World's First Wheelchair Friendly Water Park

Meet the AutistiX!

How much do you know about autism?

Enough is enough - making reasonable adjustments

Imagine you have a learning disability and you have been reading the news over the last couple of weeks. What would you be thinking?


Oh, I'm likely to die at 59
But my brother is likely to live until he is 82
Of course I will receive a good level of care
Oh, there's a 1 in 8 chance that I will receive poor care whilst in hospital
I might as well give up now


Would you accept this? What would you do about it?
We have known these facts for years. Enough is enough, its time to change.


The Royal College of Nursing have produced three guides for mainstream health services to delver healthcare to people with learning disabilities. In each of these guides it provides suggestions on how you can make a big difference by making small changes - these are called 'reasonable adjustments'. Please have a read and see what changes you can make. People with learning disabilities contributed to all three publications and are listed at the back.


Every life should matter
We should value everyone

Download: Meeting the health needs of people with learning disabilities

 Download: Provision of mental health care for adults with learning disabilities

Dignity in healthcare for people with learning disabilities

Who’s valuing who? the power of what you say

A personal blog

I posted on FaceBook group LearningDisabilityNurse.com a few years ago about how we should change abbreviating 'learning disabilities' to LD, not even PWLD. It didn't go down really well and some people don't really think politeness should be used when you have a computer in front of you instead of a person. I was still recovering from having a stroke and I didn't have the words in my then vocabulary to argue this point.

Then about three weeks ago I started to write bullet points down on this blog, which was inspired by Sam Sly, who is posting me 'I am challenging behaviour' badge. I answered a post of Sam's of why do we use the term 'placement'? I started to ask the staff at work if we can say 'home' or 'we will help you look for a new home'. But I was fighting against decades of culture. But I continued to start using the word 'home' instead of placement. 

I go out with a man, who has autism to places like Bluewater and the cinema. He asked me how a person he used to know was getting on and have they found him a placement yet? I said 'he is looking for a new home' and he continued to say 'placement'. I think we have dehumanised this young man and the person he was asking about.   

When I was an editor for a journal, the first rule I made was that authors had to write out 'learning disabilities' in full and don't use 'LD'. Authors still wrote 'LD' and I spent hours correcting this. My argument was how can we say we are valuing people with learning disabilities when the first thing we do is abbreviate to 'LD'. This was pure laziness by the authors. We use term mental health frequently but you don't see 'MH'. We used the term clinical psychologist and consultant psychiatrist, but you never see these terms replaced with abbreviations. I wonder who has the power? Anyway as soon I left the role of editor 'LD' was then used instead of the full term of people with learning disabilities, the main and only reason we get to write papers in this journal. But I'm not picking on this particular journal because is common practice in many journals to use 'LD or ID'.

I recently read an article and it was really quite good. It was about the impact of 'Transforming Care' and the use of language. They were quite rightly arguing the point of using words that people in general use. They also said that we shouldn't use abbreviations. Firstly 'Transforming Care' was a buzz word when I worked at the Institute of Psychiatry and the Maudsley back in 2010 and was widely used by the Department of Health. Did NHS England consult with people with learning disabilities about they wanted the title of this major programme to be? I doubt it. Also did they speak to people with learning disabilities when they came up with the term STOMP? But this point I'm making does not take away the excellent work they are achieving on reducing inappropriate use of medication to people who don't have a mental health problem.

I was at a conference for people with learning disabilities about 'making complaints easier'. The main speaker used terms like TCP, STOMP and so on.....
The audience were gave 'red' cards if they didn't understand what was said. Well the speaker discontinued their talk because of the sea of red across the audience.

Please don't get me wrong I'm at NHS England this coming Friday and the Transforming Care team are doing some great work and fighting against a system that was set up 30 years ago and are in for the money. I sincerely hope that they achieve the aims of the programme and we should all support them as much as possible. But thinking about Assessment and Treatment Units, I don't recall 'Valuing People' in 2001 of speaking about this issue, maybe I'm wrong. It took the BBC secret filming at Winterbourne View and one most tragic death of LB for everyone to start thinking 'is this right'?

