[TrishLey]

 Thank you for representing us and reporting back. I think your question was very relevant thank you for asking it, I'm glad it is now on the record. Xx best wishes Trish 

[thesilent1]

Hi Suzuki, having dealt with MPs and MLAs here in NI myself, they are all very good at going on the defensive and not actually giving an answer.  Well done for going along and having the courage to speak up at this event.  I m sure Daisies would have been proud of you. Ann xo

[Hidden in reply to thesilent1]

Yes you have said it, it was the gp who organised the survey from the Irish College of General Practitioners down here who gave me that answer and you are totally correct, it was defensive. Daisies would have floored him no doubt about that at all.  They did invite me  but I felt they didnt actually expect me to turn up tough. !!! I was interviewed by UTV New but the clip wasnt shown.  I am happier it wasnt really as I went on my way I was kind of annoyed with myself,    

[Connie8]

Well done Suzuki .thank you for representing us all there and letting them hear out voice . Daisies would be b proud of you .

[IrishMollyO]

Hi Suzuki

I was also invited to attend this meeting but unfortunately was unable to go. Yesterday I got an email from them with a copy of the report and had a conversation by email about the situation . I am glad you got to go and well done for speaking up. The more noise we make the better the response we will get. I have complained before to the ICS about the lack of publicity given to OC and PPC. I also said yesterday on one of my emails that I hoped they would use Ovarian Cancer day to redress this situation and I was promised they would. Keep it up Suzuki ! 

XXX

[Hidden in reply to IrishMollyO]

Hi Molly O, I have just emailed a thank you to the Advocacy Officer ICS and informed him that I wasnt happy with the answer I received from the ICOGP  I also said more oncologists and medicals teams are needed in hospitals as it is and it is up to ICS and ICOGPs to put pressure on our acting Minister for funding.   I also mentioned that the Centres of Excellence are no longer excellent and that Oncology was very short staffed and chemo infusion pumps museum pieces in comparison to UK.   To be honest, I felt a sense of discomfort from the ICS in the room.    Nothing like the welcome and openess we get at Ovacare Coffee Mornings or Patient Days.   Was it just a pr exercise?

[IrishMollyO in reply to Hidden]

Wow Suzuki. You really did sock it to them fair play to you. I think the lack of facilities goes much higher than that as Dr OReilly suggested on Sat. He did say that Anglo Irish Bank was the beginning. I don't need to tell you that the carry on at the moment with weeks long discussion about water instead of concentrating on the dilapidated health service and the homeless along with lack of mental health services , makes me want to scream STOP. I thought I voted these people out and now I see they are back to haunt me ! I give up . Keep up the good work Suzuki . Take care 

XXX

[Hidden]

Thanks Molly O so we missed a chance to meet up again that is twice in one week!!  I have also complained to ICS and I know Daisies and a few more have done so,  Thinking about it, it was a general report on access to diagnostics and I agree with the Nation Cancer Control Programme who was represented there that it didnt include urgent referrals. If as Dr Osborne who is Chairperson of the ICGP that the gynae grap I referred to included referrals other than suspected OC, how is he to know who has this diagnosis until it is confirmed by a gynae team.  That is the whole point.  Any of those waiting could have cervical, womb cancer or OC besides the less worrying complaints.    I didnt get a chance to say about OC awareness but was interviewed outside by UTV but clip wasnt shown.   Maybe that clip might be used for OC awareness you never know?   I will email them to thank them for the invite and ask that question.   By the way it starting a huge hail storm walking back towards Stephens Green so went in and got a trim in the Centre while the shower went on.  Guess what, the hairdresser was a Cork lady living and working in Dublin.

[IrishMollyO]

I just read your second post now Suzuki . Again I am glad you were there to ask the searching questions. Never mind if you rattled a few people . It will stay in their minds and make them think. Let me know if UTV will be showing the clip. When I was at ICS conference in Aviva last year I was approached by a reporter from the Dail Mail to give an interview because of a question I asked about lack of research into rare cancers. I didn't want to at the time but she gave me her number in case I ever want to raise an issue. Anyway Suzuki we will fight on . I am sad today after finding out that a dear elderly friend died 3weeks ago and I only found out by looking at RIP.ie.  I have been ringing her every second day for weeks and just thought her phone was broken or lost. She is in Dublin and before I came to mind mother I delivered her paper  most days and we always had a lovely chat and a cup of coffee. Just as I stopped crying I got a phone call from the hospital I am being referred to giving me an appointmen the week after next. I would like to think that she put in a good word for me up there ! 

Take care

XXX

[Hidden]

Hi Molly O what a way to find out about your friend, of course you must be upset.   But as you said, she has sorted you on her way.  I felt like that about Daisies and the Launch on Tuesday that she put a word in there for me somewhere.   I thought the clip was going to be used Tues night but it wasnt in fact so it may never be used.  Not to worry, I think that I did ask a good question and one that upset people a bit.   Havent got a reply yet from ICS and wont either but that shows more about them than about me

[IrishMollyO]

Suzuki. I like to think when we are rocking the boat we are making waves ! Excuse the very bad pun. I do think the hard questions will be noted and remembered so don't you worry. I am sure you will be discussed at some meeting that matters to all of us. Keep on rocking that boat !

XXX

[annieH1]

I agree with all the other girls on here Suzuki.Well done and thanks for representing us.Its just so pitiful that we have to fight for our entitlements at the most vulnerable time of our lives.The government and commissions should hang their heads in shame.xx

[Hidden]

Yes I agree, and I think the ICS and the ICOGP should also do the same.   They dont know what it is like to be a Cancer  patient.  In  reality what would we all do without Ovacare and Ovacome, with this forum, and support at patient events both in UK and Ireland.   The Prof last week said patient Advocacy was a good thing and he was aware that some of us had made noise and that is also needed  so we will keep making noise. 

[Caroles1]

Hi Suzuki,

Well done for doing your best and in the memory of Daisies any support and publicity of OC in Ireland or Uk can only be a good thing, there is so much ignorance in all factions, it is an under publicised area of Cancer,so anything any of us can do to make all that need to know is a good thing,

Best wishes,

Carole xx

[Hidden]

Yes I agree more awareness and publicity is needed and if the Irish Cancer Society are slow to join in, we have to be more persistent with them.  The ICOGP is a name for the gp union here, ie the irish college of general practitioners.   We would all really be lost without Ovacome and Ovacare and Health Unlocked,

[marymarcy]

Well done Joan. Hope you're keeping well. X

[Hidden]

HI marymarcy, I am back from my sons wedding in Kilkenny and reception at Clonmel Park.  It was a lovely time and a lovely day.   Tears were streaming as I felt I was so grateful to be there on his special day.   I think the co celebrant thought I had bad news, I had to borrow tissues. But I pulled myself together and enjoyed it all.  Great to meet old friends I hadnt seen in a bit.   The weather was cool but reasonable and the hotel was just fabulous