A lifeline in limbo but what will become of it?

It doesn’t take much to foster a sense connection and hope but after years of funding cuts this feels fragile, says Lisa Couperthwaite

A wooden plant bed with a white sign saying TOG Mind sticking out of the soil

Lisa Couperthwaite

Quite some time ago, over three years in fact, I was asked to help with the evaluation of a project named ‘Together’, run by Tameside, Oldham and Glossop, or ‘TOG’ Mind. This was funded by the National Lottery and provided a range of mental health training programmes aimed at reducing suicide and self-harm in men aged between 18 and 55. The project focussed on people experiencing a variety of issues such as schizophrenia, personality disorder, drug and alcohol problems. The high rates of these issues, combined with low employment and housing difficulties in the area, served to create a desperate need for answers and solutions to these problems. As somebody with lived experience of some of these issues, I was thankful that TOG Mind were able to take this on, especially at a time when it had become increasingly difficult for local initiatives to secure funding, even though they often bring about the most meaningful change.

I was initially asked to provide support with the project evaluation.  Since the service was originally aimed at men, it was decided that it would probably be wise to have a male peer researcher throughout the interviewing phase of the evaluation.  However, as the programme evolved, it transpired that as many women as men were using the service and so I got more involved. The remit was extended to include problems with isolation and relationship crises, as well as general wellbeing, and my involvement intensified. I assisted with focus groups, recruitment for telephone interviews, conducting the interviews and helped to analyse the information gathered.

This proved to be quite a difficult project for me to be involved with. On a practical level it involved a number of trips to Greater Manchester, where the programme was being run. This place was unfamiliar to me despite the fact that I’m from ‘the North’. I get anxious travelling at the best of times but this journey took things to a whole new level. There were two train changes involved, one at Piccadilly station and the second at a small village. The first was hard for the usual reasons – a huge and busy station. The second was difficult for more subtle reasons. The tiny village was surrounded by the ominous Saddleworth moor and with its procession of shuttered shops after years of austerity, the sense of isolation and despair was palpable.

Personal and professional

It was also a challenging project because many of the issues being addressed resonated with me on a personal level. When I began interviewing, my mother had recently died and my youngest brother, who was staying with me at the time, was undergoing an almost identical experience to many of the people that I spoke to. I often had to work hard to take a step back and I needed more emotional support. However, I believe that seeing the daily impact of my brother’s situation helped me to grasp just how important a programme like Together is and how much need exists for services such as this.

What struck me most about Together was their flexible approach. This meant they were able to cater for the individual rather than sticking to a rigid programme. Clients could pick and choose what they wanted to do and I suspect this gave them a precious sense of control over their engagement with the programme. As one man said, “She [the facilitator] did give me quite a spectrum of what was on offer.  She told me what was available, what kind of schemes they do, ‘You can get on this and you can get on that and it’s entirely up to you, you don’t have to do any.  If you sign up to one and you can’t make it then just ring.’”

I know that my brother would have really appreciated this approach as opposed to the endless GP appointments, the months spent waiting and the passing back and forth between various NHS and council services. None of which ever seemed to help him in any tangible way.

A way to connect

As with my brother, nearly everyone who came to Together were waiting for something, whether that was counselling, courses such as mindfulness and stress management or NHS treatment. Interestingly, Together seemed to help those who were in this limbo. For example, although people would join the service to have counselling or training, many would go on to say how beneficial it was to have something that served as a way of ‘holding’ them during the waiting period.  It gave them something to keep them occupied, a way to connect with others and a reason to leave the house. As one person said, “I wasn’t just using it for what I could learn in the class. Because I’d isolated for two years, I was using it as a reason to get out of bed and get out again.” 

What also appeared to help was that many of the staff and volunteers had personal experience of many of the issues mentioned and were happy to disclose this to clients.  As one man said, “It wasn’t as if it was just a person who had come straight out of college and was reading from a textbook. I think it’s important when a person has first-hand experience.”    

The staff and volunteers involved in Together also really seemed to understand how terrible and pervasive social isolation could be for people; they worked hard to create a sense of community.  From the Mind café, which employed and trained clients in matters ranging from food hygiene to barista skills, to the allotment where clients could grow produce for use in the café – the emphasis was always on giving people a sense of connection.

Often these connections were formed during breaks from the workshops and by attending Connect 5 meetings, where they would take part in a range of activities such as knitting and colouring. People said things like,  “Really, it’s the activities that put a smile on your face” and “You don’t know what to expect but, in the end you’re doing silly tasks like drawing round your hands and colouring them in, which you feel silly because it’s child’s stuff, but in the end it’s that activity which clears your mind where you can focus on conversation and engage.” It was these activities that enabled people to speak to each other, to form bonds and to feel accepted. This client sums it up nicely by saying, “We’re all there for the same reasons and people were coming up with the same problems so you realised you weren’t on your own and you were encouraged to talk.”

I think we can learn a lot from Together, especially about helping people to cope with the unbearable limbo of waiting for treatment or support. Together created environments that fostered a sense of belonging, connection and feeling ‘held’. In fact, it was these things, which ‘filled the gaps’ between the formal offerings, that had the most impact on people’s wellbeing. This shows how just a few simple things, delivered with common sense, care and creativity, can provide people in dire straits with the much needed hope to keep going.

Sadly, so many local initiatives like this are not only difficult to establish but are also often time-limited with no guarantee of ongoing funding. This is something that will no doubt become even more difficult. If funding does cease, how will this affect the people who are left behind? Of Together, one client said, “It’s been like a lifeline to me, it really has”, but what would happen to them if this was to be taken away?  Is it harmful to provide this kind of false hope?  I don’t know the answers to these questions, but I do believe they are concerns that we all need to think about.

Lisa Couperthwaite is a Peer Researcher at the McPin Foundation. This blog was written before the Covid pandemic. We are publishing it now as the issues it raises are even more pertinent today.