Last year when I originally went to my GP with a small lump in my breast I was told it was nothing but fatty tissue and why was I so worried. I told her I was worried because my mother died of cancer when I was 19 and there was a history of cancer in my family. Might as well been talking to a brick wall!!
Well I did go away for quite a few months and lump carried on getting bigger and bigger and like a fool I did nothing. Just before xmas I phoned and spoke to one of the counsellors on the Breastcare helpline best thing i ever did went bsck and saw different Dr in middle of Jan within 3 weeks I had started chemo and all the s**t that goes with it.
Ah Ayla i think this happens much more than it should.
I had to go back 3 times over a span of nine months whilst my lump went from a pea to a satsuma. As i was breast feeding they all said it was hormonal but it took me making a fuss about how big it was to finally get referred. I start chemo on thursday after havingn a WLE.
I thought about complaining but felt what would i gain?
Nothing i would think but it does make you mad.
X
Hi
I think you should complain - for the sake of other people. It’s horrible to have to make a fuss (especially when you’re having treatment) but otherwise the GP won’t improve.
I would complain - I complained about the “breast specialist” who misdiagnosed me, for the sake of others who come after me. Some doctors are far too dismisive of our concerns.
Yes, complain otherwise they will carry on doing it.
My complaint went to the GP, then the practice manager then the Healthcare Commission and now with the PHSO.
There are FAR TOO MANY delayed diagnoses and women being fobbed off and unless WE complain then nothing will get done. We are obligated to ensure that this doesn’t happen to anyone else. They are playing fast and loose with our lives and it has happened twice to me now - it won’t happen a third time becuase I am determined to follow this through, I don’t care how many cages are rattled, they NEED to understand and ACT.
There is at least 1 lady on this site who took her complaint all the way to court and won - the so-called specialist was then put under supervision for 2 years and her prognosis, as a result of his inaction, was very poor and her life will be shortened as a direct result of his ineptitude.
End of.
thank you ladies for your replies,
Deep down I know I should complain, to be truthfull I have been scared to! stupid I know, I shall do the right thing, so maybe next time she will not be so dismissive of her patients and maybe someone else will not have to go through this as well.
Hi Ayla
Thank you so much for starting this thread and thank you to Regina for being so forceful in you correct approach to this. I too was fobbed off 3 times after presenting with intense itchiness in the breast and strange sensations. Was originally given anti fungal cream and next appt, told by doc (female!) that left breast was bigger and lumpier than right but probably just needed bigger bra! 7 months later when I had hard itchy patch around nipple and was really worried, I went back a third time and was referred ‘non urgent’ for a mamo. Result was the dreaded M op + recon after finding widespread (10cm) area of DCIS which later started to become invasive. I’ve been procrastinating whether or not to take this further and have been pretty sure I will. Now I DEFINATELY will!
Lots of love xx
PS: My surgeon was 100% superstar so can’t complain there.
I had a similar experience. My young lady GP fobbed me off from August to December last year then eventually referred me to the breast clinic for peace of mind. Turned out I had a 3.5cm tumour in there. Luckily it hadn’t spread and I was so grateful for that I never complained. I felt partly responsible as I had gone away quite happily having been told it was nothing, as it was what I wanted to hear. When I was diagnosed she was very upset and apologetic so I’m fairly certain she won’t make the same mistake again! Other than that I don’t see what I’d get out of complaining really although my mum still keeps saying I should.
I had a similar experience 3 years ago. A female GP at my former practice told me the lump in my breast was a cyst, commenting “Oh is n’t it small, just like a petit poi”. A further visit to a second GP at the same practice had him agreeing with his colleague but agreeing to refer me to the breast clinic because I insisted. I was n’t put through as an urgent referral and waited 6 weeks for an appointment. I was diagnosed with 2 grade 2 tumours and DCIS over an area measuring 7 centimetres. The largest tumour was 1.5 cm. I waited 4 weeks for a diagnosis and prognosis. The realisation before I got my results, that I might die was hideous. I complained and my former practice fell in line with the NICE guidelines on referring women to the breast clinic. I will never forgive either of those GPs and I have since changed practice. My complaint did make a difference. I think they were so grateful that I did n’t take legal action that they would have done anything. Their indifference was unforgiveable. I have no doubt that if I had n’t pushed, I’d be dead.
Geraldine
Don’t know if this is the same.
I was recalled back after a routine mammogram in 2004 and had the usual several mammo’s then i was given an ultra sound, after being there for about 4 hours i was told it was fatty tissue.
Then 3yrs later when on my other routine mammo i was called back again, and guess what, i had an aggressive grade 3 triple negative cancer in the excact spot where they were concerned 3 yrs earlier. and it had spread to my lymph nodes.
They tried to palm me off varies excuses but at the time your head is all over the place when you hear you have BC.
Hi Ladies also misdiagnosed and breast aware so kept going back under going treatment at mo full surgery and lymps chemo and rads and I will complain when Im strong enough I dont want this still happening when my daughter is growing up it has to stop !!!
Lisa
Yes complain - IT MIGHT make a difference.
I requested screnning due to family history was refused it and now there is a full invetigation going on because I pursued it. I pursued because they tried to fob me off and the GP said he would do exactly the same thing to the next woman - he didn’t learn and nor did a few others.
