Clinicians’,policy makers’ and patients’ views of pediatric cross-border care between Malta and the UK

Longevity and personal relationships

The Malta–UK bilateral agreement is grounded in longstanding historical links between the two countries:

“The key strengths of the service arise from its longevity and well established systems … … . The whole process is well oiled and well established.” (Policy maker)

Many of the Maltese doctors referring patients abroad spent part of their post-graduate medical training in the UK and are familiar with the British health care system. During their time in the UK these doctors invariably developed enduring professional and personal relationships with colleagues which form the foundation for the links with referral centers. The UK specialists endeavor to maintain a single point of contact in Malta, facilitating clear and prompt communication. They share new protocols and guidelines and, usually Maltese doctors are able to contact UK specialists directly via phone or email to discuss cases as they arise. Clinical decisions about referrals can be made promptly, as explained by one health professional:

“when you have enough numbers you can establish a well oiled service with established protocols and procedures and you can get to know the doctors at the other end very well.” (Maltese doctor)

This, together with years of fruitful working relationships, has established confidence and trust in the Maltese professionals:

“With overseas patients it always works better if you know who you’re dealing with at the other end. […] Even if you never met somebody personally but work with them over a distance over a period of time you do establish a good working relationship. And I’m sure that’s the most important thing really because you have to be confident in the referrals that you’re getting, and people in Malta have to be confident that we will deal with what’s needed and will send the patient back sorted.” (British doctor)

Maltese doctors are confident that their referrals will be dealt with swiftly; in fact urgent cases can be seen by UK specialists within 24 h although it usually takes at least 48 h if passports need to be issued. The main limiting factor for most referrals is bed availability in the UK but this is the same challenge faced by NHS patients in England referred to specialist tertiary centers.

Communication and data sharing

Communication between health professionals and patients is straightforward because English is one of the official languages in Malta and all health professionals and most patients and their relatives have a good working knowledge. When patients and their relatives do not understand English, UK health professionals are aware of the free interpreting service offered by Maltese Franciscan friars in London. Parents reported that the consenting process was clear and explicit in the UK and that they perceived a greater involvement in decision making with regards to their child’s care when compared to Malta:

“the best thing about the care in London is that our son is reviewed by a multidisciplinary team and they then discuss treatment options with us in a very candid way.” (Parent)

Full medical records are not shared between the two countries but health professionals can access relevant information through the electronic or physical exchange of detailed patient summaries, results of biochemical, radiological and pathology investigations. Health professionals communicate by phone or email and maintain an open dialogue about patients, keeping each other updated with developments. The initial referral will include a detailed patient summary and, every time the patient is seen in the UK, the Maltese clinicians are updated on the assessment, investigations, interventions and care plan, including follow-up, through a letter (patient discharge summary):

“When we arrived at the hospital the Consultant knew everything about my son’s case because the Maltese doctors had brought him up to date. I brought the case summary and investigations with me. They explained in great detail what procedure they were going to carry out on my son and why.” (Parent)

Shared care approach

The service is implemented using a ‘shared care’ approach, a model of integrated health care delivery based on collaboration between Maltese and UK health care professionals. Two interviewees explain that:

“these personal acquaintances then become care sharing opportunities. The shared-care approach is a multidimensional type of arrangement where a relationship with a hospital and a particular consultant is present.”

“[…] it works on mutual respect. Shared care has that as the basis. We recognise the Maltese team’s extremely good training and their good sound clinical judgment and the ability to produce really good data on echo.” (British doctor)

All the investigations and interventions that can be done in Malta are done there but when patients arrive in the UK they follow the same care pathways as NHS patients and are managed using the same protocols and procedures:

“From a practical point of view we don’t make a distinction between Maltese patients and UK patients, we’re able to give them the same treatment provided all the correspondence is in place from the Malta High Commission.” (British doctor)

The tertiary centers in the NHS adopt the same principles of shared care that they would with District General Hospitals or primary care providers in the UK, with an emphasis on good communication and accurate and timely transfer of information.

When patients return to Malta, the local clinicians ensure continuity of care, implementing the agreed care plan and follow-up as appropriate through out-patient clinics in Malta, visiting consultants’ clinics or planned reviews in the UK. The clinics are reported to be highly successful because the Maltese team prepare all the patients with up to date notes and investigations and the clinics are run jointly by the Maltese and British team, providing opportunities for learning and service development. The British clinicians expressed confidence that agreed plans would be followed by their Maltese counterparts.

Well established support systems

The health care provided is supported by well-functioning systems for transport, accommodation and communication. Patients have named contacts in Malta and the UK to help with logistics and staff often work beyond their job description, offering voluntary support to patients. A number of charities offer social, psychological and financial support to patients and their families who often have to rapidly come to terms with making an unexpected journey under difficult circumstances. There is often uncertainty around the duration of the patient’s stay and plans can change as the clinical picture evolves, so the system has to be flexible to accommodate this. The NHS also offers flexibility when booking follow-up appointments, which can be organized outside term-time so that children do not miss out on school.

