A new website aims to make expert information accessible to everyone. Jayne Knight explains why she is launching www.youknow.org.uk
I joined Ling Trust in Colchester 28 years ago. It was a small housing association supporting people with learning disabilities. At the interview I asked where people lived and what they did in the day. I was told, “They live in homes around and they don’t do much. They are too bad for that!”.
When I started work, we all formed the Fast Forwards Tenants group. Members let other people know they didn’t have to put up with things anymore – just lovely, simple, real life followed with all its joys and sorrows. I stayed for 25 years, trying to do right by people and thinking everyone else had learned to do the same.
Desperate story
Fast forward to three years ago when I picked up the phone to a woman who told me a desperate story about her battle for her son and all the terrible pain they had been through. I had worked with survivors of institutions but this was the most harrowing account I had heard for a very long time. Weren’t we all supposed to be in a new world of ‘person-centred planning’? Surely this wasn’t happening with all that had been spent changing the rotten systems of yesterday?
Reality started to dawn after hearing more stories, all the same. During all that time when I thought people knew better and had learned the best ways to support people, we had been ignoring the ongoing trek of very vulnerable people going straight into the places we thought had closed down – the treatment units that became people’s new homes and in which many were abused and denied a life just as in the institutions.
Three years of harrowing voluntary advocacy later and what if anything is changing? So many promises and so little action despite some really best intentions. So little information of the right kind. Conspiracies of silence, misinformation, threats and poor practice are still the reality for most people trying to make sense of a terrible world of hospitals, sections, courts, tribunals and, more often than not, nothing happening.
Working with a few others we figured out that one of the things people needed was good, free, readily accessible, 24/7 information and know-how. Too often what they got was partial, threatening, coercive, ill informed – the kind you get when you enquire or plead for help from the authorities. We planned to provide honest, straightforward, life and work lived, expert information from people who really do know, people who care enough to share that information and advice for free in a place where it’s easily accesssible. I searched on the web and couldn’t find that place.
Over the last year I have worked with family carers Gail and Laura to develop a website youknow.org.uk. With the help of our original IT man, John and our new IT providers, Perfect Arc, we have ‘soft launched’. At the time of writing we have already sent out 37 problem-solving answers and replied to several phone calls.
So our dream for a one-stop shop for unbiased, free on line advice in social care, health and supported housing is going to be fully launched in April this year. Every day we increase the resources on the site and our number of voluntary advisors are growing. We’ve just started a ‘go fund me’ to develop the site to make it even easier and raise the advertising potential. We will use any money to pay for second to none free advocacy nationally. Our aim to challenge poor care with expert information is becoming a reality. We are a genuine social enterprise with sound business principles. That makes us all very proud.
Our advisors include self advocates Jenny Carter and Andrew Bright as well as lawyers, professional social workers, nurses, psychiatrists, psychologists, housing and welfare rights experts, experts by experience, family members who have advice to offer, voluntary organisation representatives and advocates.
Fantastic work
Many sites offer help but generally in one subject area. We don’t underestimate the fantastic work they do and our aim is to link people to these self directed or family-led sites wherever possible. Working together makes us stronger. I have kept all my links with Ling and now work with another housing association Let’s For Life which has a very positive team ready to get good housing for people with support needs, starting with people coming home from assessment units. Our links with others will make youknow.org.uk much more successful.
Spread the news and advertise to sustain the site. If you want to be an advisor please contact us on admin@youknow.org.uk. If you feel you can pledge £5 to support the site please go to www.youknow.org.uk and click on the donate/go fund me area.
Jayne Knight, Family Advocate, Interim Director Cameron Trust, MD My Great LifeCIC
Mobile 07940906722
Home office landline 01490430571 and answerphone
Office tel:0162520462870
