"Unable to get an urgent referral to Gastroenterology"

I would like to share my experience which has caused me a significant amount of distress due to the lack of care/empathy received thus so far.

For a few years dating back to pre covid I have attended my GP with severe abdominal pain which initially was causing issues with bloating, stomach cramps, loose stools and fatigue. Bloods were done and advice given. At the time I began monitoring my food through the recommended FODMAP and attempted to manage the issue this way. However fast forward a few years and the matter has became worse. 

I was referred to Gastro during COVID which took a long time due to the increase in waiting times of which I was more than understanding. I was contacted and assessed via telephone to be told I was not required to be seen and should my symptoms worsen to go back at my GP. At this point I had been on the waiting list a considerable amount of time and now if anything else was to get worse I was to be put straight back to the bottom of the list which is exactly what has happened. During this point my symptoms had worsened . I was suffering from headaches, nausea, dizziness as well as the above as stated earlier. My blood was showing I had a deficiency in my folate levels so I was placed on folic acid as a supplement. This was causing a number of issues and extreme fatigue which began to affect my work life/personal life.

I attempted to try new methods of increasing my vitamin intake alongside my folic acid and hoped that it would resolve itself which it never has.

I had to contact my GP again in March this year due to worsening of my symptoms including blood within my stool which is not a common occurrence, however as you can imagine with the previous all combined is extremely concerning and upsetting. My GP thereafter put another referral to Gastro in which has now been a 12 week wait. 

Throughout the last few months my symptoms have worsened and I am still suffering all of the above but at a more unmanageable level. I have been off my work due to the extreme fatigue and constant illnesses. I am unwell almost every day and have been for weeks now. I have had loose stools for over a year at least on a daily basis and my immune system is heavily weakened, hence I am continuously contracting different illnesses/viruses which has its own concerns and limitations.

I attended my GP again and throughout this few months my blood have shown a number of deficiencies such a my phosphate levels being low which isn’t common and again my folate levels which have now again had to be supplemented. It appears my body is suffering from malabsorption as explained by my GP which they are doing their best to manage through supplements.  There is a risk of malnutrition due to my my body being unable to absorb them efficiently, leaving me exposed to further illnesses. My diet it healthy and balanced and I am usually a fit and active individual before all of this. 

My GP has since placed an urgent referral to Gastro by letter to a consultant within Crosshouse Hospital. I received a phone call today after chasing this up through Referral Management and a secretary within the Gastro department to be told that the consultant has downgraded my urgent referral to routine. No explanation was given and I explained my case and was extremely distressed on the phone. I explained that this will essentially be my third referral and not once have I been assessed by a specialist in person. I was advised by the secretary that the consultant had advised I would be fine. I was extremely angry and upset by this comment coming from someone who has never seen me in person. They have never assessed me so I do not understand how they can make such a comment. I feel it was highly patronising as if my concerns and health are unimportant and was not deemed serious enough for me to be treated.

Overall I have been waiting to be physically seen for over 2 years and due to the initial failing with the telephone consultation this has put my case to the bottom of the pile. I do not understand why, if a GP has seen me, this is not enough for the consultant to deem my referral as urgent. I am only getting worse as time goes on and no amount of bloods will help if the underlying issue is not addressed and this is impossible without some sort of intervention and investigation into the cause.  I believe this can only be done through imaging or a colonoscopy or endoscopy. I have deteriorated already and to be told I will possibly need to wait 18 months.  I feel this is a disgrace. I don’t understand what is classed as urgent as nothing has been ruled out in terms of GI diseases/cancer and given my symptoms, I don’t know what else I need to have to be classed as urgent. 

My GP has since been contacted and made aware,  I have been advised to go private if I have the money, which I don’t.