This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?

"My mum’s year and a half of suffering"

About: Royal Infirmary of Edinburgh at Little France / Gastroenterology Western General Hospital / Gastroenterology

(as a relative),

I am writing this as I feel my mum has been left to suffer for far too long. My mum was diagnosed with ibs 30 years ago but for the last 2 years she has had a battle with constant diarrhoea and acute stomach pains.

At beginning of 2016 (not 100%sure of exact time) my mum went through a very painful colonoscopy and after lots of biopsies she was diagnosed with microscopic colitis. Before getting diagnosis she had to wait 12 weeks until she got an appointment with the consultant so In this time her life was on hold. Every time she tried to eat or even drink water it would run through her. She couldn’t go out I case she wasn’t near a toilet. She couldn’t socialise as she couldn’t stop for a coffee of have lunch because the diarrhoea and pain would cone on straight away. She lost a couple of stone and was very weak.

Once she seen consultant she was given steroids which did help but they weren’t for long term use so once she stopped them, a week or so would pass and she was back to square one. She would go to GP and they would give her the consultants secretary’s number but when she phoned she still had to wait 3 months to be seen again and all this time suffering.

To make a long story short she has had different anti inflammation tablets and granules which don’t help at all and actually make her worse. She has been put on steroids 3 times and last time she saw the consultant around summer 2017 he gave her granules again. She said to him she has had them before and he replied that she hadn't had these ones. She did have them in the past and when she left that day the consultant said to her that he won’t see her again, she replied oh ok and he said but if you need to you can phone my secretary!I feel like she has just been left to suffer and it’s like they know what else to do for her but there must be a long term solution eg a mild steroid every day, surgery? 

It is now January 2018 and I have just spoke to my mum on the phone who is back to not being able to eat or drink. She wants to phone the secretary but she can’t wait another 3 months on a waiting list. I’ve said she should phone and say she needs to be seen urgently or to go to A&E. I’m really worried about her. She is 72 and I feel she has just been left to suffer. I want to help but don’t know what to do. She needs someone to take her illness seriously and help her to live her life again. Please can she be seen urgently as I’m worried she won’t get through this. She is so weak but soooo scared to eat

Please help

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Patient Experience Team, NHS Lothian 6 years ago
Submitted on 26/01/2018 at 17:05
Published on Care Opinion at 17:12


Dear caz70,

Thank you very much for making contacting with us through Care Opinion.

l am really sorry to read of the difficulties your Mum has been experiencing, and can understandably hear the distress in your message that this is causing for your Mum and yourself.

I would be grateful if you can please contact the Patient Experience Team so that they discuss this further with you:

Email: feedback@nhslothian.scot.nhs.uk. Telephone: 0131 536 3370

I understand from your message that the GP has been contacted previously, and your concerns in relation to the waiting times. In the meantime please continue to consult with your GP or NHS 24.

Kind regards,

Pamela

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k