Belfast or Blind: Stories from the life-changing cataracts bus
Neilie Duggan accompanying his wife Patsy, from Rosscarbery, West Cork, on the Belfast or Blind bus. Picture: Neil Michael.
When the TD you are trying to get hold of says he can’t talk because he is with one of his “patients”, you might be forgiven for thinking it is a slip of the tongue.
But in the case of Michael Collins, it wasn’t.
At the time this reporter called the Independent West Cork TD, he was helping an elderly woman onto one of the so-called Belfast or Blind coaches he and fellow TD Danny Healy-Rae have been organising for almost five years.
Since December 2017, the coaches have taken around 3,000 people to Belfast’s Kingsbridge Private Hospital in Belfast for operations to remove cataracts.
These are the cloudy patches that develop on the lens inside the eye that eventually get larger and cause eyes to blur and mist over. Eventually, it causes blindness.
People on the Belfast or Blind bus are mostly people who have been waiting years to get treatment and are finally starting to go blind, because they have been waiting too long.
Instead of such a service being regularly run by the health service itself, which is responsible for managing the country’s long waiting lists, it is instead run by two TDs.
So now they say that they serve two sets of people — their constituents and hospital patients.
One of those patients on this weekend’s bus — 100th since the service started on December 16, 2017 — was Patsy Duggan.
She found out she had the early-onset of cataracts about two years ago and had been on a waiting list for cataracts operations, but was not unduly concerned until July, when she contracted Covid.
“I suffered two main things when I got it: very painful headaches and my eyesight suddenly deteriorated,” she said, sitting on the bus beside her husband Neilie.
“Two years ago, my ophthalmologist said the cataract was only causing a very small footprint in my eyes, with floaters.
“But after I got Covid and started having big problems with my eyes, I went back to her and she said the cataracts were very serious and had grown considerably.
“She said I would really need to have them removed.
“There is no doubt in my mind Covid affected my eyes because they just suddenly got very bad, and it’s just horrible.
The chances are that even after she gets her eyes done, she’ll be back up to Belfast to get her left knee operated on.
The mother-of-five has so far been waiting five years for knee surgery.
Anybody who thinks all the two TDs and their staff do is book cataract patients a seat on their Belfast or Blind buses and make the odd phone call would be wrong.
The process starts with a random member of the public from anywhere in the country ringing either of the TDs, who then explain the whole process to them.
This includes anything from describing the procedure to explaining how they can get the cost of their treatment refunded by the HSE.
Next, they help to arrange a date for surgery, and then — if they don’t have the funds themselves — they help the person wanting to travel to get a credit union bridging loan for what now costs around €2,200 per eye.
Then they make sure they have a seat on the bus and then they find them a hotel room in Belfast’s Europe Hotel — where staff there are now well used to streams of people from down south coming up for Kingsbridge Private Hospital appointments.
They also organise a series of taxis to shuttle patients from their hotel to Kingsbridge for consultations the night before the operation and back to their hotel and then back to the hospital the following day for the actual operation.
Patients are always met by the TDs before they travel to make sure there aren’t any issues, and they also meet them when they come back.
They then help people get their money back from the HSE for the treatment.
Treatment was initially reimbursed via the Cross Border Directive (CBD) on Healthcare, but it has been replaced by another reimbursement scheme — the Northern Ireland Planned Healthcare Scheme.
This is a temporary arrangement set up after Brexit.
Up until last week, the TDs also had to arrange and schedule a PCR test for every person going on the bus.
On top of this, the TDs and their staff often have to give some patients living in isolated parts of rural Ireland lifts to the bus and to be dropped home afterwards.
“The staff in the HSE refunds office do a great job, but are overworked.”
Mr Healy-Rae said: “Myself and Michael do it because we are passionate — and no matter what people think, this service isn’t just for our constituents.
“We reckon only about 40% who go on the buses are in our constituencies.”
The inspiration for the bus service in the first place was John Patrick Harrington.
He was the 90-year-old who had to endure the 1,000km round trip from Bantry to Belfast because he faced a four-year wait despite going blind.
Mr Harrington had first heard about the CPD scheme from his local TD, Michael Collins.
His son Jerry said he had mixed emotions as he saw off the 100th bus from the Inver service station in Bishopstown, Co Cork.
“My emotions are tinged with happiness to see so many being help, and sadness because my father has died since,” he said.
Eileen Scully is probably too polite and patient for her own good.
The softly-spoken 87-year-old great-grandmother from Goleen in West Cork has patiently waited for more than six years on waiting lists to get cataracts in both her eyes treated, but has just given up waiting.
She had her right eye done four years ago and this weekend, she was due to get the left one done.
It was her second visit to Kingsbridge Private Hospital in Belfast.
