Violet-Anne Wynne (Clare, Sinn Fein) | Oireachtas source

I am sharing time with Deputies Ward and Cullinane.

I want to raise the ongoing issue of capacity in our health service. Time and time again, we listened to the Minister's predecessor saying that we were investing in our health service. However, this funding never alleviated the pressures on our health services. We in the mid-west are constantly faced with overcrowding, long waiting lists for our elderly and lack of provision for our younger people.

Last night, I watched the RTÉ programme, which highlighted the Trojan work our front-line care workers do each day and how well they adapted to the pressures of Covid-19. For that I sincerely thank them.

Now that we are faced, however, with more backlogs of procedures and tests, many who were on a waiting lists to start treatment over the past 18 months are facing yet another delay due to Covid-19. Like everyone, I accept that this was unprecedented and unforeseen. I would like to tell the Minister, however, about the case of a family from Clare I had the absolute pleasure of meeting yesterday. The lovely family in question are waiting painfully and reluctantly since June of last year on the much-needed Spinraza treatment for spinal muscular atrophy, SMA. I met Jordan Perez, who is 12, and his brothers and sisters - Ryan, Zoe, Faith and Ezra. I can tell the Minister that their story is heartbreaking. The Department approved access for treatment on 12 June 2019 on an exceptional and individualised basis for people under 18 years of age with SMA type 1, 2 and 3. This was a huge moment for the families of these children. Now it is overshadowed by angst and despair as children like Jordan are still waiting with no confirmation of a date for the treatment to begin.

Jordan has been let down by this failure and he deserves much better. It is not right and it is not good enough. Jordan Perez has SMA type 2. Being deprived of this treatment is negatively impacting on his quality of life and, ultimately, his hopes for the future. Jordan waits patiently because he is so good natured and is a huge credit to his family. Unfortunately, his abilities are deteriorating right before his family's eyes. This must be addressed with the utmost urgency.

The HSE quotes capacity issues as one of the main reasons this treatment has not taken place thus far. We have been constantly calling for ICU bed capacity in particular to be increased. As we navigated through the Covid-19 pandemic that need was apparent. ICU bed capacity has a knock-on effect for being able to conduct this treatment. I am calling for ICU bed capacity to be prioritised properly but more specifically for the Spinraza treatment that is life-changing for these children with SMA such as Jordan.

With these Revised Estimates, how will the Government ensure the knock-on effects of the Covid pandemic will be minimal on the health service? How will the Department ensure there is no further delay for children like Jordan who so desperately need access to the care and the treatment they require?

See this speech in context