ROLE network

Relating Outcomes to Lived Experience

one month before heartbreak

One month before the end of the consulation on DLA reforms.

“The consultation about DLA reform ends on 14th February 2011, Valentines Day. Though traditionally a day for love, this day could adversely affect disabled people should the reforms be adjusted incorrectly. We are holding this event a month before the consultation ends to raise awareness and give anyone who wishes to the opportunity to respond.”

They’ve had a fantastic response with many many eloquent postings about how people will be affected by changes to DLA.

Read full details on the OMBH blog. It includes links to the postings, some of which are distressing to read.

petition to end DLA consultation

We, the undersigned, urge the Minister for Disabled People to recall the Public Consultation on Disability Living Allowance (DLA) reform, and to cease work on reform of this benefit, due to serious flaws in the consultation paper. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people….

Sign the petition here

Robert Whitaker in Coventry

An Evening With Robert Whitaker

Fundraising Event in aid of EleMental Haven for Heroes

Wednesday February 23rd, 2011

6.00 p.m – 10.00 p.m

The Hylands Hotel, 153, Warwick Road, Coventry CV3 6AU

Join us for what promises to be a lively, informative seminar reflecting on the disturbing issues concerning psychiatric medication raised in the best selling book “Anatomy of an Epidemic” by acclaimed journalist Robert Whitaker.

“If psychiatry wants to retain its credibility with the public, it will now have to engage with the scientific argument at the core of this cogently and elegantly written book.”

David Healy, M.D., Professor of Psychiatry, Cardiff University

This is the story of a puzzling—and largely hidden—modern plague. As a society, we have come to understand that psychiatry has made great progress in diagnosing and treating mental disorders in recent years. Yet, mental illness is taking an ever-greater toll on our society. For instance, the number of people on government disability due to a mental illness has tripled during the past twenty years, rising from 1.25 million to more than 4 million. The number of disabled mentally ill children has risen 35-fold during this period. What is going on?


Robert Whitaker investigates that question, much in the manner of a medical anthropologist. In a thrilling and masterfully written narrative, he documents a history of science and medicine that ultimately raises a heretical question: Could our drug-based paradigm of care, in some unforeseen way, be fuelling this modern-day plague?


For further information please contact Sandy at

Evening includes Buffet Curry and entertainment

Cost; £75 plus VAT (£90) – All Proceeds to be donated to EleMental Haven for Heroes


* EleMental Haven for Heroes works with military personnel who experience severe psychotic reactions as a result of service or injury in service. We also offer support to family members and friends who frequently experience the knock on effects of their loved ones mental distress and are at a loss as to how to best support them.



There’s an interesting article in the Sunday Telegraph on self harming behaviours – Why are more women self harming? (The article is on the women’s health pages – men also self harm – see Male Health.)

The Telegraph article does include a link to harmless, an award winning project in Nottingham.Their website includes a page where you can search for links to other services.

A search on self harm and the North West doesn’t result in any links, yet we know that there are active groups who have websites such as Self Injury Support in North Cumbria, and St Helens’ no secrets group. There are probably many others, who don’t have a website.

If you know of other groups in the North West do let us know.

Other sources of information include:

Congratulations to young carers projects

Four North West projects are amongst 15 new projects which have been successful in the third round of funding from Comic Relief, managed by the Princess Royal Trust for Carers.

Caring roles have a huge impact on all people, and the effect on young carers is significant. So it is great to see projects being funded which will help to support young people and their families to reduce the caring responsibilities for young carers.

Dr Jo Aldridge , Director of the Young Carers Research Group at Loughborough, explains: “Long term and disproportionate caring activity among children adversely affects their health and well-being. They are less optimistic about the future and have lower self esteem.”

In the North West, Carers Link at Hyndburn & Ribble Valley, will have  a Link Worker to develop effective relationships with up to 60 families experiencing issues around mental health and/or substance misuse. The Link worker will support the whole family in addressing their needs, and will link across statutory organisations.

In Bolton, the existing successful Young Champions Club will work with young carers aged 8-16 from BME and Asylum Seeker communities. This is for all young carers including those supporting people through distress.

In Cumbria, a dedicated Young Carers Support worker will deliver holistic services to families in specific deprived wards (Ewanrigg, Moorclose, Mossbay, Mirehouse and Sandwith). Again, this is for all young carers including those who support someone through distress.

