The Day We Went to Parliament

After having coffee together, we waved our fast-track passes to gain access to Portcullis House, just opposite Big Ben. Having been security-checked, we made our way from the glass covered atrium to the Boothroyd Room, where the roundtable discussion was to take place.

Jane Harris, Associate Director for Campaigns and Communications at Rethink, was seated alongside another Rethink service-user and me at a large oval table equipped with Houses of Parliament-branded bottles of water and plenty of spare notepaper. Dame Anne Begg, the Chair of the meeting, sat at the top of the table with five other MPs to each side of her, whilst representatives from Sense, the RNIB, Disability Alliance, Action ME, the National Autistic Society, and the Papworth Trust, as well as two independent disability activists made up the rest of the ‘round’. Other members of the public, including two more Rethink staff members, were seated in rows at the back of the room, whilst journalists and a photographer occupied desks along the sides. Although there were quite a lot of people – not to mention two guide dogs – present, the room was large and airy and the atmosphere felt relaxed.

Dame Anne (pictured in pink), herself a wheelchair user and self-confessed recipient of DLA, opened the meeting by explaining that it would be something of an experiment. The Committee had decided that they were keen to hear directly from people who would be affected by their decisions and that they wanted to do so in as informal a way as possible. Although the format had not been tried before, it quickly became clear that Dame Anne was an excellent Chair, making sure that no one dominated the floor and everyone had a chance to speak.

The discussion centred on DLA reform for the first hour, and, whilst all of the charities present contributed, it seemed that the MPs were particularly interested in what Jane and I had to say with respect to the likely impact of the proposals on people with mental illness. I had the chance to explain how I use my DLA to keep myself as well as possible, to cover the particular costs of my disability such as telephone bills and taxis, and to stay involved in my community and society in general. I emphasised that I felt my DLA was crucial to helping me stay out of hospital, creating savings for the state, and I stated my concerns that concentrating the new PIP on those with the ‘greatest needs’ would lead to an increased burden of ill-health in the longer term.There was then some more specific discussion of the plans for a new ‘objective’ assessment, and again I was able to use my personal story to illustrate the limitations of such an approach in the context of fluctuating mental illness. The MPs seemed to take this on board, and Dame Anne said that it seemed clear that there was a case for a different sort of assessment for people whose problems are not fixed in nature, as her own is.

Some of the MPs on the Committee are relatively new to Work and Pensions, and were keen to find out from me what kind of assessment I had gone through when I applied for DLA. I told them about the lengthy form and its limitations, suggesting that more explicit questions were needed and that specific examples relating to mental health should be included when the form is revised, to help people to understand how each section would relate to their problems. I also made the point that there is something of a lottery at present regarding how much help people are able to access to fill in the form, and that the extent of this help can greatly influence the outcome of a claim. The MPs agreed that this appeared unfair and that consideration should be given to offering everyone access to appropriate assistance.

We went on to discuss the review process and I raised some of the concerns which I wrote about yesterday in relation to the burden of self-reporting, the stress of repeated assessments, and the implications of making awards conditional on take-up of recommended interventions. The MPs listened to what I had to say and seemed to take it seriously.

Some also had specific questions, for example, Kate Green MP was interested to hear how we felt carers would be affected by the withdrawal of low rate DLA from claimants not assessed to be of ‘greatest need’. This was an important point because, as some of the charity representatives pointed out, DLA is a ‘passport’ benefit which enables some carers to receive Carers’ Allowance. Without this, many households would suffer significant financial hardship.

There was broad agreement between charities representing people with physical and mental health difficulties that DLA is an enablement benefit which allows people to continue working and paying tax, and that removing it from many people would leave them entirely dependent on the welfare state as, for example, they might no longer be able to travel to their workplace. There was also agreement that there are positive aspects to the proposals, such as the use of the new terminology emphasising personal independence and costs of daily living rather than the frequently misunderstood concepts of disability and ‘care’.

A key point which was raised by Jane Harris was that, even though there is the potential to improve the benefit through the process which is now beginning, there has been inappropriate use of scaremongering language which is causing many people to live in fear – and even to become suicidal – because they believe they are going to lose their entitlement and their lives will no longer be worth living. The MPs agreed that it was important to choose their words carefully and encourage more responsible media reporting of the issue, in order to minimise distress and prevent welfare reform actually contributing to increased levels of illness.

In the second hour of the meeting, the Work Capability Assessment was discussed. Another Rethink service user who has been through the assessment described her experience of being allocated to a ‘work related activity group’ and the fact that this has failed to meet her psychological needs, since her problems relate less to a lack of work experience and more to a lack of self-esteem and confidence. She suggested that counselling or therapy might have been more appropriate to helping her get back to work than volunteering, for example. She also expressed concern about the lack of clarity regarding the time limitation on Employment and Support Allowance, which was echoed by all charities present.

As someone who receives Income Support on the basis of ill-health, I am part of a cohort due to undergo the WCA sometime in the future, so that I can be moved over to Employment and Support Allowance. I was asked whether I had been given any information about when this will happen; I have not, and I voiced my anxieties about the process, especially given the fact that the WCA does not seem to be considered a good test of fitness to work. It was amazing how quickly the two-hour meeting passed. Almost every MP had questions to ask; every delegate had a story to tell. I was impressed with the willingness of the parliamentarians to listen to us as individuals, and to take our concerns seriously. Most of them said that they had heard anecdotal evidence of potential problems with both DLA reform and the WCA in their constituencies, but that our contributions demonstrated that there were misgivings right across the board.

At the end, Dame Anne came to me and the other Rethink service-user and thanked us very sincerely for taking part, saying that it was great to hear from people with mental illnesses, who are often less well represented in lobbying groups than people with physical disabilities, whether due to stigma or because people simply do not expect them to want to talk about their conditions. A reporter from Disability Now also came to ask us if he could use our names in an article he hoped to publish, whilst a presenter from Radio 4 enquired whether we would be available for interview sometime in the near future. Both said that our contributions had been interesting and informative, and that they felt we had made an impact.Of course, we have no idea what decisions will ultimately be taken about DLA or the WCA, but, whatever the outcome, I feel that involving people who have disabilities – and particularly mental illness – in the consultation process, is an important step towards inclusive politics. The MPs told us that they felt that their experiment had been a success, and we left encouraged and hopeful.

Afterwards, we debriefed in the Jubilee Café, before having a quick tour of Westminster Hall and the Central Lobby, where TV cameras were awaiting the emergence of politicians from the House of Commons following Prime Minister’s Questions. I was fortunate that my MP, Naomi Long, had arranged for me to see a little more of the grand buildings, and that she had time to fit in a quick coffee with me before her afternoon meeting with the Northern Ireland Affairs Committee. She told me that she had tried to get the Speaker’s attention earlier so that she could ask David Cameron what he thought about the implications of DLA reform for those with mental illness, but unfortunately she had missed out this time around; however, she promised to try again. It would be interesting to know how well informed he is.

As for me, I thoroughly enjoyed my day in Parliament. All the Rethink team were in agreement that it had been worthwhile. All we can hope for now is that the model tried out today will be used again. If I am invited to contribute, I will definitely be back!