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MIND Conference 2006 : Harrogate 15th and 16th March

The theme of this year's MIND Conference was service user involvement and it was entitled Feeling Used – Making Service User Involvement Real. Whilst the main parts of the conference focused on service user involvement there were also discussions and debates on subjects such as the Mental Health Bill and incapacity benefit reform; the mental health tsar Professor Louis Appleby gave a report on the current state of mental health services in the National Health Service and there was also discussion of service user empowerment with the direct payment scheme.

My full report on the conference is available (here) on the National Voices Forum website www.voicesforum.org.uk or a written copy is available from the National Voices Forum Officer Worker Rachel Brett at the address given on the back cover of this Perceptions edition. A stamped addressed envelope would be useful in saving postage costs. (note: you are currently reading the report on the Voices Forum website)

Two extracts from my report are published here: reports on the debate entitled To what extent is service user involvement a sham and on the debate about proposed reform to incapacity benefit.

Thursday 16th March: Debate
To what extent is service user involvement a sham?

Marrion Janner, a service user, opened the debate by speaking of her own experience of the mental health system and by asking to what extent should service users be involved in running services and to what degree should they be kept informed: service users should be involved in the design of services and be able to feed back on the use of services. Marrion spoke of the Star Wards project which she runs: she found that most patients on acute wards had nothing to do all day except to wait for meal times. The project is designed to animate acute wards, transforming them into places where patients actively contribute to their own recovery – patients can engage in their own recovery process through therapeutic activities. Patients are encouraged to keep their own records in a personal recovery file.

Lindsey Dyer of Mersey Care NHS Trust stated that her Trust showed the best example of service user involvement in the country: service users have the right to have a say in what affects their lives and there is a rights based approach to treatment. There is leadership from the top to get service user involvement into the culture of the organisation and service users are just as important a resource as the paid staff. There is also encouragement to help the transition from being a service user to becoming a paid member of staff and service users are encouraged into employment with the Trust.

Peter Campbell described himself and a mental health system survivor and activist rather than a service user. He felt that service user involvement was indeed a sham and pretence. He said that mental health services’ and society’s response to his mental distress was through stigma and exclusion. He wanted service user action rather than just involvement: service users should set the agenda and take the lead. However there is also compulsory involvement rather than voluntary involvement which is negative as service users should not be forced to get involved. Involvement is a very seductive idea but service users are still very powerless: service users can feel marginalised and there is tokenism, lack of informed choice, jargons. In one case he spoke of how two service users resigned from a group designing national policy because another member of the group was derogatory to their service user status. Involvement can be marginalising and service user initiatives can be taken over and service users don’t get the credit. However there are examples of good service user involvement and on a genuine to sham scale involvement is two thirds genuine and on third sham. He said the service users should be empowered rather than just involved. User involvement comes from the ground floor roots. Users should run services and take control by setting their own agenda.

Can service users influence services when there are budgetary restrictions? Service users should be able to influence the way money is spent. How much influence does the individual service user have to influence his/her own treatment? There is a difference between empowerment and involvement – trusts still hold the power but there should be equality in decision making - service users are still not fully empowered. Service users are still disempowered by the psychiatric system and social attitudes and service users therefore remain suspicious of the so-called involvement partnership – partnership being a sham word.

The debate continued with comments on the need for users to set the agenda, be involved with setting budgets and commissioning services in NHS Trusts. It was felt that public criticism was important as well as working with the system for improvement.

Thursday 16th March: Debate
Incapacity Benefit Reform

Charlotte Wightwick a representative from the Department of Work and Pensions (DWP) opened the debate by talking about the incapacity benefit reform proposed in the current Government green paper. She described the reforms as empowering people to work with a 3 pronged strategy:

* to help people stay in work longer

* to help people on incapacity benefit back into work

* to better address the needs of people while on incapacity benefit.

In order to help people stay in work the Government would talk to unions, employers and general practitioners and reform statutory sick pay and improve the gateways back into work especially for mental health service users. The Government wanted to minimise appeals from people losing their jobs on mental health grounds. The Government wanted to increase the number of people leaving incapacity benefit by replacing incapacity benefit with an entirely new benefit and by building on the Pathways to Work scheme. The new benefit would be called the Employment and Support Allowance and there would be additional payments for the severely disabled. For those on incapacity benefit already their benefit levels would be protected but the majority of people receiving benefit would be encouraged back into work. Ms Wightwick emphasised the green paper was only a discussion document at present and not definite policy.

Benefit expert Martin O'Kane, Deputy Manager of Community Development for Derbyshire Mental Health Services, asked whether the DWP was up to the job of incapacity benefit reform. He said that there had been 30,000 redundancies in the DWP and their customer management system was currently inadequate. More than 60% of DWP decisions were overturned on appeal showing that there were flawed decisions and that the decision making process was poor. Staff are poorly trained – so how can we talk of reform? With regard to the extension of the Pathways to Work scheme the DWP staff is still unaware of mental health issues although they call themselves “specialists”. There is also a conflict between employers and the DWP as there is stigma in the work place for mental health service users. In a target driven agenda are the individual’s needs really considered? By 2008 everyone on incapacity benefit will have contact with the Pathways to Work scheme.

With regard to the green paper Mr O'Kane was doubtful that the DWP will get it right with the individual’s medical assessment and the individual’s needs. There will be an extension of compulsion into work and benefit sanctions if service users do not comply into seeking employment. He asked that if people wanted to work why compel them to do so? If mental health service users found work beneficial why threaten them with benefit sanctions if they do not engage in employment? And who decides on an individual’s capability to work?

Mr O'Kane said that the alternative way forward was to listen to what service users and mental health professionals said about work and to drop any sense of compulsion into work. Incapacity Benefit should offer a real income to those who cannot work– not an employment support allowance and poverty. There should be opposition to negative propaganda in the media tabloids who are unsympathetic to those claiming incapacity benefit and who talk of the “sick note culture”. To conclude Mr O’Kane challenged the DWP as to whether they were capable of handling any proposed reform anyway.

Nick Fletcher a service user representative claiming incapacity benefit said that people who received the benefit had no choices and that their lives seemed to be controlled by the DWP – they were constantly afraid of losing their benefit and claiming benefit was a degrading and humiliating process – people claiming are made to feel less than human. He is afraid of being coerced back into work and afraid of the sort of work he would be made to do. Claiming benefit causes anxiety and distress – the Government lacks compassion in the way it treats incapacity benefit claimants. Service users wanted well being not work. The Government does not take notice of people. The only reform that was needed was reform of the DWP whose services were stressed at present. In the past the Government had been happy to reduce the unemployment figures by putting people on incapacity benefit, currently some people on job seekers’ allowance should be on incapacity benefit. The Government pretends they want to help people on incapacity benefit but really they are just interested in saving money – they are considering finances rather welfare interests.