In Manchester, there will be a project to provide specific support to young carers from refugee and asylum seeking communities, who support someone who has received a HIV positive diagnosis.

GP consortia

The list of current GP commissioning consortia is available here. Although note that Pulse says a second wave will be unveiled as early as next month:

“The Department of Health’s commissioning tsar Dame Barbara Hakin told Pulse that trailblazers who had missed out in the first wave may not have to wait long to be accepted, with new pathfinders likely to be announced in January, and ready to go live as early as February.

She argued that ‘too much had been made’ of the identities of the first 52 pathfinders announced by the Government earlier this month, insisting: ‘Nobody needs to be disappointed in any shape or form.’ ‘  (See full report on Pulse)

This is the current list for the North West:
Read more of this post

NHS Outcomes Framework

The final documents are now on the DH website

DLA consultation

The DWP are now consulting on changes to DLA (closes 14th February). It is essential that they include views from people with lived experience of distress including service users/survivors and carers.

The consultation is lengthy – there are 22 questions you can answer, and much of it is relevant to people experiencing distress.

We highlight that people who could be in hospital for more than 28 days may want to comment specifically on the removal of DLA mobility component.

Question 7 is  also important  – “How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?”

And also Question 9 which is about how to make the form itself easier to fill in.

Link to the DWP’s site for the consultation on benefits.
It includes an easy read version.

For this consultation they are actually producing a hard copy – but you have to pay £14.75 for it. Available from The Stationery Office which provides the following information about the changes:

Disability Living Allowance Reform
Cm. 7984
Department for Work and Pensions (DWP)
TSO (The Stationery Office)

‘Disability Living Allowance Reform (Cm. 7984)’ explains the Government’s committment to maintaining an extra-costs, non-means-tested disability benefit to support disabled people.

Disability Living Allowance (DLA) has become confusing and complex and the Government proposes to introduce a new benefit, Personal Independence Payment (PIP), in 2013/14 when it will begin reassessing the working age (16-64 year olds) caseload.

PIP will consider the impact an individual’s impairment or health condition has on their daily lives. Support will be prioritised for those who face the greatest day-to-day challenges.

PIP will have two components:

(i) ‘Mobility’ – based on ability to get around.

(ii) ‘Daily Living’ – based on ability to carry out other key activities necessary to participate in daily life.

The benefit will only be available to those with a long-term health condition or impairment: individuals will have to qualify for a period of six months, and will be expected to continue to qualify for a further six months before an award can be made.

There will be an objective assessment of individual need, with no automatic entitlement.

The assessment is being developed in collaboration with a group of independent specialists in health, social care and disability, including disabled people.

The Government is considering how best to take account of use of aids and adaptations, and how they are used and paid for. Awards will be reviewed periodically, but individuals will still be responsible for reporting any changes in circumstances.

The feature of DLA entitling the individual to other help and support will be retained.

Personal health budgets

Please can you help by completing this  personal budgets survey ?

It’s for all service users/survivors and carers, including people who don’t know very much about personal budgets or personal health budgets – your information will help them understand where the gaps are.

The Mental Health Foundation, a national charity, is conducting the survey to collect service user and carer views on personal health budgets in mental health.

A personal health budget tells you how much money is available for your care and lets you agree the best way to spend it.

They want to find out:

  • how much people know about personal health budgets
  • what support and resources are needed to help people access this service
  • how to provide this support.

The survey  will be followed up with more in-depth discussions around the country in the New Year. The ROLE Network is working with the researchers to make sure that views from the North West are included.

If you would like an email or printed copy of the survey to complete, or more information about the survey, please contact Jayasree Kalathil at or 02086409052.

To find out more about personal health budgets, visit the Department of Health’s personal budgets page. This shows a list of the places which have been pilot sites. In the north west this includes:

  • Ashton Leigh and Wigan
  • Central and Eastern Cheshire
  • Cumbria
  • Halton and St Helens

Please complete the survey online here

New National Carers Strategy

Links here to the Government’s new priorities for carers:

“the Government will … ensure the best possible outcomes for carers and those they support, including:

  • supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages
  • enabling those with caring responsibilities to fulfil their educational and employment potential
  • personalised support both for carers and those they support, enabling them to have a family and community life
  • supporting carers to remain mentally and physically well.”