A team from our Gascony association are making regular visits to patients at the Oncopole cancer research centre / hospital in Toulouse.
Early days
It was during a rendez-vous at Oncopole (a cancer research centre) six or seven years ago that I was thinking of my own experience of cancer treatment and those many ‘chemo days’ when my wonderful professor or one of the medical staff would pop their head into my room and plead that I go and chat to an English-speaking patient down the corridor to try and cheer him or her up which of course, I did, complete with drip in my arm. I pondered why not form a sort of ‘blouses roses‘ team within the Oncopole to help those patients?
And so the Cancer Support France (CSF) visiting team was put into place in 2017, with the help of our President and our Représentante des Usagers (one of the civilian ‘watch-dogs’ at the cancer center, present in French hospitals since 2002). Once the idea was approved by the staff person liaising with associations, appointments were set up by the person responsible for patient / family relations with the head nurses in all of the services. Our President and two Cancer Support France colleagues went together to meet each one, introducing CSF and explaining the project. We were met with great enthusiasm and a first small group of volunteers began making weekly rounds.
How it works
For each visit we call on all the treatment centres / nurse stations asking the nurses on duty whether there are English-speaking patients. On some days, there are merely one or two, on others as many as five or six. Some days are very cheerful, others are heartbreaking. The nurses in each service area have a contact number if our support is needed between weekly visits. We sometimes have to remind people that it is for English-speakers (Anglophones) and not just British people.
A team of two volunteers coordinate the rota and maintain a spreadsheet from weekly volunteer reports to keep track of ‘vital statistics’; how many patients / family members are seen (and who they are), over how long a period, in what service, what support was / is to be provided, and comments. For example, since January 2022, nearly 70 patient visits have taken place.
CSF volunteers making the visits are trained Active Listeners and receive further training for this specific activity from volunteers already on the rota in a buddy system to ‘learn the ropes’. This is invaluable to enable the newbie to become accustomed to the environment and its orientation (Oncopole is an ‘immense ship’). It should be noted, nevertheless, that however good an Active Listener is over the phone, or for accompanying day appointments to the Oncopole, not everyone can cope with a really tough face-to-face visit… and they can be really tough. As noted, it is nothing to be ashamed of, and I believe this should be pointed out to all Active Listeners before they start visiting. Another interesting thing to note, particularly as our presence is now so well-known at the Toulouse Oncopole, is the number of times we are asked by the medical teams whether we also speak other languages – German, Russian, Georgian, Portuguese, etc. Some of our volunteers do speak languages other than English and French; their skills are welcomed and sought after.
However, it must be stressed that although we offer ‘language suppor’, we are not an official translating or interpretation service – we are not covered legally for such and there is, anyway, one in each hospital. We are there to make sure that patients understand what is going on and to support them and their families as needed.
As an example, a CSF Oncopole visitor was once asked to translate during a telephone call with a doctor in the USA. The conversation, about a new treatment for a patient, contained a lot of medical terminology. Luckily she was able to call another colleague who is a native French speaker to help out. So, we strongly agree that it should be highlighted that we are not translators; a mistake could cause real problems.
To be able to act as a CSF visitor, it is essential that the volunteer’s French language capability be good enough to converse with the medical teams – good enough to listen to the ‘sous-entendus‘ – and respond in a similar vein when discussing or talking with a patient.
Just sometimes, we come across a ‘new’ medico on the block, who will assume we are there to help merely with the understanding of French, and will sometimes be dismissive of our offer of help, “as the patient speaks good enough/excellent French, and my English is OK”, so it is necessary to explain our wider support as well.
Visits can be made individually or as a pair with the Buddy system. This has meant that someone not confident in the language can team up with a confident speaker, enabling them to volunteer, and visit. As we have learned over time, the visits can be tough and emotionally draining. Being able to talk together, vent and unload in the car going home or over a coffee afterwards helps a lot to process the emotions.
All of the nursing / care stations have the National CSF leaflets, together with the central telephone number, so they know how to make contact if necessary.
Preparing the future
Time will tell but on a local level, the Toulouse Oncopole draws patients from across Occitanie and beyond, so the potential for action should always be there. More and more Active Listeners are interested in contributing, so more frequent rounds may be envisaged. CSF has definitely become a known player in patient support and has drawn attention to language and cultural needs in patient care.
Some feedback
“First let me thank you for letting us ‘unload’ on you yesterday. It was something of a relief to find an English-speaker to vent [on]”.
“Thanks for thinking of us and for your advice”
Final note
I would like to thank our wonderful team of Active Listeners who have made this work possible, and continue to support English-speaking people who attend the Toulouse Oncopole.
Jayne Ray, President CSF Gascony – March 2023