“I waited for the first one to be done but that didn't happen, so I got it done at Kingsbridge,” she said.
The mother-of-seven also came up to see if she could also get laser treatment done to her right eye, which was operated on four years ago at Kingsbridge Private Hospital.
The hospital advised against the two procedures in one day when she was seen on Saturday evening in the Kingsbridge Outpatients Clinic, so that will be something for another day.
Her daughter Margaret, who accompanied her on the trip up to Belfast, said: “She has been waiting for four years, and in all that time, nobody had called her in."
Although nobody told her she would go blind, she believes she might as well have been.
“The difference to my eyesight when I had my first eye done four years ago was just amazing,” she said.
“Up until that point, I, for example, thought there might be something wrong with my TV.
“It was always blurry or out of focus.
Mrs Scully, who has 20 grandchildren and 26 great-grandchildren added: “Sometimes you just feel a bit disappointed that you can’t have this done on your own doorstep.
“It's dreadful we can't get it done at home, it's extraordinary.
“They will eventually pay for it, but it’s paying someone in a different country to do the work, why can’t they pay someone in our own country?”
Margaret said: “Belfast is a long journey for a woman of her age to have to have surgery done that takes about 20 minutes and it is just incredible that it can’t be done in our own city, of Cork.”
Patrick Casey was going blind when he took his seat on the first Cataracts Express coach, on December 16, 2017.
Although the then 72-year-old could see through his right eye, it was almost useless because of damage from cataracts.
And as he later sat in the corner of the reception area of Kingsbridge Private Hospital in Belfast waiting to see a consultant, all his left eye could make out was blurred shapes.
His one good eye also had cataracts, and was going the way of his right eye if that wasn’t also treated.
The retired long-distance lorry driver from Tralee, Co Kerry, had been waiting seven years just to see a consultant.
He faced another few years waiting to get the cataract operations he badly needed at the time.
A mild-mannered man with a ready smile and a painfully polite way about him, he was never one for strong views, but his experience on an outpatients’ waiting list changed that.
"It’s maddening to have had to travel up to Belfast to get seen," said Patrick.
His grandfather had his own cataracts removed in 1968 in Tralee when he was 72.
However, back then, all he had to do was contact the local surgeon and he got the operations done in less than two weeks.
After he came out of surgery back in December 2017, this reporter noticed he was so excited about having been treated at last, that he was almost in tears.
Today, he is very happy with his sight, and very glad to have been able to save his eyes.
“They are perfect,” he said.
“I was in a pretty bad way while I was on the waiting list, and then this bus service happened.
“I think it's brilliant, and after I got one eye done, I got the other done the following February.”
He added: “I still believe this is no country for old men or women.
Behind him on the walls of the kitchen are drawings from some of his 17 grandchildren and beside them is a large flatscreen TV.
“There was a time when I used to think the fact that TV was all blurry and out of focus was a problem with the TV,” he said.
“But I realise now, with the great vision I have now, that obviously wasn’t the case.”
Nobody is checking to see how many go blind on waiting lists, where 37,914 outpatients are waiting for ophthalmology care.
This is despite repeated reports that people who wait too long for cataract operations are going blind, and despite warnings by the National Council for the Blind of Ireland (NCBI) that waiting list delays are leading to “unnecessary blindness”.
NCBI’s head of advocacy June Tinsley said: “The NCBI is genuinely concerned about the delay people have to wait for treatments.
“It does lead to deterioration of their sight and, in some cases, unnecessary blindness.
The asked the Department of Health if Health Minister Stephen Donnelly had commissioned any research into the impact on patients having to wait more than six months for ophthalmology procedures.
A spokesperson referred the question to the HSE.
The department was also requested to ask the minister how he feels about people on waiting lists going blind and what he is doing about long waiting lists for eye care.
The spokesperson said in reply that health officials are identifying more ways to improve access to care, including through the increased use of private hospitals and funding weekend and evening work in public hospitals.
They also referred to extra funding initiatives and said that the National Treatment Purchase Fund had, for example, approved five inpatient day cases and seven outpatient ophthalmology “initiatives” for funding so far in 2022.
This will, they said, “facilitate treatment for over 12,700 patients on ophthalmology waiting lists”.
Asked what it has done to see how many go blind waiting for HSE care, a HSE spokesperson said: “The HSE has not carried out specific research on the impact of extended waiting times for patients seeking ophthalmic care.
“Over the past number of years,the focus for the HSE has been to redesign the model of care and the pathways of care to develop and expand capacity to ensure that patients can be seen in a timely manner.”
Michael Collins TD said: “It is outrageous in this day and age that anybody would end up going blind while waiting to be treated in what is supposed to be a first world country.
“The fact that nobody in the health service is bothering to find out how many are actually going blind is just shameful.”
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