CCNUK: The history and mystery of Care Co-ordination Network UK in England. Do you know more than I do?

This generously-funded charity (I estimate an income of around £1.5 million in its lifetime) has closed down. When it began in 2000 – to promote keyworking and care co-ordination for disabled children – it had all the advantages of powerful allies and excellent models of keyworking projects to draw on. 

Its sudden demise in England raises many questions about how such a disaster could happen in a country where families are crying out for keyworkers. 

Caring about disabled children means we have to care about keyworking.  Caring about keyworking means we have to be disturbed by the short life of CCNUK. At another level, those of us who administer, donate or receive charitable money must look for answers to why CCNUK's vast funds did not produce the desired outcomes. 

Reader might have seen the piece I wrote in the October TAC Bulletin (Issue 125) under the title 'What is the status of multiagency keyworking in England? Are there any keyworkers now? What happened to the generously funded CCNUK? Can you provide information?' I wrote in the hope of gathering some answers to my questions but I received none.  In the end, I put my questions directly to the National Childrens Bureau and the Council for Disabled Children (on the basis that they seem to know everything) and was told 'CCNUK no longer operates in England as its funding from DfE ended, it still operates in Wales.' 

They also said there are 'a number of innovative multi agency projects in existence' and they made the kind offer to write about them in the future for TAC Bulletin. It will be good to learn about these initiatives but I find it very disturbing indeed that no English agencies, public, charity, or other, were able to report valid keyworking projects to me. Not a one. 

I feel as though I am writing an obituary notice now – a task for which I am not qualified in any way. But I will carry on in the hope of prompting others to supply an accurate history of CCNUK and an account of its sudden death in England. I stand to be corrected on my estimate of £1.5 million of income. Was it in fact less than £1 million? Was it £2 million – or more?

I attended the first few meetings in York of the emerging organisation, the first of which in 2000 followed a 1999 conference in Wrexham jointly organised by Wrexham Council and Interconnections. The subject was co-ordination of services for disabled children and their families and speakers and delegates included parents of disabled children, people from York University's SPRU (Social Policy Research Unit), a representative of Joseph Rowntree Foundation/Trust, managers of one or two co-ordination projects in the north of England and managers of three successful keyworker projects in Pembrokeshire, Ceredigion and Yorkshire.

In the later part of that decade I wrote two or three critiques of CCNUK's work in deep frustration that I could not see any tangible successes in getting more keyworkers to more families. I found this inexplicable given the support from SPRU and Rowntrees (at least in the first years), the models of good keyworker practice to learn from, the clear and acknowledged need in families for keyworkers and the commitment and efforts of people in the organisation itself. It seemed all the ingredients were in the kitchen but no pie was emerging.

Surely there is a lot to learn from this sad and premature death.  Keyworkers and co-ordination are tremendously important to disabled children and to many other children, adults and elderly people who are getting care that is dangerously fragmented and disorganised – often to the point of endangering health and wellbeing and causing fatalities.

This is where we should move from history to mystery. Why could English CCNUK not survive? Why was it not effective in getting keyworking and co-ordination to children and families in England? Was it a failure of vision, a failure in strategic planning, or a failure in designing and managing an effective national campaigning organisation? Why could CCNUK survive in Wales to support Welsh children but not in England to support English children? Why and when did DfE pull the plug?

I know from my experience that the keyworking model is a good one. I know of the great benefits when care is co-ordinated. (These are both understatements.) I know that practitioners, by and large, like working in these models when they are properly trained, resourced and supported. We must find answers to these questions (or publish those answers that are already known to some people).  The fight for effective support for disabled children continues and few new projects will have the income CCNUK enjoyed.  Any lessons we can learn will go some way to justify the money and effort invested in CCNUK in England.

Note: I have admitted my history of CCNUK is incomplete and might be wrong in some aspects. My apologies to SPRU, York University and Rowntrees if I have misrepresented their involvement with CCNUK. I welcome all corrections, new information about CCNUK's history and informed adjustments to my estimate of £1.5 million income.

Peter Limbrick, November 2013.  

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