ROLE network

Relating Outcomes to Lived Experience

Current consultations

Information about recent consultations, including those which have closed, can be found in our archive here .

Current consultations include:

PETITION to end the DLA consultation

Pat’s Petition

This is an open petition, on the government’s website, by a group of individual volunteers, disabled people and carers, who are alarmed by the number of changes taking place and their effect on society’s most vulnerable.
It calls for the government to “Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families“.
The link is here: and more information is here:  Mind, Afiya Trust and many other organisations have sent messages of support.

 Please sign the petition and spread the word around your networks. This petition must reach 100000 votes.

WCA – another Harrington review

Excellent to see that Harrington is emphasising the importance of information from ‘stakeholders’. Please do send in your views – see link below for contact details.

“As you may know, the Secretary of State for Work and Pensions has asked me to undertake a second independent review of the Work Capability Assessment (WCA). This is an important part of the Employment and Support Allowance claim process, designed to determine which claimants
are capable of undertaking work, or work-related activity.

As part of this process, I have today (14th July 2011) launched a call for evidence to gather information from a wide variety of stakeholders on the WCA. I strongly invite you to contribute to the call for evidence by submitting evidence relevant to the questions asked in the document.

The call for evidence and can be found at:

This e-mail is being sent to a large number of people and organisations who have already been involved in this work or who have expressed an interest. Please do share this e-mail with, or tell us about, anyone you think will want to be involved in this consultation. I apologise if this means you receive this message more than once, but stakeholder views really are important to the process.

The closing date for the call for evidence is 16 September 2011 ……

Kind regards,

Prof. Malcolm Harrington CBE”

NICE guidance

There is a current consultation on the draft guidance for ‘service user experience in adult mental health” on the NICE website at

The ROLE network has registered as a stakeholder so that we can send our views in. If you have any comments you would like us to include, please do post them below or drop us an email.

Views needed for PIP assessment criteria

Broken of Britain are pulling together a response about the draft assessment criteria for PIP. They are looking for details from anyone with any health condition, including people who are affected by mental health problems and their supporters. Please do reply to them directly – see their webpage here.

You can also respond directly to the DWP or send in responses from your own group.

We think it is important that views around mental health are included. Our view is that the indicators are very simple and do not take into account how seriously people can be affected by fluctuating conditions.

ROLEcamp – thank you

What a brilliant day – and thank you to everyone who came along and put so much effort into the discussions and conversations. A wonderful bunch of people with a fantastic enthusiasm for improving mental health in the North West.

There was a bit of uncertainty about Open Space at the start of the day – but we all soon got into the swing of it. And by the end of the day it was great to see how everyone had found space to have their own discussions – finding the spaces that they wanted and the rooms they preferred. And most people did stay to the end of the day – how many conferences do you go to where people leave after the lunch?

I’ll now be writing up everyone’s outcomes sheets so that we can circulate a report of the day to everyone who attended, and so that they can take it back to their local communities across the North West.

Thank you to everyone who helped out on the day – especially organisations who provided leaflets and materials. Many  delegates commented that they appreciated all the information they could take away to share. I will create a list of links to all these organisations.

One last special thank you – to the Salvation Army at Preston and their staff. Everyone commented on the great venue – we’d recommend it to anyone. And their staff made the whole day run smoothly. Thank you.

ROLEcamp today!

At last it’s the day of our ROLEcamp event – aiming to look at outcomes from the perspective of people who’ve used services.

We’re hoping to provide updates as the day goes along – so if you have any comments or thoughts to add please do comment here, and on any postings we add during the day.


New 24-hour veteran support helpline

There’s a new 24-hour freephone helpline number, 0800 138 1619, to help veterans and their families access expert advice from people trained and experienced in dealing with ex-Service men and women and their often complex mental health needs. Run by Combat Stress and Rethink, the phoneline has been given funding for a 12 month pilot.


Outcomes report

The ROLE network wrote a report in November 2010 as a discussion paper on outcomes. This report forms the thinking behind our event on March 14th, ROLEcamp.

We looked at nine commonly available tools for outcomes in mental health. We could not recommend any one specific existing outcome measure. We suggest that an approach based on capabilities may encourage a holistic view and be less excluding.

The report clearly states:

  • Outcomes must be selected by service users and carers.

And concludes:

“All we ask is that services always ask of each individual:  ‘What is most important to you and how might we achieve that with you?’

As it says in Equity and Excellence: Liberating the NHS:

“Nothing about me without me”

The report is available in PDF format – ROLE-outcomes2010

Podcast from Just Plain Sense

Karen Machin, one of the founder members of the ROLE network, spoke with Christine Burns, for the podcast Just Plain Sense.

In this Podcast, Karen talks about stigma and discrimination and the link with hate crime.

Christine Burns MBE is the Equality and Diversity Programme Manager at NHS Northwest. She is also a director of Plain Sense Ltd, providing diversity education and general consultancy to public sector and private organisations. She was the Chair of the North West Equality and Diversity Group from 2007 to May  2010 and is now succeeded by Paul Martin and Louise Barry.

Spoon theory

A great description of what it’s like to live with an invisible illness – the spoon theory).