‘Forcing carers out of work doubly disastrous’: Good Morning Ulster interview with Allan Leonard
5 June 2023
Joel TAGGART: Now many of Northern Ireland’s unpaid carers are begging for help for greater support from the health service. They’re at breaking point and calling for more opportunities for a short-term break from caring, or respite as it’s known. The last census shows we have 220,000 carers in Northern Ireland. And it’s estimated that they save health service around four and a half billion pounds a year.
Well, Allan Leonard entered the world of caring for his wife unexpectedly. He had to reduce his work hours from full-time to part-time. He then had to navigate his way around the care system, which he says was a steep learning curve. He’s been speaking to our reporter Helen Jones.
Allan LEONARD: Eleven years ago, at the age of 40, my wife Beverley had a stroke and she spent five months in hospital. And when she returned home, I quickly realized that I would be her carer. I was a bit naive at the time because when she was in hospital, she was receiving loads of care and then upon discharge she had a — we were fortunate — she had a very full care package. So I thought simply that I’d be able to keep my full-time work, but it became immediately apparent not long after her return that I was going to struggle with that.
Like many carers who are suddenly thrust into this role, it’s a complete new learning curve. No, there’s not really much signposting or guidance or information provided about what you’re going to have to deal with and accommodate.
Helen JONES: And what did you have to deal with when she came out of hospital?
Allan LEONARD: Well, in my case, it was the care provision that was provided the care company had a no-touch policy. Beverley needed assistance to use the commode or get up and down the stairs. There was no touch involved. I realized that this wasn’t going to work. When Beverley was in hospital, I paid astute attention and attended some of the physiotherapy and occupational therapy sessions, which was a very wise thing for me to do, because then I learned about handling and the better way for Beverley to move. That was very useful. But I was very disappointed in the care provision that was being provided by the private sector. One of the first things I had to do was call a meeting, have a discussion about what was and wasn’t possible. That ultimately led to me taking over the budget, through the direct payment system. But then that introduces a whole new set of challenges of becoming an employer, understanding contract law. It’s an onus, an onus I was willing to take. But for anyone who wants to manage the care for someone else, there’s a lot to learn.
Helen JONES: It sounds like a complete minefield. There’ll be a lot of people who are carers who wouldn’t know what to do.
Allan LEONARD: Yeah. Every person’s situation is different. For many people, even just getting a care package in itself is a challenge. There are different environments where some people are caring for children, caring for their elders, caring for their partner.
Some people are working and trying to maintain work, like I was. What would be helpful is that if there was some way in the system of capturing who is going to be providing the after-service care. For example, before Beverley was discharged, if someone had actually asked who was going to do that — it was going to be me — then for the service to inform the GP.
But as it is, the carers themselves are the ones who have to inform everybody that they have a caring role. And many carers don’t even self-define themselves as carers, even though they are, you know? So there’s something not quite right about that.
And part of the issue is that there currently is really no statutory duty of care for carers. Whereas there is for the service users, for the patient, rightly so, but there’s nothing there in place for carers. Every carer has to kind of fend for him or herself to navigate the entire system, and there’s just something not right about that.
Helen JONES: So your wife is being looked after, but nobody’s looking after you, essentially.
Allan LEONARD: That’s more or less the case. But what carers will do is they’ll find the support. They’ll go to the likes of Carers NI, or whatever circumstances… in my case with Beverley’s stroke, it was the Northern Ireland Chest, Heart, and Stroke, and the Stroke Association, who do provide support for carers, and that’s very good. In fact, it’s crucial because sometimes that’s about the only support that carers can get is through some of these community and voluntary sectors. That’s why the recent threats of cuts to their services is just disastrous.
Helen JONES: So you and the unpaid 220,000 unpaid carers in Northern Ireland save more than 4.5 billion pounds worth of care costs annually?
Allan LEONARD: Yes. The importance of the economic contribution that carers make in some ways is hard to measure. But if I look at it the other way around — carers will always keep caring, but if there’s not adequate support for carers and, say, part-time carers like myself, if it becomes a situation in which, say, part-time carers are forced to leave work, well that’s doubly disastrous, because you’re losing skilled workforce who are contributing to the wealth and income of the economy that pays for the services that we pay our rates and taxes for.
So, there really needs to be sufficient support around the carer and those they care for, to enable those of us who are trying to maintain work, to keep doing so.