User Uninvolvement

Posted today on the National Assocation of Patients' Forums discussion group:

Local involvement networks?

Plans by Health Minister Ann Keen to abolish Patients’ Forums and replace them with powerless ‘talking shops’ called LINKs to 'share views with the NHS and social care' is a strange way of promoting ‘patient empowerment’! The Government abolishes patients’ groups whenever they become effective.

Sharing views is easy, but the evidence shows that to have real influence on NHS and social care services requires experience, persistence and highly effective organisations to challenge the entrenched power of medical, managerial and commercial elites. Their claim that LINKs will be operational from April 2008 is misleading – in most areas they will not meet until late in 2008 or 2009 and will take years to be effective. There will be a long gap in patient involvement when Patients’ Forums close.

'Planning your Local Involvement Network' makes it clear that patients and the public are expected to be passive participants, who can raise concerns, monitor, review, obtain views and get involved in commissioning and service provision, but cannot 'performance manage' services or walk into a hospital or GP surgery, without the consent of the Healthcare Commission. This is a sham.

Funding for the amorphous LINks will not go to the front line ‘members’ but to the voluntary sector ‘Host’. Accountability in the LINKs system will be weak as 'Contracting a host organisation for your Local Involvement Network’ shows, e.g. the indicators of success for a local authority include establishing, supporting and maintaining the LINk, within budget and meeting diversity and inclusivity targets and satisfaction criteria – nothing about supporting the developing powerful bodies of patients and the public who will lead the transformation of local health and social care to meet the local need. LINks will be a bureaucratic nightmare..

Malcolm Alexander, Chair, National Assocation of Patients' Forums

And followed up with this from Ruth Marsden:

The emasculation/marginalisation of the genuine patient-voice indeed continues.

The National Stakeholders' Forum contains professional heads of organisations, not a man-in-the-street amongst them.

Further, the NCI conference, ''Involvement to Impact'', at New Connaught Rooms, London, November, is hugely expensive and effectively prices out PPI Chairs who are amongst those listed as 'Who should attend'. Representations on this matter have been met with the response that the conference is 'good value'.

This conference has cost £152,290 + VAT to put on. LINks are being proposed as a sytem to be 'more inclusive' of those 'marginalised and hard to reach'. How does a glossy London venue with a high price tag enable this?

It really is becoming a scandal. Patient Centred NHS!!! In addition, the report on the Norfolk PCT Intermediate Treatment consultation process by their consultants Creative Solutions shows clearly that they have made very little effort to engage service users themselves and certainly no effort whatsoever to consult with those of us who have difficulty in communication for whatever reason and those of us for who their meetings were for whatever reason inaccessible.