A Journey of Co-Production

If you aren’t aware, Stockton, up until very recently, had some very lengthy waiting times for an assessment of Autism by the Multi Agency Assessment Team (MAAT). At one point the numbers on the waiting list were so high that it was several years between agreement to assess and the appointments to do so. Prior to 2018, work had been carried out by agencies to try and improve the matter but none of that provided a long term solution. When the CCG were able to procure funding, a waiting list initiative was put into place and work began on a whole new pathway. A needs led pathway that would hopefully ensure that as soon as any neurodevelopmental need was identified, support was available. Whilst this work is still ongoing, and most likely always will be as the needs of the population and resources available change, we have recently been presenting the work that we have carried out in Stockton to other areas across the North East, to share best practice and learning.

It is all too often the case that we hold on to the negative experiences and memories. I should imagine that there are many reasons for this, maybes the experiences are much harder to process or the emotions that were evoked as a result are so raw that one small trigger can send you right back to where you were when it happened. There have been many times where I have looked back at a memory and been in physical pain and feel as though nothing has changed from then. I can appreciate how easy it is to remain in this state. It may be that this is how we are as a community, parents and carers who feel lost and helpless to their children, professionals who are not trained well enough, often overworked and underpaid, or in some instances, too arrogant to realise that the system that is in place isn’t working. We are equal parts of symbiotic existence, where one cannot be without the other. However, because of the negative experiences we have had, we cannot see the progress that has been made.

When I was asked to jointly present on the work that had been carried out on the neurodevelopmental pathway, I immediately went back to the very first open event I attended as a forum member. It was mid February 2018 I believe and it had been snowing previously so the roads were awful and it was cold. I sat at the back of the room, asking people to sign in. I had no idea which people were professionals and which were parent carers. By the end of the meeting I knew though. The professionals all had a look upon their face as if they knew not what to do next, and parent and carers were exhausted and emotionally drained. I thought that I remembered this more, because it had been a rather daunting and negative experience, but actually I look back and I think this is when the tide turned.

At the time there were other parent carer representatives who were far more enthusiastic about attending neurodevelopmental pathway development meetings, so as far as I was concerned, that was the first and last that I would attend. Sometimes life doesn’t go as intended and we can’t control the paths of others. For many reasons, within months of this, there were no other representatives to carry out the work, and I started to attend on behalf of the forum. The meetings were not easy and I was stupidly naive, and whilst I wouldn’t say that this was taken advantage of, it did mean that I maybes didn’t challenge enough when I should have. Over time though, as my confidence grew and my knowledge expanded, this naivety dwindled and my suggestions and ideas were head and acted upon more regularly.

When considering the ladder of co-production, we had moved from communicating to engaging. We would flag issues that were arising and rather than just taking that information and doing something with it themselves, they would consult with us about their ideas and ask for opinions after the fact. At one point we raised some issues surrounding the narrative used in letters sent out to parents and carers. I attended a meeting with a representatives from the CCG and NHS Trust Tees, Esk & Wear Valley. Together we redrafted the standardised letters. For the first time, it felt as though the forum were considered to be a partner within this process, not equal, but respected at least.

As a result of consultations carried out by the CCG, there were two priority areas of need identified. Family support and sensory integration support. When the services were commissioned there were concerns raised by the forum regarding what was being offered and how it would work. When they were commissioned we were still at a point in the journey where it felt we were asked after the decisions had been made. When I sat down to write my part of the presentation, I had thought that we were still at that point. As I looked back and considered where we were at, I thought of the most recent meeting I had attended with regards to the pathway. It was a service review. Representatives from the CCG, Stockton Borough Council, the commissioned service provider, and a new parent carer representative from the forum. We sat around and discussed what was working well, what wasn’t working, how could we improve the service or what could be added to offer more to families within Stockton. We made decisions together, collectively, and at the time it hadn’t dawned on me that, once again we had moved up a rung on the production ladder.

After the presentation, a commissioner from another local authority approached me and wanted to know if I was in paid employment. I must admit, I laughed out loud when asked. I asked why she thought that, and she said it was because throughout the presentation I referred to the work carried out as ‘we’. ‘We’ have commissioned…. ‘we’ review the service…. ‘we’ work together. I’m not going to start a discussion on the monetary value of what we do as a forum. We can safely say that none of us are here for the money, we all participate voluntarily. That however does not diminish the level of commitment and work that we put into this. I say we, because, we collectively have worked to develop a needs led pathway in Stockton. There is no longer a need for diagnosis to access lots of services (that is not to say that this myth still exists in some peoples minds).

If we look at sensory support for example. Prior to this pathway, sensory support was only available through the NHS with a diagnosis of autism. Now, there is a Sunflower Sensory Programme. This programme, provides parents and carers with knowledge and tools to meet the needs of their child with sensory processing difficulties. The child/young person is observed by a specialist and an individualised plan is developed for them. We have received only positive feedback from those who have attended the course.

The family support service, requires no diagnosis. The service covers training for parents, carers, children and young people with a neurodevelopmental disorder traits or diagnosis and their siblings. They provide 1-1 support, through meetings, telephone and email. Drop services are held in different locations across Stockton. They also provide training for front line staff including, teachers, early help, local authority staff and the health visiting service.

I know that as you are reading this, some of you may be thinking, ‘this isn’t right’ and ‘they still do this’ and a whole host of other thoughts. I know, because, I did exactly the same thing when I started thinking about it. The point here isn’t about whether there is complete satisfaction with the services that are offered as part the neurodevelopmental pathway, or if they are all running as well as they could be. If you are willing to share your experiences, we would love to hear from you and you can use our contact form to do so or send us an e-mail. This post is about the journey that we have been on.

The feedback that we get from parents and carers is what we use when we meet with service providers, commissioners and other organisations. It is your voices as parents and carers that make a difference. We, as a forum have the privilege of taking those voices and doing something positive with them. Whilst this may not meet all of the wants, hopes and desires of everyone, we work tirelessly to try and get the very best services we can for families in Stockton and we do this through co-production.

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Stockton Parent Carer Forum

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