"My father's experience with red flag referrals"

Hi, I work within the northern health and social care trust, but ultimately I am a deeply concerned daughter writing to you about my father's experience within the trust recently.

I have serious concern regarding the current functioning of the health service, but namely the protocols and waiting lists for red flag referrals as currently experiencing in my father's case.

For background, my father is an independent 72-year-old man whom is generally physically always well, his main diagnosis is severe complex post traumatic stress disorder following his military career. At the end of October 2022 my mother, his wife, very suddenly passed away at 52 years old from what we have been told was a rare bowel condition.

My father attended his GP in Nov 2022, reporting feelings of physical exhaustion and sleep disturbances. At the time this was merely thought to be grief related. However, as time passed and he continued to be symptomatic of exhaustion, in Feb 2023 investigations confirmed a low haemoglobin of 70, alongside a positive qFIT >400.

My father is extremely worried and I am overwhelmed by anxiety at the thought of losing my father so soon following my mum. The GP also expressed their concern regarding my father's age alongside positive qFIT. The GP stated that my father needs scoped to identify the cause and formulate treatment. Therefore in line with current protocols, the GP referred my father as red flag to General Surgery in Antrim Hospital.

I did query at the time if General Surgery was the appropriate place, would Haematology or Gastro have been more appropriate with his results, but I was reassured this was the correct protocol, generally the surgeons pick up these referrals and then place these patients on the OGD/Colonoscopy waiting lists given results such as my father's. I was informed the GP has no way of directly referring for these procedures theirself.

The booking office advised current waiting lists for General Surgery red flag is 5 months, which left us feeling stressed and frustrated at the failing of the service in itself. However, there was positivity in that the GP had seen a turn around of some patients in a shorter time frame, approx 2 months. I don’t understand how some patients are seen faster than others if they are all red flag? I am fully aware of how pressured the service is, but it can’t be a case of it is what is it, I don't think that’s good enough, protocols need to be reviewed to ensure efficiency in prioritizing people.

As you can expect, our anxiety regarding my father's ill health was multiplied following the recent experience of loss and particularly enhanced as this is potentially a serious bowel related illness for my father too. Therefore he attended an initial consultation at a private hospital, which was costly, but we felt we had no choice. He saw a Gastroenterologist, who agreed that urgent OGD and colonoscopy was required, the exact same as the GP had said. The gastroenterologist referred my father privately and asked I double check that the GP had specifically referred for these procedures on the NHS, and to take whatever comes up first. Again, I was informed the GP cannot directly refer for procedures and I think there was a note added to the referral at this time highlighting need for scopes.

The private appointment for procedures came back quickly with a date early march 2023, however the upfront cost was £4000, for a procedure that takes about 30 minutes. This is not expendable cash for my father as a veteran, or I whom continue to work for the NHS and pay into the pot so to speak. We feel this is a decision we should not be faced with, placing ourselves in debt or gambling with my father's outcome.

Following a conversation with the GP we decided to wait 8 weeks (as others red flags had been seen in this time frame) we waited in hope. That time has passed, to date, my father remains on the waiting list, and has not been assigned a general surgeon.

I have contacted the General Surgeon’s secretaries to see if there was a way to get my father off the waiting list to see a General Surgeon as he’d been seen privately and onto the list for said scopes, but it was a case of it doesn’t work like that. I asked for advice and the secretary stated that the GP should refer for a direct test (procedure first follow up after).

The GP has attempted to contact General Surgery to seek if this is possible and how. My question is, if this is possible why is this information not disseminated to those who need to know. If this is not possible, why not? I query how many others could have been directly referred for procedures and followed up afterwards, saving months of waiting on a list they didn’t even need to be on in my opinion. I have to make comment that the GP has been most supportive in their role, but I feel their hands are tied working within these protocols. If a GP can identify the investigatory procedure required they should be able to refer directly for it and have the specialist follow up on any abnormal results. I understand protocols are in place to ensure the safety and efficiency of processing patients. However, in my fathers situation it’s a case of basic communication losing against said protocols.

I have also contacted the private hospital to enquire if the gastroenterologist can refer my father on the NHS for these procedures, which I don’t believe they will due to red tape between trusts or sectors, but in all honesty I feel my father is at the mercy of these services being provided. This time waiting for these procedures to give answers, really could be the difference between quality time with my father in the future and not.

Thanking you kindly for taking the time to read our experience and action it as you see fit.