Martin Haddrell was diagnosed with the condition in 2019. He tells the Belfast Telegraph about the difficulties caused in the wait to secure much-needed neurology services
A Co Antrim man who paid privately for an epilepsy diagnosis because of NHS waiting lists has backed a call for the government to act now to improve neurology services.
Martin Haddrell (58), from Dunadry, started to take seizures in 2019 but was told by his GP he could wait up to two years to see a neurologist.
Unable to work or drive, Martin feels fortunate that he had some savings which allowed him to pay for a private appointment and scans to confirm the diagnosis.
However, more than two years later he still hasn’t seen a neurologist on the NHS and has been unable to get his seizures under control.
He says: “You can’t get near a neurologist; you have to go through the epilepsy support service first.
“I’ve given up trying to get through to the support service, but I know it’s not their fault because they are overwhelmed.
“If I could see a neurologist, I could get the right medication, and everything could be kept under control, and I could drive and have a normal quality of life and get my independence back.”
Martin is speaking out after the charity Epilepsy Action Northern Ireland published startling new research that shows 21,000 people are waiting for a neurology appointment in Northern Ireland.
Of these 60% have been waiting for over a year.
The charity says that as many as 900 people in the province are facing an epilepsy diagnosis this year but are being left dangerously in the dark about their condition.
The charity warned that patients are facing a post-Covid ‘lucky dip’ of care which has sparked a 37% increase in people contacting its helpline about a new diagnosis of epilepsy, urgently seeking information and support.
“With neurology services still struggling to recover from the pandemic, many people are facing the harsh reality of uncontrolled and undiagnosed seizures,” says the charity’s NI manager Carla Smyth.
She continued: “On average 87 people in the UK are diagnosed with epilepsy every day, leaving them feeling overwhelmed by the impact of a new — and potentially fatal — condition.
“People can often struggle with their mental health as a result of their epilepsy diagnosis and feel frightened or anxious about managing their seizures.
“Social isolation and worries about work prospects, family and finances can also dominate their daily lives.”
Research carried out by Epilepsy Action NI before the pandemic found 1 in 3 people did not have access to an epilepsy specialist nurse (ESN).
Of those, who did, more than half did not get to see their ESN often enough. This included people who are at higher risk of harm from their condition, such as people with epilepsy who have daily seizures, learning disabilities, autism or mental health conditions.
Martin was diagnosed with epilepsy in September 2019 and was immediately signed off work. He decided to go private after his GP told him the waiting list to be seen by a neurologist in the NHS could be up to two years.
After various tests, he started taking epilepsy medication but says he is still having active seizures, which have a big impact on his quality of life.
He says he feels robbed of his independence: “My main worry is that after nearly two and a half years, I am no further forward than when I first went to the Ulster Clinic.
“I do realise that Covid has had a massive impact on everybody’s lives, but it’s been really hard to get through on the telephone support service.
“I have tried on numerous occasions when my medication or dosage doesn’t appear to be working. My seizures haven’t got any better and I have to admit that my mental health has suffered, and I’ve had periods of feeling really down,” he adds.
Martin worked for a parcel delivery firm, a job he loved but which involved driving and working around machinery.
His epilepsy causes mild seizures. He describes them as like being “absent” with no warning and no memory of what has happened.
He explains: “My family noticed I had started having these slight blurs where I would be absent for 30-40 seconds, sort of like being in a trance.
“I did contact my doctor who consulted the hospital, but they told me it was okay and just to carry on as normal.
“I continued to drive to and from work and do deliveries,” Martin adds.
“Then one day I was driving, and I had a seizure when my wife Elaine was with me.
“I didn’t have a clue it was happening, and it really scared Elaine. It was very dangerous.
“I went to my GP immediately and that was September 4, 2019, and he told me to stop work and not to drive anymore.
“He suspected epilepsy and said he would refer me to a neurologist, but it could take between 18 months and two years to see one.
“I wasn’t happy to wait, and we don’t have that kind of money, but we had some savings, so I decided to go private.
“Even then there was a waiting list of four months, but I was lucky to get a cancellation after six weeks.”
After paying £1,500 for an MRI scan and further tests, the epilepsy diagnosis was confirmed, and the consultant prescribed medication.
However, Martin was told that the medication often needs changed until the right combination to suit him could be found.
The consultant who saw him privately then referred him to his care on the NHS, but Martin says he hasn’t seen him since.
He adds: “I haven’t seen him since because of Covid.
“I am on my third different type of medication and it’s still not working.
“The epilepsy support team has gone from five days a week to three days a week and it’s nearly impossible to get through on the phone because they are so swamped.
“The team there are really good and supportive and are doing their best, but they are overwhelmed.
“I feel lucky that my epilepsy is mild compared to some people and I have Elaine to keep an eye on me, but I’ve lost a lot.” he adds.
“Work was something I enjoyed. It got me out and into company. Not being able to drive has taken away my independence.
“I know if a consultant could see me and get my medication sorted, I could apply for my driving licence and enjoy a normal quality of life again.”
Carla Smyth called on the Department of Health to take action.
She described the impact of epilepsy as “huge” adding: “Even before the pandemic hit, neurology services in Northern Ireland were one of the least funded, most stretched areas of the NHS.
“We regularly received — and continue to receive — calls from people who tell us they’re waiting as much as up to four years for a neurology appointment.
“NICE Guidelines recommend that people with a suspected diagnosis of epilepsy be seen by a neurologist within two weeks, but the current waiting times are far from meeting these standards and clearly unacceptable.
“Now, two years on from the pandemic, we have another surge in people seeking our help, fresh from being diagnosed and sent home with very little advice or information,” she says.
“They’re struggling to find support, not knowing their rights or their risks.
“Delays and misdiagnosis can have a huge impact too. “
The charity says epilepsy services in Northern Ireland are experiencing a severe lack of neurologists and particularly epilepsy specialist nurses.
Carla adds: “We are calling on the Department of Health to implement the findings of the review into Neurology Services when it is released and fund proper resource to ensure people with epilepsy receive timely and safe treatment for their condition.”
A spokesman for the Department of Health told the Belfast Telegraph that in response to pressures within the neurology service, including lengthy waits for outpatient appointments, the Regional Review of Neurology Services is progressing.
He went on: “The review is tasked with identifying the optimum configuration for neurology services for the next 10-15 years.
“[It] will consider current and future demand, new models for both scheduled and unscheduled care and measures to grow and develop the neurology workforce to better meet the needs of people with neurological conditions, including those with epilepsy.
“Subject to clinical capacity, it is hoped that the review will complete later in the summer.”
Epilepsy Action has released a video conveying the overwhelming panic and confusion as well as the wide-ranging impact following an epilepsy diagnosis. People struggling with a diagnosis, or any aspect of epilepsy, can find support at epilepsy.org.uk or by calling the Epilepsy Action helpline on freephone 0808 800 5050