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NHS England is preparing to launch a new initiative to make feedback and raising concerns and complaints easier for people with a learning disability, autism or both – called ‘Ask Listen Do’. To coincide with this and National Carers’ Week, family carer Ted Goodman describes how organisations need to develop processes and attitudes to feedback, concerns and complaints differently.
Organisations need to stop trying to fit people into services and instead design them around the person by working with them and their families as equal partners. Then they need to keep the conversation going to make sure that when the services are in place, they are being used as intended.
My work background has mostly been in social work and the regulation and inspection of health, education and social care and when I retired from full time work (early retirement I must stress!). I then worked as an expert by experience with the Challenging Behaviour Foundation supporting CQC inspections and with NHS England supporting their Improving Lives reviews and their development into the CTR (care and treatment review) and CETR (care, education and treatment review) processes. When NHS England advertised the post of family carer advisor to work on a complaints project it was a natural choice for me as a family carer and a former regional complaints manager for one of the regulators to apply.
I live in Shropshire, in the beautiful market town of Shrewsbury with my wife, a retired business banking manager and our adult son, Chris. Chris doesn’t at the moment have a paid job although he has for many years had two voluntary jobs, one as a van drivers’ mate, and working front of house in a café.
Sadly, Chris is one of the many (too many) people who miss out on paid employment because employers, and to a large extent, the State, can’t look beyond their disability in the haste to employ people who are ‘great team players’, ‘success driven’ or ‘at the top of their game’. Instead, like so many families, we have constantly challenged “the system” and defended our son against the world around us and him – something we have done now for nearly 40 years. We have avoided labelling Chris ourselves as it’s not important to us but he does have a diagnosis of autism and learning disabilities, as well a ‘challenging behaviour’. He is also dyslexic and dyscalculic (Similar to dyslexia but with numbers and number sequencing).
Like everyone else with any sort of disability, Chris has developed coping strategies which work well for him. We are often in awe of how he manages in a world that causes him so many problems. (The phrase the world that challenges’ fits better than ‘challenging behaviour’). So often it is the thoughtlessness of other people and organisations (and I include ourselves in that at times!).
And like every other parent carer, we don’t see Chris’s diagnosis or as was put to us by a doctor, his “symptoms”. It’s just part of family life that we can’t take Chris on the bus that we have to go with him everywhere; that last weekend he got so worked up he withdrew himself from his aunties birthday meal because he didn’t know how to cope. He said to me: “I don’t know what to say to people, Ted” (he prefers this to ‘Dad’).
What we do see that few others see is a person who is knowledgeable about so many different things, albeit in very haphazard and unexpected manner, has an incredible eye for details and builds and paints models to an almost world class standard. He has a great sense of humour – coming into our bedroom to say goodnight and give us each a hug every night since he was a toddler which can sometimes be 2 or 3 in the morning, to say “goodnight”! Last week when he knocked the door, he shouted “room service”.
Work has given me an enormous amount of experience in standing up and raising a concern or a complaint. But being a parent carer myself, it has also given me the self-same anxieties and stresses that other parent carers report.
I’ll end with one of the tips we received that for me, as we work with Chris on planning or the future, stands out.
The organisation has the wide angled view of the service they can offer; the parent (or the person themselves) has the narrow, more focussed view of how that organisations service will work for them. By putting the two views together, we all get the whole picture.