Home of Oxleas Learning Disability Bulletin! Keeping you in touch with news from the learning disability world in a monthly digest.
Tuesday, 31 July 2018
What's it really like to have a brother with autism
Spencer Timme has an older brother with autism, and he's often asked what it's like — if it’s hard, frustrating, or different. “Nah, not really,” Spencer responds with a laugh.
Wednesday, 25 July 2018
Victim of crime - some disabilities are invisible
Some people say I am kind and caring. Some people say I go out of my way to help someone in need.
I was walking back home from work one Tuesday. A woman came up to me and started to chat with me. She seemed like a nice lady. She told me that she recently had a miscarriage, the problems she was having with her boyfriend and the money problems she was having. She seemed like she had trouble walking and was crying. I felt sorry for her, so I supported her to walk to my flat and I invited in for a cup of tea.
As soon as we walked in the flat she asked me to lend her £50. I felt a bit uncomfortable but I believed her. So I agreed to help her out and she promised to come back tomorrow to give me the money back.
I looked out for her the next day but she didn’t come back. But the next Tuesday she was stood there at the same time when I finished work. She barged her way into my flat. She spoke down to me, nothing like she behaved last time. Gone were the tears and the sad story. She asked for more money, she made herself poached egg on toast and even looked through my food cupboards and took whatever she wanted without my permission. She was so demanding and this made me feel so nervous. I didn't have £50 but she took the £20 I had on me.
Then once again she was outside my flat waiting for me the next Tuesday. My girlfriend Sandra was with me this time. Sandra was very firm with her, telling its wrong to take my money and food and she should 'sling her hook'. I stood up for myself, told her to leave me alone and she was not allowed in my flat. But she tried to barge her way in again but we stopped her this time.
I called the police straight away and I told them what happened. I told them that she is still outside the flat and they said they send police around straight away.
It took the police six hours to come to my flat, by what time she had long gone. I told them that I said it was an emergency. The police officer said you must be confused and because I have a learning disability I misheard what they said.
I went to Police Station the next day with my friend Colin who is a self advocate like me. They showed me some photos of women like her who have been known to do things like this. I didn't recognise her in the photos. They said there was nothing they can do and call 999 if she comes back. I fell like they gave up on me. They were talking so quickly and abruptly. They should have gave me time to answer questions. I honestly don't think they believed me.
Lots of people with learning disabilities are victims of crime and especially hate crime. I think that the police need training about commutating with people with learning disabilities and some disabilities are invisible.
I’m too trusting and I always see the good in people. I still haven't decided if this experience has changed how I see other people.
Peter Cronin
Self Advocate
Monday, 23 July 2018
Wednesday, 18 July 2018
Celebrating Learning Disability Awareness Week
18 June to 24 June 2018
Oxleas’
Learning Disability directorate hosted a number of events to celebrate Learning
Disability Awareness Week (18 to 24 June 2018).
As the theme
this year was Mencap’s ‘Treat me well’
campaign, the events were held in hospitals across the 3 boroughs.
Tuesday 19 June Bexley and Bromley Learning
Disability Teams showcased their work in the hospital foyer in Queen Mary’s
Hospital, Sidcup together with Bexley Mencap, Advocacy for All and Oxleas’ Stakeholder
Engagement represented by Jo Mant.
The day focussed
on the ‘Treat me well’ campaign by Mencap which aims to transform how the NHS
staff treats people with a learning
disability in hospital. Experts by experience from the Can you understand it?
team and Bexley Mencap visited various services to find out if reasonable adjustments are being
made for people with learning disabilities using these services and to share
with them the Bill of Rights.
In the
afternoon, Raja Rajendran (our Learning Disability Carer Governor) officially opened the Adult Learning Disability Service which was
followed by the cutting of a beautiful cake made by Julie Clarke (Bromley Learning
Disability Nurse) and an afternoon tea.
Thursday 21 June Bromley College students were able to
showcase their achievements and show
family and visitors round the college. There was a great turnout and the
students enjoyed talking about their work.
