Patient support HCFA TEAM February 15, 2023

Equipment

Individual spirometers

Since the beginning of the covid-19 pandemic, the Association has been providing free portable individual pocket spirometers to Cystic Fibrosis patients throughout Greece, aiming to improve their health and quality of life.

These are portable devices for remote monitoring of patients’ respiratory function, as in Cystic Fibrosis the organ that is destroyed first is the lung. Individual spirometers also help in the self-management of the disease, while at the same time reducing regular hospital visits, resulting in protection from hospital-acquired microbial infections.

Spirobank Smart individual spirometers are manufactured by the widely recommended and trusted company MIR and are designed and available to organisations. Their specifications have been tested and approved by the Association’s Scientific Committee, and these spirometers have been administered to patients in America in a similar initiative by the Cystic Fibrosis Foundation.

The individual spirometer is connected to the patient’s smartphone or iphone via a special application, while the results of the test can be sent by the patient to the attending physician directly in real time via a special application or via email in pdf format.

By 2023 the Association had donated 300 individual spirometers to adult and juvenile patients with Cystic Fibrosis throughout Greece following donations from individuals, institutions and companies.

Any patient or carer interested in obtaining a free personal spirometer can fill in the application form

here.

For more information contact the Association.

Portable oxygen concentrator

Despite the advent of innovative treatments that “freeze” the disease, a small number of patients with very low respiratory function continue to need daily oxygen therapy. The Association has secured a portable oxygen concentrator and provides it free of charge to Cystic Fibrosis patients throughout Greece, who are undergoing oxygen therapy and wish to use it in their travels. Patients who wish to use the portable oxygen will need to fill in their details here and information on the procedure will follow. For more information contact the Association.

* The portable oxygen concentrator is an Inogen One G3 with a flow rate of up to five (5) litres/minute and a rechargeable 16-Cell battery with up to eight (8) hours of autonomy with an average flow rate of two (2) litres/minute when the battery is fully charged. The condenser comes with a charger and a carrying bag.

Nebulisers for inhaled drugs

The nebulizer is essential for daily inhalation of medications as part of the daily treatment of Cystic Fibrosis patients to maintain their respiratory function.

By 2018, the Hellenic Association had donated more than 40 nebulizers to patients with Cystic Fibrosis throughout Greece, as the purchase of a new generation nebulizer was not fully reimbursed.

Following the actions of the Association in cooperation with EOPYY, from 2018, insured patients can obtain the new generation eflow nebuliser and its consumables free of charge, which has been included in a separate reimbursement budget.

However, as the needs of our uninsured patients need to be met, the Association occasionally has nebulisers available, which can be made available to uninsured patients with CF or to financially weak patients who need a turbo boy nebuliser and are unable to cover its cost.

Patients wishing to obtain a nebuliser will need to fill in their details here and information on the procedure will follow. For more information contact the Association.

Empowerment

Psychological support groups

From 2022, the Association offers its members the psychological support group programme for patients and carers throughout Greece free of charge. The groups educate, guide and empower patients and their caregivers in managing anxiety and negative emotions arising from the disease, improving mood, strengthening assertive behaviour, reframing their lives to new challenges and new circumstances, and introducing bereavement management. Each cycle of the programme lasts 3 months and the meetings take place online once a week. The patient groups include patients with Cystic Fibrosis over 18 years of age, while the caregiver groups include parents, spouses-partners of patients, family members, etc. The coordination of the groups is done voluntarily by the psychologist Dr. Dipl.-Psych. Stavroula Rakitsi, whom we thank warmly for her contribution.
The results of the project demonstrate that group cognitive behavioural psychotherapy is an important part of the health and mental health of CF patients and their caregivers.
  • Results of the first pilot of the programme in 2022 here
  • Results of the 2nd cycle of the programme in 2023 here
To register for the psychological support groups please fill in the form here.

Online support meetings coffee breaks

From 2020, the Hellenic Cystic Fibrosis Association organises monthly online meetings-coffee breaks for community members, patients and caregivers.

These are online meetings that enable members of the Association from all over Greece to get in touch with each other.

During the coffee breaks, participants voice their questions and concerns, share personal experiences and good practices regarding the disease and unite their voices through the group so that no one feels alone.

There are also open discussions around issues that concern members, such as medicines, treatments, monitoring and care, transplants, benefits. There is also discussion and information on current issues concerning the disease.

The coffee breaks take place online once a month through the zoom platform, while the date and time of the meeting is announced every month a few days before the meeting.

To participate in the coffee breaks fill in the form here. The meeting link is sent via email a few hours before the start of each meeting. More information in the Association’s email.

Respiratory rehabilitation programme

In 2014, shortly before the launch of the 2nd innovative CFTR Modulator treatment that “freezes” the disease, the Hellenic Cystic Fibrosis Association started supporting the respiratory rehabilitation program, which included specialized respiratory physiotherapy and personalized exercise for CF patients. The aim of the programme was to keep the patients in the best possible condition and improve their respiratory function.

The programme ran from 2014 to 2016, with two sub-programmes organised and supported by the Association. The first one concerned adult patients in Athens and took place in the Respiratory Rehabilitation Unit of the 1st University Pulmonology Clinic of the “Sotiria” Hospital, in collaboration with the “Thorax” Foundation and the Adult Cystic Fibrosis Unit of the “Sismanoglio” Hospital. The second one concerned children with Cystic Fibrosis in Thessaloniki and was carried out in collaboration with the 3rd Pediatric University Clinic of the Aristotle University of Thessaloniki, the CF Department of the General Hospital “Hippokratio” and the Faculty of Pediatrics of the Aristotle University of Thessaloniki. The results were impressive, as after completing the programme most patients were able to improve their respiratory function by up to 10%.

The results of the program and the benefits of physiotherapy and personalized exercise in Cystic Fibrosis were presented at three-day conferences organized by the Association in 2015 and 2016 in Athens and Thessaloniki entitled “Physiotherapy & Exercise in Cystic Fibrosis”. Specialized doctors and health scientists from Greece and abroad participated in the conferences, informing patients and their families about the value of regular specialized physiotherapy and personalized exercise and training them in physiotherapy techniques. The conferences were also attended by physiotherapy students and health professionals, who were informed about the disease and the specialised physiotherapy techniques in Cystic Fibrosis.