In advance of MS Ireland’s annual meeting, the organisation has called on Minister Simon Harris to honour a commitment to meet and discuss ending the numerous waits that patients with multiple sclerosis suffer. While the HSE does not currently compile information on waiting times for people with multiple sclerosis[i], the MS Barometer[ii] ranked Ireland’s access to treatment and therapies as 23rd out of 25 countries assessed. Approximately 9,000 people in Ireland are living with MS.
In a video released to coincide with the annual meeting, Declan Smith - who was diagnosed in 2014 - said: “You’re looking down the road. I can live a fairly normal life with some adjustments, but I can see it getting worse. I know the Minister told MS Ireland that he would speak to them ‘shortly’, but I don’t know what shortly means because it hasn’t happened yet.”
Where statistics are available on the wait times for people with MS, there is evidence that the Irish health system subjects patients to long delays:
Long waits for appointments. Following preliminary diagnosis, people with MS wait for their first outpatient appointment with a neurologist (as do patients with other neurological conditions). As of June 2018 over 4,000 people were waiting more than 18 months to see a neurologist[iii]. There are also very long waiting lists to access essential physiotherapy[iv]. Patients with an MS diagnosis also wait for their subsequent appointments: in an MS Ireland survey, 44% of people with MS waited more than six months for their most recent neurologist appointment[v].
Long waits for MRIs: a key step in diagnosis is an MRI scan. According to the MS Atlas[vi], Irish patients’ 12 week wait for an MRI is the longest in Europe (along with Sweden and Denmark). By contrast, in Italy patients wait on average 1 week.
Long waits for treatment: People with MS are waiting twice as long as recommended to start treatment. The HSE Model of Care for Neurology Services in Ireland, launched in 2016, recommends that people with multiple sclerosis start active treatment within 6 weeks of initial presentation: the best case scenario at the moment is 3 months[vii].
Long waits for new medicines: In Ireland, the government’s process for making a new medicines available to patients takes an average of 348 days. In some cases it can take over 4 years.
Ava Battles, Chief Executive of MS Ireland added:
“In July, Minister Harris said in the Dail that he would meet with us to ensure new medicines for MS become available in Ireland. No meeting has taken place. I don’t mind waiting to see the Minister, but patients across Ireland are tired of waiting for appointments, for scans, for treatments, and for medicines that are making a difference to the lives of patients who live in other European countries.”
“Waiting years for a medicine that your doctor thinks will help you adds significantly to the uncertainty and stress of MS. Anyone who wants to help people with MS get the medicines they need can send a message to the Minister for Health and your local TDs at patientsdeservebetter.com.”