Whatever we find out we share

Recently, I had the pleasure of helping to organise a meeting between the Shadow Care Minister, Liz Kendall MP, and members of the Partners in Policymaking network, which is hosted by In Control.

Partners in Policymaking is a series of course for people who use services and family carers. People who have been on the courses have formed a network which now includes around 2000 people. The network only has one paid member of staff, Lynne Elwell, who founded the UK network, having attended a Partners course in the US in the eighties whilst caring for her daughter Nicola. The network remains very devolved and informal. When someone needs some information, “people ask people who ask people”. Graduates of the course form circles of support around people with learning disabilities and in many cases groups which influence policy locally.

It’s a simple approach with the minimum of organisation and bureaucracy, but it’s incredibly powerful.

Network members put some of the transformational power of the network down to the “lightbulb” moments they have experienced in the courses. Lynne says, “Having a child with a learning disability is like falling down the rabbit hole. It’s a system which is impossible to understand. It took months to get a ceiling hoist from health, then more to get the bracket it needed from social services. All we were offered were institutions when I wanted an ordinary life for Nicola.” Another member commented: “We needed a sit-to-stand wheelchair, but the school and care services couldn’t pool their budgets, so they had to buy a standing frame and then fund an extra room at school and 12 people during the day who are hands on all the time. When we needed a toilet, the Disabled Facilities Grant rules meant we had to get a £3,000 one, when we had identified a £400 which we could have sourced ourselves.”

Frustrated with bureaucracy, Lynne originally got involved with advocacy: “At the time a lot of the campaigners were older parents who’d been through lots of battles and disappointments, so they wanted what they knew and what was safe. The courses are about finding the leading edge thinking and bringing it to parents whilst their children are still young.”

A good example of this thinking is postural care. Postural difficulties experienced by people who have used a wheelchair since birth can be due to growing up sitting, rather than to a physical impairment. “Parents can be offered a whole series of major operations, when many of the problems are preventable if you can get the right information. But postural care professionals in the NHS are scarce, so parents have searched out information and “Whatever we find out we share.”

Professionals can find this approach challenging. “Workers in the system want to do a good job, but they are not kept up to date. They are anxious to give up control, and to admit that there are others who could take control.”

This collective expertise often results in local networks creating solutions which can have a much lighter touch than traditional services: “We support a young man with autism who gets fixated on things. He gets distressed by roadworks and can lash out at people when he sees them. The traditional response to that is keep him off the streets or even medicate him. We have planned with him as a group and he now he has a PA who supports him as an employee of the local council, keeping an accurate log of road works, checking they are completed and collecting any cones or signs which were left behind. He is very good at it.”

Keeping this level of imagination and optimism going is not easy. Julia says, “you need to sit with a group who are positive, rather than a group of people who are negatively focused. My daughter was unable to go to mainstream school, but now she is at university, living independently and working as an ambassador for the User Led Organisation movement.” Marianne adds, “As a parent you learn that you can inspire organisations like schools yourself. The Partners network allows you to work proactively not reactively. I’ve been told special needs school is the way to go for my son, but he now walks into the same school with his brothers.

Zeenhat agrees: “Families are being told by schools that their child can’t cope so we are only giving you morning sessions, whereas actually it’s the school which needs to learn to cope. When I was given a personal budget they did a resource allocation which I didn’t understand and then left us to it. I was ready to give up with a personal budget because I felt I wasn’t making it work. On the Partners course, we did a person centred planning process, which involved lots of people from my family and professionals (although social care didn’t turn up) over two days. It was inspiring and I realised lots of things about my child which I didn’t realise before. I learnt from others and I was able to pass it on to other families.”

“Going to the supermarket was a big challenge as a single parent. I dreaded it. But we started again with very quick visits and with helping him understand that when he has run out of something he wants, we have to go to shops. It’s become part of the family routine again. A lot of people round where I live don’t like people to know they have a child with disabilities, but now people locally have come to me to and told me about their relatives.”

Whilst on this occasion, the discussion focused particularly on people with learning disabilities, members of the network experience the full range of social care needs and on other occasions I’ve heard equally compelling accounts of support for people with mental health problems, MS and dementia, for instance.

Find out about Partners in Policymaking from: http://www.partnersinpolicymaking.co.uk/

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