Ordinary people can unwittingly cause extraordinary change. In the week before Christmas, 13 pensioners from Cork and Kerry travelled in a minibus over the porous border to Belfast for cataract surgery.
Their options were:
- Continue suffering and wait in line for months, maybe years, in the public patient queue
- Use health insurance, if they had it, or fork out the cost of instant treatment as a private patient
- Or avail of their little-known rights as EU citizens to access a measure called The Cross-Border Directive and use it to fund their badly-needed care.
Need and good sense sent them up the motorway to Belfast.
In European terms, Ireland is a minnow, a tiny island on the periphery, next stop America, home for just 1% of the EU’s population. Luxembourg is little more than a dot - population half a million. But just as it has provided the current president of the European Commission, Jean-Claude Juncker, it is the home of two families who have made a crucial contribution to the principle of cross-border healthcare entitlements.
In the 1990s, Luxembourger Nicolas Decker travelled over the border to Arlon in Belgium for glasses. Raymond Kohll arranged orthodontic treatment in nearby Trier in Germany for his daughter. The families sought reimbursement from their local health provider.
When their request was turned down by the authorities in their home member state, they initiated a legal challenge that eventually ended in the EU’s most powerful legal arena, the Court of Justice. It backed them and that binding Kohll and Decker ruling has provided much of the legal basis for subsequent advances in EU cross-border healthcare.
As I was working for RTÉ in Brussels at the time of the Kohll and Decker judgment, I reported on the story. The information helped me access life-saving care in 1998. Four years before, in a Belgian hospital, I had been diagnosed with a rare form of cancer involving tumours of the neuroendocrine (hormone-producing) system. Fortunately for me, a caring friend convinced me that the care I was subsequently receiving wasn’t sufficient to prevent me from dying prematurely.
The issues teased out in the Kohll and Decker saga helped shape an EU measure called the E112 Directive. It set out that if a patient is not getting access to a procedure in a timely fashion, and that procedure is available in the public system of another EU member state and is cost-effective and meaningful, then a patient is entitled to access it. Crucial to the arrangement is the principle of prior authorisation - the procedure has to be recommended by a clinician (consultant) in the applicant’s home member state and authorised in advance by its health authority (then a Health Board/now the HSE).
In 1998, I brought the E112 Directive to the attention of a kind surgeon in Sligo, Peter Morrison. He had never heard about it before. He studied the explanatory documentation and signed my application form. The then relevant health authority, the North Western Health Board, approved it and I had in place the means to travel to an endocrine oncology unit in Uppsala, Sweden, and access treatment, exercising my right as a European citizen.
In 2002, I made an RTÉ television documentary ‘Europe, Cancer and Me’ to share information about my experiences of the E112 system. Peter Morrison was cold-shouldered by some of his colleagues at the time. They felt that all the necessary expertise for patients like me was available in Ireland and it was, in a way, "letting down the side" or "reducing resources" of the State’s health service by encouraging patients to travel abroad.
A properly sanctioned E112 form is in effect a signed cheque, brought by a patient to the foreign hospital where s/he is about to receive care. Over the years, use of the measure by Irish patients increased. Often it was to travel to the neighbouring jurisdiction, the UK - a much larger country, with a greater tax base, more elaborate services and because of its population, more experience in dealing with even rare illnesses. Sometimes E112s were issued for children, who were accessing complex procedures in the specialist unit of a major hospital in a UK city.
The E112 provisions have an inbuilt weakness that often caused difficulty. A patient is eligible to pursue permission to travel abroad if s/he is experiencing "undue delay" in the home member state. Deciding what is "acceptable" as opposed to "undue" delay is an inexact science. An administrator, attempting to exercise control over limited financial resources, may see things differently than an applicant, worried about a health problem and unsure what the future holds.
I availed of the E112 facility to access treatment several times. In Ward 78B on University Hospital, Uppsala, I received some further, very practical education about European healthcare because, over the years, I shared wards with people from a number of countries and indeed continents, all fighting to stay above ground.
Starting in the late 60s, the Swedes in Uppsala developed an expertise in dealing with neuroendocrine cancer. The Irish were amongst the most numerous in the cohort of their foreign patients. In contrast, the health authorities in our nearest neighbour, the UK, had an aversion to sanctioning expenditure under the E112 system. Their attitude was that they have the appropriate expertise within their own borders.
