Many families living with EB experience great difficulty in obtaining the dressings and the other medications that they need to manage the symptoms of EB. For some families it has proven very difficult to obtain a medical card while, those who have a medical card find that there are still constant hurdles to overcome, in order to access the products they need. Given the chronic nature of EB and the burden that it places on families, this additional and unnecessary burden is unacceptable.
As part of our on-going campaign to improve access to health entitlements for people with EB we have met with senior figures in the Department of Health, the HSE and the Minster for Health.
During our meeting in 2012 with the Minister for Health, he announced that EB patients would be among the chronic conditions to be included in the first wave of free primary care. To our knowledge, this was the first indication that chronic conditions, other than those on the ‘long term illness scheme’, would be included. This was a very welcome announcement which will hopefully result in a small saving for the families we represent, who do not currently have medical or GP cards. The government hopes to publish legislation to facilitate this first phase of free primary care, in 2013.
The process of applying for the medical card had now been centralised and all applications pass through the Primary Care Reimbursement Service (PRCS) offices, in Finglas. This should help improve the transparency and fairness of the processes involved in the application process but unfortunately they remain immensely challenging. We have been informed by the Director of the PCRS, Patrick Burke, that they hope to move towards a model where the decision-making process focuses on illness, rather than on means.
Recently the PCRS have agreed to flag EB patients in their systems, in order to smooth the path to obtaining a medical card. See here for the details.
In addition to our work to try and improve access to health entitlements, we have prepared guides to the health entitlements most likely to be accessed by families living with EB.