Hi guys
As some of you may know, I was dx in Oct 07 with grade 3 bc. I’ve just finished chemo on Tuesday.
Because I’m 30, my sister is 24 and we are really worried that she now has an increased risk of bc. So she saw a genetic counselor in Jan and she received a letter referring. The genetics put her at high risk of bc and 1 in 3 of getting it.
Our family is obviously concerned about this whole thing and she was very nervous going to the clinic, so I went along with her this morning for moral support. We thought the appointment was for early screening, which was indicated in the appointment letter.
when she came out she was in tears and was extremely upset. She said he had made her feel as if she was making a nuisance out of herself and shouldn’t have been at the clinic. You can imagine that I was livid and I asked to speak to him so he was aware of how she felt.
I told him that she felt that her concerns weren’t being taken seriously and that she had been treated flippantly. He denied this, but he was very aloof and even I felt stupid sitting there listening to him drone on about how he has set up that clinic and that he took patients very seriously. I thought he was a jerk and my letter of complaint in currently being formulated.
So, am I being over emotional, or does anyone else have any experience of (post edited by moderated) and is he always so flippant. I mean, my sister was clearly anxious about the whole thing and he gave her a breast exam and told her that she needn’t be there - what about a bit of sensitivity?
Rant over…
Thanks for reading
Ang xx
Hi
No i dont think your being over emotional and i think you are doing the right thing. Its doc like that who dont take paitents seriously and then apologise for it later not having done anything sooner which isnt fair.
When i got dx last year my best firend got very worried and went to her doctor asking to be screened and they refused her, she then gave then an earful and only after that they accepted. I know they have protocols but i think they need to be changed to cater for these situations.
I havent had a good run with my onc and have now transfered to someone else, when i stressed my concerns his answer was ‘would you like to transfer to another doctor?’ i was gobsmacked just showed that he wasnt dedicated in the first place.
Anyway i hope you get an offical apology, good luck.
H
xx
Thanks H
I think it’s really important that we remember that NHS staff are supposed to be doing the best for us. If they’re not then we should have the right to complain, we would happily complain about any other service we didin’t feel was up to scratch.
grrrrrrrrrrrrr
When I was diagnosed my older sister did the same as your sister has done. She was treated very well at the Western General in Edinburgh - she got all the information and teseting she wanted. So yes I would complain - but I would do it by asking for a referral elsewhere.
Geraldine
Ang
That is outragious!!!
Who was it you delt with? Was it the genetic counsellor or doctor? I have had lots of rubbish doctors!
I was contacted by the genetics people at Nottingham Breast Institute as they saw on my medical records that my Aunt died of Ovarian cancer before 50 and my sister died last year of bc age 35.
The genetic counsellor was a bit rubbish but nice enough but the surgeon and breast care nurse were excellent! I avoided seeing my GP until after my op! I don’t think half of them even know what Brac1 or brac2 are!
I really hope she manages to get the proper advice and support she needs and that the person she spoke to gets into trouble big time!!
Take Care and best wishes
Katie xx
I know this site hasnt been wrote on for a while,just in case anyone is still reading it i will add my comments.Mum dx 15 yrs ago when she was 45 me and sis only young not much to worry about so we thought.Mum started the whole thing off every year after that 1 person was dx and every time they were getting younger.Me and sis went to genetic clinic very nasty lady sat their behind a desk read some bumf off a piece of paper and said we were more likely to get run over by a bus than get BC.Well guess what my bus did hit me 3 yrs ago not going into details as outcome is great.I have the Braca one gene.Sis went back to clinic and asked for some basic follow up treatment or anything to put her mind at rest.The only thing they could give her was the genetic test which she wasnt ready to have but had it anyway.She has not got the gene.The other thing that got me was the breast care nurse 1 call after dx and 1 call after surgery then gone into hybernation i know i could phone her but their must be some follow up procedure they must follow.Anyway thats my moan for today if anyone else has a gripe let me know.
lopez
Juddiv
I have had a lot of bother with Yorkhill (West of Scotland Regioan Genetics Service) in Glasgow, they are a complete joke (this is my personal opinion), I requested earleir screening and they have refused point blank, I made an offical complaint against them coz they treated me like a pice of dirt Ive never seen anything like it in the NHS, the counsellor was a complete and utter nervous wreck, at one stage I was going to run out to a shop to get her some brandy to calm her down so I could follow what she was muttering on about!!.
My gran was adopted and we arent that sure about the family history but they maintained that I dont need screeing until 50!! (mum was 48 when she was diagnosed) . Ive since seen another doctor who was horrified at what they told me originally, he was very worried about what they said to me, and he has decide d that I should start earler screening at 40.
My advice is go to the Citizens Advice Bureaux,if your going to make a complaint and get a second opinion.
Natalie
Natalie
Good for you for not letting them fob you off. I was fobbed off and in the end I paid with my flesh. NICE Guideline 41 was NOT followed …