David Byrne served as Ireland’s member of the European Commission from 1999 to 2004. A former Attorney General, he was given the Health and Consumer Protection portfolio in Brussels. It’s a little known truth that he was the one who initiated the creation of an even more powerful version of the E112, the Cross-Border Directive. The life-enhancing cataract surgery accessed by that minibus of Cork and Kerry patients in Belfast last month can be traced directly to the work of David Byrne.
It took years for his proposals to work their way through the EU’s decision-making machinery. But, in many ways, the wait is justified because the result amounts to a liberating, revolutionary series of possibilities for European citizens, Irish ones included, who are dealing with health issues.
There are a number of highly-significant advances included in the Cross-Border Directive. The signature/support of a (clinician) consultant is not required. Authorisation by the health authority (the HSE) is not mandatory. And the procedures may be accessed in the private as well as public systems of another member state.
The HSE, the Department of Health and successive health ministers have actually embraced the Cross-Border Directive. There is a website, listing the budget available for different procedures. The set figure, for a hip replacement is €10,931, the estimated "going rate" in Ireland; if a patient gets the work done cheaper in another member state, the lesser amount is reimbursed.
A downside is the patient must first pay the amount and get reimbursed by the Irish authorities after the production of valid receipts. If the Credit Union organisation, flush with cash reserves, or the banks, desperate to repair their damaged image, had a whit of imagination, they would see that the Cross-Border Directive offers them the opportunity to engage with a cohort of customers in a mutually beneficial way. They could introduce a scheme, on a national level, advancing users of the Cross-Border Directive the up-front cost of their procedure, knowing the expenditure would be reimbursed by the HSE. Appropriate safeguards for the lender, reasonable costs for the short-term loan and prompt reimbursement by the HSE would be pre-requisites for such a scheme.
For Irish patients, waiting, worrying and often suffering because of the lengthy waiting lists in the Irish public system, the Cross-Border Directive is a godsend.
Some of the downsides are the inconvenience involved in travelling to another member state. The travel and non-hospital accommodation costs. A comprehensive range of procedures, affecting a wide range of conditions, is covered by the directive. The relevant website is here.
The budget set for different procedures by the HSE/Department of Health is usually able to cover the full cost of the work in another member state. One reason for this is salaries within the Irish system are, in EU terms, high. And as labour costs are a major component of health delivery costs, it is relatively easy to access procedures elsewhere at or below the "Irish going rate".
My RTÉ colleague, Cian McCormack, last year told the story on Morning Ireland of an Irish woman who had two ceramic hip replacements carried out at a Paris clinic under the Cross-Border Directive. There is a growing trend of Irish patients travelling to EU member states in eastern Europe where wages are lower but with proven expertise in health care delivery.
Sometimes the healthcare area is difficult to fathom. The Cork and Kerry cataract patients had their work done in a Belfast private clinic. But compared to south of the border, Northern Ireland has very little private health insurance or private practice as Northern Ireland citizens, rich and poor, have been reared on the NHS, free at the point of entry, access based on need, free GP and free prescriptions system. The waiting lists in Northern Ireland’s public NHS system, are now becoming a mirror image of the situation, south of the border. And as with the UK’s history of under-usage of the E112 system, there is no campaign in the UK, Northern Ireland included, to inform patients of the right to access health care abroad, under the Cross-Border Directive.
Treatment received in Sweden, involving procedures not available here, has kept me alive. At some stage in the future, I may be referred there again. But in recent years I have repatriated my care and my trust. The endocrinologist Dr Donal O’Shea has influenced that change. It was he who sold me the vision that medics and patients could work together towards the development of an Irish version of the Swedish model for patients with neuroendocrine cancer.
Professor Dermot O’Toole was appointed National Lead to launch the Centre of Excellence for NETs patients at St Vincent’s Hospital in Dublin in 2009. He’s an able, Carlow-born gastroenterologist who came back from France to take on the role.
