Twenty years ago next January, out of the blue, I was diagnosed with cancer. It hasn’t gone away – a dodgy liver remains home to over 20 secondary tumours and I’m lucky as a black cat to be still alive.
The condition is carcinoid cancer – neuroendocrine tumours (Nets). We make up 2-3 per cent of the cancer population and 2,000-3,000 people in Ireland have the disease in some shape or form.
The tumours secrete hormones, like serotonin, which can play havoc with the system. Often the tumours spread, in secondary form, to the liver and gather there like dead leaves around a drain.
It can be a difficult disease for a GP to spot because of its relative rarity and the general nature of the symptoms – stomach pain, loss of appetite, diarrhoea and (in some cases) flushing.
Many cancers have a set path – diagnosis, treatment and either the “all clear” or death. But carcinoids tend to follow a different pattern – the trick is to control the spread of the disease and the impact of its symptoms. It is a chronic condition and often the mental challenge of coping with that reality is as significant as the physical battle. Sometimes the disease is relentless.
Jim Mitchell, the former Fine Gael minister, fought bravely but lost his battle. Steve Jobs, the founder of Apple, had a carcinoid primary in his pancreas and he also died from the disease.
Over the years I've had lots of bits taken out of me. But for the expertise available at a centre of excellence in the Endocrine Oncology Unit of the University Hospital, Uppsala in Sweden, I would have been dead long ago.
The Swedes have an international reputation for dealing with the disease; at different times, through surgery they removed a hard-to-get-at tumour from my mesentery area and took out a substantial section of my gut. In another phase they treated my liver with four belts of a radioactive isotope called Lutetium.
More recently they scoured my liver, in a process called radio embolisation. And in a further episode, one awkward liver tumour, refusing to behave, was burned off, using a process called radio-frequency ablation. Once a month I require an injection of a product called Sandostatin to counteract the worst of the disease symptoms. I try to avoid painkillers.
Treatment in Sweden
Dozens of Irish patients have, like me, availed of our rights as EU citizens to access treatment in Sweden under the E112 system.
One is entitled to access cost-effective, useful services, not available within one’s own country in a public hospital of another EU member state, provided one has the prior authorisation of the health authorities (HSE) and the recommendation of an appropriate consultant.
But last November I opted to put my trust and my life in the hands of the Irish healthcare system.
For a number of years a group of clinicians, led by the endocrinologist, Donal O’Shea, has been trying to establish an Irish version of the Swedish model.
In that aspirational space, we formed our own Nets patients group and for a period of years we’ve had quiet conversations with a whole range of interested parties. Susan O’Reilly, Tom Keane’s successor as director of the National Cancer Control Programme, has been very supportive. So, too, is the Treatment Abroad Scheme of the HSE.
The upshot is that last June a gastroenterologist called Dermot O’Toole was appointed lead clinician for the new Nets services, operating out of St Vincent’s Hospital, Dublin.
In a way it’s a revolutionary move because he is a St James’s-based consultant, running clinics out of St Vincent’s – co-operation involving two hospitals and two universities.
In Vincent’s, key consultants such as Justin Geoghegan (pancreatic surgeon), Donal Maguire (liver surgeon) and other clinicians are enthusiastic supporters of the initiative. Doctors in other Dublin hospitals are part of the network, as are their colleagues in places like Galway and Limerick and crucially, in Cork, consultants including Derek Power (oncologist) and Criostoir O’Suilleabhain (surgeon) have also bought into the new template.
Dermot O’Toole is the ideal person to front the new services because, at international level, he is a “star turn”. On two separate occasions when togged out for surgery in Uppsala, a Swedish consultant asked “Have you ever met an Irish doctor called O’Toole?”
I didn’t think I would still be alive, almost 20 years after my diagnosis and one Swedish doctor, familiar with my physiology, jokes about me “doing wonders for their survivor statistics”.
Nor did I imagine that in the middle of this awful recession when health services are in the firing line, genuine improvements in the level of services for Nets patients could still happen.
Two-tier health service
I remain passionately opposed to our two-tier health service. I'm ashamed of what it creates in terms of wastefulness, confusion and the relationship nurtured between size of bank balance and quality of care.
The recent tinkering with the system was akin to trying to straighten the leaning tower of Pisa with a blowtorch or hammer.
Following the second World War, British society was ripe for Bevan’s National Health Service model and its spine of egalitarian values.
After the brutal lessons of recent years Ireland has a new hard-earned interest in fairness. I would love to be redirecting my health insurance payments into a single-tier, comprehensive State-run health service built on the principle of access based on need.
Nobody in State-funded activity – be in the health service, banking or broadcasting – should seek to be paid more than a taoiseach.
In all the hours of spin and analysis before and after the budget there was no mention of the EU’s new Cross-Border Directive. It was due to be implemented by the Government in October 2013 and that has been postponed until next January.
The directive offers patients a whole new set off possibilities on how to access care in another European member state. Any smart lawyer with an interest in developing a new line of business would do well to study the initiative.
My view is this EU measure Cross Border Directive has the potential to empower patients and hopefully, in a dramatic new way, it will act as a driver of change within the Irish health service.
The €5 million set aside in the Estimates may prove an under-estimation. In practice, the directive may not just lead to individuals in Border areas crossing to Northern Ireland to access services with the bill going back to the HSE; there is credible evidence of Irish patients on long public waiting lists for services lining up for readily available, cheaper procedures in mainland European countries and ready to travel there once the directive goes live.
In the meantime, one gets on with the business of trying to stay alive. The engagement with people from all levels of our health service, who are starting to craft for Nets patients an Irish version of the Swedish model, has been uplifting.
Within what is a basket-case hybrid (far too much Boston and not enough Berlin), the compassion and doggedness of the staff – officers and foot soldiers – are inspiring.
In chats with my dear friend and colleague, the late Colm Murray, we often remarked that awareness of mortality encourages you to do the best you can in the time you have. My experience of the Irish health service is it has a decency that has not given in to dysfunction.
Tommie Gorman is Northern Editor of RTÉ