At the age of eight, Ivan McMinn completed his first sponsored 10-mile walk for the Ulster Cancer Foundation (now Cancer Focus NI) and half a century later is the charity’s chairman.
Her diagnosis of pancreatic cancer ten years ago strengthened her determination to become more involved in cancer charities. Ivan is also Chairman of NIPANC (Northern Ireland Pancreatic Cancer) and has also co-chaired the Steering Committee of the Northern Ireland Cancer Strategy.
Involved in high-level strategic decision-making related to cancer in Northern Ireland, Ivan was involved in the 10-year cancer strategy which aims to ensure that everyone has timely access to diagnosis, treatment and care. For Ivan, patient-centered cancer care is essential. “When I was approached to find out if I would agree to take on the co-chairmanship of the steering group, I was told that it was a co-production,” he explains.
“My first question was what does that really mean? Does it bring people to a panel that you can say you talked to a cancer patient, or a group of cancer patients and you tick the box and don’t really listen to them or is- is it the complete opposite?
“Do you have a real real opening in an experienced experienced group. You listen to what they say. You involve them at all levels of the strategy and you have them throughout the process.
“This cancer control strategy document that was released a few months ago by the minister was a real example of co-production.
“In fact, it was the first real example of co-production in Northern Ireland, and I believe that in anything done in the future, the best results would be if the cancer patient, the doctors and the professionals met to decide on the outcome.
Alongside patient-centred care is service delivery.
“We have just finalized the local election process and it is wonderful to hear our politicians talking about the need for better health service. It is absolutely necessary,” says Ivan.
“The facts, however, are that people are living longer. As a result, their needs can be much more complicated, when cancer strikes at a time when we have fewer surgeons, fewer doctors, fewer nurses and the like to meet growing care needs.
“We’ve all heard the statistics that cancer will affect one in two of us, so I really welcome the statements from these politicians that we’re going to fix our health care system, but that statement goes hand in hand with very, very brave decisions that these politicians will have to make at some point.
Not every hospital can be everything for every cancer or every condition, Ivan says we need to move to a position where we can create centers of excellence that are properly staffed in a way that ensures the patient will get the best possible treatment and thus increase their chances of getting the best cancer diagnosis possible.
“Right now, that’s not the case,” he says. “When I was diagnosed, I wanted to get the best treatment. I wasn’t concerned about how far I had to travel to get the best treatment.
“Our politicians must keep this clear goal of achieving the best possible patient outcomes in mind whenever making decisions about how and where cancer services are delivered to patients.
“If we go with the status quo, we won’t get there and ultimately the patient won’t get optimal outcomes.
“One day, this patient may be his child or his parent and maybe this thought will help him in his decision making.
“The two years of Covid have had a massive impact on cancer services.
“If I look at the services today of the hepatobiliary team, it is to this team that I owe my life. He, due to Covid, has been relocated and is currently working in a number of centres.
“No matter where the demand for this center of excellence must be, this team must be brought together as one unit to be able to offer the best possible service to cancer patients, who need their collective expertise together. , not separately.
“It gives people like me the best possible outcome when it comes to diagnosing cancer.”
Ivan, a former senior bank official living in Belfast, was training for a marathon when he was diagnosed with pancreatic cancer after presenting to doctors with jaundice.
He underwent major surgery known as the Whipple procedure followed by eight months of chemotherapy.
Three years later, she was told the disease had returned and was inoperable, with only a 10 per cent chance the chemotherapy would work any more.
After eight months of chemotherapy, she was told the tumors were not visible; only 1% of people survive the disease which claims the lives of more than 260 people every year.
“Pancreatic cancer, in general terms, there hasn’t been a lot of change in treatment over the past 40 years,” Ivan says when asked if cancer treatment has grown since his birth. initial diagnosis.
“It is a terrible statement. That said, there are many glimmers of hope, coming from all over the world from different
trials and different types of treatment, bubble treatment, chemotherapy treatment very, very targeted than the signs
“But the key, without dwelling on pancreatic cancer, the key to survival from any cancer is early diagnosis and the earlier the diagnosis can be made, the greater the chances for the patient.
