Those in the mental health system often find themselves silenced, undermined by lack of early intervention, and being placed in a service that does not support their needs. But if the mental health system is to improve, we need to listen to these voices and to have them shape the services and policy we offer. People who use mental health services are those best placed to say what they need from these services, rather than being seen as just passive users in the system.
User-led services are about giving those with mental health needs autonomy. Organisations are advocates for them so that they can then become advocates for themselves.
Services led by users are about increasing patients' participation in the services they receive. The 1990 Act from the Department of Heath emphasises user-involvement in both the design and delivery of the NHS, which includes mental health. It was in the government’s White Paper, Equity and Excellence: Liberating the NHS, in July 2010, which expressed the government’s commitment to involving service users, stating that: “In future, patients and carers will have far more clout and choice in the system; and as a result, the NHS will become more responsive to their needs and wishes. People want choice, and evidence at home and abroad shows that it improves quality.
Yet, despite this policy, it is those with mental health issues who seem to be the last to be consulted when it comes to the mental health system. If you’re a policy maker who finds yourself on a committee where you’re discussing mental health - but don’t see anyone who will be directly affected by this policy at the table - what does that mean about your findings or conclusions? Who are your answers going to reflect? You might be asking the right questions but, if you’re not asking them to the right people, you could end up undermining those you’re meant to represent.
User-led services in practice
User-led services are about giving those with mental health needs autonomy. Organisations are advocates for them so that they can then become advocates for themselves. One of the women Wish has previously worked with, Yolanda*, had been sent to a psychiatrist who had been very negative, actively discouraging and preventing Yolanda from moving forward and perhaps perpetuating her experience of gendered abuse. Wish helped her to stand up to him and feel equal as a human being, giving her power in a system where she currently had very little control. By arranging different psychotherapy appointments and supporting Yolanda in completing them by accompanying her to these appointments, Wish supported her to the point where she could become her own advocate.
- See also: The 'female hysteria' myth continues to undermine women's mental health care
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That is why it is important that the women’s mental health charity Wish is a user-led service. The voices of the women we represent are at the heart of what we do, with women with mental health needs making up the majority of our Trustee board. And through our latest project, the Women’s Mental Health Network, we are consulting with women via a survey to find out what issues within service provision are most important to them, and the findings of this consultation will then dictate the campaigns we’ll run to ensure that these women’s voices are heard at a policy level.
The reason we’re running this consultation is because being a user-led service doesn’t just mean having a rubber stamp of approval at the end, but involving those you represent at every level, from research to policy to campaigns. In all Wish do, we actively work to ensure that more power lies with women at both a service and organisational level. This empowerment of those with mental health needs is another reason why mental health services need to be user-led, highlighted by the Mental Elf’s analysis of the recent study on Service user and carer involvement in mental health care safety: raising concerns and improving the safety of services.
They concluded that as many as 77% of service-users and carers reported that it was ‘difficult’ or ‘very difficult’ to raise concerns about safety with mental health staff. This indicates that service-users need advocates and to be empowered to be advocates for themselves so that they can raise concerns about safety without feeling isolated or scared. Yet there are fewer and fewer user-led organisations, with the ones that still exist finding themselves marginalised.
This is why it was vital for the Women’s Mental Health Network to include user-led organisations, like Wish, People First and NSUN. And we hope that policy makers will want to work alongside this Network. Given that the Women’s Mental Health Taskforce are publishing their recommendations and strategy this Autumn, we hope they, and other similar indicatives, will want to link up with our Network so they can have a strong user-voice.
The current conversation around mental health seems to put the onus on those with mental health needs to battle the stigma, which is incredibly important, but these voices shouldn’t be told they’re only valued in opening up the conversation, they should also be an active part of the conversation, sitting in these committees, talking to policy-makers.
By filing out our consultation, we will ensure that your voice is heard in our Women’s Mental Health Network. You can find the consultation at:
*Please note that the name has been changed