Logistical challenges

The first time that patients travel to the UK for treatment they are at their most vulnerable, especially if there is uncertainty about the diagnosis, prognosis and expected duration of stay. As one interviewee put it:

“We did not know how long we would have to stay in London for, in these situations the treatment plan is decided on a day by day basis and everything depended on the outcome of the operation.” (Parent)

Although there are well established systems in place to support the organization of travel and accommodation for patients and their families, they often report being unsure of what to expect and the idea of traveling to a big city like London can seem daunting. Getting around on public transport with a small child is reported as being a challenge, particularly so when the child has limited mobility. Most parents interviewed reported that their employers were flexible and supportive, although there were concerns in cases of prolonged absence or when frequent travel was required. Parents were grateful for the subsidized accommodation provided by Maltese Franciscan nuns in London. Families attending GOSH preferred the hospital accommodation, whose location makes it more convenient and cheaper, but space may not always be available and only short stays are allowed. Some parents remarked that they were unaware of this accommodation until their arrival at GOSH. For non-urgent cases, there are occasional delays with obtaining follow-up appointments and those families who travel to England regularly become used to navigating the system and often communicate directly with clinical teams.

Financial challenges

Although patients and their carers do not incur any direct health care related costs they face costs related to travel and accommodation combined with potential loss of income. Living costs in central London can be very high, particularly for those families staying for a prolonged period of time, contributing to a significant financial burden. However, the patient group who tend to have the longest stays are the oncology patients who are able to access free accommodation in apartments near the hospital, which are run by the Puttinu Cares Foundation (a Maltese charity) and funded by the Maltese Government. In the long term, families can also face loss of income due to prolonged absence from work when caring for a sick child. As explained by one parent:

“when we came back after those 9 months in London we had used up all of our savings and we were in a very difficult financial position [….]. I was not able to work because I was constantly taking care of him and it is difficult to keep up a job when you have to leave at the drop of a hat.” (Parent)

The Maltese Government provides an allowance for meals for patients when they are no longer hospitalized but remain under review as an out-patient. The MHEC, TAS and MHC work closely with a number of charities that offer financial support to families, picking up some of the costs that are not covered by the agreement. They support all families who request help but will provide particular attention to those who are most needy with some assistance provided on a means tested basis. Patients with rare diseases may have more difficulty raising funds if a relevant disease-specific charity does not exist and some families take their own initiative to raise money through local communities and support networks.

Cultural and communication challenges

Communication with parents can be a challenge when they have just received a diagnosis of a serious illness and learned that they may be referred for treatment abroad:

“First of all the families are in shock about the diagnosis and the fact that they need to go abroad for treatment. They start getting information from lots of different sources. Malta is small and people are able to get connected easily. But this means that they may get conflicting information and messages and it can be a challenge to correct this misinformation and explain to patients/carers that … specifics of treatment for one case may not apply to them.” (Key informant)

Overall the NHS was perceived to be excellent at responding to patients’ and relatives’ cultural needs and there were numerous accounts of NHS staff going out of their way to support Maltese families. Maltese culture has the family at its core^13,14 and when patients are unwell the extended family comes together to provide support. This means that a number of relatives may accompany the patient and this is reported as sometimes being challenging for NHS staff to manage, especially when visitor policies are not respected. Another key challenge is around communicating the kind of NHS care that tertiary centers provide. Patients and relatives are often unaware that these centers do not offer a full spectrum of health care and that if their child needs emergency care then they may be referred to a different hospital, which can cause undue stress and anxiety. Inevitably there are different approaches to service delivery in the two countries and some parents report feeling worried when, for example, their child is discharged from hospital at what they perceive to be soon after an intervention.

Psychological challenges

The parents’ stories of the period leading up to their child’s diagnosis were all unique but equally difficult, full of uncertainty and anxiety. These emotions were heightened when the diagnosis was made immediately after the birth of the child, when both mother and baby are at their most vulnerable. Soon after coming to terms with the diagnosis the parents were then faced with the prospect of their child’s referral to the UK for further investigations or treatment. All the parents interviewed took this news in their stride, being aware of the provisions for rare illnesses and having full confidence that this was the best option for their child. Parents whose children were emergency transfers, sometimes with intensive care support, have a different experience to those less urgent transfers when families have a longer time to get used to the idea of the referral and to plan for practical challenges such as child care for family members left behind and obtaining approval for time off work. The stress about the uncertain outcome of the child’s treatment and the caring role that the parents may need to assume was reported by some to be overwhelming when combined with being in an unfamiliar place:

“In the beginning, the first time we went up, it was very traumatic, a very difficult experience for us. Thankfully the operation was successful. It took me at least 2 weeks to accept the fact that my son had made it and really alive and going to get better.” (Parent)

One of the biggest challenges for the parents is being away from family and friends, which can leave them feeling isolated and vulnerable. This combined with the significant financial pressures can sometimes lead to strained relationships. Several parents described long days spent at their child’s bedside with no reprieve and, in the absence of relatives, they often turn to health professionals for support. To a large extent the multidisciplinary teams provide psychological support for the family but, in some cases, parents are referred to a social worker or psychologist:

“We found support in each other and from the health professionals in the hospital whom we felt comfortable enough with to share our feelings.”(Parent)

“They welcomed us with open arms and we met so many incredible health professionals who were ready to support us with everything.” (Parent)