NSUN network for mental health is an independent, service-user-led charity that connects people with experience of mental health issues to give us a stronger voice in shaping policy and services.

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Making it happen for us!

NSUN and partners ran a highly successful conference on making personalisation work for black and minority ethnic people who have experienced mental health distress, 30th March 2012.

Personalisation: Making it Happen For Us, funded by the Mental Health Strategic Partnership, heard from a range of people on:

  • how to make personal health budgets work best for everybody
  • why there may be problems for specific groups

During the day NSUN captured the views of the service users taking part in a statement (below) that was agreed by the conference at the end of the day.

You can download a report of the conference here.

We published an article about the statement in the Guardian 16th April 2012    A plea to councils: give personalization a chance . 

You can read the full article here.

We intend to raise the views it contains during our discussions with the Department of Health and other influential in health policy and commissioning.


The statement

Talk of no decision about me without me and no health without mental health from ministers needs to be matched by urgent action.

People with experience of mental health distress must have the fullest possible access to their own personalised budgets particularly when they are rolled out more widely next autumn.

As the Department of Health pilots of PHBs (personal health budgets) ended, mental health service users from BME (black and minority ethnic) groups met at a conference to discuss how they could have fairer access to the new funding that is meant to end the 'one size fits all' approach in health and social care.

This is particularly important for BME people with mental health conditions as this group are far more likely to:

  • find themselves in secure hospitals
  • the subject of community treatment orders
  • with more stigmatising and serious diagnosis and medication than their white peers.

The Personalisation: Making it Happen For Us conference in London discussed why this was the case and how to address this in-balance in treatment.

They heard that whilst people from BME and poorer communities were more likely to be diagnosed with severe mental health problems than white people, particularly those from higher socio economic groups, who were more likely to be diagnosed with more minor conditions or even just called 'eccentric'.

As a result BME service users are less likely to be signposted or referred to talking therapies, such as CBT (ognitive behaviour therapy), and therefore end up with later and more severe interventions.

This is exacerbated by the fact that people without family in the UK are also more likely to be hospitalised, over diagnosed and over medicated.

This in-balance starts at a young age with BME children and young people under-represented in children and adolescent mental health services.

BME children and people more generally should also have more access to positive black history and cultural understanding as well as culturally specific therapeutic methods.

BME communities themselves, properly resourced, must take responsibility for promoting these ideas and tackling stigma around mental health conditions that exist within their own communities.

Knowledge is power and BME service users need to be given the right information to be able to access talking therapies and other less severe interventions.

By taking control of personal budgets BME service users could have control of their own care by commissioning support from the people and services that will help them recover, stay out of the 'heavy end' of services and therefore save taxpayers money.

However fears were expressed that local authorities facing budget cuts are diverting funds meant for personal budgets to other areas. This is a particular temptation for councils serving BME communities as these tend to be in inner cities that have had a disproportionately high cut in there budgets.

An audit should be carried out to establish the extent of this problem and steps taken to address it. There are also worries that councils are only giving people small, indicative budgets which go against the spirit of liberating people to buy the services they need. This could be open to legal challenge and this avenue should be investigated.

Local authorities should recognise that properly resourced and managed personal budgets will save councils and NHS money.

NSUN will write a briefing document summarising the evidence for the economic benefits of meaningful personalistion. Personalisation can work most effectively for people with mental health conditions because personal control is shown to help recovery by building confidence and skills.

Some individuals find managing finances challenging and in some cases money trouble led to or exacerbated mental health conditions. An answer to this may be through service user peer group management which should be promoted and facilitated.
Delegates decided that the human rights of mental health service users are too often ignored and there needs to be a proper system of redress. Suggestions for doing this included forming an alliance between the British Institute of Human Rights, NSUN and others to ensure that excluded and marginalized people, sometimes being discriminated against on several levels, are listened to and given proper recourse to equality and justice. A first step could be a joint conference to take these issues forward.

More work needs to be done on BME experience of personalisation and there as agreement to meet again at the charity Together to take this forward. Feedback will be given to NSUN for wider dissemination and further development. To make this reality we need to build on the momentum.

Real recovery, not just pacifying people with medication, is best achieved through investing in service users and carers to make their own choices and provide services themselves. To enable this at a local level, we need to:

  • map every CCG (clinical commissioning group) and cluster area
  • identify and link service users and carers to them
  • look at training for this
  • perform an audit of presence on each CCG

This would be a first step to resourcing these groups to take responsibility for their own care.

To turn rhetoric on empowering service users into reality people need the appropriate resources and support. Personalisation is an opportunity to do this but only if those in control equip service users from all backgrounds to make their own choices.

You can access more resources in the members' area of the website. If you're not a member already just click here.