Aisling Farrell, IMNDA CEO
“Motor Neurone Disease is an incurable, terminal, degenerative, life limiting disease and is categorised as a neurological illness along with other conditions such as MS and Parkinson’s. Yet those with MND are not entitled to receive any type of medical card on this medical basis and having just been diagnosed with an incurable disease are then subjected to mandatory means testing. To date, the general response to the MND medical card debate has been that the majority of people with MND do not have the illness long term, this is due to the degenerative nature of condition. Therefore it is deemed a short term illness and is not included on the long term illness medical card scheme like most neurological conditions.
The Chief Operating Officer of the Health Service Executive has recently stated that those with severe and life threatening illnesses are entitled to receive medical cards on discretionary grounds. However we have found that this is not the case for the MND community, the majority of our members do not have medical cards and many times even if a patient receives a medical card in the first instance they are then refused it on renewal even though their condition has become progressively worse. Unfortunately we have tried many avenues to try and get answers as to why the MND community are not entitled to medical cards emergency or otherwise like other patients with terminal illness, but unfortunately the HSE Medical Card Department are not contactable. We have also gone through some of our own HSE contacts and they have had similar difficulties trying to get clear answers.
The Irish Motor Neurone Disease Association strongly advocates that all patients in Ireland with a terminal illness are treated equally and fairly, and we would urgently call on the Minister of Health to clarify the situation and that the MND community are granted a fast track and automatic access to the emergency medical card”.
Professor Orla Hardiman, who deals with approximately 80% of MND sufferers in Ireland, has expressed many concerns around this issue and finds herself writing around 5 letters a week on behalf of people with MND to the HSE. The HSE stated: “While there is no automatic entitlement to a medical card based on a particular medical condition, the HSE is extremely sympathetic to the situation of motor neurone disease patients and their cases are assessed with this in mind”
Professor Hardiman’s responded to this on RTE’s Morning Ireland radio show on 5th August: “Whilst this may be the enunciated policy of the HSE at official policy level, on the ground that’s not actually what’s happening and on the ground is where I’m working”.
If you have any questions please contact the IMNDA Office on 1800 403 403.