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Cancer diagnosis, what now?

Oncology access points to welcome and guide patients, families and caregivers

Teresa Gamucci

Director Oncology UOC (Complex Operations Unit) Rome 2 Local Health Authority (LHA)

By June 2021July 27th, 2021No Comments
Photo by Lorenzo De Simone

A cancer diagnosis or suspected diagnosis can be a sudden shock for patients and for their entire family or community. At the beginning the most anxiety provoking and difficult part is dealing with the burden of such a destabilising diagnosis, which is usually followed by a series of unanswered questions. What should I do now? Where should I go? Who is going to take care of me? What route should I take to receive adequate care- ideally the best there is out there? Patients are usually disoriented and scared at this stage and do not know who to turn to- whether to contact their family doctor or go to the A&E. They often make appointments to see specialist after specialist. They waste time and- quite often- a lot of money as well.

Putting yourself in the shoes of a person who is suddenly faced with an oncological condition- even though the diagnosis might need to be confirmed- helps you see the need for a network of oncology access points whose specific function is to welcome patients, provide information and refer them to the correct route to get diagnosed/treated based on their individual case. A proximity-based management model requires a shift in focus, from the condition to the patient, and the guaranteed presence of access points that walk with oncology patients and support them closely.

A proximity-based management model requires a shift in focus, from the condition to the patient, and the guaranteed presence of access points that walk with oncology patients and support them closely.

Meeting needs

The historical oncology network based in Piedmont- the first network model of the country- is already equipped with these referral centres- dedicated to patients with a suspected or confirmed cancer diagnosis. They are called CASs (Welcome and Support Centres). They provide information and advice to patients by helping them access the route to get diagnosed and anything else they or their family might need in terms of psychosocial support. The oncology network of the Campania and Lazio regions are also trying to develop a similar system. In Italy there are different examples of good working models but they are spread around in a non-homogenous manner. The objective should instead be to establish oncology access points throughout the Country, as emphasised in the report of the Observatory for the Monitoring and Evaluation of Regional Oncology Networks conducted by the AGENAS, the National Agency for Regional Healthcare Services.
Any hospital equipped with at least one oncology department and one surgical ward should also have a referral centre that patients can access quickly and without bureaucratic hurdles. Here patients would find a team of experts comprising of a specialist doctor- an oncologist or an oncological surgeon- a social assistant that looks after the bureaucratic admin and a nurse. The nurse- expert in routes to get treatment- would collect all the clinical information and make the relevant appointments- in line with medical advice- for the most appropriate route, which might be at the hospital or at other oncology centres of the network depending on the specific case. Patients might be referred to a different oncology centre that specialises in a certain pathology. For example, not all hospitals are equipped to treat pancreatic or ovarian cancer because they do not get enough patients with these conditions. In such cases the referral hub would signpost the patient to a centre that has more expertise on the condition and would book an appointment for them.

Oncological networks depend on their referral centres/access points and should be assessed based on how effective these are and how they operate. It was observed that oncological patients and their families have a much more positive experience in regions where the access points are operational compared to regions where they are lacking.

The value of closeness

Oncological pathologies impact the entire family of the patient even during the diagnostic process. The patient is often accompanied to each medical visit and diagnostic exam by a relative or someone close to them, who also helps to book all the appointments. It is also for this reason that the access points should be widespread throughout the territory, so that they can be close to the home or location that patients reside in. Nowadays almost every hospital is equipped with an oncology department and this- even if it might be small- can become the referral centre/access point intended specifically for patients who need to receive initial support. The process leading to the diagnosis and to the treatment can take place in one or multiple different centres of the oncological network.

The challenges are quite minimal; we need a change in culture and in intention.

In theory the organisation of these access points/referral centres only requires a few financial and human resources. It would be enough to have a room where a nurse can be available- for a few hours per day- to answer the phone and see patients, even those who came without booking an appointment. If it is a big hospital facility then an oncologist and a social assistant should also be present regularly. IT platforms are essential for the functioning of the entire regional oncological network and access points. This aspect is poorly developed in Italy but the National Recovery and Resilience Plan aims to use the funds of the Recovery Plan to enhance it. The challenges are therefore quite minimal; we need a change in culture and in intention.

Once these referral centres/points of access will be operational it would make sense to design awareness raising activities and a universal promotional campaign for citizens as well as healthcare professionals and family doctors throughout the whole territory.

The best cancer treatments should be accessible to everyone, even those who do not have the ability or the instruments to identify it on their own. The oncology access points should become a determining factor to minimise inequalities for oncology patients.

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