Rónán Mullen (Independent) | Oireachtas source

Cuirim fáilte roimh an Aire Stáit. I welcome and support the motion. I am sure that other Senators saw the RTÉ programme last night called "DIY SOS", which was about a beautiful family with two sons who have Pfeiffer Syndrome. This is an extremely rare genetic disorder. I was struck by a comment the couple made about their own relationship. They said that due to the stress of caring for their sons on a 24-7 basis, and the need to keep their eyes and ears on their sons all of the time, they do not really have a relationship anymore. They are just two carers who happen to live under the one roof. It was a very sad and poignant observation. It probably saddened many people who were watching. Notwithstanding the sheer and obvious love the couple had for their children, the strain on their lives and on their relationship was clear. It is the reality of daily life for tens of thousands of people across the country. Caring full time for a loved one or loved ones is not a part-time job. It is a full-time, all-consuming and constantly changing duty. It has to take precedence to the exclusion of all other things, most often.

Half a million Irish people are involved in caring at some level and more than half of carers have given up work to care for someone. There are 67,000 carers under the age of 17. This is not far off the population of Galway city. Young people have come in for a certain amount of criticism recently in the context of the lockdown, often from Ministers and from NPHET. Imagine what the existence of those 67,000 young people has been like over the past year.

In 2018 I wrote a report for the Parliamentary Assembly of the Council of Europe on the provision of palliative care. In the course of my research I learned that 100 million people in the European Union are involved in some way in caring for another person with a chronic illness or disability. Consider what this number will grow to in the decades to come as the EU population ages.

In many ways carers are a forgotten class of people. They are easily overlooked because they have no great union clout or political power. They simply do not have the time or energy for political or media agitation on their own behalf. This is why it is important that we as politicians stand with them and stand up for them. It is not just about the amount of money that family carers save the State. We should say this and be conscious that money is not the most important thing. It is just one reason why the State owes them a tremendous debt.

I will turn now to the vaccine roll-out. Last year we had a situation where people who are homecare givers were going from one house to another house. These carers are very often people who are on a low income or living in constrained or congregated domestic circumstances. I called for a greater effort to be made to provide accommodation alternatives for people in that situation. In the same way, the handling of the vaccine roll-out for carers left a lot to be desired. I do not understand why more effort was not made to prioritise carers at an earlier stage, even with a crude measure such as starting with people who are in receipt of the carer's allowance. This would have captured the lion's share of such people. A large number of family carers have not had their first doses yet, even though the elderly loved one they care for may have been fully vaccinated some time ago. Carers who work for the HSE or one of the private care companies were included at an early stage of the vaccine roll-out, but family carers were not counted since they were not considered to be front-line workers. On a cold and scientific basis this might have been seen as justifiable, but on a human level it was questionable. Family carers were considered to pose less of a risk of transmission than care hired into the home. The reality is that family carers have, by necessity, spent the past months and years of their lives greatly confined alongside the person they care for, because of the needs of the person they care for.

The Taoiseach got his first vaccination yesterday, to much fanfare, and we all applaud and welcome that moment. I know of many family carers, however, who are older than the Taoiseach who still have not been given their appointment. Regarding the future, there are many small things that could be done which would make tangible differences to carers' lives. A small number of carers fall into a pension gap because they have not spent enough time in the workforce to qualify for a contributory pension and do not meet the means test for the non-contributory pension. The programme for Government includes a commitment to address this issue and I hope there will be progress on that. Family Carers Ireland has called for a formal register of carers, which seems a very sensible idea because it would allow people who potentially fall into traps like this to be identified in advance. If such a register existed it might also have allowed the vaccine to be rolled out to carers in a more compassionate way. As I was writing the report into palliative care, I noted that the issue is not just about people's financial needs. We can never lose sight of the psychological, social, emotional and spiritual side.

In the context of the care given to my late father, we were hugely grateful for the State supports available to us as a family prior to the Covid pandemic and, indeed, for the responsiveness to my father's ever-changing needs. Much of what is going on is good. I very much agree with what the motion is saying in that respect, but I am often struck by the geographical inequalities. The level of care sometimes comes down to the particular area where a person lives and that is a problem. That needs to be evened out.

The care given can also vary according to people's conditions. People with more physical needs do not get the same level of care support as, perhaps, people with other conditions, which worries me. I mentioned that care can be a constantly changing and evolving situation. There is also the situation of people who give care at home and those who come in to give care; all their work needs to be supported.

I would like to see the quality of care evened out on geographical lines and with regard to conditions. I talked recently to carers of people with Prader-Willi syndrome who do tremendous work under enormous pressure in caring for their loved ones in a family situation. They need so much more in terms of respite and other supports.