Despite the distance and language barriers, the last 25 years have seen UK-based ostomy support groups, working through the Romanian Ostomy Patients Support Foundation [ROPSF], forge close ties with Romania. This has been of considerable help to ostomy patients in the country. Despite improvements to healthcare during this time period, Romania remains one of the poorest countries in Europe. This can make life with a stoma challenging and provides a compelling reason for ROPSF’s continued work supporting Romanian patients, their carers, nurses, doctors and surgeons.

When ROPSF began, its work the situation in Romania was truly heart breaking, with patients even lacking ostomy pouches. ROPSF helped address this by sending to some of the main hospitals surplus pouches collected from UK patients, stoma care departments and appliance manufacturers. In those early years, many thousands of parcels were dispatched. As you can probably imagine, just getting a few pouches was a godsend to patients. Time and again the value of what we were doing and the improvements it was making to people’s lives was re-stated by the stories we heard. On one occasion an elderly man broke down in tears as he thanked ROPSF. Previously housebound, the pouches we were able to supply, allowed him to leave his home and give his daughter away at her wedding. Today, the situation is greatly improved. Thanks to pressure from ourselves and other organisations, patients now have sufficient pouches to last them from one prescription to the next, albeit that they still don’t enjoy the same choice as we do in the UK.

Lack of ostomy pouches wasn’t the only problem in the early years. Another was the absence of a state benefit system. With no welfare or financial safety net to fall back on, people were reluctant to seek medical help if this risked the loss of a wage earner. The prognosis for patients with bowel cancer was therefore all too often bad, leading to poor survival rates. This in turn had implications for the aftercare that was available to ostomy patients and the sorts of things that we take for granted, such as patient-to-patient support. Thankfully, much has changed and again ROPSF has been able to play its part, both in supporting patients’ rights and in setting up patient support groups in several of the major surgical centres. We have also been at the forefront of encouraging greater team work between surgeons, nurses and, where possible of course, the patient.
A lack of specialist training for nurses on colorectal surgical wards is, however, an ongoing problem. This stems largely from the fact that neither the Romanian nursing body nor the Romanian department of health, recognise stoma care as a speciality. Again this is an area where ROPSF has been able to help and, indeed, develop a degree of expertise. Over the years, and with the encouragement and support of the country’s more progressive colorectal surgeons, we have delivered training to many Romanian nurses in stoma care. We were therefore delighted when Hospices of Hope, a UK charity who have been working in Romania since 1992, requested our help training their nurses.

In November 2019, after much planning, the ROPSF trustees’ team of senior nurses left Heathrow bound for the Hospices of Hope Casa Sperantei Hospice in Brasov, Romania. And, thanks to a kind lady at check-in, a slightly overweight bag stuffed with stoma products for the Romanian nurses (to use both as teaching aids and in clinical practice) was allowed on board without extra cost! If that wasn’t enough of a good omen, our nurses were greeted by pleasantly warm weather as they landed; a welcome relief from the freezing cold weather they had left behind in London.
The core aim of the teaching was to give the Romanian nurses a better understanding about caring for a person with a stoma. Prior to the UK team’s arrival, participants completed an online workbook. The face-to-face teaching employed a variety of teaching techniques both to take into account the different ways in which people learn and to keep everyone alert during the three very intensive days. This was especially important given that both the workbook and teaching was in English. Indeed, the group of nurses was selected not just for their interest in stoma care, but also because they possessed a good level of English language. The latter was evident when the workbooks were reviewed and certainly made life easier later on, when covering topics such as anatomy and the physiology of the gastrointestinal tract. The teaching was also supported by a Romanian nurse expert, who was able to help with translations and presentations where necessary.

The opportunity to share knowledge was made all the more enjoyable for the UK team because of the enthusiasm and willingness to interact shown by the Romanian nurses. It also helped to fill the team with confidence that the teaching they were delivering would be less likely to get lost in translation when those attending passed on what they had learned to colleagues less proficient in English. Although the choice of stoma products is more limited in Romania as the funding differs from UK, the care needs of the patients are similar. This of course means similar demands from a nursing perspective, which again helped things to go smoothly. As you would expect, feedback received was vital in evaluating the training. Comments in the pre-course workbook included “it was really helpful” while the face-to-face sessions were described as useful because, “I’ve learnt new techniques.” Some nurses were also inspired to learn more about stoma care “I really want to read the book and sources on-line” others felt that they had learnt more about “nutrition” and received “more information on complications” with one person rating the resources as 5*.

There will be follow-up course in 2020, involving nurses who have an interest in stoma care but who are not so fluent in English language; indeed, it is expected that there will also be nurses from hospices in Moldova, and maybe Serbia and Albania (all of which are countries helped by Hospices of Hope).  This will be a challenge… but all involved are looking forward to the next trip helping to educate the Romanian and other Eastern European nurses.

ROPSF can trace its roots back to 1995 and work started by the Ileostomy Association, in conjunction with Colostomy UK (at the time called the British Colostomy Association). Looking back, it is pleasing to think of the enormous progress that has been made. In 2020 patients in Romania, both young and old, are now far more likely to return to a better and more productive life after their stoma surgery than ever before.  However, there is still much more to be done before Romanians enjoy the level of aftercare standards achieved in Western Europe. By the time you read this article a new Romanian patients’ website will have gone ‘live’ which we hope will be another step towards removing those feelings of ‘being alone’ by providing a mechanism through which patients can share their thoughts and experiences. More recently ROPSF has been encouraged by the Romanian Ambassador in London talking about the need to conduct research, looking at the ‘Quality of Life’ for those in the country with a stoma. Our hope is that such a project might lead to ROPSF facilitating a collaboration between a UK and a Romanian university. Without doubt, research of this nature would have the potential to benefit enormously patients and their carers in the country. But, of course, such a project needs funding. If you feel able to offer even a little financial support ROPSF would be deeply grateful.

[Romanian Ostomy Patients Support Foundation is a registered charity [No.1082342] in which the trustees all give their time for free. But the charity can only exist and help others with sufficient funding. As such we need financial support if we are to continue to survive and serve the less fortunate ostomy patients in Romania. You can make a donation by post to: ROPSF Office, Forest Lodge, Glenmore Road, Crowborough TN6 1TN or by electronic bank transfer: <span style="color: #ff0000;">Sort Code 60 06 27 Account No: 51638495</span>

First appeared in Tidings Winter 2020 edition