WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

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Thursday, 1 July 2010

An Appreciation of the National Association of LINks Members

The other day I was browsing through some older files looking for a particular report when I came across some old saved e mails from 2005 and 2006. These mails are from PPI forum members in different parts of England: at least three forums in London; forums in the south west; eastern england; Manchester; and the east midlands. I can mention four names I know will not object to their inclusion here: Dr Janet Albu, who I think we should present a tribute to on the next anniversary of her death and our irreplaceable loss; Ruth Marsden; Martin Rathfelder; and, of course, Malcolm Alexander.

The mails were about supporting each other over forum members’ difficulties with their Forum Support Organisations and the now defunct Commission (CPPIH). Later, our communications were around the structure(s) and powers of the proposed LINks. One quote from these is:

“In my view if we want to get bodies that achieve the best results for patients we have to first ask how we can be most powerful as bodies of patients and the public in exercising real influence over health policy, local decisions about heath services and national policy on the NHS. Structures will follow from that. Have a good day all. All the best. Malcolm”

Earlier, in August 2004 in a report about what possibilities were afforded by the prospective abolition of CPPIH by the John Reid Arms Length Bodies Review, I wrote:

“I would favour the recommendations of the scoping report commissioned by the government in February and March 2001 and facilitated by the College of Health, the Long-term Medical Conditions Alliance and the Patients’ Forum. In brief, that report recommended an elected membership organisation and that:

         ...the national body should be inclusive with membership from any organisation interested in health...It may be important to to encourage and assist smaller groups to come together in support networks.” They went on to say in appendix 2: “...if the body had an ethos that was grounded in the experiences of patients and their carers, inclusive of diversity, open and facilitative, it could greatly strengthen the voluntary health sector, large and small, and make the patient/public a force at national level.”

Janet Albu, in November 2006 said:
We do have a start: the Network of London Forums has been going for quite some time. We have not exactly been helped by various CPPIH policies. For example I was one of the scrutineers in the recent election to fill three vacancies on the democratically elected Executive. Despite all concerned having give their permission for contact details to be available to Forum members, CPPIH insisted that the confidentiality clause be observed on every separate occasion. This has caused errors and delays. Part of the CPPIH remit is to encourage interaction between Fora, and their interpretation of this is at the very least bizarre. The fact that we are indeed acting together is directly due to the actions of a few individuals. I do know that there are groups of Fora communication at a local level; it would be good to be in contact with one individual from each group.
The original e mail communications expanded exponentially until Ruth set up a large mail group, sending out bulletins and bits of information to us all throughout the process of the Bill setting up LINks and the Health Committee Inquiry. Many of us joined in various debates. A ‘National Association’ was mooted with some opposition from the still functioning CPPIH. Then at the beginning of May 2007 there was a:

“NASG Meeting, 22nd May, 07, London. The group is to be known as the National Association Steering Group... Malcolm Alexander of London Ambulance Service PPI F was elected Chair. Ruth Marsden of Hull Hospitals Trust PPIF was elected Vice Chair.”


Out of these antecedents the National Association of LINks Members was born. Malcolm has been an excellent Chair, with exhaustive relationships building and promotion of NALM. And Ruth has been a pivotal and invaluable central influence - from those earliest days with issues such as the imbalance in the use of CPPIH finances, starving PPI forums of funds to today’s regular mailings to the whole of the NALM membership. I’m looking at my NALM mailbox and I can’t begin to list the the breadth and variety of essential information Ruth has provided us with. She is truly astonishing.

So, on the day LINks became a legal entity, NALM said in its first statement:

“On April 1st we began building a national, user-led, democratic organisation of LINks members and supporting and advising members during the transition to LINKs. We are committed to highly effective, inclusive local community involvement and accountability in health and social care services. We hope that a significant number of the 5000 trained and experienced volunteers who have been members of Forums will help to develop local leadership able to influence local authorities and the NHS.”

On achieving this, one seminal aspect that pleases me is that NALM has fulfilled that above recommendation of the College of Health, the Long-term Medical Conditions Alliance and the Patients’ Forum which the Department of Health threw out - it is said, for the fear of such a body becoming collectively powerful enough to challenge the elite bureaucracies. Well, in spite of struggles for recognition and opposition from DH, we now have such a body.

I am truly proud to be a member but before I finish, there is one other important aspect of NALM I’d like to highlight. For some time now I’ve been, once again, railing at charitable, independent and social non-profit organisations’ obsession with modeling their agencies on business methods, with formal committees and hierarchies. One of my first recommendations to the John Reid ALB Review a few years back was that it was inappropriate and counter-intuitive for PPI Forums to do that (I know, I know, many LINks do). I said only yesterday in a mail to the National Coalition for Independent Action (
http://www.independentaction.net - well worth a look):

“Managerialism has been the grit which scarified my insides through 30 years of professional mental health social work (resulting in a troublemaker label) and it has continued to grate through the last ten years of voluntary activity in health and social care service user involvement.”

The National Association of LINks Members itself presents a very healthy, effective and organic way of how not to do it based on rigid, pedantic business models.

Brilliant NALM, just brilliant and here’s to a successful future.

Iechyd Da.

1st July 2010.

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