A delayed diagnosis of months is highly likely to make a difference to the number of nodes involved, to the stage of tumours and to the size of them so we should not be fobbed off and we should be given the benefit of the doubt i.e. caution instead of playing God with our lives.
If you do NOT complain then it will keep happening, they won’t change their mindset, they won’t change procedures and they won’t learn and if we can do nothing else about “our lot” then we can surely try and stop it happening to other women.
When I tried to get my GP to understand, he was unrepentant. When I asked him to raise awareness of family cancers by putting a small A4 poster on a noticeboard he told me he didn’t want to make more work for the practice.
Nuff said …
I would like to ask if anyone at BCC is taking notice of how many women have reason to complain about their breast cancer care. I realise that being a four years misdiagnosed lady (GP refused me further investigation three times over a four year period) I have an added interest in such matters. However, I have noticed an increasing amount of complaints on this website which I am finding very concerning.
With regards to should you complain: if you have the strength I would strongly urge you to do so. Nothing will change if you don’t and I’m not sure how long it will take to change things if you do but at least there is a chance.
Good luck.
Jeannie
The only way change will come about is if someone raises enough awareness. I don’t see it as complaining as such; just challenging the current systems and making the doctors etc justify their actions. There is nothing wrong with this and you shouldn’t feel that you are in any way being confrontational. If they feel that they acted correctly, then you will get an explanation of why they did what they did and if not, they will hopefully change tact. It won’t bring back you health, unfortunately, but will make someone sit up and think.
Challenging the current systems is a very good way to put it. Another way to think of it is educational.
The problem for me has been the denial within the system and the closing of the ranks is now a term I fully understand. I can only hope they have changed tact but I would be the last person to be told if they have. GPs are very well protected by their insurance company and anyone travelling down this road will know how difficult it is. In fact, almost impossible. Hopefully, I’ve ruffled a few feathers along the way.
Jeannie
Hi Jeannie
I think if you set out to prove that a GP or hospital doctor has been negligent, it could be difficult. As you say, the “closing of ranks” and/or hiding behind very thin veneers of what may be classified as acceptable practice is very hard to break down. However, even if one person who feels that their doctor or the system has let them down badly, should voice their concerns. And if by doing so, someone takes notice or even reflects on how things could have been done differently, then their efforts are well worth it. All of us, including doctors are human and we make mistakes. The only way we learn is to look back on what went wrong and try again. Please let others know if you feel you have not been treated appropriately.
Dear Cathy
I completely agree with what you say with regards to people voicing their concerns. Most changes come about by being “evidence based” and if we don’t complain there would be no evidence. My four year misdiagnosis led me down the complaints route, Ombudsman and the General Medical Council. I got nowhere with any of these organisations despite it been very clear to me that my GP was in the wrong. My main reason for going down these routes was that it didn’t cost any money. I have now taken my case to law. I cannot say too much here as my case is still ongoing. However, things are going much better and I already have two positive reports behind me. Therefore, in effect what this means is that the free system is bureaucratic and almost unworkable. Fairness and justice get lost.
My GP made the same mistake three times. I therefore feel it wasn’t a mistake but lack of training. I have questioned what training GPs receive in relation to breast cancer but have never had a successful answer. It does appear that workshops/seminars etc are set up within Health Boards but these are not compulsory. My Practice told me they do not see a lot of breast cancer. I have since been told by BCC and Macmillan that an average GP will only see approximately one case per year - my Practice was very rural and may well have seen less. Had I know that I was putting my breast cancer concerns into the hands of a GP who may not have updated her skills on breast cancer in her time of practise and had not seen a lot of breast cancer in her time, I may have taken a very different approach. The general public’s perception is that with so much breast cancer around you automatically think a GP would see a lot of breast cancer but this is not so. It’s time the system for referral was much more accessible and if GPs are to remain the gatekeepers, they need to listen to the patient and refer any woman who shows any of the symptoms (not just the ones mentioned in the Guidelines) that are mentioned in breast cancer awareness leaflets etc and not play God with our lives. I will campaign for as long as I am able to make things better for those that come after me.
Thanks for reading.
Jeannie
Well said Jeannie.
Hi Jeannie
You have really had a tough time of it. It must be so frustrating to have got nowhere with the official routes of complaint, even though you probably guessed from the outset that would happen.
I totally agree about the dangers of having GP’s as the gatekeeper to specialists. They are only “general” practitioners and as such are good for dealing with common and acute conditions, especially those that require a prescription. I often wonder what a GP would actually do if you took their prescriptions pads away from them (sorry, being very cynical). But when it comes to something they are not sure about, they should seek specialist advice. We all have horror stories to tell about misdiagnosis. My son, when a baby was ill for weeks before I insisted he saw a paediatrician who discovered a tumour the size of a grapefruit on his kidney. He now is 17 but if I hadnt been so pushy, God knows what the outcome would be.
Within dentistry, my profession, if a patient presents with anything unusual that has been there for more than a couple of weeks, we always refer - no exceptions and if we suspect malignancy, they are seen by the specialist within a week. So maybe the problem with GP lies with the current system which seems to frown on those who seek specialist advice.
Good luck with your case. I so admire people like you who fight to be heard. It will make a difference, maybe not an obvious one, but someone will think twice.
Good luck
Cathy