"The next stage in my mum's gynaecological care"

About: Royal Infirmary of Edinburgh at Little France / Gynaecology

(as a relative),

I don't want to go over the whole back story again about 16 months of letters between the GP and the consultant gynaecologist, waits, medication changes, and being fobbed off by the gynaecology department at the RIE. At last, someone has taken ownership of this case but far too late.

Turns out that my mum probably has a uterine sarcoma - a very rare and pretty aggressive form of cancer. Lots of tests were carried out (see previous post), but almost all of them were requested by the GP. I reckon that even though my mum is 85 and has had a good life, she at least had a right to be seen by gynaecologist before April 2014 (symptoms started in March 2013).

I would like answers to a number of questions:

1. Why was my mum sent away with 'no follow-up required' in May 2013 after a hysteroscopy discovered a 'bulky' (I. e. fibrous) uterus? At this point she was still bleeding. Shouldn't her symptoms have been investigated further, instead of just leaving everything to the GP?

2. Why did the registrar gynaecologist who was on call on that date in September tell the radiographer who had found huge fibroids on my mum's CT scan that 'no further gynaecological review was required'? We were now after all 6 months further. The symptoms were persisting and changes had obviously occurred.

3. Why did it take the consultant gynaecologist who had been advising the GP for over a year so long to decide to make an appointment? Why did they not take ownership of this case much, much sooner?

4. And this may be the biggest question (if my information is correct). Turns out that a woman of 85 shouldn't have fibroids anyway and that they may have had nothing to do with the hormonal medication (three different kinds) that my mum had been given (to very little avail). If that is true, then shouldn't alarm bells have started ringing at some point in all of this?

I live in Europe and turned up every time to take my mum to appointments. Only once did I have to postpone one by a week. That was because my daughter was having a baby.

I reckon I am owed an explanation. Was it a policy decision to dump everything with the GP? Was it because my mum is an old lady? Would it have happened to a young person? Because if so, then the system is in a very sorry state indeed.

Another consultant has now taken over the management of the case. Have to say I'm very impressed. Wish they had been there at the start.

Also, everybody at ground level did their best to arrange appointments etc. The staff are great but are struggling just as much as the patients with a horrifically overworked and bureaucratic system.

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Response from Customer Relations and Feedback Team, NHS Lothian

Dear Mallory

Firstly I would like to apologise for the delay in responding. I am very sorry to read your experience. If you would like to send your details to the Customer Relations and Feedback Team we will fully investigate. We can be contacted on 0131 536 3370, email craft@nhslothian.scot.nhs.uk or you can write to the Customer Relations and Feedback Team at Waverley Gate, 2-4 Waterloo Place, Edinburgh, EH1 3EG.

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    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too

Update posted by mallory (a relative)

This is not a NEW story but a continuation of a story that has been going on for almost two years concerning the gynaecology department of Edinburgh Royal Infirmary. You will find the history under my pen-name, which is Mallory.

My mother has now died of a uterine sarcoma which had been building up since March 2013. Okay, she was an old lady (86) - but just supposing she had been a lot younger, would she have been strung along in the same way?

I have PoA, so I had the authority to submit an official complaint against three people in the gynaecology depatment of ERI. I also had access to all the notes on the case.

I submitted an official complaint to CRAFT in September. Normally, I should receive some kind of decision within 20 days. I understand that this kind of complaint might take longer, so I didn;t mind when I received a letter to that effect. But it is now almost January 2014 - and I have still heard nothing about the status of the complaint.

My mum is now dead, so any action I now take cannot harm her.

Updates, changes and questions related to this story