‘Our voice is starting to be heard’: On Your Behalf interview with Allan Leonard
22 April 2023
Linda MACAULAY: Now, there was a call this week from Northern Ireland MLAs for Stormont officials to begin work on a strategy to help thousands of unpaid carers. The letter to the Department of Health’s permanent secretary, Peter May, points out that the last carers’ strategy was published in 2006, and it doesn’t reflect the lives, the challenges, or the priorities of over 220,000 unpaid carers who save the public purse billions of Pounds in care costs every year.
Allan Leonard is an unpaid carer. He works part-time and he is been caring for 11 years for his wife Beverley.
Allan LEONARD: So at the age of 40, my wife Beverley, just woke up in the middle of the night with a complaint and I called the out-of-hours GP, we ruled out meningitis. Thought it was maybe a tummy bug, went back to sleep.
And when I woke at seven in the morning, I found her in our bathroom just extended, unconscious. I rang the ambulance and we discovered that she had two severe strokes during the night. She had emergency surgery and spent five months in hospital. About two weeks in intensive care, a couple of months in the neurological ward at the Royal, and another several months at the Regional Acquired Brain Injury Unit at Musgrave Hospitals.
Linda MACAULAY: That was a big change in your life, in Beverley’s life too. So at that point, although you are still working, you became a full-time, part-time, how do you see your caring?
Allan LEONARD: That’s the curious bit because obviously when Beverley’s in hospital, the acute services team are taking care of her.
It’s intense because you’re wondering how well your wife’s going to recover from all this. But the reality didn’t really hit until she was ultimately discharged and returned home, with the bed in our dining room and all the adaptations put into place. And then, in Beverley’s case, she received a good care package. I naively thought, great, I can go back to work because she’s going to get four or five calls a day.
But that was just silly on my part, because in my case, when you have a sudden injury like this, you’re unprepared, you’re really unprepared for what’s going to hit you. And I quickly realized there’s no way I was going to be able to really maintain full-time employment. And that’s the reality faced by many carers in this situation. Trying to keep employment is very difficult. I had an understanding employer, but ultimately I went freelance just so I could manage my own workload and my caring responsibilities.
Beverley’s made a quite remarkable recovery. So my role’s now probably more part-time. But the point is that even when someone is receiving a care package, there will always be family members picking up the slack, because there’s only so much that the professional carers are able to provide and all the stresses that they’re under as well.
Linda MACAULAY: So life changes for both of you?
Allan LEONARD: Absolutely. I mean, for her, she never returned to work — the career that she had spent her years studying for. At one time, she looked at me and said, “Was this just all a waste of time? All those years of university study?” That’s hard.
Obviously, in her case, she’s looking at the rest of her life. So when you have sudden injuries like that, it’s life changing, as you say, for both the person who has had the injury and the family members around them.
Linda MACAULAY: The trouble is that what you’re doing day in, day out and hundreds of thousands of other carers, nobody really notices because you just get on with it.
Allan LEONARD: Yes.
Linda MACAULAY: You know, it’s just a role that you take on and then people just forget about you. Do you feel forgotten about?
Allan LEONARD: Well, when you say forgotten about… To keep your own sanity, you want to live your own life. And so does Beverley. It’s the policies, really, that frustrate me and many other carers. You get a lot of public statements from politicians and others about how valued we supposedly are as carers. But when it comes into practice, it is found wanting. It’s not a question of money, although there is a lot of issues with that. It’s just about the support around the carer. So, for example, I mentioned that when Beverley was in hospital, an amazing team in the health service, not only just the doctors and the brain surgeon who literally saved her life, but all of the nurses, the allied health professionals, the physiotherapists, occupational therapists, hospitals, and the ambulance, pharmacy. So we nicknamed it “Team Bev” because this team actually brought Beverly back and gave her another life.
Now what happens after discharge from the carer’s point of view is…
Linda MACAULAY: It’s “Team Allan”, and you’re a team of one.
Allan LEONARD: You say “Team Allan”, it means that the carer then has to figure out pretty much him or herself, the whole system of support. A lot of times carers have to fight for their rights. I think that’s a bit unfair that if the system’s in place to take care of the service user — in this case Beverley — it would be great if there’s a similar system in place for the carers, who do provide a crucial role.
