Mental health advocacy blocked
Some former patients can no longer advise
Some former patients can no longer advise
Greater Manchester Mental Health Trust (GMMH) is under fire due to policy changes that are said to be limiting peer advocacy and service user involvement.
In January, GMMH published its latest service user and carer engagement policy (SCE), which changed the definition of “service user” to mean anyone who has been discharged from its mental health services within the last 12 months. Only they are allowed to be involved in decision making about GMMH services.
The peer advocacy group Manchester Users Network (MUN) says that this timescale change severely restricts who is able to advocate for patients. Some with decades of understanding of mental health services are no longer allowed to be involved in determining how services should be run.
Paul Reed, MUN’s elected chair, said: “I believe they want to end user involvement as we know it – to end independent peer to peer representation so they have control. They’re setting the narrative of what a service user is that goes against everybody’s definition.”
The trust’s SCE policy outlines a secondary term of “people with lived experience” who may be invited to consult on issues if it sees fit.
In keeping with this policy, MUN is invited to regular meetings with Manchester’s Care Quality Commission and GMMH. However, Alan Hartman, MUN’s vice-char, described these meetings as “like Groundhog Day”.
“Everything we do, we’re just ignored. It’s a tokenistic service,” said Hartman. “We just go over the same stuff and nothing’s listened to. A carer, Alison Curtis, stood up in a meeting saying: ‘We’ve been here before. What’s changed?’”
Claire Watson, GMMH’s lead for volunteering, said her interactions with MUN were “very positive” and defended the policy changes. She drew attention to GMMH’s volunteer policy, which has no restrictions on the involvement of “patients with lived experience”.
“I have 29 volunteers and many of them are not GMMH service users but they all have lived experience of PTSD, for example,” she said. “Where it’s for the purposes of shared learning, it could be anybody. Where it’s for the purposes of existing practice, the most recent experience is what’s most useful.”
However, this policy created more problems, said Hartman. “GMMH changed what was classed as ‘therapeutic work’ to ‘voluntary work,’” he said. “This means that when people lose the protection of being classed as a service user, the DWP see that they’re doing voluntary work and they lose their benefits.”
This is not an isolated case. Sarah Yiannoullou, managing director of the National Survivor User Network (NSUN), described the changes in Manchester as “typical” of a national picture in which the majority of mental health trusts are “disengaging from independent peer support”.
She added: “At the moment there are a lot of closures of user-led groups because participation has been taken on by larger charities or by the trusts themselves. So if they don’t see the need to meet with them as much, or view them as challenging, they’ll consult with service users less. The relationship has changed.”
On the distinction between a service user and people with lived experience, Yiannoullou said: “It’s rather restrictive and very narrow. It categorises people in a way that’s not terribly helpful. To distinguish on the basis that someone hasn’t been in a service for the last 12 months means there’s a lot of inequality in that type of policy.”
But Yiannoullou said there are trusts that revised their involvement strategies and set an example for the approach NSUN supports and MUN wants to see in Manchester. She cited Surrey and Borders Partnership Trust, which recently changed its strategy after a period of consultation with service users.
People are invited to apply to become a member of its involvement team through a short application form. Membership is open to anyone over the age of 14 and the level of involvement in advocacy, volunteering and decision making is left up to members themselves.
Photo: Members of Manchester Users Network protest policy changes at GMMH