Last update 11th. April 2005

PPIFO

My submission to parliamentary consultation on PPIFs

Dear Sirs

As a member of a MH PPI forum I have many concerns in the way they run and are organised.

In the last few months 2 people died (one person jumped off a car park, the other transferred from a psychiatric unit to a general hospital where they died). Not only have the Trust been very 'secretive' about disclosing information but the PPI members have done little to support my concerns that there were potential issues regarding care provision and appropriate safety support for these 2 individuals.

I feel that PPI forums are often dictated to by the Trusts and members are muffled or pressure is put on for them to tow Trust party lines.

Trust members are in constant attendance at PPI meetings which does not allow PPI members to discuss issues, as a forum, independantly. This sways the power balance very much towards the Trust who use bureaucracy and red tape to block questions and concerns.

The Chairman of the PPIF resigned and the Vice Chair took up a full time position and stood down from their duties, which means that the small membership who attend (4 or 5 of us) have now to share Chairperson responsibilities with no training. We asked if this training could be provided and were told that no money was available. I find this appalling in light of the fact that funding to attend PPIF conferences and events, often miles outside of the county, are funded costing alot more than local and essential training would.

I think there is a specific issue for people with mental health problems when trying to be invovled in patient and public arenas. There is little understanding of or appropriate support and the care and well being of people with mental illness comes a very poor last to maintaining systems and bureaucracies that do nothing to help people to be involved fairly and effectively.

I just hope that the Link Networks are more democratic and empathetic, less bureaucratic and very much independant of service providers or other care organisations.

I also think any public and patient arena must acknowledge that people with mental illness tend to be on very low incomes and having to pay up front and claim back for expenses such as travel can often leave them with more financial difficulties.


Regards


Mandy Lawrence

Manic Depressive and PPI Forum Member


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