31 July 2014

Stephen Bubb admitted in his blog last week that his Breakfast Meeting the week before caused uproar (my word not his) because the voices of those who really matter weren’t at the table – people with Learning Disabilities, who actually use services, their carers and their families. Bubb cited that this was by ‘omission not commission’ and that I can well believe. But, I’d argue, it matters not, by accident or by design, we all should seek out and facilitate the involvement of those potentially affected by, or interested in, a decision. It is that simple. 

I have to say we don’t always get it right here at ARC – only a fortnight ago Philipa Bragman CEO of Change gently admonished us for missing such an opportunity at our Active Support Annual Conference in Cardiff in September. She was quite right to do so. Being one of the first cohorts trained by IAP2 (International Association for Public Participation) way back when, I passionately believe that those who are affected by a decision have a right to be involved in the decision-making process. 

Involving the right people promotes sustainable decisions because they recognise and communicate the needs and interests of all participants – it makes the promise to all stakeholders that their involvement will influence the decision – this is why it provokes such anger when we get it wrong.

I was heartened to hear that the voices of people with a learning disability, their advocates and families were heard at the follow-up meeting on Monday. It’s certainly an improvement on an exclusive Breakfast Meeting, which, frankly, are always problematic and long been derided by parents and carers as they pay no respect to people with such responsibilities and often viewed as a tool for self-importance and grandstanding.

And this is what worries me about the second session – inviting such a small group of stakeholders together in order to ‘solve’ the problem of the missed government pledge on Winterbourne View is still pretty short-sighted in my book.

ACEVO are an organisation for charity leaders, and part of Stephen Bubb’s job is to make sure that such leaders feel they have a strong and influential voice. As he described in his blog, he had been asked what he could do to help directly by NHS boss, Simon Stevens. Never mind that some of the organisations, whose chief executives he describes in such sycophantic terms, were all there at the start and leaders of the original Winterbourne Concordat. It was arrogant to consider that the group was representative enough to be given the lead for an NHS project when other critical stakeholders were, and still are, missing.

That seems particularly misguided when you look at the voices that have been expressing deep concern at being left out of the picture. Both Mark Neary, whose son Steven was in an inappropriate hospital placement for almost a year and Sara Ryan, the mother of 18-year-old Connor Sparrowhawk, whose death at a learning disability unit last year was found to have been preventable, have questioned the process. Has Monday’s meeting addressed this process? Bubb, by not inviting a wider group of stakeholders to his planning meetings, (breakfast or otherwise) implies that certain people aren’t important at all. The shot across the bows from Philipa at Change, about our Annual Conference reminded me of how important it is to involve people at the start of a planning process.

It is not good enough to promise, after the event, that other people will be consulted later on. It is essential that people who are likely to be affected by a decision, or a plan of action, are involved in the initial setting of any strategy. Once something has been formed and is out for consultation any changes are usually only tweaks in the margins. The promise of a summit to get people together doesn’t draw people into the heart of the process – good quality involvement seeks input from stakeholders in designing how they participate! And that’s all stakeholders.

Perhaps the most unfortunate outcome of the misjudged breakfast, and subsequent meeting of contrition, is that it has still done a great disservice to providers. Provider umbrella organisations such as ARC UKbild and H&SA, who provide space specifically for providers who support people with a learning disability to come together with people with learning disabilities and their families for improvement and innovation in support, were absent from the breakfast. They were absent from Monday’s meeting as well.

The antagonism that has now been expressed towards providers when only a few were present or represented is damaging and sad. This is a time when we need to be building relationships and collaboration not erecting barriers of mistrust. It can only be by all stakeholders working together that lasting change can happen and that does mean that providers, both big and small, across all sectors – third, public and independent – need to be in the conversation.

All of us, commissioners and providers and umbrella organisations must always remember that the primary voice must be that of people who use services otherwise we are bound to fail. On that note, I’m confident that Monday’s meeting, with the new voices bringing extra energy and knowledge, will come closer to identifying solutions most desperately needed now. Evidently, the related documents will be published on the NHS England website (to be made public ‘soon’) and this will allay any fears we still harbour. Perhaps too we can forgive the enigmatic blog entries if it means we move forward positively and can build up a ‘virtuous circle’ – a circle in which we defend the engagement of all partners in order to ensure that solutions are designed together and managed in a way that makes sense for people using services, and their families and carers.

Jacqueline Bell