Dialysis, the most common treatment for kidney failure, is one of the most all-consuming healthcare procedures there is. Most patients have three sessions a week, each lasting three to four hours.
Patients must plan their life around these sessions. And, things get more complicated when a patient wants to travel abroad, because they must arrange to have guaranteed access to a dialysis unit at the destination.
The number of people on dialysis is huge. In the US alone, this number stands at 468,000, according to US charity the National Kidney Foundation. It estimates two million people worldwide are currently receive treatment with dialysis or a kidney transplant to stay alive. And the numbers are rising.
Laura Gleadell, Managing Director of Freedom Dialysis, which organises holidays for people on dialysis, says it’s difficult to deal with many of the restrictions in life, such as those related to diet. “You have an illness where you are going to have such a harsh regime of four to five hours a session, so it pretty much takes up your holiday,” she said.
Many don’t chance travelling because of the logistics of organising dialysis. “A lot of people weren’t travelling with dialysis because they didn’t think it was possible,” she said. “We get people who haven’t been away for 15 years.”
Of course, there are other reasons. For example, many younger people don’t work as a result of their illness, and can’t afford holidays. However, Gleadell says it’s also about confidence that they will be guaranteed dialysis at their destination.
That’s why there are a number of providers of holiday dialysis, in a market that has been going for around 30 years.
Organisations have sprung up to help people find dialysis; from Freedom Dialysis to IDO in France, which offers packages from New York to Barbados, and information on proximity of dialysis services to hotels.
The market has changed quite a bit. For instance, the resorts that had dialysis suites included, in locations such as Croatia, have disappeared. Instead, holidaymakers must choose holiday cottages, hotels or even resorts within easy reach of a local hospital that has renal services. There are renal services available, for example, from Tenerife and Majorca to the Costa del Sol and Egypt.
But holidaymakers can’t just turn up. Renal services must be pre-planned and pre-booked before they leave home. The problem is, it is not so easy to find a regular slot for up to five hours every few days in many of these renal units. That’s because, certainly in Europe, they are usually part of an overstretched health system, and most slots are booked on a regular basis for local patients. Therefore, there is very little extra capacity for visiting holiday patients. And if there is capacity, it’s usually booked well in advance by the more organised holiday patients. That applies as much to patients who holiday within their own country as it does to foreign visitors.
Those who don’t organise holiday dialysis may be forced to travel to hospitals far away from their base, and to be dialysed as an emergency patient
So stretched is provision in some areas, that it’s near impossible to get a slot at all. London, is pretty impossible, for example, say experts. And the Scottish Renal Registry, for example, says most renal units in Scotland are still heavily over-subscribed and while treatment is available for all residents who can benefit from it, that’s not necessarily the case for holidaymakers. “There is no spare capacity and haemodialysis for visitors must be arranged well in advance,” it said in a statement.
Flexibility is key
Because it’s so difficult to find renal slots, dialysis patients are often advised to be more flexible about their destinations. Some official NHS guidance recommends those looking for Dialysis Away From Base (DAFB) must book a minimum of four weeks in advance for trips within the UK and three months if outside of the UK.
Those who don’t organise holiday dialysis may be forced to travel to hospitals far away from their base, and to be dialysed as an emergency patient. There are numerous alternatives for holiday dialysis patients.
There are public hospitals that provide dedicated machines for holidaymakers in popular holiday destinations. Malta and Ibiza, for example, have done this. The problem is, there may just be a couple of machines available for holidaymakers. And given that only one person can be dialysed at a time, these machines can only manage a couple of people per day. That means they get booked up extremely quickly.
Within the UK, there is a swap database that enables holidaying patients to use spare slots, left by people who live in the area they want to holiday in, who have also gone on holiday.
Then there are private hospitals that have dialysis units – in big cities, for example. In London, the Royal Free Hospital has a separate dialysis unit called the Mary Rankin.
And, finally, some of these private renal units have been specially set up for holiday use. Perhaps they have a dedicated machine, for holiday patients, or even a dedicated floor. They are usually located specifically near popular tourist destinations.
Holiday dialysis units
One company, Da Vita, has renal centres in the Nevada desert, close to Las Vegas, 14 DaVita dialysis centres in Orlando near Walt Disney World, Universal Studios Orlando and SeaWorld Orlando, from LA to Atlanta.
In Greece, for example, the Mesogeios chain has units all over the country, including Herakleio Crete, and treats local patients as well as the large number of foreign renal patients. It’s a big unit, boasting a capacity of 160 patients and 40 machines. The company says every year it provides renal services to at least 700 visitors (Greek and foreign) with two dialysis rooms.
If patients are able to organise safe dialysis abroad well in advance, there’s no reason why they shouldn’t be able to travel
One company, Renal Services, offers holiday dialysis at Skegness and other destinations in the UK – from Newcastle to Salisbury. Another, Lakeland Dialysis, has a holiday unit in Cumbria in close proximity to the beautiful Lake District area. There are many of these organisations sprinkled throughout the UK, Germany and other countries. Both rely on people to put themselves up in accommodation nearby.
Some holiday dialysis units even provide free cottage accommodation – as is the case in Hampshire St Anne’s. Others opt for dialysis cruises, where they can access dialysis units onboard ships.
