Selected within the framework of an Inca call for projects, a team from the IUCT Oncopole in Toulouse has set up a tailor-made sector to treat people with disabilities. It could soon happen at the national level.

Accompanying a woman in a wheelchair for a mammogram, reassuring an autistic patient before a biopsy, planning the arrival of a sign language interpreter to assist a deaf person…

These are the objectives of this “disability and cancer” care pathway, which was launched in February 2021 following a call for projects from the National Cancer Institute (INCA) at the IUCT Oncopole in Toulouse.

” We have all experienced as caregivers, complicated care with these patients “, points out Béatrice Lucas health executive and project leader at the Oncopole.

Moreover, we often only discover their disability at the last minute, or their needs when faced with situations of exacerbated stress, leading to appropriate care. This is why we have set up this care sector in collaboration with the ASEI association (acting, treating, educating, integrating). »

This partnership between the care establishment and the association specializing in medical and social services has enabled everyone to get to know each other better and to cooperate. ” ASEI professionals needed better knowledge of cancer management; and we had things to learn about the expectations and needs of people with disabilities. On arrival, it is the guarantee of better continuity of care for these patients. “Summarizes Béatrice Lucas.

In one year, the sector has taken care of 50 patients, “ but the requests are increasing and we will probably have reached one hundred patients by the end of 2022 “, predicts Anne-Cécile Rouanet, the referent nurse of the sector.

To facilitate their charge, a specific telephone number and email address* have been created. ” They allow us with an inclusion questionnaire to organize the arrival of patients knowingly and according to their disability. “says the nurse.

” Indeed, a mammogram for a person in a wheelchair can take 45 minutes, instead of ten normally, so it is essential that caregivers are informed and prepared. Similarly, performing radiotherapy on a deficient or autistic person who cannot remain alone during treatment sometimes requires the provision of general anesthesia. “, she describes.

Training for better care

For the past year, the disability and cancer system has also enabled the development of a two-day training course jointly run by Oncopole and ASEI. It is aimed at both caregivers (liberal and hospital) and paramedics.

At the IUCT Oncopole, around ten people have already been trained: technicians, caregivers, but also pharmacists, psychologists and radiologists… Two other training sessions will take place next June and October.

A good practice guide has also been drawn up to anticipate reception and define the treatment methods; and today the establishment says it is already very aware of how to adapt to the specificities of certain disabilities.

” For example, we have activated for people with intellectual disabilities, already followed daily by speech therapists, a follow-up in speech therapy on D+1 after an operation. Previously we were not aware of the importance of this supportive care for them “, describes Anne Cécile Rouanet.

Last part, and not the least, of this Disability and Cancer device: the launcher of an announcement binder and communication tools in pictogram mode to facilitate patient understanding. Each service has its own boards: the day hospitalization service, full hospitalization…” In the end, the reception was unanimous and we realized that it could also be useful for many patients, for example an elderly, tired person… assures Anne Cécile Rouanet.

A pre-deployment assessment?

This support channel, unique to date, was therefore facilitated by seed funding of 50,000 euros granted by Inca.

One after its implementation, an evaluation is in progress this month of March before submitting a report to the INCA next June, and the question of its deployment in other cancer centers arises.

The Toulouse initiative was also encouraged and selected as one of the 15 most innovative experiences at the symposium “Improving access to health care for people with disabilities”, organized by the State Secretariat responsible for people with disabilities and organized last February.

” We are very flattered and moreover very solicited by other centers qualified for the same device, recognizes Béatrice Lucas. But for us, the urgent question now concerns the sustainability of the system. To continue we need these 50,000 euros per year and discussions are underway with the ARS and the CPAM. »

Beatrice Girard

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