IND 2020 – Nurses’ key role Parkinson’s Disease patients: Estonia

Submitted by ICN
April 7, 2020

The number of people with Parkinson’s disease in Estonia is estimated at around 4,000, with nearly 30 new cases per 100,000 persons diagnosed each year, with an average age at the time of diagnosis of 71 years.

The care team for people with Parkinson’s disease includes several specialists, including a neurologist, physiotherapist, speech therapist, gastroenterologist, psychologist and a nurse. In addition, patients and their families have an important role to play in how the condition is managed and the ongoing quality of life of the patient.

Nurses have always been involved with teaching patients and family members how best to cope with the disease, but they are increasingly becoming involved in treatment activities as well.

Since 2016 treatment of Parkinson’s disease in Estonia has included continuous dopaminergic stimulation, which is performed at two neurological centres. Continuous infusion therapy is performed with Duodopa intestinal gel through a long-term PEG-J Tube, or by subcutaneous infusion via an APO-goâPump.

At the East-Tallinn Central Hospital neurology centre, 20 Parkinson’s disease patients are on continuous infusion or pump therapy. During their post-hospital continuous treatment, a clinical nurse specialist is the principal contact person for the patient and their family members.

Visits by the nurse specialist, arranged through the outpatients department, include health status follow-ups, assessment of the efficacy of treatment and counselling. The nurse is also available by telephone for problems that arise with the treatment.

This approach ensures the treatment continues at home and keeps the patients safe. The nurse specialist is a key person in coordinating the availability of care team services, including visits to the patient’s doctor, gastroenterologist or psychologist.

The nurse works with the pharmacy service to ensure medication for continuous infusion is available for those patents who live a long way from the neurology centre where their treatment is based, reducing the time, money and stress a long journey to hospital would create.

The provision of up-to-date treatment in this way is helping patients to manage their conditions and provide a better quality of life.

A patient’s story

A 65-year old man with Parkinson’s disease was the first Duodopa pump therapy patient at the East-Tallinn Central Hospital neurology centre.

When on classical oral treatment for his condition, the man experienced poorly controlled symptoms that meant he either suffered from involuntary movements all over his body or stiffened up and was unable to move. He suffered frequent falls, which meant his wife was having to come home from work several times a day to help him back into bed.

Care from the clinical nurse specialist meant he was able to undergo Duodopa continuous infusion therapy and, as a result, his quality of life has improved considerably, and he is once again able to perform all his day-to-day activities.

With telephone help from the nurse specialist, the patient and his wife are able to manage the continuous infusion pump and receive advice when necessary. This has resulted in a much greater sense of security and safety in the patient’s family. His daughter expressed her gratitude to the team with the following words: “Thank you for giving my father back to us.”

Find the original article on our ICN website for more details and the French and Spanish versions