Enabling mental health service users to communicate their views and direct their care requires a variety of routes, says Jennifer Taylor

Mental health service users can be some of the hardest to reach yet they are also one of the most vocal groups about the care they receive. How can trusts tap into their views and help put them in charge of the support they receive?

Mental health service users want nurses and consultants to acknowledge that they have a life outside their symptoms, says Mental Health Network service user consultant Kate Holmes. That means help with housing, jobs and financial matters.

6m - People in Britain who have depression and/or anxiety disorders

1.3m - Older people in Britain suffering from depression or other mental illness

Trusts can form links with job agencies which specialise in finding work for disabled people, work with education establishments to accept service users as students, and have a person attached to community mental health teams to offer benefits advice.

Nationally there is a recognition that work improves mental wellbeing and not working can lead to depression, but some people have never had a job, some have had poor education experiences, and some have had difficult starts in life. People may need help getting access to basic education, training, qualifications and work experience.

“It’s an area that we’re developing at the moment but I think the problem is the clarity of who commissions that, who’s responsible for it [and] whether it’s seen as a priority,” says Lisa Rodrigues, network chair and chief executive of Sussex Partnership Foundation Trust.

These efforts can save money by stopping people from going on benefits, but that translates to savings in the benefits bill rather investment back into services.

“The incentives are quite perverse for local authority and primary care trust commissioners to spend money on these services - that’s a challenge,” she says.

Service users need a variety of routes to comment and criticise, all enabling them to feel safe.

Feeling safe is about “still feeling that you’re in control as much as possible or at least being supported to feel in control and remain self governing”, says Anne Beales, network service user consultant and director of service user involvement at the mental health charity Together.

Some trusts use suggestion boxes, while in others senior managers take people for a meal and an informal chat. Art and poetry can be a comfortable way to communicate views.

Getting diverse views means meeting people at faith events and meeting travellers where they feel comfortable. For black and minority ethnic communities it can mean using people’s own language and having conversations that are not just about mental health.

Ms Beales says: “If you just have meetings then you’ll just get the views of people who like to attend meetings.”

Feedback to commissioners

In the north east of England commissioners are involving service users at PCT level in the whole cycle of commissioning, from planning to delivery through to review.

Their starting place is to audit the skills and knowledge of service user groups then provide training.

Service users should have training on expressing views and how to collect views from other service users, says Ms Beales.

She adds: “The NHS has got to get much more used to articulating, before they need a view, what it is they want their outcomes to be so everyone knows what they’re doing.”

Payment is a thorny issue because it can interfere with benefits. Advice on this and other problems is available in Together’s good practice guide to service user involvement.

Trusts need to be respectful of the fact that service users have their own independent organisations with their own agendas.

“Often the NHS trust will only involve people when the NHS trust wants to hear from them around the NHS agenda, and it’s always on the NHS’s terms,” explains Ms Beales.

The care programme approach has helped to involve people in their own care but one drawback is lack of liaison between consultants and GPs, says Ms Holmes. It can create problems with getting medication and resolving physical health problems.

In Sussex the aim is to find out, when people are well, what their preferences are if they get ill again.

That includes what help they want and when they want the trust to intervene.

Most mental health trusts call themselves partnership trusts because they work in partnership with agencies, including local authorities for housing and social support, and the voluntary sector.

But it is often the tiny initiatives like befriending schemes that service users respect and value most, and it is these that the NHS must form robust partnerships with.

The true scale of mental health problems

  • 25 per cent of people will suffer from a form of mental illness at some time in their lives
  • 17 per cent of the population are suffering from a common mental health problem at any one time
  • One in 100 people suffer from a serious mental illness such as psychosis