There seems to be a bit of interest...

... directed over here thanks to fellow bloggers.  I thought given this that I should give the full background.  This is a letter I wrote to a certain Irish radio personality who found it much less important than talking about washed up celebrities.  It was never read on air, but it should give the complete background. I wrote this just under a month ago.  This was before it emerged that even more women had been fucked over by the idiots at the HSE.  Biiter? Who me?

Dear "Radio Guy,"

 

When the breast cancer scandal hit the Midlands in the late summer I was as shocked as everyone else.  Appalled at the state of our health care system and outraged for these women who's lives had been turned upside down by the negligence of a disgraceful system. I still am.  I cannot imagine how it must feel to have the weight lifted off your shoulders after having that awful scare, only to find out months later that you do indeed have cancer.  The wasted months in which life-saving treatment could have been given and the increased chance of death because of the wait - absolutely atrocious!  Only today it's closer to home.

 

On September 19th I visited my GP because I was concerned about pain in my right breast and what appeared to be a yellow tinged discharge.  My GP thought it was an infection and prescribed antibiotics, but to be on the safe side, she referred me to the hospital in Tullamore for a breast ultrasound. 

 

I took the ultrasound request form to them the same day.  I was informed by the receptionist that they were no longer doing the scans in light of the recent scandal and that I could check with Mullingar or wait a week or two and check back with Tullamore.  I contacted Mullingar and was told there would be a few weeks wait, so I decided to wait the week and check back with Tullamore.  In that week I finished the course of antibiotics and the symptoms cleared up.  I assumed my GP had been correct that it was just an infection and didn't pursue it any further.

 

Four weeks ago the pain came back tenfold.  My right breast also feels different.  Not a lump, per se, but definite changes, something they warn you to watch for.  Then I noticed the discharge had come back, only this time was bloody. 

 

I immediately decided to pick up where I had left off and rang Tullamore about getting the scan.  I was informed they were still not doing them.  I rang Mullingar and was informed again that it would be a 3-4 week wait as a private patient.  They asked that I post the initial GP scan request to them which I did. 

 

I asked about the process in place and was informed that the request forms were run by a consultant before the scans were scheduled.  This seems to me to be a waste of both the consultant's time and the patients.  Why not just have the scan and send the results to him for interpretation?  Why should he have to look at the form, ok the scan, then have someone else perform the scan, send him the results and then interpret them?  Seems like an extremely inefficient system to me, although I suppose I should be used to that by now.

 

I waited to hear back from Mullingar.  The Monday before last my GP's office rang to say that Mullingar had sent the request form back to them with no explanation.  I was informed that it would be sent on to Port Laoise.  I have yet to hear anything.

 

I realise that there is a bit of a situation over there, but this is ridiculous.  Then we hear earlier this week that we have one of the highest mortality rates for breast cancer in Europe.  Is there any wonder?  Cancer prognosis is directly proportionate to how soon after detection treatment begins.  The earlier it is detected and treated, the better chance of survival and remission.  If women are waiting weeks or months before even having the chance of something being detected, then treatment is surely not started as soon as it could and should be.

 

"Radio Guy," the wait is killing me.  I have two young children and I cannot sleep at night because I fear the worst and what might happen to them and my husband.  I just can't get on with my day to day life until I know for sure.

 

The more I think about this, the more I know and realise I can't be alone.  There must be many other women all over the country in the exact same positions - their lives on hold in an agonizing wait.  Chances are it is a false alarm, indeed there can be many less grave explanations, but until you know for sure, it's a weight on your shoulders.  Then of course you can't help but wonder what if some of them, or myself even, have an advanced or aggressive form of the dreaded c-word?  We could be dead before the HSE get around to even giving us that initial screening.

 

What's more - when I finally have the scan and if they find something - I assume I would be referred for a biopsy or other further testing.  How much longer will that take before I see a diagnosis?  Weeks? Months? It's absolutely appalling and frankly, terrifying.  Then on the other hand, if we get the all clear, recent events would suggest we should still seek a second opinion.  It just doesn't end.

 

I don't wish to become a spokesperson or get involved in a press upheaval surrounding this.  In fact I would appreciate being kept strictly anonymous, but I do want to know if others are in the same situation.  I would love to hear from your listeners on this topic.  Are there more of us out there?  Is it just younger women like myself who are being treated in this manner, knowing that the risk is less makes us a lower priority? Is there anything we can do?  How much longer is this going to go on?

 

Thank you for listening "radio guy."  I hope you can get the message out there that there are still women suffering... waiting.  The situation may have been brought to the public's attention, but nothing has changed. 

