Want user-led mental health services? We've done it for a decade
April 5, 2010
Leeds Survivor-Led Crisis Service has for 10 years run a multi-award winning non-medical sanctuary for people with mental health problems. It prides itself on being user-led. Adam James explains why it has made its mark in mental health history.
In the early nineties Leeds service users gathered in a community centre to share a dream - that they themselves would one day set up and run a mental health crisis service.
They used to discuss their disillusionment with psychiatry. They longed for an alternative philosophy of care - somewhere people, when in distress, could receive empathy and social support in a safe environment, rather than medication and symptom-control in a medical setting.
Moreover, they argued, with their own experiences it is they who were best equipped to provide such care. They were the "experts by experience”
In December, 1999, the dream was realised - a three-storey listed Georgian building in Halton, Leeds, became Dial House, one of the UK's first user-led crisis services.
Now named the Leeds Survivor-Led Crisis Service (LSCS), it celebrated its 10 anniversary in November last year. You want user-led? Here it is. Running succesfully for a decade. And there’s accolades to boot - two awards from the Guardian; one from Community Care; last year it scooped The Charity Times’ Charity of the Year award.
LSCS is, at heart, a crisis sanctuary operating from 6pm-2am Fridays to Sundays, the hours when most mental health services are closed and isolation can, in particular, hurt. Support workers are on hand at Dial House which prides itself on offering non-judgemental empathy, safety and refuge space. The service offers itself as an alternative to hospital admission. Strong feelings of suicide are common. Visitors usually have a history of trauma. Those with “challenging” behaviour are welcomed.
In 1977 American mental health activist Judith Chamberlain wrote “On Our Own: Patient-controlled alternatives to the mental health system”. It was a rallying call to fight for and establish world-wide user-led services.
More than 30 years later such services in the UK are – to the disappointment of many - rare. But Leeds Survivor-Led Crisis Service is an exception and leads by example, receiving 5-9 visits per night from people in real trouble. “It’s stressful and demanding work,” says project manager Fiona Venner.
All LSCS’s six permanent part-time support workers and eight bank support staff - on salaries of £23,000 pro rata - have experienced mental health problems. Measures are in place to ensure they can cope. Supervision and support for staff is high. Everyone receives a well-being budget to spend on counselling, external supervision or complementary therapies.
“If you got mental health problems yourself then they can be triggered by this work,” says Venner. “So we recruit staff who are sufficiently recovered themselves, who are robust enough. Our staff are high calibre who undergo therapeutic training.”
In the spirit of its founders LSCS has maintained its radical edge. Almost all visitors have psychiatric diagnoses – schizophrenia, personality disorder, depression. But the service distances itself from a psychiatric medical model. “We are person-centred, and non-medical and non-diagnostic” says Venner.
Take urges to self-injure. Such self-harm is not seen as symptomatic of a medical disorder, but a way of managing psychological pain. So, visitors are permitted to self injure, but within parameters. It must be done in a private room, superficial injuries only, and people must clean and dress their own wounds.
In the context of Leeds-wide mental health provision, it is hospital prevention that the service has made a name for itself. “Hospital prevention is a massive role – it’s the main thing we do,” says Venner. “For example, one visitor who came to us had 18 psychiatric hospital admissions the one year previous for overdosing. During the course of one year when she visited us, she never had a hospital admission. People often say they if it was not for us they would be in hospital.”
Cost per day for one acute hospital inpatient is £259, according to the Healthcare Commission’s Pathway to Recovery paper of 2008. At LSCS it is estimated to be £178. No in-depth study has been made on the financial benefits of LSCS.
"But we are much cheaper [than hospital admission]" says Venner. "And our funders believe we are cost effective."
Moreover, Jane Wood, Leeds Primary Care Trust’s strategic development manager for mental health, confirmed to psychminded.co.uk that LSCS has embedded itself as a vital complement to statutory mental health care in the city.
“It’s a good alternative to going into hospital during those times when most services are closed,” she says.
Veneer adds that such is the respect that visitors have for LSCS that there has not been one violent incident in 10 years. “People will not do things to jeopardise their access to the service,” says Venner.
"And the climate of fear and blame has not effected us as much. Staff on wards are often working in fear, in fear of being hauled up in front of a panel. We are not like that.”
LSCS has been a beacon in radical user-led services. No surprise, then, that Venner was a key note speaker at a conference in November last year in Bradford organised by the Soteria Network which aspires to establish a non-medical residential unit for people in psychosis. Like LSCS it is hoped the Soteria unit will be person-centred. “We listened attentively to what the Leeds service had to say,” says psychiatrist Tim Calton, a past winner of the Royal College of Psychiatrists Research Prize and Bronze Medal, and one of the key individuals behind the Soteria project.
Conference delegates heard Venner discuss the battles LSCS has had to fight to reach where it is now. From overcoming Nimbyism and sceptical, sometimes hostile, critics, to avoiding what Venner calls “isolationism”.
When Venner took over the reins of LSCS in 2005 the service was suffering from desperately poor attendance with just 15 visitors per month.
"Between 2002 and 2005 we had three managers, and the organisation was in mess,” says Venner. “The service had – for good reasons – wanted to be detached from and uninvolved in mainstream mental health services. But it meant it had had become isolated."
One of Venner’s first duties was to get her head down marketing LSCS. “Above all, it was just getting the city to know we are here,” says Venner.
Through such hard work LSCS has exemplified, above all else, that services can be user-led. For this it has made its mark in mental health history.
Leeds Survivor-Led Crisis Service:
* Runs Dial House which aims to be a homely environment where visitors can have one-to-one support from crisis support workers, often person-centred counsellors. Oversubscribed. “It is very distressing having to turn people away,” says project manager Fiona Venner.
* Dial House has a family room, so parents can bring children.
* Offers a telephone helpline from 6pm-10.30pm every night. Has around 5000 calls a year. Staffed by trained volunteers.
* Provides 6-10 week Coping with Crisis groups for people frequently in crisis. Also provides Coping with Christmas workshops, a difficult time of year for people with mental health problems. Also a Dial House Visitors Social and Support Group, on Thursdays from 12pm-3pm. The aim of the group is to provide social contact to people whose crisis is due to chronic isolation and loneliness.
* Is funded primarily by Leeds PCT, Leeds Adult Social Care, the Leeds Personality Disorder Clinical Network
* This article originally appeared in Mental Health Today magazine
Service users / Service provision
Keep us up to date
From: Sajila Arshad, project worker, Edinburgh Crisis Centre, Scotland.
Date: November 18, 2010
You seem to have similar philosophies to us. Keep up the good work Fiona. Would love to hear more from you and your ongoing development in terms of your service and user involvement. Our manager is Jacquie Nicolson
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