Text size

Theme

Language

"Seeking gastrointestinal help"

About: Northern General Hospital / Gastroenterology

(as the patient),

I have had stomach issues for years, but would have flare ups that went away. I had a flare up that has stayed, since July. I ended up in A&E in August for severe dehydration and was given new medication that has helped one of my symptoms. It took a while for my GP to take me seriously but she is really on my side now. I have since been referred several times to see a gastroenterologist. I have had two tests done that showed mild issues that I thought could give explanations but are apparently pretty benign. I have been deteriorating since August, I have lost around 10kg which is devastating to me as I worked hard to put some weight on. My appointment, that I eventually got after waiting for around 4 months despite being referred urgently, was cancelled a day beforehand. I am autistic and found this unbearable to deal with. I had a meltdown which subsequently caused me to fall and break my humerus.

I got an appointment 2 weeks later where I saw a doctor that wasn’t the one I was originally meant to see, with no explanation. The doctor took the time to talk to me, a long time which would have been appreciated if it hadn't felt so condescending. He tried to blame everything on mental health, chose not to listen to my mum who is my advocate and who knows the difference between my mental and physical health. I am well educated, and knew when he wasn’t being accurate and knew when what he said didn’t make sense. It felt like he was fobbing  me off, and he was. He gave me a medication to try that I felt pressured into, or else I would be labelled as non-compliant or not-engaging. I told him I tried this medication a couple of years ago and I did not react well to it but it was given anyway. I tried the medication and became weighed down by brain frog and suicidal thoughts. This was not a surprise. A summary of our appointment was written which was factually incorrect in multiple places and disheartening. The referral to someone more specialist felt condescending so when my GP phoned me today with an update I was surprised, but I was crushed. The specialist won’t see me until I go to an eating disorder clinic that traumatised me in the past. They've been informed of this but they won’t listen to me or my mum, in that this is not an eating disorder and that the service gave me trauma responses. They won’t give me any treatment or compassion unless I risk retraumatising myself, meanwhile I am deteriorating in health.

The specialist has not communicated with me in any capacity before making this decision, it was all decided without my knowledge and phrased in a finalised way that means I have no say in my care. It is disgusting treatment to not involve me or even talk to me, to see if the correct assessment has been made. I have talked to other women with similar symptoms in a support group who have faced the exact same treatment and been left feeling branded a “hysterical woman” before being helped. Having to prove that it’s not all in our heads. It’s made me lose all hope. The rhetoric is the same across the board. My GP thankfully has prescribed me some nutritional supplements but it’s not enough to help and their hands are pretty much tied. They understand my stance but feel helpless and want me to do what I'm being asked to do, even though I believe it would be harmful to me. 

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

Responses

Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust 3 years ago
Deborah Hopkinson
Patient Experience Co-ordinator,
Sheffield Teaching Hospitals NHS Foundation Trust
Submitted on 04/01/2022 at 09:27
Published on Care Opinion at 09:27


I am very sorry to hear of your experience.

The issues you raise appear to be very concerning and I feel that it would be helpful for the Trust to look into matters and respond to you formally. Please would you be able to contact our Patient and Liaison Services by phoning telephone number 0114 271 2400 and leave a message for one of our staff to get back to you or by emailing sth.pals@nhs.net so that we can take a formal statement from you?

I am sorry to learn that your experience was not positive and hope that you feel able to speak further about this.

Yours sincerely

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