Brendan Courtney: 'Middle-aged women come up to me in the street, crying and telling me their stories'
Brendan Courtney tells Barry Egan about the reaction to his television documentary on the battle to get care for his dad
Brendan Courtney brought his laptop to Our Lady's Hospice in Harold's Cross last Monday afternoon. He sat in the chair next to his father Frank, turned on the computer and pressed play.
He played him the heart-rending documentary We Need To Talk About Dad that Brendan made about the Courtney family's battle to get care for Frank, who was left paralysed by a stroke almost two years ago.
When the documentary finished, Brendan's dad sat up in his bed at the hospice - where he has been receiving palliative care since June, 2016 - and told his son: "I'm proud of you."
Then he paused and added: "I'm proud of me too. And I'm proud of my whole family."
Cut to Thursday evening. Fashion designer and TV presenter Brendan has just come from visiting his father at the hospice.
"He's tired today," Brendan says of Frank, who is 75 years of age. "He's a very sick man.
"He is tired but then he is very lucid in certain moments. But he is a man who had a very, very severe stroke. For people who hadn't seen him, who saw the documentary, they were really shocked at how he looked. I have been there from the moment he dropped so I'm not shocked by it at all."
How is Brendan's mother coping? "She's very tired," he says. "She misses her husband. She is really missing him at the moment. The house is quiet. The house was never quiet when my father was there. He was a big force."
I say it must be sad to see his father in the hospice, no longer the big force he once was.
"Sadness is a very strange thing," Brendan says, "because sadness to me feels quite self-indulgent sometimes. Particularly when you are in the middle of it. I am very much of the opinion that we have plenty of time for sadness. It is not us sitting in the wheelchair. Sometimes it can catch you. Actually, today a little thought popped into my head, and then I snapped out of it".
Later he says: "There are lots of times for tears when you actually need it. Not when you still have the person in your life and they are comfortable and safe.
"I've had lots of tears all day," Brendan adds. "Middle-aged women coming up to me in the street and crying as they are telling me their stories." Exactly the same kind of dispiriting stories as the story of Brendan's dad.
"Parents ill - no support," he says. "What are we going to do? Where are we going to care for them? No plan. No structure around the options. Devastated. Guilt."
Brendan says that his dad can come out into his wheelchair for a couple of hours a day in the hospice. Then he wants to get back into bed.
Frank is a religious man (his son is not) and as such he likes to go to Mass as often as he can in the chapel in the hospice. When Frank is unable to go, however, he watches Mass on the TV in the ward.
"He hates watching Mass on the TV," laughs Brendan.
I ask Brendan what the conversation was like in the ward with his father tonight.
"The first thing I always say to him is: 'How's the pain? One to 10?' He will lie to protect me. I discovered that. He'll go, 'I'm brilliant', and then he'll go, 'Not good'. And I'll ask him again, 'How is the pain, dad?' Then, he'll say [grimacing] 'Not brilliant. It's 12. Get them quick!' Then the medical staff will come in and give him painkillers. So he is in pain a lot. I'm actually very, very happy he is in the hospice now. It's only when I pulled back and stopped stressing about it that I realised it is a brilliant place to be.
"He is giving out about mundane, funny things, like forgetting his fig rolls or someone driving him mad," continues Brendan. "So my dad is keeping it real. But you know what? For the circumstances we're in, and the battle we've been through, he's very comfortable now.
"He talked openly in the documentary about what it is like to have a stroke, what the drugs do to your brain. For me, it was remarkable that he did that."
Later he says: "I suppose, my family are so relieved for him to have a routine, where we know where he is and he is not going to be kicked out, he is not going to be asked to leave, we don't have to find other care. So from that point of view we are relieved."
But that sense of relief only goes so far. "My mother is very stressed," Brendan says. "God love her. She said to me that We Need To Talk About Dad was the best work I've ever done.
"My mother is not stressed over the money any more. But it was horribly stressful," he adds. "It was unbelievable, that money is such a component of your health. It just adds to the stress. You realise that the amount of money you have pretty much decides the care you get in Ireland."
This depressing reality became apparent, he says, when "cutting through all the pleasantries in Tallaght Hospital, the bed manager and social worker said, effectively, that there is nothing more we can do for your father.
