This week, to coincide with the national Mental Health Awareness Week, we’re publishing a series of articles looking at feminism and mental health. Some readers may find this content distressing.
“We were only going to be here a couple of hours, then it was overnight. And we just haven’t left!”
Jacqueline is one of an amazing group of women (and one man) who are now more than ten weeks into occupying Lifeworks, an under-threat community mental health service in Cambridge, for patients suffering from Borderline Personality Disorder (BPD).
Housed on Cambridge’s Tenison Road, Lifeworks is part of Cambridge and Peterborough Foundation Trust (CPFT) Complex Cases Service and has offered a community drop-in and crisis care service for the last 12 years.
Patients now believe it may secretly have been under threat for as many as two years, though they only learnt of the closure in February, when they were told they would be discharged back to their GPs with no specialist BPD support on offer.
We’re sat at the table in the cosy main room of what, at first glance, looks like any other community centre. I’ve come at a particularly quiet time of day, when just three of the protesters are around, but already Ann, Heather and Jacqueline have made good on their promise of “a mean cuppa”, and there’s a plate piled high with chocolate biscuits, which between the four of us don’t last long.
The sense of community is palpable and heart warming. The sign on the door reads: “You don’t have to be mad to live here, but it helps!” – the word “don’t” playfully crossed out.
The sofas, painted murals on the wall, and the abundance of teas, coffees and biscuits on offer almost belie the serious nature of what’s going on here; it’s the sign on the wall listing who can be trusted to enter and – most crucially – who cannot, that give away the building’s occupied status. Then, of course, there’s the room full of banners and placards, the treatment rooms converted into bedrooms, and the collection of press cuttings proudly adorning the wall.
Each of the three women I meet has a similar story to tell about how Lifeworks has provided a literally lifesaving service in their most dire moments of need.
Heather has been using Lifeworks since it was founded, 12 years ago. Before that, she tells me: “I used to take overdoses all the time and self-harm. I was in and out of Fulbourn [psychiatric] hospital all the time.
“I’ve really come a long way since I’ve been in the service. I use it mostly for the crisis clinic and the social aspect – seeing people really helps, to have people around who understand.”
Likewise, since her referral to Lifeworks 8 years ago, Jacqueline says: “I’ve not had one A&E trip and I’ve not been in [hospital] for mental health. I haven’t self-harmed for a couple of years now.”
For Ann, who’s been at Lifeworks three to four years, the service has also been a lifeline: “I was in a really bad way when I came in. I wasn’t functioning very well, I was hibernating, I wouldn’t get out of bed, I was stashing pills. I don’t self-harm but I have a very bad eating disorder, which was extreme at the time, and Lifeworks has helped me to keep my eating disorder under control.
“It’s helped me with socialisation and meeting people too – with our disorder we don’t really go out and meet people or make friends easily because of our mood swings, our anxieties and our paranoia,” she adds. “But with Lifeworks my husband can go to work knowing I’m safe.”
It’s not difficult to see why the potential loss of Lifeworks is a feminist issue; Jacqueline estimates around 90% of the service users – and, indeed, all but one of the protestors actively involved in the campaign – are women.
Proposed changes to the Complex Cases Service would see the service change to what the CPFT says is a “more evidence based model”, but the patients are less than convinced.
“What they’re bringing in with their new personality disorder community pathway is a cluster approach, where they’re treating groups only, with mentalisation based therapy, which works on the basis that you stay in the present, you don’t discuss the past,” Ann explains.
“Mentalisation based therapy really works best on a one-to-one basis, where you can focus and that person gets to know you, but they’re knocking all that to the wind.”
Not only that, the patients also worry they will lose out on the community aspect that is clearly at the heart and soul of Lifeworks. “They’re putting up all these big walls and blanks, and it’s very cold. You come in, you have your mentalisation therapy, you go home – there’s no socialisation, no integration. We just don’t get it,” Ann says, clearly exasperated by what she sees as a chipping away of public services.
The patients tell me their mass discharge followed a gradual scaling back of the service in recent years, with the departure of a number of specialised members of therapeutic staff and the Lifeworks service being reduced from a four and a half day week, to just two days a week.
“To start off with Lifeworks was very much a social, open affair,” Jacqueline says. “You could just turn up and use the groups that were running – the groups were open, they had cooking groups, arts and crafts groups, stuff like that, and you could just turn up and join in. If you were having a bad day you could just turn up and sit in the corner.”
Ann interjects: “The mantra was always ‘come in and be with people’ – and it worked. They would pick you up. All of a sudden, that wasn’t good enough – suddenly the groups were limited numbers and it was a case of if you didn’t join in, you couldn’t come into the building until the drop-in.”
The women estimate around 40-50 service users dropped off following these changes. “They’ve run it into the ground by the staff leaving and the limited numbers. People just stopped coming in because that’s not how we work – and they know that,” Jacqueline says.
Faced with being discharged en masse to their GPs, the group took the decision to occupy the building in March because “nothing else would have worked”. Originally intended as an overnight sit-in protest, to “put the staff out a little bit and prove a point”, the women have been there ever since, determined to be heard.
“When we took over the building we did some digging and it came to light that they hadn’t done a [public] consultation, they hadn’t done an equality impact assessment, and they were literally just going to close it,” Ann says.
It’s this lack of transparency that particularly angers the protesters, who have already gained much support from the local community and trade unions, and are now in talks with the local council’s adult wellbeing scrutiny committee about the terms of reference for a public consultation. “It’s as if [CPFT] are accountable to no one. How can they treat patients like this and get away with it?” they demand.
For each of them, the prospect of life without Lifeworks doesn’t bear thinking about: “I’d feel suicidal, I think,” Heather says. “If you’re in crisis, where do you go? My GP told me they’re out of their depth. They don’t really understand personality disorders; they don’t specialise in it. Here they’re specially trained and understand us.
“One of the main conditions with a personality disorder is a fear of abandonment and trust issues. All the time with this service they’ve said ‘you can trust us, we’ve set this service up for life’, because our condition’s lifelong, and then suddenly they’ve abandoned us and they’ve done a lot of harm.”
While discussions rumble on between CPFT and the council, the women at Lifeworks describe the situation as “a waiting game” until the public consultation begins. Meanwhile, they’re planning further protests, a trip to Parliament, and link-ups with trade unions and other anti-cuts campaigners around the country.
Cambridge and Peterborough NHS Foundation Trust has published a statement on the situation on their website, stating: “CPFT is having to make cuts of about £6million as part of the four per cent cuts that the Government requires every Trust to make. Our community division makes up about one third of that.”
“They quite openly admit it’s a false economy,” Ann scoffs. “But as long as it’s not their budget, they don’t give a toss – it’s A&E’s budget, it’s the ambulance service’s budget, the police budget, the drug and alcohol service’s budget.”
It’s sadly now a familiar story for campaigners across the country fighting cuts to their much needed public services, but the Lifeworks patients are determined to fight for as long as it takes. “I’m in it for the long haul. In an ideal world we’d like to go back to four and a half days, and also bring new referrals in – there’ve been no new referrals for the last two years,” Ann says.
“Open up the door and let the people in that need help, and stop using us as an excuse. You knew you were closing us down, you used all of our techniques and all of ticks against us because you know us.”
Her voice wavers: “They used our mental health against us.” It’s that betrayal that smarts the most.
Photo: Jacqueline, Ann, Heather and Richard (who joined us towards the end of our interview.)
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