 

It's a farce.  A farce that is toying with human lives.

 

Kind Regards,

Me

Comments

[Sam, Problemchildbride]

Here via Bock and very sorry to read of the shabby way you've been treated. The distress this must be causing you must be enormous.

[AvoidingLife]

Thanks so much Sam. Lots of publicity today... maybe something will be done, but I suspect there are lots of other women in just as bad a state with the statistics not so much on their sides. Very very sad!

[Eliza]

I'm here via Bock as well, and I'm quite sorry that you are having to deal with such incompetence. You have all my best wishes for a (good) diagnosis and a speedy recovery!

Eliza

[jen]

Hi AL, sorry to hear of your predicament and hope for the best. Can you go to the emergency room and tell them you are in intense pain and that you need a scan asap? Dont know if this is a viable option as I dont live in Ireland. Take care and best of luck.

[Limerick Gal]

Also here via Bock. Very sorry to hear about the way you've been treated.

I'll be following your blog with interest from now on - wishing you the best of luck with this!

[elly parker]

How about trying hospitals that are out of your normal area? Dublin area, etc? Would your insurance pay a portion of it if you went to one of the ultra-privates like Blackrock?

[Grannymar]

Call the out of hours service or go to ER and sit it out.

If you are fobbed off stop whoever is doing the fobbing and ask them to picture their, wife, mother or sister in your place and ask if that is how they would like them treated.

I did that with my husband 10 years ago and it certainly made the Consultant sit up and change his tune!

[Tim]

Hi almost 30 mom, here via Bock also. I am appalled at the treatment or complete lack of treatment you have recieved, whatever happened to the so called centres of excellence. I hope for you and your family that you get some help sooner than later. best of luck.

[Nora]

Hi AL,

Here via Bock ...

I'm so sorry to read your story. You must be scared silly - I know I would be, and the waiting is the worst part.

I've had a lot of dealings with hospitals and doctors, and my immediate reaction is to say to you, Get bolshie with them. Be difficult! You won't be popular, but it gets results and that's what matters. I've done it, and lived to tell the tale. Just don't take no for an answer and accept no fob-offs from anyone - especially non-medical staff, some of whom seem to think they are handmaidens and gatekeepers of the high priests. It won't be pleasant, but (hopefully) you'll be seen and get answers.

You're paying them, whether through taxes or privately -- they're not giving you charity. So get bolshie and don't apologise to anyone.

If you can manage it, go and park yourself in the nearest Casualty and refuse to leave until somebody sees you. Make phone calls, go back to your GP, do anything you have to, including making their lives impossible until you get action.

Best of luck!

[janie]

hi there via BifSniff. cant imagine how you're coping with such a dreadful situation. I'm 37 and had a lumpectamy two years ago and i find the annual mammogram check up a nightmare, luckily I'm clear but i know that the mind can be your worst enemy and that awful helpless feeling of being powerless is frightening.
On the positive side, if god forbid you do need treatment, it really is amazing what they can do today.I know, if they could just get on with it.
when I was dignosed I read a book Your life in your hands by Jane Plant and immeadiatly gave up ALL dairy, she claims that the hormones in dairy are for growing cows and cancer is a cell that cant stop growing, this is my simple way of understanding her scientific research, but it was enough for me to quit dairy and chicken, the same story more hormones in the chicken to speed up breast growth for the market.Anyway maybe you know all this and i dont mean to scaremonger .wishing you health and peace of mind.

[SeanR]

Here via Twenty Major,

I'm absolutely shocked - in light of what's going down in the Midlands - that you're being treated in such a scandalous way. It's so frustrating. When I was ill, I went with a GP note to the ER and was finally admitted to the cardiac unit, and then to the renal clinic. If I'd waited for an "assessment", I would probably be dead; now I just have to be a good boy and take my meds. Keep struggling on this!!

It seems to be the way women are ignored by health professionals; my mother has arthritis in her hip, and cannot get surgery because she cannot get a consultant assessment. Its just vicious and totally gendered.

Keep shouting and be as loud as possible. Good luck and keep well.

[Devin]

Hello there AL,

Here via Bock also and am thinking of you and your family tonight.I'm absolutely incandescent with rage at the criminal neglect you are being (un)treated with.
I have to agree with the previous posts advising you to get noisy.I really wish I could be there to shout with you.
They owe you.Demand it.There's too much at stake not to.

[Caro]

So sorry to hear about the treatment you're getting (or not, as it turns out). I would agree with Nora, you have to be pushy and not take no for an answer, it's the only way to get anywhere in this system, sadly.

