The space to talk - engaging men in cancer support services at Maggie's, Manchester

ENGAGING MEN IN CANCER SUPPORT SERVICES AT MAGGIE’S, MANCHESTER

The first Maggie’s Centre was opened in Edinburgh in 1996, today the charity has a network of centres across the UK and even some abroad. When the founder, Maggie Keswick Jencks, was diagnosed with cancer for a second time she felt strongly that there needed to be new and different ways to offer additional support to those living with cancer. Along with her husband, Charles, Maggie worked tirelessly to bring her idea to life. Together they sought to create a centre that would be a welcoming space, independent of, but adjacent to an NHS treatment centre.

A place where people could talk freely about their emotions and experiences as well as accessing practical support.

We spoke with Robin Muir, the Centre Head at Maggie’s Manchester, about the centre and the services it offers to the local community, focussing on how it seeks to engage with and support men whose lives are affected by cancer.

“What we’ve seen recently is that, partly because of the pandemic, and partly because of how population developments affect staffing issues within healthcare, the needs of people with cancer have increased dramatically. From the initial diagnosis being delayed to treatment delays, alongside the cost of living crisis, increased isolation and anxiety because of covid the need for support has really increased. The context in which we deliver it has become more complex, people may be a little bit more reluctant to just come through the door, because they’re worried about infections in a way that they weren’t before the pandemic.”

Reflecting on how men access support Robin is acutely aware, based on his professional observations from his time at Maggie’s, that the centres have always been more readily accessed by women than by men.

“Across our centres, we generally see around a 60/40% split in terms of female/male. What we’re likely to see is that women within the centre are more likely to be seeking psychological support and men might be more likely to be seeking practical support. Whereas women, I think, are happier to be more explicitly talking about their emotions, and their psychological well-being. My feeling is that men often are very fearful about seeking support. That’s probably due to many, many different reasons, from the gender stereotypes that we grow up with through to the continued generational impacts.”

The pandemic also had a noticeable negative impact in terms of men accessing the centre, and although the restrictions have now been removed, it has required a focused effort over the last two years to try to increase engagement with men once again. The team has established that the best way to engage them is to ensure that there is a good range of practical advice as well as support on offer. For example; sessions based around the disease itself as well as financial information whilst working on providing emotional support from there.

Robin reflects that the approach that they had taken previously had assumed that if you offer a service, people will access it easily and appropriately, but that was not necessarily the case. A good example of this is the prostate cancer support group that they have run over the years. At times the sessions would be used by the men participating to talk largely about very concrete and practical issues around their illness, such as loss of income, benefits, treatment protocols etc. But the team at Maggie’s were acutely aware that there were many things the men were not discussing, for example the very real issues and fears around some of the more personal consequences of prostate cancer such as erectile dysfunction or incontinence.

Gradually this has changed through their focus on carefully building relationships with the men who came along. The conversations may start around the use of hormones and then gently move into the impact of the hormones, the side effects, and the dysfunction. As the group is more established there are long-standing members who are able to be open and honest about their struggles, this in turn allows newer members to see that this is a safe space in which they can talk if they wish to. A vital insight for the team was to understand that many of the men they supported had not previously had the experience of having the opportunity to be vulnerable before.

“I think that at the heart of it is that a lot of men may not have had experiences of having had trusting adult relationships where emotions are part of these relationships. So, talking about how they feel, the thoughts that they havewith a professional, it’s a very intense thing to do.”

“What you see in those men is actually a kind of discomfort with their own vulnerability, and perhaps that’s not something that they are used to, to feeling vulnerable. Perhaps they have had positions of authority and power within their own lives, and they felt confident within those roles. Or within their family, they might have been the breadwinner, the sort of person in the family that looks after other people. They may never have been ill before and so then to find themselves in a position where they’re feeling vulnerable; physically, socially, occupationally, in many ways it feels more uncomfortable to them. Therefore to come and seek support highlights that to them, it makes them much more aware of that vulnerability.”

Lived experience has also illustrated to the team at Maggie’s that often a group setting provides an easier way for men to access support initially. Robin explains that the group format offers those attending the chance to be able to be a listener first, which can be helpful if somebody is feeling nervous, or particularly vulnerable. The group space and dynamic enable them to sit back, to listen to other people talk about issues which are relevant to them, to face the others within the circle but not have to look directly at any one person. Whereas in a one-to-one setting, you’d typically sit opposite one another, which can at times not only feel quite intense and uncomfortable but brings with it the possibility of ‘perhaps a feeling of confrontation.’ Instead it is sometimes useful he suggests, to borrow from the advice often given to the parents of teenagers, namely to ‘sit them in the car, that way you don’t look at each other but can both look at something else.’ This can be translated into many shared activities, from walking through to creative processes, which is where art therapy might be utilised for example.

It is important though, Robin notes, to also listen to what a man is telling you through not talking. Whilst there is a really positive and important public narrative at the moment around the fact that men need to talk, that it is ‘OK not to be OK’, and that mental health matters this can at times almost silence the importance of recognising that if we want to understand what our loved ones are going through, what they are feeling, then we need to allow them to share this in a way that works for them.

“Sometimes what we see in the centre is that people will bring their male loved ones in and say ‘He’s not talking about it.’ There will definitely be an element of that, that the person is not talking about it, but is there also another side to it? Are we really willing to listen to these men? To hear what they are saying by not talking? Because what we’re really talking about is a conversation, and we need two people within that. I think that’s sometimes a hard thing for the people immediately around those men to actually do.”

The social and cultural differences in which boys and girls have typically been treated through their formative years can play a part Robin explains.

“When you look at men, often their social relationships tend to be quite different from women. They tend to have fewer friends and less good-quality contact with people. The statement that ‘men need to talk about their mental health’ probably also raises the question of ‘do they actually have people within their life that they could have those conversations with?’ I don’t know if it’s a minority or a majority, but there would be a lot of men who you might find that they just didn’t have somebody within their life that fit the bill in the same way that a woman might, who might have nurtured relationships and trust over previous important life events.”

Through offering several ways to access support, Maggie’s centres around the country are working hard to reach those in our community, like men, who are traditionally less inclined to seek out support. The best way is to provide a welcoming, supportive, safe and nurturing space where different ways of exploring often difficult subjects will enable a trusting relationship to be built. What might begin as an initial group session, attended perhaps unwillingly, might grow into an important and meaningful interaction, the chance to change the belief that there is no real value in talking.

“We can use a group in a way that allows people to be a participant and then allow them to build confidence to then join in with the group because the group allows informality in a way that perhaps one-toone doesn’t. Although it is important we offer facilitation in the group session I’m very keen within our centre that we do allow or enable a soft ending for the groups. So just because the group has pencilled in to finish at a certain time it doesn’t mean it has to absolutely finish at that point. The counsellor might need to leave because of a prior commitment, but we will often say to people to please ‘stay, take your time, go and get another cup of tea, sit at the kitchen table.’ I think that informality allows people to build trust.”

That is why, at the heart of every Maggie’s you will find a big, welcoming kitchen table.