Finished chemo/rads Aug 08, now Tamoxifen. Had breast clinic appointment 4 weeks ago, saw registrar, lumpiness in breast, she seemed sure was lymphoedema of the breast but ordered a mammo to check.
I was not sent an appointment and when I rang up they said the mammo facility was not available for 5 weeks while a new machine was installed and everyone trained. Urgent cases ie new primary patients were being sent to the local private hospital, the tests paid for by the PCT.
I phoned my BCN to let her know how women were being fobbed off, got no response. Rang radiography again, offered to go to NHS hospital in the next town (where I work anyway). No, they couldn’t do that. Phoned BCN again and said obviously I didn’t want to push in front of new primary patients but surely after those people I would be second priority, having had cancer and got lumpiness? She agreed and went to see the radiography dept to get me put to the top of the non-urgents. Still haven’t heard anything!
What should I do next?
Contact PALS and instigate a complaint?
Write to my breast consultant?
Phone my consultant’s secretary?
Pay for a mammo myself at the private hospital?
Tell the local paper they are delaying cancer tests like this?
Any ideas from people more familiar with the “system” would be welcomed
How about writing a letter to your local paper and copying it to everyone else; bcn, consultant’s secretary, consultant, PALS, etc - and maybe the Healthcare Commission, too?
Hi Louise,
I dont really have any suggestion but just wanted to wish you well. Really sorry to hear you are having problems with your mammo.
I dont tend to scout around the threads too much these days, ostrich mentality me thinks.
Thinking of you. Shonagh x
Yes, it’s a big step, getting the Press involved. Depends very much on what sort of person you are…don’t know if I’d be brave enough to do it, either.
Perhaps there is a way of phrasing a letter so that those involved realise that adverse publicity is a likely consequence if they don’t resolve the situation quickly.
How about something like:
‘…as you can see, copies of this letter have gone to X, Y and Z and I sincerely hope that your combined efforts will be sufficient to bring an end to this highly unsatisfactory situation. However, I do feel that I may have to take this issue further if I am not sent an appointment scheduled to take place on or before [insert date]. I look forward to hearing from you at your earliest convenience’
I would contact PALS - I know when my son was going to be tested for cystic fibrosis we were on edge waiting and nothing came through although it was supposed to be urgent. I contacted PALS via e-mail and within the day had a reply from a manager at the hospital and it was sorted from there with this manager keeping me informed and getting it sorted.
Thanks for all the advice. I did contact PALS. Although I got a fairly dismissive reply ie your mammo is just a routine part of your follow-up treatment blah blah blah, I think it was more than coincidence that 48 hours later a mammo appointment card popped through the post.
thanks for your good wishes