Anyway, back now and I’ve just posted my second blog to the Patient Citizen Exchange network. I’m not sure they’ll approve as the network is a government initiative and the blog is critical, so I’m posting it here too:
Planning for LINks
Last week I put an edited version of the DoH document `Getting Ready for LINks - Planning Your Local Involvement Network` on ppeyes. I have to say I'm unsure of just how useful this guide is going to be as its detail is daunting both in terms of the fine print structural practicalities which the LINks and the host body are called upon to install themselves - according to varying local conditions, and the kaleidescopic choice of underlying operative and strategic principles offered.
The document indeed, suggests, offers and prompts rather than prescribing. This is most welcome as for years we service users have been bellowing about the exclusively 'top down' nature of the Department of Health's policies and approaches. At last it seems to have taken notice and we should applaud that.
There are though, three items in the document that I immediately take issue with:
The first is probably a personal prickling at the section which says
A LINk is not.And the particular item making me bristle is that which says
a group of self-appointed people who are unaccountableFor I, as an individual unashamedly identify with the 'self appointed' label, treasuring the principles of free speech. And I know of quite a few others around the country who, in the face of the incompetencies in the governance of PPI, found it necessary to adopt the 'self-appointed' role - thinking and speaking independently of the civil servants of the Department of Health’s Arms length body which turned its back on 30 years' of service user knowledge and expertise. Indeed, operating outside of this arrogantly top down administration has often been the only means of pressing that governing body into listening, and into much consequent progress and learning in PPI.
One too can say the current National Association of Patients’ Forums, set up last year in the face of opposition from those officiating in PPI, is a
group of self-appointed people.
But gratifyingly, and most importantly, what is also obvious from
Getting Ready for LINksis that there has been a significant level of positive and constructive learning from the last three years of PPI - positive and constructive learning - and consequent action by the Ministers and the Department of Health. They are finally doing some of what we
self-appointed peoplehave been repeatedly telling them to do.
There are dark corners where these lessons haven't yet penetrated though. This document does attempt to shine a light into one of these but I'm afraid the Department is using old and leaky batteries and the light shines weakly with much
distortion going on in the shadows. That corner - the important one next to the door, is called Accountability.
Getting Ready for LINkssays:
In the context of LINks, we think of accountability as the process for explaining or justifying actions and decisions, and demonstrating the progress of work that the LINk has undertaken in relation to its roles. No national system of accountability has been put in place, as this should be determined locally.
So accountability doesn’t involve answering for incompetence or abuses and it doesn’t involve any sanctions. Convenient!
Too lengthy to relate here, I spent a great deal of time (as one of those pesky 'self- appointed people') testing the accountability channels for those responsible for the governance of PPI. None of those channels work (you can read the detail at the accountability
section on ppeyes. And presumably volunteers will remain as a get-out for government, local or central, by being legally classed as 'personnel.'
Leaving LINks without any national means of holding those in power answerable and indictable for LINks failures and abuses is a very serious breach of democracy. As is the continuing absence of proper rights for volunteers also set out at the above URL. LINks are going to rely on geometrically increased numbers of volunteers compared to PPI Forums and PPI Forums have struggled both with recruitment of sufficient numbers and the retention of those recruited. And already, mistrust and disgust at government duplicity is bound to lead to many losses. As one PPI Forum Chair - someone who , in the government’s interests, has had her own health jeopardised by the PPI workload - said last week:
I feel used and duped and totally misled by a government organisation which promised me that I could make a difference. I realise now that I have wasted four years of my life. The Forum will not give up until we are finally snuffed out in March. Words cannot express the ignominy and humiliation I feel.