Is anybody listening?

 Mental health services are vulnerable to cuts and changes, but when consulted on these, service users are not always being listened to, as Andrew Mourant reports:

‘Nothing about us without us’ is a familiar mantra in mental health services, stressing the role of the individual and the importance of service users being consulted on what happens to the services they use. Yet levels of consultation with service users have long varied wildly from health trust to trust. And, as spending cuts bite, those at the sharp end are feeling vulnerable. Some, in fact, feel abandoned.

Wards are closing; counsellors are being axed, care co-ordinators are being taken away. Where’s the voice of the patient or service user in all this? Sometimes listened to, but often not. And sometimes there’s no discussion whatsoever.

“Many people are being discharged from secondary care to their own GPs and not being consulted,” says London-based academic researcher and mental health service user Dr Diana Rose.

“It’s happened to me. I have lost my care co-ordinator and no one consulted me, though I’m still under the care of my consultant psychiatrist.”

Dr Rose has fond memories of her last-but-one care co-ordinator. “A really good one… she wasn’t over-intrusive. In the time I had her, I didn’t have a spell in hospital, but since losing her, I have. I had a new co-ordinator whom I met once, but then she left.”

Had someone properly consulted Dr Rose, this unfortunate outcome might have been predicted and avoided. One cost saved, another incurred; and service user welfare seems to have been squeezed out of the equation. Dr Rose says she knows of two London trusts that have scrapped care co-ordinators, though is reluctant to name them.

Window dressing
Where consultation does take place around proposed cuts, mental health charity professionals say it’s often little more than window dressing. “We’ve heard from someone using services [that have been closed] it was very much a tick-box exercise,” says Mind’s head of policy, Vicki Nash.

“In fact, we hear regularly from providers and directly from users, and I think it’s generally felt that people aren’t being consulted. In some places people have used the law where they feel consultation hasn’t been done properly, with the result that NHS trusts have had to redo it.

“We’ve heard other examples where people don’t feel consultation has been carried out properly, where patients haven’t been heard.”

Not listening to service users’ views in consultation can end up with services that are not patient-focused, Nash adds. For example, if local crisis services are closed – which service users would want to keep – it means that people have to wait until they are really unwell before they are admitted to hospital.

“We understand the need to save money but you’re just storing up costs elsewhere – people end up being admitted to A&E. Yet we know that the more people who are involved in the planning of services, the better they are.”

Consultation played almost no role in the drastic reduction of services to a woman in her 30s with a genetic condition that has given rise to bipolar symptoms. Anne Beales, director of service user involvement at mental health charity Together, says all the progress that allowed the woman to move from round-the-clock residential care to supported accommodation has been undone.

“She’d been getting three to four hours support a day, and help with cleaning herself and shopping. That’s now been cut down to dropping her off a packed lunch five days a week,” says Beales, herself a service user. “She’s very likely to be admitted to an acute ward – she’s become so smelly she can’t go into the local shops.”

From Beales’ experience, consultation around closing day services often takes the form of ‘you can come and tell us what you want as long as it’s what we want’. “There are debates but local authorities and commissioners set the boundaries,” she says.

User groups
But investing in user groups can make a big difference, she adds. Once well-established, they can play a crucial part in mental health care. For example, for seven years, Together has had national and regional service user steering groups that inform, influence and lead its work at a strategic and local level.

“This makes sure that service user opinion can help transform our existing contracts,” says Beales. “We’ve been partners with local authorities and service users in transforming day services under our ‘Your way’ model. We make it really work – self-directed support isn’t just a tick-box scenario.”

Meanwhile, in Northamptonshire, the NHS Nene Clinical Commissioning Group included service users from the outset when setting up contracts – an exercise that worked because there was “a commitment in spirit… it wasn’t just tokenistic,” according to one service user.

In the group, two service users acted as ‘subject specialists’ on equal terms to other advisors. They became part of the core decision-making team, helped by technical advice from the contract manager and procurement officer.

They reported in detail on the meaning of wellbeing and access to mental health services. A contract was devised based on ‘robust understanding… of service user involvement’ and best value for money. “We couldn’t believe how much we’d be able to influence things,” said one user co-commissioner.

Consultation
Antonia Borneo, policy advisor at Rethink Mental Illness, says that amid the state of policy flux and shift towards localism, local authorities will have a lot more control over services in the future, but the charity is concerned about their understanding of mental health and ill health.

“Consultations are still very much in the old style, where service users are brought into discussion at quite a late stage when [local authority] people have more or less decided what they’re going to do,” she says. “It’s very disheartening for people who’ve been in the mental health system for a long time, who’ve given feedback and feel they’ve been saying the same thing for years and years.”

She adds that examples such as in Northamptonshire show what can be achieved. Borneo hopes the current climate will drive health services to work smarter. “It’s about getting people stabilised, helping them recover and achieve their potential – the most expensive approach to mental health care is repeated use of hospitals. If things are tailored to the individual, the savings that are made through reduced trips to the hospital are potentially immense.”

Vulnerable services
Yet while mental health care is now meant to be about the individual, personalisation – the means by which patients can purchase their own tailored care package – is regarded as a weasel word by some professionals. “Most people aren’t eligible – the thresholds are set so high,” says Dr Rose.

She believes mental health services are inherently vulnerable. “They aren’t funded on a payment by results basis; the money isn’t ring-fenced so it’s easy to slash. After the 1998 health service framework, money was poured into services but now it’s been withdrawn again. I don’t think service users have been consulted. People think they’re having a say and discovering it isn’t the case. I have some colleagues including psychiatrists who’ve been around 40 years and who are in despair.”