When will there be good news? | BLOG07


A few days ago I attended the launch of the Greater London Learning Disability Community of Practice. This Community has been set up with the support of our programme in response to London stakeholders (who can be anyone from a health & care provider to a person with lived experience) telling us that they want to be able to come together, and build a new community that enables good quality support and challenges health inequalities. We have asked BILD to help with this and this conference is the first for the Community.

“I was quite nervous about how the day would go.”

Over the last few weeks it has become more and more difficult to avoid the media headlines concerning vulnerable people with learning disabilities and / or autism and where their care has gone terribly wrong. There are too many to mention but two in particular have stayed with me.

In mid October the headline on the front page of The Times was “Autistic woman ‘pimped out’ in care scandal”. A young woman was allowed to have sex with numerous men because her carers were thought to believe that this would help her learn from her mistakes. Her family were not involved in this decision making.

“And, of course, there’s Bethany.”

Bethany is 17, she likes jokes and getting cards. She gets bored quite easily (what 17 year old doesn’t?) , so enjoys having lots of different thing to choose from to do. She also happens to have autism and is locked in a seclusion room for most of the day. But Bethany’s dad is the person who can tell us most about Beth, he has a Twitter account – @JeremyH09406697. He’s an expert when it comes to his daughter.

So with all this happening, and with a sad realisation that this must only be the tip of the iceberg, it was a breath of fresh air to attend the event in London. There must have been 200 people there from across London (and some from outside the area who were so passionate about improving the lives of people with learning disabilities that they travelled for hours to attend). There were service users, carers, front line staff, managers, social workers and many others from across social care. People spoke with expertise, with compassion, service users gave us examples of great work and not so great work.


At the end of the day, another parent spoke to us, Yvonne Newbold. Yvonne is the mother to three children including Toby, who is multiply disabled and has profound learning disabilities. She’s not just an expert on her own child, she is an expert on special needs parenting, learning disability, autism and other related topics.


Yvonne’s expertise has been recognised. Yet for the other two young people I have spoken about their families appear to have been left out of discussions concerning their care and support. Bethany’s dad knows what triggers Bethany’s anxiety and how this can be avoided. But this doesn’t seem to be taken into account, and as I write nothing much has changed for Bethany.

“The thread running through this is that of listening to the experts by experience, be they the service users, their families, friends or carers.”

This is one of the reasons why Scott Watkin joined our programme last month. We know we have further work to do – Scott is urging us to explore ways of having a family member with lived experience join our Programme Board and to be able to contribute in a meaningful manner.

We also know as a programme that there is some amazing work going on to help improve the lives of people with learning disabilities and / or autism. We’ve supported some of it – click here to find out more we also have updates of what we are currently support click here for updates. But there are so many other excellent examples of the workforce being empowered to get it right through education and training, and that is one of the reasons we have supported both the Kent, Surrey and Sussex and the Greater London Learning Disabilities Communities of Practice. You can join either of these (or both!) for free if you would like to be kept in touch with what is happening.


Don’t forget if you want to make contact with the programme here is a quick reminder of the current ways we are using to share and communicate the information on this blog:

We have a dedicated programme email account: SouthID@hee.nhs.uk

We have a very active twitter feed just use the hash tag #SouthID when you want to share with us: @HEE_SouthID

We also share updates via our LinkedIn page, which you are welcome to follow:


More recently, our stakeholder have setup an Instagram account to capture images from events the programme are involved with:


So get in touch and tell us what you are doing and help us share your workforce work


If you want to become a programme, stakeholder and get weekly email updates click here and if you want to get in touch to tell us what you, think about this blog or any other related matters contact us at SouthID@hee.nhs.uk


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s