"Lack of joined-up care"

My medical history is complex, including trauma from NI Troubles.  Before the Covid Pandemic, I had a sigmoidoscopy at Ulster Hospital, and it was suggested I should seek a full colonoscopy - which I paid-for from savings - which indicated some diverticular disease and scarring.  I then had a few trips to Ulster Hospital A&E/ED due to episodes of severe low abdominal and groin pain. Diverticular and possible hernia issues were suggested, and scans later confirmed right-sided inguinal hernia. 

In November 2020, I became very seriously ill from Covid, including double pneumonia, requiring oxygen and stay in hospital in late 2020. 

As well as confirmed Type 2 Diabetes, pancreas issues, and other continuing Covid effects, my digestive system became even more messed-up after all that, with worse pain issues, and GP at the time referred me back to Gastroenterology. 

After long if usually understandable delays and communication difficulties with medical secretaries and doctors, my persistence paid-off and I was fortunate to finally access the care of a consultant in Ulster Hospital Gastroenterology/Gastro Hub in 2021.  With the Pandemic and lockdowns continuing, my consultant would clearly do their best by speaking with me on the phone, explain things well, and do what they said they would do, and liaising with GP and me in writing where needed.  They also arranged for me to have further tests, including at Royal Victoria Hospital, and confirmation that I had Bile Acid Malabsorption and two hernias - one on each side. 

My consultant continued to engage regularly, and respond to me -  provided messages were actually passed to them by staff such as medical secretaries, and, with continuing unpleasant symptoms and flare-ups, I got to see my consultant in person at Ulster Hospital Gastro Hub in December 2022, and they were very well prepared and thorough.  This is always most reassuring indeed for a patient. My consultant said how there's usually a need to adjust medications and other lifestyle issues and techniques for the best results, and regular reviews. 

Unfortunately, medication additions/adjustments in early 2023 did not help, and, when I sought a proper review, and assistance from GP to get that review, things went quiet, which was unusual under my consultant's care.  It was only much later on when I found out my consltant was taking a career break.

Without my consultant looking-after my care, I feared things going back to where they were before, and sadly that is what happened. (I later learnt that my consultant would not be returning to work in SE Trust.) 

Requests for assistance via medical secretaries, and my GP also trying, did not achieve anything - and GPs cannot be expected to review and add to or remove treatments ordered by specialist consultants.

During 2024, when I could get a response from medical secretaries or others, I was told a mixture of different things, including that I had been discharged back to my GP - which I knew to be false - or that I was on a waiting list, or waiting for review.  I then found out that I had actually been allocated a review appointment in December 2023, but that either the appointment letter was never sent to me, or the address so wrong that it would have been unlikely to reach me.  I never knew anything about it, until later in 2024, but had been marked as not attending.  No one tried to follow-up with me why. 

In Autumn 2024, I again asked one of my GPs to advocate for me to get the specialist appointment reinstated or be able to attend the Gastro Hub again - which is supposed to be there to offer rapid-access for new or existing patients, which I was under my consultant - but these requests were refused by one of the consultants there.  One of my political representatives then tried to advocate on my behalf, explaining the background and a fair request to be seen again after such a long time, and this was also refused.

I have no doubt that this would not have happened with my primary consultant. 

2025 arrived, and still with no sign of anything from Gastro Hub / Gastroenterology, meaning I had not had any word from any doctor there since I last spoke with my primary consultant in early 2023.

In May 2025, I felt noticeably unwell and off-food for a few days.  I was woken-up by severe abdominal pain and nausea, followed by sudden, prolonged and copious vomiting.  I was seen first by a Paramedic and taken to hospital by ambulance where I was admitted and stayed for two nights. 

I had suspected appendicitis on that occasion, though discharged after tests, but consultant who saw me did feel existing diverticular or other existing issues were to blame.  Perhaps naively, certainly hopefully, I thought this trip to ED/A&E and consultant's opinion might result in finally getting a proper review with Gastro Hub / Gastroenterology, and my GP did do some tests of samples a few weeks later, but I still have not heard anything from them.  There was a time, not long ago, when the systems seemed to be joined-up and talk to one-another, but it just doesn't happen anymore.

I guess I could use savings to try going privately, but that means starting all over again, and it's all so transactional and also tends to leave my GP in the dark. 

So, my experience with Gastroenterology / Gastro Hub is a mixture of three eras:

Before my primary consultant: unsatisfactory ;

Under my primary consultant: generally very good ;

After my primary consultant: very poor and disingenuous.

I hope you and all concerned take this honest feedback of my experience in the listening and learning way intended.