Should I complain ?
Should I complain ? Hello to everyone
If any of you have seen my previous posts(mostly in the family history forums), Ive been have some problems with my local genetic medicne clinic, basically, I dont trust them, when Ioriginally attended in 2004 they told me I wasnt at risk (my mum was diagnosed at age 48), problem is we’re not sure about family history, my grandmother was adopted at birth, their trying to tell me that my aunts would have had it too, this isnt always the case though, as it can dot around a family, they also tell me that as my mother was over 40 there is no increased risk, ive read if ur mother is under 50 there is a risk, Ive also been told that NICE dont recommend screening under 40’s (Im 25 at the moemnt and want to be put on the list at age 30), I live in Scotland and NICE dont have any authority up here, its the Scottish Executive and Medicines Consortium that set out the rules for NHS Scotland.
I wrote to them in November 2005, as I wasnt happy about what I had been told, I had genuine concerns about what I was told. What I recieved back was a 2 page rant about how breast screening can cause breast cancer and basically I can ask my GP for a private mammogram. Whats the difference apart from me having to pay ?? I showed the letter to a few friends and they where of the opinion that it was written in a way that would frighten me.
So I wrote back to them at the beginning of January, havent heard a peep out of them, should I go down NHS complaints procedure ? I dont know what to do now??? Help anyone ever been in the postion???
Sharleen
Sharleen I’m sure I’ve read somewhere that if your mother is diagnosed before the age of 50, you would be normally be screened from 10 years younger than she was at the time - 38 in your case. If you opt to have a private mammogram every so often, the responsibility will be yours if you later develop breast cancer and this is thought to be a possible cause.
Before you make a complaint, I would check with someone on the Breast Cancer Care helpline, or e-mail the nurse via the site, to establish whether or not you have legitimate grounds for complaint, because if my theory is correct, they are following an established procedure and you might not have.
Ive heard this too Ive heard that theory of screening 10 years before you mother was diagnosed too, but Ive never seen anything written about it, theres so many different theories going around, you just dont know who or what to believe.
Im more angry at the fact that they havent replied to my second letter (which was full of very awkward questions), plus Id informed them of 6 people on my dads side who have all died of various cancers (their all aunts and uncles of his plus 2 of my dads cousins on the same side with breast cancer, one is her 40’s one in her 70’s) one wonders if they are trying to bury their head in the sand in hope that Ill go away. I did try to contact breakthrough but they dont give out advic eon these matters. WIll BCC???
Yes ask for advice The BCC helpline is really helpful…have only heard good reports. Also Cancer Bacup have an excellent helpline which I have used.
Sharleen…I can well imagine your frustration if you feel you have not been listened to. Unfortunately not all medics have good communciation skills. Do try calling one fo the hleplines to talk you through the issues.
I would just say to you that mammograms aren’t always the answer…young women often have dense tissue and cancer doesn’t show up…this is not to panic you but to reassure you that the decision you’ve been given may well have been made with the best clinicnal intentions.
Very best wishes
Jane
Complain to your M.P. Complaints about maladministration in public authorities (which include unreasonable delay in responding to correspondence) should be directed to a Member of Parliament. A letter from an M.P. has a wonderful way of shaking things up.
Write to them one further time, with a copy of your second letter, saying you are still waiting for a reply, that they will surely understand how anxious you are on the subject given your special circumstances, and asking for a reply by X date (2 weeks thereafter). If you still get no reply by X date, forward the correspondence to your M.P. with a request that s/he helps you to obtain a response.
May write to MSP Yeah I was thinking about writing to them again coz Im starting to wonder could it have got lost in the post , I posted it on 4th January
In the letter I’ll ask if they intend on making a response, if I dont get a response I’ll contact my MSP, MP’s dont deal with Health in Scotland, its a ‘devolved issue’.
If anyone sees any literature about being screened 10 years before I wonder if you’d be kind enough to let me know.
Thanks
Sharleen
Posted letter I posted my letter on Saturaday, 4 weeks since I posted my last letter to them, Ill let you all know how I get on.
Sharleen
Sharleen Haven’t got anything in writing but when I was diagnosed last April aged 49, I asked my surgeon about the implications for my 19 year old daughter. She said as there was no other BC in the family, she should not have to worry until she was 39 when she should be screened
K
More confusing by the minute… This gets more confusing by the minute…
I want names of NHS regions that are giving out this advice. If you have been told “the 10 years before thing” would you all be kind enough to post ur NHS region on here becasue Im gonna complie a list and pass it onto this genetics mob ( for want of a better word)
Many thanks
Sharleen
Sharleen I live in Cheshire as does my daughter, but diferent health authorities.