Here, patients can have dialysis onboard cruise ships. There are a number of cruise ships that provide this kind of service; Dialysis at Sea Cruises claims it is the largest provider of dialysis services aboard cruise ships in the world. It was founded in 1977. Cruise Dialysis, a UK firm, works with a number of cruise providers, including Celebrity, Royal Caribbean, Norwegian Cruise Lines, MSC ships and the Europa2. It would not say which dialysis providers it works with.
“The benefit of a cruise is that we can guarantee the standards of the dialysis unit and, unlike a land holiday, there is no travel to and from the unit,” said Lisa Parnell, Director of Cruise Dialysis, a UK firm. “There is no need for the patient’s travelling companion to accompany the patient to the dialysis unit, ensuring both the patient and companion make the most of their holiday.”
As might be expected, different units have different levels of service. Most are nurse led, stretched and busy. Others, in contrast, may feature a 24-hour nephrologist, or send a bus around the hotels to collect patients with dialysis appointments. Some provide menus and drinks. IMED Levante hospital, which has a dialysis centre in Benidorm, Spain, even provides access to Wi-Fi access, tablets and private TVs. Many of the cruises also feature on-board nephrologists.
An expensive business
But even if a patient is able to find spare capacity, the largest problem is cost. “It’s not the dialysis that’s the problem. It’s the funding,” said Yolanda Pickett Fernandez, Director of External Relations at IMED Hospitals, the chain of hospitals to which IMED Levante belongs.
That’s because if someone cannot find a space at the public renal service, the option is to go private. Some renal services are paid for by insurance schemes, reciprocal arrangements between countries, and via the European Health Insurance Card (EHIC), which helps patients to access state provided healthcare in all European Economic Area countries.
So, for example, the UK has a reciprocal health agreement with Australia which allows for free health services, including dialysis. And citizens of Belgium and Holland are usually able to pay for their dialysis via their national insurance, which covers dialysis in private units like IMED’s, said Fernandez. But citizens of other countries are reliant on different agreements that may not cover all of the private facilities. Some areas of Scotland will pay for a fixed number of dialysis sessions abroad per year, public or private, Fernandez said. But that is unusual for English NHS commissions, unless there is a specific agreement with a private hospital abroad. Some patients are entitled to a partial or full refund via the European Cross Border Healthcare under a European directive known as Article 56. It may only be a partial refund because many countries have set a renal tariff and will only reimburse to that amount if the cost of renal services abroad exceeds tariff. The reimbursement amount is about £150-£170 per dialysis session in the UK. “Not all patients get treated the same. Some hospitals pay and others don’t – if they come to a private unit they’d have to pay for it,” said Fernandez.
Of course, if a public health system tenders out some of their services to private hospitals then those patients can go to private hospitals providing dialysis using their EHIC (EHIC also reimburses to a lower rate than that which is charged usually by the private hospital, so often other services such as private transfer from hotels are not included).
Things are similarly complex onboard ships. “With regard to payment for dialysis sessions, providing the majority of ports visited are within the European Economic Area and the patient is from England, then NHS England will reimburse part of the cost. Different criteria apply for patients from Scotland, Ireland, Wales and overseas,” said Cruise Dialysis’ Parnell.
The gaps between reimbursement levels and the cost of treatment are also varied, but can be wide onboard cruise ships too, according to experts. “Providing dialysis onboard cruise ships is expensive due to staffing, logistics, supplies and insurance,” Fernandez said. “The cost of each dialysis session onboard ranges from around £250 to £480. Unfortunately, the EHIC is not accepted for dialysis treatments onboard.”
And even with space and funding arranged, patients also have to ensure dialysis is done safely. There is a risk of contamination from blood-borne viruses (BBVs) such as HIV, hepatitis C or hepatitis B and so it’s essential that units operate under specific protocols and safety procedures.
For example, there are several lines and other tubes that must be replaced between patients. Reusing of lines is totally unacceptable, said Gleadell of Freedom Dialysis. Her organisation vets units in order to determine whether they are observing such protocols. They often inspect units, and will not send patients to those they suspect may be reusing lines.
There’s also the issue of segregation. Some units segregate patients with these conditions so that they are using entirely different machines, rooms and even nurses.
Of course, there are national guidelines that units must stick to, but there is also an international standard, called universal precautions, that places certain conditions on renal units; they must isolate patients with hepatitis B. Segregating patients with hepatitis C and HIV is not mandatory, but many units do it anyway.
It’s hard to make generalisations about the quality of units by country. But, according to Gleadell, there are countries with exceptionally high rates of hepatitis – from Egypt to India – and patients should be extremely cautious about which units to select. For its part, the UK’s Department of Health suggests that the risk is low in Northern Europe, the US, Canada, Australia, New Zealand and Japan. It believes there is an increased risk of getting a BBV outside these areas.
Going on holiday with dialysis is down to good planning in the end, experts say. If patients are able to organise safe dialysis abroad well in advance, there’s no reason why they shouldn’t be able to travel. “Obviously people can live a very long and healthy life on dialysis, but it comes with a lot of restrictions. It shouldn’t be that difficult to go on holiday or to want to visit family and that’s what we try to make better,” Gleadell concluded.