Anguish of people waiting years for treatment
Exclusive: warning as new figures reveal critical state of health service Human agony behind NI’s waiting list crisis
PATIENTS in Northern Ireland have spoken out about their pain and anguish over the long delay for treatment as they wait years for life-changing care.
They spoke out as shocking new figures reveal the critical state of healthcare here, with some 306,000 patients on hospital appointment waiting lists in Northern Ireland in September.
Iwas first told I probably have Crohn’s disease last month. I have been feeling pretty awful for a while, but put it down to having two young kids and being a bit of a moaner. But it turns out, it was probably a bit more than that.
I have been exhausted for ages, probably a couple of years really. My immune system is rubbish and I have caught every cold and bug and flu going, and I’ve really struggled to shake them.
And as well as a painful, crampy tummy, one of the worst things for me has been mouth ulcers. Absolutely loads of them, a lot of the time. When I went to my GP about it in October, I thought I would be told to take more vitamins, and maybe get a fancy mouthwash.
But an initial test with the GP was “highly suggestive” that I have Inflammatory Bowel Disease. I really wasn’t expecting that.
There are two kinds of IBD, Crohn’s and Ulcerative Colitis, and I’ve been told it is most likely I have Crohn’s Disease.
They referred me as “urgent” to get a full diagnostic test at the Ulster Hospital.
I was warned it would take a few months. But looking into NHS waiting lists this week, made me wonder if it might be a bit more than that.
And it will be.
I have now been told that even with an urgent referral, the waiting list I’m facing just for an initial appointment to discuss my situation is more than a year. It could be as long as 60 weeks.
At that point, I should be referred on for an endoscopy, the examination that will determine exactly what I’ve got. I don’t know what the waiting list for that is.
In the meantime, I am reading lots of stuff online and I’ve bought some books that look the part.
I am making changes to my diet, I’m cutting out bread and lactose. I’m avoiding raw veg and junk food.
And of course, with it being the 21st century, I’m following people with Crohn’s on Instagram to see how they manage their condition.
But I’m guessing really. I don’t actually have a clue, and without even an official diagnosis I feel like a bit of a fraud even saying that I’ve got it.
It is worrying, of course, because while it is pretty mild now — if I have it at all — I know the condition can get progressively worse and for some people, can end up quite debilitating.
For my own peace of mind, and to get to grips with it so I know how to manage it and stop my symptoms getting worse, a diagnosis at the very least would be great.
When my mum suggested I go for the test privately, I laughed it off because it sounded daft. Who goes private? Is that not for posh people, people with bags of money?
But it turns out, with the waiting lists the way they are, I can see why people scrimp and save to get off the list.
It doesn’t seem to me to be the fault of the health trusts, or the people who work for them. They are swamped.
And it must be awful to get phone call after phone call to the appointment line from people desperate for news. But the situation is bad. It’s much worse than I realised.
And people really need help. The South Eastern Trust said: “Unfortunately the expected waiting time for an urgent initial consultation with a consultant is indeed 60 weeks, and we would apologise for this.
“The GP cannot refer directly for an endoscopy. The consultant will triage the referral and decide the most appropriate pathway.
“It seems in this case that the consultant has decided that an Outpatient consultation is required before they can agree the appropriate next steps.”