Laura's Story

Laura is 5 years old and is a twin. She and her sister, Abbie, were born preterm at 31 weeks. Laura weighed only 850 grams at birth and was seriously ill but no cause or explanation could be found at this time. When she was 7 months old she was diagnosed with a Complex 1 Mitochondrial Deficiency which is a progressive disorder of energy metabolism. If Laura develops a simple childhoood illness, for example, gastroenteritis, she can become acutely unwell very quickly and can develop dehydration and hypoglycaemia in a short space of time. She has required hospitalisation on several occasions when this has happened. I am a Registered Children’s Nurse and my knowledge and experience has enabled me to manage her condition very well at home and prevent more hospital stays.

Laura is prescribed several medications which she will need to take for the rest of her life, most of which are not covered under the Drug Payment Scheme. Those which are not covered under the DPS amount to over €400/month in addition to the cost of the medication covered by the DPS.

Laura’s condition requires regular follow-up by her GP and also frequent hospital visits to her various medical teams, including metabolics, cardiology, ENT, audiology, orthoptics, ophthalmology…..the list goes on.

Despite all of this, Laura is a wonderful active, outgoing little girl who is getting on with her life and who attends school with her sister. She lights up a room when she enters. We are so proud of her and her resilience and her character.

Laura was granted a medical card in 2009 based on her healthcare needs. This was renewed in 2010 and again in 2012. Then when we sought a renewal in January 2014, the application was ‘unsuccessful’ despite all the evidence we provided from her consultants, GP and local pharmacist outlining her medical condition and her healthcare needs. No explanation was given as to why her card was refused. We assumed that we had ‘failed to show sufficient financial hardship’. As directed in the letter from the HSE, we requested an assessment of this decision in March 2014 and as of today we are still awaiting an outcome of this. I have contacted the HSE weekly since the end of April and each time have been told ‘It is still in progress, it’s with the Medical Officer – no, there is no decision yet. Ring again next week’. And in the meantime, Laura is now without her medical card since January. There is a certain irony that if I wasn’t a children’s nurse, she would have had more frequent GP visits and hospital stays, and the question must be asked if this would have strengthened our case.

While the individuals with whom we speak when we ring the HSE are pleasant and professional, the system is inaccessible, frustrating and designed to make people just give up. The application process is onerous and not appropriate when one is applying for a child who has long-term or complex healthcare needs. The letter from the HSE indicated that we could ‘ask for a reassessment within three weeks of the date of the letter’ which is not a lot of time to procure all the additional information one might need from hospitals, GP etc. However, one can also request an appeal ‘within four weeks of the letter’. And herein lies an anomaly – the HSE recommends that one seeks a reassessment first before seeking an appeal, which is what I have done. But since I have not heard anything about the reassessment, I have now missed the date by which the appeal must be submitted. The only conclusion I can draw from this is that the HSE system is flawed.

I don’t agree with a carte blanche approach to distributing medical cards to the entire population. However, I do believe that it is our moral and social responsibility to look after and protect our young and vulnerable. Children with long-term illnesses and complex healthcare needs should not be subjected to an arbitrary financial assessment but rather their right to access healthcare, medication etc should be guaranteed. Let me be very clear – my daughter’s condition is lifelong, she will always have it and she will therefore always have the associated healthcare needs. Her right to have a medical card should be based on her healthcare needs.