Dan Notley’s job is to work with dads of children with a life-limiting condition, as well as other male relatives, step-dads, uncles, grandfathers, cousins and so on.
Memorably, Dan describes himself as ‘the buffer in the bowling alley for these guys’.
“Essentially, what I do is to help the men I work with to feel that it’s OK being a dad of a child with complex needs, or a dad who is bereaved, and to understand that you are not the only person who is in this position and that, fundamentally, whatever you are going through at any particular time, you are not alone,” says Dan.
A former engineer in the RAF, Dan has been involved with Tŷ Hafan for 20 years, starting as the first male volunteer at the hospice in 2001, then joining the hospice staff as Activity Worker in 2006 until 2012, and, after a period of time in the NHS, took up his current position in 2019.
“I loved my time with the RAF,” he says. “But when my period of service was up I wanted to change from engineering. I didn’t want to be pigeonholed.
“My whole role now is to try to facilitate shared experiences with the dads. Some of the dads I knew from way back when. But as demand increases the pool of men I work with is constantly expanding.
“If I can reach out – whether that is through speaking to dads, through facilitating activities, through virtual platforms, social media, whatever – and if I can help dads to set up informal networks to support each other, then my job is done.
“I try to engage with as many dads as possible. When I started in this job I didn’t have much experience of using social media. I know a bit more now! Also, since lockdown lots of virtual things have happened, which have been perhaps unexpectedly good. Online gaming sessions, for example. Then I have a ‘Talking Nonsense’ session which has no agenda whatsoever. I just make a Zoom link available and invite dads to come in and have a convo about whatever they want to talk about.
“A big part of what I am trying to do is to provide an opportunity for a bit of escapism, to talk about something other than what they are going through, because for some dads, the other dads who join these sessions may be the only other people, beyond their immediate family, who they get to see from one week to the next.
“Lockdown especially, was a very intense period for us all, and none more so than for dads of children with complex needs, or bereaved dads.
“My role is to find ways to give them an opportunity to let go for a bit.
“How do I do this? There is a core group who like football, rugby, sports – but many other dads do not like these activities. However, I have found that music is quite popular, so I’ve set up an online music poll. Some dads will chip in, some dads will just listen.
“I would never try to force someone to do anything. What I do is most definitely not a ‘let’s sit around in a circle and talk about things’ type of session – the dads I work with want as much normality as possible.
“Another way of putting it is, in a world of chaos they want something that’s constant. I like to think that in my own little way I am that constant for them.
“When a child with a life-limiting condition reaches the end stage of their life, I will, if it’s appropriate, go into the hospice to support the dad, and giving them the opportunity to talk to someone who isn’t medicalised. Sometimes we don’t even talk much, my contribution might be as basic as going into the grounds with them, sitting with them, buying them a Costa and just being there, while their child is at the end stage. It’s not easy. Sometimes there are difficult conversations to be had.
“I feel quite privileged because I get to see a side of the dads that a lot of people don’t. I’m very aware that sometimes I am the only person that Dad has spoken to all day.
“In hospitals – I‘ve noticed that Mum gets asked an awful lot. Dads are there, they are in the room, but they’re not given the opportunity to be as actively involved. And that is hard for them.
“My approach is that my door is always open. To all dads I say, don’t think that because you have said no to engaging with me now, that means that you can’t get in touch again.
“I don’t judge. Everybody has got their own reasons.
“Only recently I was speaking to a dad and he told me that he has moments when he just can’t cope with the situation he is in. His friends just don’t understand and if he tries to talk to them about it, they will change the subject all the time.
“So I am a sometimes a safe space for him. I don’t understand what he’s going through, but I can relate to his feelings. Sometimes you don’t need to talk, sometimes you just need to listen. Sometimes that’s all someone needs – someone else to acknowledge what they are going through. And for themselves to acknowledge their own feelings – it's a form of pressure relief.
“I’d liken the experience of these dads as being like viewing a volcano – it exists, and people can see it.
“It’s good to acknowledge it and especially when it’s not erupting because it will always be there.
“There isn’t a cure for grief or for bereavement. Rather what I and my colleagues in the family Support Team do is to help enable coping skills or strategies. We are that tool that help people to get through the day. Sometimes they want you to be there too.
“The main thing is to understand that I am not the answer to everybody’s problems. I’m not analysing them, not judging them, not deconstructing them and not trying to cure anything that’s going on.
“It’s simply one bloke talking to another bloke about whatever is going on. I’m a kind of pick and mix, dads can delve in and use me as and when they want to.
“Through Covid, lots of dads worried about loss of jobs, jobs under threat, also being confined with family and the pressures that they feel. Many of them were worried about being furloughed, their rights, possible loss of work, and benefits A very simple part of my role is to share information with them – signposting links to things they may not have seen.. And in the early stages of lockdown I went out and delivered food parcels to some families – what I do, is in lots of ways, is very piecemeal, but to them it can make a big difference.
“In my ideal world all Tŷ Hafan dads would always have someone to speak to and to listen, if they needed it. “One dad once said to me ‘we are all part of a club that nobody wants to join.’ That hit home to me more than anything.”
However, many of them do look out for each other.
Dan, a father and grandfather himself, adds: “It’s the guys themselves who are the safety net for each other because they are living that life, living that experience. They’re such wonderful guys. I’ve got the utmost respect for them. They are living a life that we can’t imagine.
“How do these guys function? They may well have had little or not sleep for days. But they have no option but to get up and keep going. Maybe I can help them with things like getting them free entry to something, like a football match or an event, and provide a little bit of relief
“The humour that these dads show, the companionship – the respect they have for one another is another thing.
“It’s the ones that aren’t aware of each other, who I worry about.
“My message to dads - “You don’t have to be alone. You don’t have to do this journey by yourselves.”