I could go on and on but sometimes I might mistakenly use the term 'placement' or 'challenging behaviour' or 'behaviour that challenges' every now and again but I'm trying to change the language I use. And if I do make a mistake please do not shoot me down or call me a hypocrite. Just be polite and ask me to change my language and don't do a literal 'hit and run'.

We really do need to think about the message we are giving to people with learning disabilities, their families and student nurses, student psychologists, student social workers etc. We need to think about the language we use. We need to stop getting people with learning disabilities  to fit into our world. Life progresses all the time. When I trained some ‘clients’ were forced to sniff ‘smelling salts’ if they behaved in a certain way. I thought this was barbaric but it was accepted. You definitely cannot do this now. I imagine today’s terms, use and behaviour will be tomorrow’s crime. Let's build a world together.

Communication is a two way process and we should using words that people accept and understand. 

Communication is the key!
Its a home not a placement!




Steve Hardy
Can you understand it? team



Amended from the original published blog.

Makaton Friendly DJ Jay Entertainer

My name is Jake Glennon. Since the age of 12 I have been running events as DJ Jay Entertainer. I am the youngest DJ in the UK, and I recently became the first Makaton Friendly DJ.

What inspired me to learn Makaton?

My cousin Alice is 12, she has Down’s syndrome and is a Makaton user. Last year we were on a family holiday and at the evening entertainment I could see that Alice didn’t understand what the entertainers were saying. She didn’t understand why she wasn’t being given the chance to go up on stage, or win a prize. As the evening went on she got more and more upset.

I don’t want children to feel like this at my parties and events. I want everyone to feel included, so I decided to attend a Makaton workshop so I could learn Makaton properly.

I attended a Foundation Workshop and a special overview Workshop for Party Entertainers, which I helped select the vocabulary for. I enjoyed meeting the other participants and discussing how both signs and symbols can be used.

I was very proud to receive my Makaton Friendly status and I recently attended a Positive Choices conference at Trinity College Dublin, for student nurses supporting people with learning disabilities.

I attended with my cousin Alice and her mum Amanda (a Regional Tutor from IT Matters CIC ).

I ran workshops demonstrating how I use Makaton at my events, the message being if I can learn Makaton to support my events surely they too can learn Makaton to support people like Alice when in their care, when patients are at their most anxious and vulnerable. I hope I inspired them!



I have put together this footage of the trip  - please watch and share the message. This is me! - thank you.


Jake Glennon
DJ Jay Entertainer


Reproduced with the kind permission of Jake Glennon and Amanda Glennon.
Many thanks for pointing this talented young man out to us Helen Laverty.
Original blog can be found here.

John and Sunny presentation to the Nursing Direcorate



On Tuesday 1st May John and Sunny were at the Oxleas Nursing Executive Committee, representing the Can You Understand It? (CYUI?) team. They were there to promote the 'Bill of Rights' which was developed by CYUI?, Bexley Mencap, Advocacy for All and ResearchNet.

Sunny introduced the 'Bill of Rights' and told everyone how they were developed and what inspired them to write this important message for everyone. John then presented the actual 'Bill of Rights'.

The meeting was attended by senior nurses from Oxleas including staff working in mental health, children's services, community health, district nursing and forensic teams. They were delighted that the Director and Deputy Director of Nursing were present as well.

They were asked what other plans the team has and we told them about a possible new publication with Pavilion Publishing, 'Top Ten Rule of Easy Read'. We also discussed our workshop at Learning Disability Today event on the 15th May in central London.

If any other team within Oxleas or from external organisations we will be happy to come to your team and talk about the 'Bill of Rights'. Please contact the team.

Remember 'speak up and be heard' and 'communication is the key'!

Keeping Well Event!

I assisted Richard and Donna to attend a keeping well event for people a learning disabilities. My self and the service users who attended thoroughly enjoyed the day and learned a great deal throughout the day.

