Campaigning for benefits

Derbyshire Patients’ Council (DPC) is an independent mental health service user group which has been in existence for about 12 years now. Until recently, DPC
met once a month to provide opportunity for local service users to have a platform for their voice and meet with Trust Management. The Council is affiliated to
Derbyshire Mind and is supported by 2 Development Officers. Like others groups we have always had more issues arising than we can possibly deal with but have managed to achieve quite a few positive changes over the course of time.

However, 5 years ago one particular issue that came to Council took on proportions that we could never have imagined and brought about a change that we had only dreamed of!

The journey began 6 years ago in 2000 when a number of long stay patients began to talk to us about what it was like trying to live on what was then about £12.90 a week (after 52 weeks in hospital all benefits were reduced to this amount). As Council members began to appreciate the reality of this situation, that some patients were having to wear second and third hand clothing (often belonging to someone who had died) and could not afford to buy Christmas presents for their grandchildren the outrage became tangible. Why were these people expected to live as third class citizens? What had they done to deserve living in such financial poverty?

By the summer of 2000 we had declared war against this injustice. Initial outrage became a roar and so began our Personal Allowance Campaign….

Over the following 5 years we wrote to every possible department that might hold some responsibility for this situation. We wrote to every single MP receiving an overwhelming response from them of shock and surprise. We launched a petition which began on the streets of Derby but by its culmination had received support from service users right across the UK.

Our petition was duly delivered and our local MP, who was supporting the campaign, led an Adjournment Debate on the subject and a number of MPs began to address Parliamentary questions to the responsible ministers in Health and DWP. An Early day Motion was also raised which received a really good response comparable to some global issues!

In 2002 we delivered our petition and paid a visit to Whitehall to question to the responsible Minister at that time. He was frighteningly unaware of the impact of benefit down-rating on long stay patients. Members of Council left him in no doubt that we would not ‘go away’ until this injustice was righted. So the campaign continued with more letters being exchanged and with growing support from National Mind who took the campaign fully on board and began to lobby the appropriate Ministers.

Long stay patients from the hospital where we’re based wrote letters describing what life was like for them on this money and our local MP used them as evidence in the fight. The ‘Big Issue’ covered the campaign for us in one of their magazines highlighting this as a real poverty issue.

By 2004, having been fobbed off by both the DWP and Health Department, we tried another tack and approached the Social Inclusion Director at NIMHE. This proved to be a good move and following a meeting with us he gave his commitment to trying to rectify the situation. Through NIMHE we gained useful contacts with the DWP and the process of persuasion continued.

In the Winter of 2004 we were busy collating hard evidence for a case to put to the DWP and enlisting the official support of all the major mental health and benefit organisations.

In March 2005 we received an unexpected call from National Mind to say that we had succeeded! Gordon Brown had just made an announcement in his Budget speech about the abolition of all benefit down-rating for in-patients. This would be with immediate effect for new patients and from 10th April 2006 all patients who were already reduced to the Personal allowance would have their down-rating restrictions removed. In other words they become entitled to most of the benefits they would get were they not in hospital. This change includes State Pension, Incapacity Benefit, Widows and Bereavement benefits, Severe Disablement Allowance and Unemployability Supplement. It also applies to Income Support, Jobseekers Allowance and State Pension Credit although some disability related premiums will continue to be withdrawn after 12 months.

We have begun to see glimpses of the incredible financial change that people will experience when one or two patients have gone out on leave on £15.90 and come back into hospital on over £100 a week! Obviously each individual situation will be different depending on their eligibility for benefits. There remains a certain group of patients who have been exempted from these changes and that applies to patients detained under section 45A and 47. These people will not be entitled to any welfare benefits until they reach their earliest release date. National Mind is continuing to advocate to the Government on behalf of this group of people.

It has been a long and often frustrating journey and members have experienced many setbacks and disappointments, but in the end our determination has paid off. We have made many friends along the way and thank them unreservedly for all their support. It has been a good example for us of how we as user groups can support each other with common issues of concern. Perhaps there is more scope for collaborative work on issues that affect us all.

DPC hopes that our example will inspire others to realise that a germ of an idea can grow until it eventually influences and changes Government policy. It has certainly been a huge encouragement to us and we will no doubt have other battles to fight as we continually seek to have a positive impact on issues that affect mental health service users.

Niki Glazier (Development Officer)

Reprinted with kind permission from On The Grapevine Magazine published by Launchpad.