Thinking of you, and best of luck.

[Brian]

Here via Twenty Major,

Sorry to hear about your situation and I sincerely hope it turns out of the best. Unfortunately, I am not shocked by your experience so far. My wife has recently been through the breast check process. Thankfully, she has got a clean bill of health. At every stage she was kept waiting. Even for the final consultation, she had to wait several hours in 3 separate crowded waiting rooms to see the consultant.
I would write what you wrote here to your local TDs and copy Mary Harney on it. At least she can't say sometime in the future that she didn't know...

[Mnuel]

I read about your situation on Green Ink Pen.....my heart goes out to you.....I'll be thinking of you.....

[PaddyAnglican]

Also via Bock - Hope you have good news for Christmas! How many more cases like yours will it take before somebody in power has the courage to admit the horrendous and sometimes irreversible damage that the basic administrative failings within the HSE causes. The only vested interest should be the proper and timely treatment of the sick.
Stephen

[nonny]

Hi I posted a comment yesterday but there must have been a problem with it. Anyway today on lunchtime Newstalk Eamon Keane talked of a woman who had number of issues but one was that she had to wait 5 months on a breast scan. Perhaps you could give him an e-mail if nothing else he might have a helpline or a point of contact for others in your position, as it was highlighted on his show i'm sure many others have contacted him. His e-mail is lunchtime@newstalk.ie

Really hope all goes well!

[Grannymar]

Call an Ambulance and get them to take you into hospital.

That way you WILL be seen and something will have to be done.

The Ambulance service keep records of the patients they deliver, then come back later to find out what treatment was required.

[Magicmatilda]

This is a Fucking disgrace. You must be terrified as anyone would be. What in Gods name are we all paying our taxes for? Really think about it what? Its about time the country went on strike. The whole country and march on the Dail. As far as I can see nobody is happy with the Health Service. I agree with everyone who says go and sit in A&E, it seems to be the only option.

[Gaye]

Hi, I am also here via Bock, and I am terribly sorry and horrified at the same time that you are going through this, and being treated by the system without care and attention it is "supposed to" give to its very own people. I hope that by the time they do the tests and scans, that it is not a life threatening situation but an easily treatable health scare and that you will be fine and live happy, long, healthy life sharing it with your loved ones.
My heart goes out to you and I wish I could do something more, but for now, it will be linking your story on my blog and telling people who'd listen about it.
Wishing you all the best,
Gaye

[steph]

Hi Al

Found you via Headrambles/Grandad

Firstly, I'm really sorry to hear of the hell you're going through. I'm not surprised to hear that you can't sleep. How can you possibly relax when you know you need help and it's being denied every direction you turn?

It may well be that your 'scare' will turn out to be innocent but unless/until that has been proved, you should continue to scream and shout until you get the attention you rightly deserve.

I'm sure you're probably aware of the recent sad case of the late Susie Long. The government were shamed into making an apology for the way the health service let Susie down but of course they waited until after her death to acknowledge this. I suggest you use Susie Long's case to highlight your own and embarrass the government into taking action to stop this happening again. I'm sorry but I didn't get to hear you on the Last Word so maybe I'm already behind the times on this?

I'm can't believe the way you've been treated and I've tried to imagine what I'd do in your circumstances. I've concluded that I'd present myself at the A&E Dept of a hospital specialising in breast cancer and refuse to leave until proper action is taken. If that doesn't work you could always claim to be suicidal!

My heart goes out to you. Keep on fighting - we're behind you all the way!

Regards,
Steph

[cavantucky]

I agree with 'go and sit in A&E', but I'd do it with a journalist and BIG camera: local papers can be very good to get behind causes (our support group owes them a lot!)

Try national papers too, you never know. With the sort of attention you've gathered here, why not?! There are a lot of people behind you now, and that will make the media notice.

Whether newspaper or radio, they're looking for soundbites and quotes, so say it plain and short and loud when you get to A&E, something like: "I'm in pain and I'm too frightened to sleep, waiting for an appointment for X months; I need help RIGHT NOW."

I have an appointment now for January (something entirely different) but I had to pitch a big loud tantrum to get it after being put off for months. I've been thinking of you every day since I first read about your wait: good luck and keep fighting.

Fight hard.

[marlayna]

Hello,
I'm here via Hangar Queen, and I am now very upset on your behalf. You have a load of great suggestions above from people more familiar with your country's systems, but please know there is a mom of four in Texas pulling for you.