The un-PC phrase is 'bed-blockers'. The PC phrase is 'delayed discharge'.
There are, at any one time, 700 people in hospitals in acute care who shouldn't be there. They need care but not hospital care, but because of their age and where they're at and the support they have in the community, there is no community care for them. We are so slim on the ground with community care."
In the UK, Brendan claims, you get eight hours a week community care where someone comes around to your house and dresses you, washes you; in New Zealand, he continues, you get three hours a day.
"In Ireland, we get two hours a week. So all those people who are on their own in their homes can't go back to nothing. So they stay in hospital. They say you have to leave but they can't kick you out. You have all these people staying because there is no support for them in the community.
"Because we are polite, upwardly mobile working class people, we said, 'What do we do? We can't bring him home. We don't have a loo downstairs. The doors are too narrow for his chair. Okay, we'll apply for a grant'. And then it just explodes into, 'Oh my God! What are we going to do?'
"Because when you are being gently and politely pushed out of the hospital and there is nowhere to go, you start to realise very quickly that this is about money. This is not about care. This is about money. And that is horrifying.
"You then explore what I thought was a very clever idea," Brendan says, referring to the HSE's Fair Deal scheme, which provides financial support for people in long-term nursing home care but does not extend to care in the home. I think there have been a few oversights [in the scheme] because the administration of our health system changes so quickly and it is a political football. Politics is a career, sadly. Not a vocation. The poor people in the HSE are at the bequest of a new minister each and every time. They must be sick of it changing."
Asked what we need to do, Brendan replies: "We need to legislate on behalf of patients and make the patient the centre of our system. And therefore the profit-making organisations are on the outside of the system and not in the centre of it. Currently, the profit-making organisations - the insurance companies, the nursing homes, the pharmaceutical companies - are right in the centre making the decisions.
"Anyone who makes a profit from health has an impact on our healthcare system, directly or indirectly, whether we like it or not. That is the crux of the problem. You get these big companies who employ thousands of people in Ireland and their drugs are four times the price that they are in Spain. So, we have to legislate on behalf of patients and make the patient the centre of our system. That's the only way to solve it. And that will solve it. It will be a long process. For some people there won't be enough time, but straight away the Fair Deal scheme could be changed to allow for home care."
In terms of reaction from the Government, on Monday night while Brendan was in the hospice with his father, he received a text to say: 'Check your email'. He opened his email to find a Department of Health press release.
He read it four times and found it almost illegible.
"I didn't understand it at all. So I emailed them back and asked them to translate it into non-Leinster House speak. And the next day, they did, very kindly. And a woman from the Department of Health explained to me that they are putting together a committee of stakeholders in elderly care - people from nursing homes, people from the HSE, older people, families - who will consult on best practices for a home care scheme.
"So, I asked: 'Would this be separate to the Fair Deal scheme?' They said it has to be best practice basically. I get that. It has to be done properly. And it is a very positive move forward," says Brendan.
"But, the first question I had was: 'How long is this going to take?'"
"I haven't had a reply," he says a tad dejectedly. "Because they probably can't reply -they probably don't know."
There is some good news, he adds. A month before Brendan knew he was going on The Late Late Show to discuss the documentary, he thought he better know what he is talking about "if I am going to be calling people out on this". So he contacted Roisin Shortall, former Minister of State for Primary Care, who, says Brendan, "had resigned over her frustrations around change in the HSE.
"I went and met her and she was so gracious and helpful. She has already put together a cross-party committee and she has a report which Simon Harris has asked to see in April about her recommendations for a 10-year plan for the HSE. I'm pretty sure that at the core of that is legislating on behalf of the patient."
Will that be in time for Brendan's father? "No, it won't be. And it won't be in time for lots of people. But that is the issue around allowing a political system to manage a health system. It is just ludicrous when people change all the time, at the very top, the people in control, change. And when you are talking about health, you are talking about people's lives.
"It's tragic when these people paid their taxes all their lives and probably didn't have the best of insurance or certainly didn't make any plans for getting old. All they did was pay their mortgage and have their home and educate their children. That was an achievement."
Philosophically, "our generation are the first generation properly with choice. All the sacrifices my parents made - how hard they had to work - and that has made me feel profoundly grateful."