“It doesn’t matter if it’s a brain tumour, prostate cancer or any cancer.
“It’s the Holy Grail. If you can get an early diagnosis and don’t need aggressive treatments, you may not need aggressive surgery.
“The earlier in the chain that it can be caught and even come back to understanding each of our genes as to the likelihood of what we’re going to develop in the future. The further back we go in the cancer journey, the better. for the result on the other side.
He calls his survival purely a response to the work of chemotherapy.
“I am a living example, a grateful living example, of someone who has the utmost confidence in the ability of the surgeons we have, when they have the chance to operate, and also in the power of chemotherapy when it must be administered.
“I always try to encourage people not to take a cancer diagnosis as a death sentence.
“Statistics unfortunately show that sometimes there are not good results, but believing that surgery can work, does work, and chemo, even if it is horrible, works in very many cases.
“That’s a message I have, not trying to paint rosy skies to some extent on cancer diagnosis.
“There is always hope, and it depends on the circumstances. Chemos are becoming much more targeted, much less invasive.
It must be life-affirming to have been through this, but sobering to have met others who haven’t.
“I thank God for every day,” says Ivan.
“You hear this thing, a guilt complex, and it’s real. I have the privilege of speaking to many people who are diagnosed with pancreatic cancer.
“A cancer patient can always have a deeper conversation with another cancer patient and maybe a doctor can’t. One is clinical, the other personal.
“I’ve had the privilege of talking to many people who you say aren’t here anymore, and you think, well, they’re much better people than I’ll ever be.
“For the past few years I have had the privilege of speaking to a gentleman named Robbie Brightwell who has been diagnosed with pancreatic cancer.”
Robbie was captain of the Great Britain team at the 1964 Olympics and his wife was Anne Packer. She won a gold medal in the 800m and a silver medal in the 400m and Robbie won a silver medal in the 400m relay.
“Although I never met him, I had a telephone relationship with him for more than two years. Robbie died two months ago,” says Ivan.
“He phoned me to inspire me and talk about different Whipple procedures and I walked out thinking I was inspired to talk to him.
“It was a complete reversal of roles. This guilt complex, although I don’t try to dwell on it, has an impact.
In June 2021, Ivan was awarded an MBE for his services to charities and the community in Northern Ireland, an honor he dedicated to his mother.
Although he initially thought it was a prank – sending the Cabinet Office email to his bin – he hopes the award can open doors for further knowledge and development.
“I really thought I had two choices after my cancer experience. Either I would put all of this behind me and do nothing about it, or I could bring the lessons of what I had experienced in the field of cancer by talking to other cancer patients with lived experience, from patient to anyone, and also to help the medical profession better understand the world of a cancer patient from a human perspective.
“My mother’s mantra, it was an easy choice for me to do the latter, to try and do what I could.
“I can’t imagine anyone going on this quest, okay, if I do, in 20 years I’ll get an MBE. If you do, you’ll probably be disappointed because someone will will take care of it.
“To say that I had expectations of getting an MBE, they just sucked.
“Whatever I was trying to do and be involved with these cancer charities and other charities, I do it because A, I like it and B, you’re trying to do good. You only go through it once; if you can go through it to help people, so much the better.
It’s like, shall we say, the icing on a cake you’ve already baked.
“I want to use the MBE in any way it opens doors to help move forward even more.
“That comes with credibility and that credibility should be used in the right way to do exactly what I tried to explain, to talk to these politicians,” he says.
“I am aware that various things are happening behind the scenes. The cancer control strategy is one of them and is the result.
“There is another review event going on called General Surgical Review.
“The aim is to ensure, in a way similar to the cancer strategy, that the best elective and surgical care is made available to patients, regardless of their postcode.
“It’s common to both strategy/review and cancer strategy, that if you have a BT9 or somewhere so far west of the province, your experience should be the same and that is absolutely not at this minute.”