Is our National Health Service – NHS really a bastion of health for all citizens? On closer inspection it would seem not, especially if you look at the situation through the eyes of women with disabilities. For example, the picture of health services aimed at the sexual and reproductive health of these women is dramatic.
Height-adjustable gynecological beds, lifts and operators available to help the patient in case of need during visits would be needed. But, unfortunately, there is none of this in our country. The survey “The accessibility of gynecology and obstetrics services to women with disabilities”, carried out a few years ago by the Uildm women’s group on 61 public health facilities and bodies, highlighted how during an obstetric-gynecological visit only in 28.33% of the monitored facilities there was an adjustable table, in 1.67% there was a lift and in 56.67% the presence of at least two operators.
Screening impossible if there are no clinics
Another worrying fact from the Uildm research is that relating to screening as part of regional or national campaigns for the prevention of female cancers. Only 33.6% of women with disabilities access it and, compared to the exams carried out as part of breast checks, only 24.6% were able to have a mammogram because the facilities only have mammograms available for patients who can stand.
It is useful to remember that the programs of screening oncology are included among the essential levels of assistance – Lea from the Prime Ministerial Decree of 12 January 2017. Furthermore, based on the new recommendations issued by the European Council in December 2022, the objective is to ensure the offer of screening to at least 90% of eligible citizens in all member countries by 2025. A percentage that is difficult to achieve if around one million women – this is the Italian estimate of the female population with disabilities – are practically left out.
These women regularly receive the invitation letter to take part in one screening for their age group but then they are not able to take the exams because there are no health facilities with dedicated clinics. Furthermore, as per practice, if you cannot show up for the visit, the burden of canceling the appointment is borne by the patient. So beyond insult to injury.
The first gynecological clinic for women with disabilities in Turin
The number of gynecological clinics for women with physical or mental disabilities in our country can be counted on the fingers of one hand. In Turin in 2008, the “Dd – Women with disabilities” clinic was opened at the Sant’Anna hospital in the City of Health and Science, where gynecological and obstetric visits are carried out with the possibility of carrying out multiple services at a single time : from the visit, to the ultrasound, to the Pap test up to the breast examination. Also in Turin, in 2013, in via Silvio Pellico 28, the Serena prevention clinic Il fior di loto was inaugurated thanks to an agreement between the family clinics of the former ASL To1 and the Verba association.
«The clinic of the Sant’Anna hospital», explains Dr. Paola Castagna, gynecologist responsible for Dd – Women with disabilities«it was not only the first in Italy but also the first hospital. We started it after listening to the needs of women with disabilities who asked us for dedicated staff, comfortable spaces and time. Our patients always find me as a gynecologist, the same midwife and the same nurse. Even when they call the dedicated number for telephone bookings, the same midwife always answers. This choice is very important both for community workers, where these women perhaps live, and for the patients themselves because they avoid having to repeat their clinical history every time. The role of the dedicated staff is also to make the patient central with her needs and her needs, trying to eliminate not only physical but also mental barriers. Ours is a choice of care, respect and overall taking charge. Space is an important structural factor to make patients feel welcomed both in the clinic and in the waiting room. Being able to move, move easily with the wheelchair and arrive with a dedicated lift is important for them. Finally, time. The gynecological examination for a woman with a disability requires more time not only to undress and get on the bed but also because, especially patients with mental disabilities, they need time to enter into a dialogue with the doctor. This is why we chose to dedicate 45 minutes to each of them. This time favors communication and counselling in such a way as to highlight concerns about, for example, sexuality and the problems of the couple, reinforce the need to undergo tests screening and specialist visits”.
From 2008 to today, 2,500 visits to women with disabilities have been carried out in the Turin hospital clinic. Approximately 200 women are visited annually with a percentage of 30% first visits and 70% follow-ups. The average age is 42 years and the percentage of Italian women is 80%. In 57% of cases the women have a psychological-cognitive disability, in 35% a motor disability and in 8% a mixed disability. As part of the indications for the visit, gynecological visits were carried out in 93% of cases, obstetric visits in 4% and oncology visits in 3%. In this last area, 53% of women with uterine tumors were followed; breast cancer in 36% and ovarian cancer in 8%.