I was dx with primary at 47 and secondaries 11 months later. My daughter (30 this year) spoke to her GP and he is organising yearly examinations in the surgery and mammograms every two years as he feels she is high risk.
I am adopted therefore there is no family history known, I’m not sure if that has anything to do with his decision, I can find out though.
Ruth xx
Quackers Please could you, it would be most helpful.
Sharleen
family history Dear Sharleen,
It might be worth looking at the NICE guidelines which are on the NICE website. They are fairly new and they should be the ‘gold standard’ advice I think. However, I have looked at them to try to work out what to advise my younger sisters and I must say they are not straightforward! But they might help you. As far as I can recall the ‘have a mammogram 10 years before your relative developed breast cancer’ advice is not included in the NICE guidelines.
I think the truth is there is a lot of uncertainty about how to deal with people with a positive family history of breast cancer. My 3 sisters all received different advice in London, Devon and Sydney.
Good luck with everything.
Rowena
NICE guidelines— Sorry Sharleen, just reread your post and realised you live in Scotland and you mention that NICE guidelines don’t apply.
Small moan about the new site layout - it is impossible to check what people have written once you have started to do your own post. You could do this on the old forum site.
Rowena
NICE guidelines Yeah, NICE dont have any authority in Scotland (thankfully??) but it didnt stop genetic medicine quoting what the guidelines are supposed to say " Even in Asymptomatic women mammograms are not recommended"
Please keep your NHS regions coming in because I want a nice list to present to those genetic folk.
Thanks
Sharleen
Sharleen I’ve spoken to my daughter, she will be seeing her GP next week at baby clinic so will ask him then about his decisions and whether it’s general practice and how much my lack of family history has to do with it. Will let you know.
Ruth xx
Chelmsford, Essex Sharlene, I am 36 and was diagnosed at xmas and am the only one in my family so far. My mum has regular mammograms as she is over 50 now and so far she is ok. When i asked at the clinic about my sisters i was told that as i was the only one in the family then nobody was at any higher risk than normal but routinely they will offer my sisters mammograms from the age of 40.
Although we are always asked about family history, one piece of literature i had come across (cant for the life of me remember what it is now) said that its actually only mothers, daughters or sisters that are at risk and that having a grandmother or aunty or niece etc doesnt count…but when you hear of people who have a mum, 3 aunties, grandmother all in same family being diagnosed then surely there is a link beyond immediate family.
Personally, when they tell us it is the biggest cancer killer amongst women and that over 41,000 are being diagnosed each year in the UK then surely just one link in the family should prompt for mammograms asap…even if they are not yearly…but just now and again to put young people’s minds at rest as its very worrying…but as usual it all seems to be about cost and statistics…the stress that women go through when this happens is not taken into account is it.
~Good Luck with everything
Janine.x
Couldnt agree more I couldnt agree more, these peple dont have the faintest clue what we go through, sometimes I wonder if any of them have ever set foot in an oncology environment, especially the chemo wards which I found quite hard going. Basically they just dont care, we’re just a statistic to them.
Ive been searching all over about this link with mother, they say because my mother was over 40 theres no risk but Ive read if your mother is under 50 there is a risk.
Who knows…
Sharleen
14 days up tommorow Well the 14 days is nearly up (tommorrow) and theres been no response from “my good friends” ( I say that with a hint of sarcasm, lol!)at the genetic medicine unit, do they have something to hide, one wonders ??? Or is this just plain ignorance. This shows just how concerned these people are.
Sorry for the rant
Sharleen
Recieved a letter (posted in genetics forum) Ive also posted this in the genetics forum Just to let you all know that
recieved a letter from a consultant who is the head of the genetic service saying that their genetics associate tried to reassure me and they will not be putting me on the list as theres no risk to me. It said to contact them sometime and see if anything has changed. Its a really cheeky and dismissive letter , makes no mention of all the questions that I have asked. I had also told them about two of my dads cousins, one was in her 40’s and one was in her 70’s when they where diagnosed, said that they are too ‘distant’ also told them of my grans two brothers who had liver and brain cancer and her sister who had bowel cancer, my grandfather (on my dads side) whose two brothers both had tumours on their lungs, this has been all discounted.
What now ???
Sharleen