Appropriate and accessible local care everywhere, managed by properly trained healthcare personnel and caregivers, with high technological performance and finally tailored to the quality of life of patients and caregivers. This is the request of oncological and onco-haematological patients that emerges from the online survey on local medicine and oncology, promoted by 39 associations of the Group ‘Health: an asset to be defended, a right to be promoted‘, and conducted in collaboration with AstraRicerche, on over 800 patients and caregivers.
The pandemic has highlighted the shortcomings of proximity care for cancer and onco-haematological patients even more: inequalities in access to care, lack of connection between hospital and territory, obsolete and not very functional machinery, inhomogeneity in access to screening, tests and therapies and finally a lack of support for caregivers. The National Recovery and Resilience Plan is a great opportunity to redesign the assistance model on the territory, thanks to the over 7 billion allocated for this objective to which are added the over 4 billion made available by the European Commission for programs on oncology. But to heal the serious gap in assistance in the area and relaunch the National Health Service – underline the associations – the architecture designed in the Pnrr must be filled with personnel, training and innovative and ‘friendly’ technologies, taking into account the characteristics and needs of potential clients.
55.3% of patients ask for more telemedicine
The fulcrum of the new model of territorial assistance must be telemedicine, a fundamental resource – according to 55.3% of patients – to integrate the traditional visit, facilitate communication with the oncologist (43.5%) and reduce travel from one area of the country to another where possible (40, 2%).
What are the steps to make remote assistance fully effective? According to cancer patients, it is necessary to intervene on two fronts: on the one hand the completion and strengthening of the regional cancer networks (46.5%) to allow dialogue between the Regions with an adequate IT infrastructure, on the other hand theimplementation of the electronic health record throughout the country (40.9%) to make it the real access point for citizens to benefit from all the services of the NHS.
Another fundamental aspect is that in territorial assistance they are the pathways to access therapies and innovation are well defined. For 33.4% of the survey respondents, in particular, the training of the general practitioner is a crucial element on which to invest for an effective use of telemedicine, while for 54% of the interviewees the pharmacist and nurse of communities should be involved to facilitate home delivery and the intake of cancer therapy, under the supervision of the oncologist.
“National access to genomic testing and caregiver training”
To facilitate proximity oncology, patients ask full and uniform access throughout the national territory to genomic tests and personalized / predictive medicine to identify the appropriate therapies (46.9%), to the latest generation medical and diagnostic devices made available on a large scale and throughout the territory (42.5%) and to personalized medicine plans tailored to the individual patient (40.1 %).
A fundamental figure of a well-structured local oncology is the figure of the caregiver both informal (relatives / friends) and formal (caregivers / tutors) which must therefore be trained and supported. Half of the respondents (49.8%) would like the three-year fund for non-professional care activities to go first to the training of caregivers on assistance, therapies and devices. The courses should focus on pain management (43.8%), on the specific pathology in agreement with the hospital team (37.6%) and on the administration of therapies and management of home care (36.6%). In addition, to lighten the physical and emotional burden of the caregiver, it is asked to activate help-lines at uncomfortable hours (52.4%) and a constant connection with the psycho-oncologist and with the psychologist of the territory (44%).
Mancuso: “Government should take us into consideration on decision-making tables”
“Today we submit our requests to the institutions – he says Annamaria Mancuso, coordinator of the Group ‘Health: good to defend, right to promote’ and president of Salute Donna Onlus – to ensure that all cancer patients have appropriate and accessible treatments with high technological and innovative specialization on their territory. It is about concrete requests, ready to be implemented in the projects that will modernize our National Health Service because they are the requests of those who have experienced the disease or live it directly or indirectly through a family member “.
“We hope – concludes Mancuso – to be kept in greater consideration on decision-making tables since our experience in the field is a precious contribution, I would add it is an indispensable contribution, for a real modernization of the National Health Service”.