«Patients with disabilities», continues Castagna, «often experience their bodies as “invisible”, “asexual”. Women who have suffered a spinal cord injury, for example, perceive their body as violated, injured, broken. They lose the desire to please and like themselves, they feel their autonomy, not only motor but also psychological, is profoundly undermined. Since the gynecological examination is characterized by an intrusion into the person’s intimacy we try, as far as possible, to avoid that i caregiver remain inside the clinic so that the woman with disabilities can have her private moment and personal to also be able to speak freely about one’s sexuality without it being mediated by those who accompany it.”
The lotus flower of Turin: more services in a single access
The presence of tactile panels, a climate of trust and a coherent and correct language are some of the characteristics that make the Il Fior di Loto serene prevention clinic in Turin special which, after an initial telephone filter for the analysis of specific needs, booking and communication of data in a protected manner, offers women the possibility of carrying out multiple services in a single access, in a dedicated room without barriers, located in the inside the family clinic.
«We are a first level service», explains Alessia Gramai, psychologist, psychotherapist and clinical sexologist from Il fior di loto«women with disabilities come to us who need to carry out an initial gynecological examination; screening regional oncology, such as pap and HPV tests; a breast examination or endometrial check-up after menopause. We also provide gynecological health prevention, counseling for couples and pregnancy care. We work closely with the Sant’Anna clinic which, being second level, takes care of our patients if they need further diagnostic tests.”
The Il Fior di Loto team: Elena Veghini, midwife; Cristina Biglia, gynecologist and Alessia Gramai, psychologist (Photo Il fior di loto)
An eventuality, unfortunately, which is not rare given that, from a study commissioned by the Verba association on the response of screening for female tumors in women with disabilities, it emerged that these women get sicker more than healthy ones because in fact they are prevented from prevention.
Silvia is saved thanks to one screening
at the Careggi Polyclinic in Florence
An example is the case of Silvia, a patient of Rosa Point service, the clinic dedicated to obstetric-gynecological assistance for women with motor and mental disabilities founded in Florence in 2015 thanks to the collaboration between the Maternal and Child Department, the Spinal Unit of the Orthopedic Trauma Center of the Careggi University Hospital and the Tuscany paraplegic and Habilia associations. As the gynecologist Angelamaria Becorpi, contact person for the clinic: «When Silvia turned to Rosa Point he was 37 years old and had never done the screening expected for women, not even a breast check-up despite the presence of cases of breast cancer in the family. She came to the clinic for pain in the lower abdominal area and vaginal bleeding for a few months. We scheduled all the necessary tests thanks to which we managed to diagnose a suspected precancerous form of the uterus which was immediately removed. What would have happened to Silvia if she hadn’t arrived in our clinic?
The needs of patients with disabilities who enter these centers are varied. Who has one motor disability in addition to a spacious clinic, an electric bed and a lift, it requires privacy, the possibility of accessing independently to feel like all women, and being able to talk freely about sexuality without being the object of prejudice. While who has an intellectual disability he also needs more explanations, to understand what sexuality is. Finally, the sensory disabilities they often require the presence of a Lis interpreter, an internal companion and accessible information also on sexuality.
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Gianfranco Jorizzo (Uls 6 Padova): «right to health for all citizensi»
Since last January 25th Padua has also had its first public gynecological clinic in via Scrovegni, in the headquarters of the Bacchiglione district of Ulss 6 Euganea. The clinic is the result of a fruitful planning shared between the health company, the municipal administration, women with disabilities and associations that represent them, such as the Veneto Neuromuscular Diseases Council, made up of seventeen associations and the Italian association Vivere la paraparesi spastici – Aivips.
The clinic, reachable thanks to an external lift and also equipped with voice control, as well as the traditional push-button panel, is spacious enough to allow ample freedom of movement for those who travel in wheelchairs. It is equipped with an electric cot. Guaranteed services include the first gynecological examination, subsequent checks, pap smear and transvaginal ultrasound.
“We are working hard” says the gynecologist Gianfranco Jorizzo, head of prenatal medicine at Ulss 6 Euganea, «so that in the coming months all the gynecological clinics in our districts are equipped to accommodate patients with disabilities. We have started training courses for our specialists to give them the tools necessary to welcome these patients. We believe it is essential to put the right to health for all citizens back at the centre. We can define the clinic in via Scrovegni as a first and second level care service. Instead, in cases where there is a need for surgical interventions, the patient is taken care of by the hospital.”
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In the opening photo, by Andy Kropa/Invision/AP/LaPresse, the Runway of Dreams Foundation Spring/Summer 2024 accessible fashion show.