Northern Ireland patients left waiting - Epilepsy Action

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Northern Ireland patients left waiting

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The Northern Ireland department of health will not be able to meet its waiting list targets due to a lack of recurrent funding, it has said.

Epilepsy Action policy and campaigns officer Jack Morgan said: “Urgent action needs to be taken to address waiting times. We are again repeating our call for political parties to break the current stalemate, restore power sharing and work together to address the problems facing people with epilepsy.”

More details here: epilepsy.org.uk/northern-ir...

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lgd333 profile image
lgd333

I'm resident in Northern Ireland and feel for those on the waiting lists. The government situation here is ridiculous all due to one party who do not care for their own kind.

busylife profile image
busylife in reply to lgd333

I also live in NI and while I am sure the lack of a functioning Executive doesn’t help I have to stress that the situation with waiting lists existed long before Paul Givan walked away from power sharing in early 2022. I had my first seizure in September 2020 - a nocturnal tonic clonic and spent 5 days in hospital, where among other tests I had a brain CT scan and an MRI scan. I was sent home and told that I’d be referred for an EEG and as an outpatient to see a neurologist. I had to wait 5 months for the EEG scan appointment which took place in Feb 2021. It revealed “slight seizure activity” and as a result I was told I had epilepsy and asked to start medication.

In a telephone conversation with my GP in April 2021 (she rang to see if I would take the Covid “vaccine”) I asked her how long she thought it might be before I’d get the neurology appointment and she said, “The waiting lists are very long. Urgent cases are waiting about 3 years and non-urgent cases (such as you) are taking about 4 years…….well, actually to be truthful it’s nearer 5 years!”

In spite of having worked and paid plenty of income tax and National Insurance for nearly 40 years I felt I could do nothing other than pay to see a neurologist privately - and even then I had to wait nearly 5 months for an appointment.

Yes, the waiting list situation for all sorts of medical issues, not just neurology, is appalling though I think neurology is one of the worst. In September 2020, when I told my doctor friend (a consultant in one of the big Belfast hospitals) that I was being referred for an outpatient neurology appointment he said, “Good luck with that! Neurology had one of the worst waiting lists in the country - long before Covid!”

So, regardless of one’s political leanings, I think it wrong to blame the woes of all those patients waiting interminably for their neurology appointment on the current lack of a NI Executive operating at Stormont.

I think the neurology situation hasn’t been helped by the fact that one of our neurologists had to leave in disgrace and all his patients (my friend was one) had to have their cases, that this neurologist had dealt with, reviewed by someone else. The anxiety this caused was dreadful.

The “wonderful” NHS is, imo, no longer so wonderful. It’s claim to fame is that it’s free at the point of use so if you’re poor you don’t suffer because you can’t pay but in my experience it’s not much good if it’s not available at the point of need! I don’t think the DUP, for all their faults, can fairly be blamed for the problems of waiting times/funding which were obvious long before early 2022 when they withdrew from the power-sharing Executive.

lgd333 profile image
lgd333 in reply to busylife

I've lived here for 6 years, had epilepsy for 50 years and have not seen my neurologist face to face for over 3 years. It's an absolute nightmare for patients on their records already, never mind those on the long waiting lists. Not having a government has made matters worse but the DUP do not care either about the patient, the general well being of the public, the health system, the cost of living and more. They are even being paid for doing nothing!

RR25 profile image
RR25

I live in Northern Ireland also. I haven't seen my consultant face to face since 2019, its always phone appointments. I did request a face to face but his secretary said you will be waiting a while for a face to face so stick with the phone app. He puts me down for 6 monthly reviews. I now add 9/10 months onto that given the previous wait in between reviews. I had a phone app with him last feb. He had me down for 6 month review. My app finally came through for May past. So again, he will see me in 6 months, which should be November.... But i know it will be july/aug next year. Apart from that, he is a great consultant.

EpilepsyAction1 profile image
EpilepsyAction1PartnerEpilepsy Action

Thank you for sharing your experiences.

It's vital that urgent action is taken to address waiting times and that people with epilepsy or awaiting diagnosis in Northern Ireland are supported.

In the meantime, our information about getting the right treatment and care in Northern Ireland may be helpful. This talks through your rights and what standards you should be able to expect from health and care services. It also has information for what to do when you feel you aren't getting the right treatment and care - epilepsy.org.uk/info/treatm...

Please do feel free to reach out to us too. We have details about the support we offer here - epilepsy.org.uk/support-for...

Best wishes

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