The event consisted of different workshops in relation to mental health and well-being. One of the workshops we attended was the tree of life with a student psychologist. The tree of life is a positive way of discovering important people in your life, past experiences and future goals.

Other workshops available were relationships and dating, exercising and eating well and overcoming hate crime. We enjoyed learning about different ways of keeping well and engaged with service users and health professionals. Richard and Donna said they would definitely attend the workshop again and thought that it would benefit others, who may want to attend in the future.


Holly Wilson

Richard's story

Hello, my name is Richard and this is my story.


I was born with DiGeorge syndrome, also known as deletion 22q syndrome. I was also born with autism. Autism affects me in different ways, but mainly I don't understand body language or facial expressions. Also I have difficulty in recognising emotions in other people and my own emotions like happy or sad. I have dyspraxia and dyscalculia. Also I have autoimmune disease and I am a carrier of sickle cell.


I have been a member of ResearchNet in Greenwich for the last four years. I really enjoy going to ResearchNet. As well as doing exciting projects that help people with learning disabilities, it really get me out of the house. As I rarely leave the house unless I have a purpose. At the moment we are working on a project which help vulnerable people to stay safe in their communities.  We are designing a card for people to put in their wallets or purses. On the card it tells them some important phone numbers  and what they should say when they call the numbers.


Once a month I go River Wood which is run by Greenwich Mencap. This is where we turn wood into furniture. Every Friday I go to Tramshed in Woolwich. This is a group for people with learning disabilities. I'm a volunteer worker at Tramshed, where I support and get people involved in the activities.  I also go the community meeting once a month for Mencap.

I met with Kaye Jones last week, who is the manager of TOPS day service. Hopefully she will be finding me some work at Goldie Leigh Hospital and I will be teaching the TOPS staff about autism. 

I'm trying to go out more. But because of my autism I can't go out for more than three hours. I find being around people for more than that time really stressful. I use my freedom pass quite a lot and I walk from my home in Thamesmead to Woolwich. I also go to see my friends in Croydon once a month. I get the 54 bus from Woolwich and then get a tram in Croydon.


I am really interested in prohibition which started in the USA in 1920 and finished in 1933. This was when drinking alcohol was illegal in the USA. There was a non dry movement and a dry movement. Lots of the mob were involved with prohibition, like Al Capone, Benny Seagull and Joe Kennedy Senior. They held an open vote in 1933, much like Brexit vote here two years ago. The non dry movement won the vote and drinking alcohol is not illegal anymore. 

I really like playing Football Manager. I've been playing since 1992. My team is Paris St Germain and we are 8th in the league. We have only lost three matches all season. I also like watching wrestling on the WWE network. 


I'm about to start seeing Carol from Greenwich Community Learning Disability Team. She is an occupational therapist and she will be teaching me how to cook. I'm starting off with scrambled eggs and then pancakes the following week.

 Thank for reading my story.

Congratulations Sarah for winning three swimming European Open medals!

 

My name is Sarah Casey.
I enjoy swimming.
It helps me keep fit, stay healthy and lose weight.
My dad taught me how to swim when I was 8 years old.
I loved swimming from then.
I love being in water and swimming, its my dream.
I've been a member of Sharks Swimming Club for a long time.
I represent them at galas and competitions.
On the 21st - 22nd April 2018 I was at the Down Syndrome European Open in Southampton.
I won 3 medals.
Two gold medals for 25 meter breast stroke and 50 meter breast stroke.
One silver medal for 200 meter freestyle. 

At the moment I am the European Champion in 25 and 50 meter breast stroke and I hold the world record for 25 meter breast stroke. 

I have been in competitions all over the word, like:

• Czech Republic
• Ireland 
• Italy
• Mexico
• South Africa 

I still aim to be in competitions for a long time.

I would to say thank you to my parents for getting me started in swimming, supporting me in all the galas and travelling with me to all of these places around the world.


Sarah Casey
Can you understand it? Team
Oxleas NHS Foundation Trust