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"It is only a matter of time before a stressed out parent is pushed over the edge"

Nurses caring for seriously ill children have written an open letter to Minister for Health James Reilly about the lack of discretionary medical cards for their patients.

File photo
File photo

NURSES CARING FOR seriously ill children have written an open letter to the Minister for Health expressing their concerns about the “vicious” medical card situation.

The letter is critical about the lack of discretionary medical cards to the children, saying that parents are being put under serious pressure.

“It is only a matter of time before somebody, most likely a stressed out parent, is pushed over the edge by this unjust system,” the nurses from the Jack & Jill Foundation write.

There have been claims that some discretionary medical cards have been withdrawn from people in recent months.

The Jack & Jill nurses said that there has always been issue with medical cards but it has worsened in the past two years.

They cited the case of a 10-year-old boy with a rare disease whose parents appeared on The Saturday Night Show at the weekend asking why his medical card was taken away.

Alex Coyle has a profound intellectual and physical disability, which brings life-threatening problems and seizures. He is hospitalised often and is also tube-fed.

His father Declan tweeted a photograph of his son in hospital recently to raise awareness of his situation, generating a huge response.

“His story is being replicated across the country,” the nurses say.

Here is the letter in full:

Dear Minister Reilly

As the team of nationwide specialist children’s nurses responsible for designing and managing homecare plans for the 300 precious children under the Jack & Jill Foundation’s wing, we are compelled to write this letter to you to outline our serious concerns in relation to the allocation, or rather non allocation, of discretionary medical cards to our patients. Medical cards have always been an issue since the establishment of Jack & Jill in 1997. However, the situation has become particularly vicious over the past 2 years. The situation is critical.

It is only a matter of time before somebody, most likely a stressed out parent, is pushed over the edge by this unjust system. We see the danger signs already. Parents worn out, reduced to tears, not sleeping, not coping and worried out of their minds in relation to their child’s medical card. The “lucky” ones who have a temporary 6 or 12 month medical card live in dread of the next review and the whole torturous process of form filling, rejection letters, more visits to GPs for supporting evidence etc. etc. etc. which starts all over again.W

e are particularly worried about the parents who suffer in silence. The parents who have given up already. Depressed and beaten into submission by a system that is just too hard, where parents have to fight for every little support for their child.

We urge you to study the avalanche of comments from families on the Jack & Jill facebook page following the RTE Saturday Night Show interview (3rd May) with Declan Coyle and Annette Kinne, parents of Alex (aged 9 from Bray) whose medical card was revoked. Alex Kinne Coyle’s case is not an isolated one. His story is being replicated across the country. Please talk to our Jack & Jill nurses as part of your review of medical cards currently underway and this possible 3 tiered system you have alluded to.

The medical card system in Ireland is broken. It lacks humanity. Is unjust. Inconsistent. A hellish lottery. Specifically, at our monthly meeting this week our nurses noted the following:

· We must start with the 12 page Medical Card and GP Visit Card Application Form which is not fit for purpose. It is not appropriate for a child to fill in this form. Parents are being asked to jump through hoops in terms of the information requests via this form, this process. None of the requests are medical related; all financial. This intimidating form must be torn up and redesigned into a simpler, shorter format. We should be rolling out the red carpet, not red tape, for families who want to care for their sick child at home.

· How much time is being wasted at HSE HQ level using a form that is not user friendly? A form that all too regularly gets lost; caught up in a HSE postal system that is overloaded? These days parents have to resort to registering their post to the HSE to assure it gets to the right office. Not good enough.

· Caring for a child at home saves money on hospital beds. Parents are doing this willingly but need the HSE’s support, rather than obstacles. They should be supported 100%, not forced into baring their soul to the media and sending begging letters to GPs/consultants/TDs for letters of support. For something that their child should be automatically entitled to.

· The children in our care in every community in Ireland have a right to this medical card in their own right. Why are they invisible to the Irish State and to the HSE until they are 16 years old? Will it take a challenge via the European courts to force change? Parents are angry and children’s rights are being ignored.

· We know you will say well that is the system – it is means tested. We say change the system. These are the big, bold decisions we expect from our political leaders. This debate is particularly timely, side by side with debating the free GP cards for under 6s. There’s not a parent in the country who wants a free GP card for their youngster, while children under Jack & Jill’s care are being refused medical cards.

· Pharmacists too are being impacted by this issue. Some are very good, supporting families throughout their appeals process for the medical card. This exposes pharmacists to the stress of the medical card situation too. They are exposed financially, if the application doesn’t work out for the family and for the child at the heart of the process.

· Inefficient practices whereby successful individual applicants for the sick child somehow transform into a medical card for everyone in the family just don’t make sense? And must be costing the taxpayer unnecessarily.

· With appeals come delays. Is the card activated or deactivated during this time? A different answer according to location in the country. We have changing goal posts all the time in relation to medical card applications. And how many salaried people are running this totally flawed system? Too many? A review and redesign of the system will save money on red tape.

· What about the child sent home from Crumlin on a breathing machine with no medical card?

· 100% of children supported by Jack & Jill have life limiting or life threatening conditions and as such should get this “gateway” card automatically.

· The onus is all on parents to find their way through this complicated system. No names given. No information surrendered easily by the HSE. No clear pathway on where to go post rejection letter.

· One parent driven to handing their child over – literally – to local HSE representative and refusing to bring that child home until emergency medical card granted. How many more stories like this, before we get action?

· Suggesting that parents should lobby local politicians with the “hard cases” is not right.

We know it is a real issue on the doorstep for local and European election candidates. We know the pressure coming to bear on you from backbenchers unhappy with the medical card complaints from their constituents. However, it is for the sake of the children, rather than any election process that this system must be radically overhauled. And quickly. Time is something the families of children with life limiting and life threatening conditions don’t have.

We will make ourselves available to you to show you the reality of medical cards and the stress being subjected on our families in every community in Ireland. It’s time to diagnose the true extent of the problem with medical card allocation in Ireland and to come up with a timely and cost effective solution to the benefit of all, especially the children we support.

Our call to action is simple Minister. Review, refresh and redesign this system of discretionary medical cards. Recognise the child in his or her own right. The system is broken and we need you to fix it.

Yours sincerely

Sinead Moran and Saundra Nolan on behalf of all the Jack & Jill nurses

Read: ‘Why was the medical card taken from our son who has a rare disease?’ > 

Read: Government accused of targeting people with Down Syndrome in medical card removal >

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