"Gastroenterology experience"

I was referred last year and due to the badly worded referral letter from my GP I was made to wait over six months for an appointment. Had anyone read the referral properly, even though it was badly worded, the details of what was happening to me was still there - i e. unable to eat, worsening pain and weight loss.

I was given an appointment for January 2025. I had been getting a lot worse with new conditions and the gastro symptoms, so I was desperate for this appointment.

I was not given a face-to-face appointment and was called by a locum. I feel I was fobbed off for three months and the letter that followed was grossly inaccurate. Despite having 5/6 red flags for colon cancer, for which I should have been expedited under the two-week rule. I then had to fight tooth and nail to be seen and not one person seemed to want to help me.

The F2F was then cancelled at the last minute and I was given another telephone call, this time by another locum. I was again not listened to, the 5/6 red flags were ignored. They tried to fob me off for another six months and I had to beg four times to be seen. The clinic letter that followed ridiculed me, and did not list any of my presenting symptoms.

I was then sent an appointment for another two months’ time. Despite the fact that my most dangerous symptoms was bowel that had totally ceased to function. Not constipation. Zero motility. So I was at risk of obstruction at any given moment. I also reiterated to this second locum that I am intolerant to drugs so if I was left to the point if needing emergency surgery I would not be able to survive an anaesthetic. My medical was ignored. Their clinic letter was even more inaccurate than the last one.

I am utterly traumatised and this appointment which should be giving me reassurance, is giving me constant trauma, I cannot sleep, the rare disease of MCAS that I have developed is causing me damage by the minute. I am mentally in abstract distress. I have tried every avenue to get help, and every time I hit a brick wall.

I should not have to be contacting my MP, PALS, the secretaries who never reply, I have asked very reasonably to be seen by a different Dr but despite the fact that there are 28 gastros, plus registrars, plus SHO in the one Brighton hospital alone, this has been denied. I feel I am being punished for daring to request this by them saying I will be put to the back of the queue again, despite the colon that is not working, if I persist in asking for a different doctor.

I have had to pay privately to see a gastro, who was appalled with how I had been disregarded. He said I should have been referred under the two-week rule and needed urgent help immediately for a non-working colon. No one is listening to me, and I am so traumatised and broken.

I am too traumatised now to be able to even think of getting into that inaccessible building, even the thought of it is unbearable, I have never felt so hopeless over something which I should be relieved about. I cannot stop crying with despair. I cannot even talk. Although no one listens, the clinic letters are completely fabricated and nothing is ever done.

This experience had hit new lows. As a patient you are allowed to go outside of your area for treatment. I've never been routinely offered this at my GP surgery and to be compliant I didn't like to ask.