Linda MACAULAY: Is it tough being a carer? It’s, it’s not like a package where somebody drops in for an hour. Even if you are working, you are still thinking about Beverley and what’s happening, what she’s doing. I mean, this morning you had to work out how she was going get somewhere — is it full-time in your head?
Allan LEONARD: Well, in a word, yes, because I obviously want the best life for my wife, who I love. And that’s the same in any family. I mean, you’ll have family carers… whether you have cases of children looking after parents. You know, it’s not just the typical looking after an elder, though there’s much of that. I’m caring for my wife, there are parents caring for their children, there are children caring for their parents. In every case, that’s always going to happen, it’s always going be… I don’t want say preoccupation, but of course it’s always on your mind. And that’s where when we get into say the call for a carers’ strategy, we just want that enshrined somewhere, you know, that carers need a bit of flexibility in their employment, in their workforce, and also some help in actually navigating this system.
Linda MACAULAY: Is the system terribly complicated?
Allan LEONARD: I was suddenly put into the role of a carer. You’re starting from zero. What do I know about social services and social work? When you’re relatively young, these aren’t things that occupy your mind. But when you’re, in my case, thrust into the role, you just have to learn.
I remember meeting groups with other carers and I said, “Yeah, the signposting wasn’t great.” And somebody replied, “You were signposted?” That’s the point I make about the service user in the hospital — obviously the duty of care is with that person. There’s no duty of care to the family member, the carer. I’ve addressed young junior doctors, graduating junior doctors, and I made the point that in my experience, from a doctor’s point of view, keep an eye out on who you suspect is going to be the one who’s going carry out the aftercare — it may not be the person you think it is, the immediate family member. It could very well be a cousin or a nephew or a brother. These are the people that after the patient is discharged, they’re going be caring, delivering the aftercare work.
So there’s lessons all around. But I am encouraged by the forums that my wife and I have participated on. Like the Integrated Care Partnerships, these are being transformed into a huge, new project called Integrated Care System. This is going to be region-wide, it’s going to be population-driven. It’s taking the same interdisciplinary approach as the Integrated Care Partnerships were — not only do you have primary and secondary care, but you have people from community planning in the councils, you have service users and carers, you have the voluntary and community sector.
Linda MACAULAY: Joined up?
Allan LEONARD: Joined up, absolutely joined up. And we’ve proven through the past 10 years of this programme that this joined-up thinking, actual co-designing programmes produce better outcomes for everybody.
Linda MACAULAY: And this call for a carers’ strategy, it’s a long time since that was looked at. And that’s what the MLAs are calling for now. What needs to be enshrined and what areas should it address if and when it happens? Because it’s nearly three decades since the last time there was a strategy drawn up.
Allan LEONARD: Carers’ rights in regards to employment is probably the biggest one.
Secondly, I’d like to see written down a bit more of a commitment to the voluntary and community sector. These community-based organisations serve as crucial, vital intermediaries actually delivering services that the health trusts aren’t delivering directly. And would they want to? Like, there’s the Healthy Living Centre Alliance. These are a group of 28 organisations and they work with communities so that people are looking after themselves. But if you’re living in an area and you don’t know what resources are available, you go to your GP. GPs are trained to deal with clinical illnesses, not so much social prescribing. Some of them might have knowledge about it, but these healthy living centres actually lead on this stuff.
It would be nice, if I’ve wishlist, it’d be nice if the Carer’s Allowance wasn’t means tested. I mean, as a worker, I think that’s a bit unfair. You know, it’s a paltry 75-odd Pounds a week, and then you’re not allowed to earn more than 500 Pounds a month. So there’s no incentive to go beyond that.
Those are three places I would probably start.
Linda MACAULAY: Are you hopeful?
Allan LEONARD: I am hopeful. Very hopeful. I’m actually more than hopeful. I’m optimistic because there is a Coalition of Carers, across the health conditions. There’s the likes of the Patient Client Council as well. I do feel that our voice is starting to be heard, and that’s thanks to the likes of Carers NI who for such a long time have campaigned to have the voice of carers heard. And not just in a protest way, but actually in a constructive, engaged way.
Linda MACAULAY: Allan Leonard. And we will keep an eye on this call for a strategy. It’s certainly a long time since they looked at it in detail.