Day 99: Local experiences, national concerns #107days

Day 99 is another shared day. It was adopted by CHANGE and OxFSN, two organisations actually improving provision for people with learning disabilities, not just talking about it!

CHANGE are holding their national event today, together with Lumos, for people with learning disabilities ‘Our Voices, Our Choices, Our Freedom‘ in Leeds.

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The event aims at freeing adults, young people and children from institutions in the UK and across Europe. You can follow the day on the hashtag #voiceschoices. The twitter feed so far suggest a great day is being had.

The other group sharing Day 99 is Oxfordshire Family Support Network (OxFSN). When asked why they are supporting #107days and #JusticeforLB they said this:

Oxfordshire Family Support Network (OxFSN) is a (very) small charity that provides independent information, advice and support by families for families of people with learning disabilities. Set up by family carers who wanted to use their experience to help others in the same situation we strive to improve the lives of people with learning disabilities and their families.

We wanted to be part of the #107 days because like so many others we were shocked and saddened by what has happened to Connor and his family. Our aim as a charity is to inform, inspire and involve families of people with learning disabilities. We practice and promote person centred thinking and practice, delivering training and workshops to parents and professionals who work with our relatives and we attempted to support Connor, Sara and her family during his time in the unit. At Sara’s request we facilitated a person centred CPA meeting with Sara and staff at STATT (evidenced in the independent report into his preventable death)

Since Connor’s death we have been beavering away behind the scenes on projects we feel could make a difference to other families.

Today OxFSN, together with Healthwatch Oxfordshire, launch their new report, A local experience of national concern, dedicated to LB’s memory.

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 This report, funded by Healthwatch Oxfordshire forms part of a scoping process for further work which we hope will ultimately help other families around the country as well as those closer to home.

The report highlights the failures in respect of the current system in Oxfordshire and calls on local commissioners to work with families and people who use services to create services which meet their needs by working with them as ‘experts by experience’.

It has also identified a range of issues that require further scrutiny, including the following:

  • The problems associated with the transition between children’s and adult services;
  • The frequent failures to provide information and support to enable families to make informed choices about which services to use;
  • A proposal to undertake scoping work on developing a peer-to-peer network of support and advocacy for families, with the suggestion that Oxfordshire could be a potential pilot area to test out a peer advocacy and support model;
  • The importance of services and commissioners working with families to seek solutions rather than perceiving families as part of the problem.

Jan Sunman, author of the report and project worker for OxFSN  said:

‘Our purpose in writing this report was to give a voice to a very hidden group of families, and to show how they struggle with fragile support systems that need to radically change in order that they and their relatives can have a basic quality of life that the rest of us take for granted.  Families are isolated and desperate for good support and advice. They often have a poor understanding of the rights of their relatives’.

On a related note if you would like to know more about your legal position then check out our web chat #JusticeforLBLaw taking place next Monday.

Day 95: Team Triathlon and Walking the Talk #107days

Day 95 is another shared day; this time between Lesley, Glynis and Emma, and Debs. Read on to hear and see what they’ve been up to.

Lesley has this to say about taking part in #107days:

It is certainly not easy to follow so many wonderful contributions.I have been in such awe of the amazing people behind the wonderful events and dedications so far that I must start by acknowledging all of you.

I learnt about the ‘107 days Campaign’ around the same time that my sister, Glynis (along with her daughter, Emma) asked me take part in the Henley Team Triathlon.  I have a vague recollection of willingly agreeing to do the run part of the event after 3 rather strong Long Island Iced Teas on a girl’s night out!  Nevertheless, it could not have come along at a more opportune time and when I mentioned to my sister and Emma about us dedicating the day to Connor, their response was an unequivocal – YES – absolutely! I think that response pretty much sums up everyone’s attitude towards a chance to get involved really.

I have known Sara for many years and after being pretty much inseparable in our younger, fancy-free years (few tales I could tell there!), I unfortunately lost contact with Sara when she moved away from our home town. Crazy in hindsight, as she was hardly the other end of world! But as we all know peoples’ lives do take them in different directions and it is all too easy to let the years slip past. So, sadly, I hadn’t seen Connor for many years. Over the years though I kept a keen interest in Sara’s blog; so beautifully written and a delightful collection of random family events and wonderful ‘screenshots’ from LB’s life.

One of my favourite LB ditties would have to be the one below…

‘LB saw the dentist at school today…

“Wow! Did you LB?”

“Yes Mum.”

“What did they say?”

“Open your mouth Mum.”


Needless to say the posts after Connor’s admission to Slade House made for tough viewing and none of us will ever forget reading of Connor’s death in a poignantly brief entry on July 4th 2013.  The shock and sadness was numbing. I cannot begin to put into words how I felt then and continue to feel when reading about the turmoil of events that have followed.

This morning I found myself re-reading some of the past contributions and I’m equally touched every time I do. It is so heart-warming to see so many people coming together from various walks of life with different experiences and stories to tell, but all brought together for one common purpose in the hope that lessons are learnt far and wide and that no other family should ever have to go through the devastation that Sara and her family have had to endure. I have no doubt that it is a campaign that will run and run. People are angry, really angry and a bunch of angry people bought together is a powerful thing!


So in the name of LB my sister Glynis, her daughter Emma and myself will be taking part in the Henley Team Triathlon.  We may not look quite the part; there have been a few hiccups with the elder ladies! (Glynis is cycling but I’ll not mention her saddle problems!) my ankle will also need strapping because of a weak Achilles tendon, but happy to say that Emma, our youthful team member, is on top form! Regardless of age handicaps and sore bits, we have the biggest incentive and raising funds and awareness will be very much on our minds on the day.

Meanwhile Debs has written this blogpost and made the film at the end:

I have followed My Daft Life for many years, initially with smiles and laughter, relating to some of the experiences. However, my children are still under 10 so much of the battle with the Unit and the poor support during transition was something I could only read and think ‘oh please, please, please let things have improved by the time my eldest reaches this age’.

During my short time in this Jungle, I have met so many people who talk a good talk. People who tell you what you want to hear, people who promise you everything and people who tell you they are going to change things.  I have been involved in lots of box ticking and lots of hit and run consultation. I have spent hours in meetings, often on a voluntary basis, because I thought it would make a difference if the views of families were heard.

Sadly, I walked away from many realising that I had achieved nothing except to allow others to say ‘we listened to families’ or more accurately, ‘we listened to families because we have to, but we did what we had planned to do anyway’.

The 107day #JusticeforLB Campaign is giving us all the opportunity to get involved, to unite and to campaign for a difference that will actually help our families.  If you, like me, have young children and think ‘well this doesn’t affect me’, think again. Time flies quickly and your little one will soon be a little dude or dudette. This campaign is for all of us, all who have a child or a young person with a learning disability in our family, irrelevant of age.

We are not just talking about parents and carers, we are asking everyone, siblings, aunts, uncles, grandparents, carers, godparents and friends, please get behind this campaign, unite and make a real difference. Please. Let’s Walk, not talk.