At the time of my diagnosis 24 years ago, patients with Neuroendocrine Cancer (NETs) were sometimes falling into the cracks within the Irish health system. It is a rare condition, difficult to diagnose and even when that happened, sometimes the appropriate care was not delivered. For people like me, the Irish system has been improving exponentially for several years. In its most aggressive form the disease ends a life: if the dogs continue to doze, it requires ongoing monitoring and treatment but, crucially, the instances of Irish NETs patients dying needlessly early have been significantly reduced.
Four years ago we formed a support group for patients and their families. The Netpatient Network holds an annual one-day seminar, usually in Dublin, on the second Saturday in November. The consultants who form the Multi Disciplinary Team at St Vincent’s Hospital always attend. Their colleagues with an expertise in the disease from the likes of Cork and Galway also participate. So does the HSE manager who runs the Treatment Abroad Scheme, the Director of the National Cancer Control Programme and an expert from the Endocrine Oncology Unit in Uppsala.
Year after year, they turn up, without fail, free of charge, in their private time. For those challenged with what is a chronic illness, the day is a life-affirming event, when worries and experiences are aired, sure that the best available knowledge and expertise will be offered in response. Two months ago a dear pal, Colm, talked about this "Co-Operative" during what we knew would be our last conversation. He was only in his mid-40s, he had fought like a lion and he was grateful that, in recent years, at home and abroad, everything that could be done had been done to give him precious time with his loved ones.
In June, the Minister for Health Simon Harris was the guest of honour when St Vincent’s was formally confirmed as one of the 39 centres for NETs treatment in the EU. Using the E112 system, patients using the Dublin centre are sometimes referred to hospitals in places such as Uppsala and Rotterdam for procedures that are currently not available in Ireland. The working relationship between Irish consultants with an expertise in the disease, their colleagues in other EU countries and the HSE as a facilitator is consistently impressive.
However, significant flaws continue to surface in the system. St Vincent’s is part of an Ireland East Hospital group. Sometimes NETs patients being treated in one of the group’s six other centres are not referred to the National Centre of Excellence. Hospitals outside the Ireland East group often fail to automatically refer patients to St Vincent’s for what is their best hope of the appropriate care. At best, it is a glaring example of unacceptably poor communications. At worst, it is a case of turf wars. The result is patients are short-changed. The person in charge of the Oversight and Delivery of Cancer Care services, Dr Jerome Coffey, Director of the National Control Programme, acknowledged and criticised the significant failing at a public event last June.
The off-stage tussle between the HSE and the Irish private health insurance companies is an ongoing saga, dominated by subtlety. If a patient, seeking treatment abroad, has private health insurance, should it have a role in covering costs? On occasion in the past the unfortunate patient, preoccupied by the desire to stay alive, often had to take the central role, trying to see which of the two reluctant parties, would blink first and reach for the wallet. But in more recent times, there seems to be some discreet truce between the pair, which eases the stress on the patient.
Ombudsman Peter Tyndall recently produced a report on his examination of the operation of the Treatment Abroad Scheme. I read it with interest but based on experience, cannot concur with some of its observations about the HSE. The E112 provision, in its construction, is clumsy and cumbersome. Accessing it and operating it are made difficult by that design flaw.
The Cross-Border Directive is not just an advance, it is a potential game-changer. It’s striking that successive Irish administrations have embraced it. The rationale may well be that if large volumes of people begin using it - and after all it is their right as a European citizen to do so - waiting lists in the Irish public system will be reduced.
(There may well be a case for private Irish hospitals and clinics to consider a legal challenge to the directive. It allows an individual to access care in the public or private system of another member state. It might be argued that this discriminates, unfairly, in an anti-competitive way, against private sector providers in the home member state. If the restriction could be lifted, patients would have the option of using their State-provided budget to access care in Ireland’s private system, with no cross-border travel considerations. The owners and managers of private hospitals have the money and the access to legal opinion to explore the merits of this observation.)
For those faced with a health challenge, EU citizenship provides one with options. Crossing a border - whether it involves taking a minibus to Belfast or flying to the UK, France, Poland, the Czech Republic - brings additional stresses. Finding the right centre to provide the appropriate care requires rigour. Ill-health does indeed bring additional worries and stresses for the patient and family members. It’s a lonely truth that ultimately you are often the best manager of your healthcare. When you are in that space, the Cross-Border Directive and the E112 are more relevant to your situation than Brexit.