Thursday 21 June Working together with Lynne
Ramnanansingh - Learning Disability Liaison Nurse at the Princess Royal University Hospital (PRUH) and King's College Hospital, Bromley's Complex Physical Health nurses
Melanie Blair, Stella Haddow-Mendes and Vee Nathan, supported by service user
David Barnet, set up an information stand outside the canteen at the Princess
Royal University Hospital to raise awareness of the health needs of people with learning disabilities
generally, and within the hospital setting specifically, advising of the role
of the Complex Physical Health nurses from admission to discharge. David had opportunity to share
his experiences as a patient at the PRUH and focussed his energy on drawing the
attention of the doctors to the stand.
Our Learning Disability Awareness Week
concluded on Friday 22 June when Greenwich health and social care team had an
information table at Queen Elizabeth Hospital to share good practice with QEH
staff.
All in all
it was a very successful week for raising awareness for people with learning
disabilities!!
Tuesday, 17 July 2018
Oxleas Learning Disability Bulletin for July 2018
Welcome! The purpose of this bulletin is to keep you in touch with news from the learning disability world in a monthly digest. We hope to include information on the latest policy and research along with easy read information. If you have any requests for information or if you want to share with the Oxleas learning disability community please send them to Steve Hardy or Jill Davies.
If you would like to receive an email alert about future bulletins please send an email to Steve Hardy.
All links are written in blue or grey and worked on the 17th July 2017.
Please sign this very important petition and please share with your friends, families and colleagues #JusticeForOliver
Please sign HERE
Our inspirational son Oliver - a blog by Paula McGowan
Anglian specialist named ‘best learning disability nurse in England’ - flying the flag for RNLD's - Sue Bridges
Great work by University of South Wales Nursing Department! Visit the Bachelor of Nursing (Hons)(Learning Disabilities) Many thanks to John-Marc Comperat for letting us show this poster.
Actress Sarah Gordy speaks about new play
NHS England launch 'Ask Listen Do' visit the site here.
A speech by Norman Lamb MP about Transforming Care Programme in Parliament - here.
Blogs
7th Grade Boy With Autism Stuns School With Perfect Math Score On State Test
A Day in the life of a Intellectual Disabilities Psychiatrist
A day in the life of a learning disabilities nurse
Archbishop Justin Welby: I don't pray for my daughter's disability
Ask, Listen, Do: Oliver’s Story
Antony runs the London Marathon for Mencap!
Can You Understand It? team present at Learning Disability Today!
Continuity of care is vital for people with learning disabilities
Did you say 'learning disability nursing'?
Encouraging physical activity in people with learning disabilities
'Everyone with a learning disability should get the treatment they deserve'
First participants to attend Good Mood Group have completed the course with success!
Get the Tissues Before Hearing This Young Man Explain What It’s Like to Have a Brother with Autism
Helping people with a learning disability live longer by tackling the causes of early death
How a Labour MP and a different approach eventually saved my autistic son
If Autism Is My Superpower, Then July 4th Is My Kryptonite
'Know how better to care for people with learning disabilities'
Ignorance Is Strength - what do we know about the progress of Transforming Care?
Learning Disability Week – improving hospital care
Living with Asperger: I’ve been called ‘spastic’ and ‘freak’ and told by a police officer to ‘grow up’
Many With Autism Engage in SIBs. But What Are They, and What Can Be Done to Help?
Take a Listen to What “Background Noise” Sounds Like for Many on the Spectrum
Theme parks, other family destinations accommodate families with autism
The Royal Liverpool and Broadgreen University Hospital Trust (The Royal) - in spirit of co-production
This Boy Is Graduating High School Even Though He Can Barely Write a Sentence
'We all need compassion and kindness'
Welsh Learning Disability Health Champion Conference: passion, teletubbies, bollards and bears in gowns!
Why did I become a learning disability nurse? Well, I’m biased of course, but I could ask: why didn’t you?
Books
Out now
10 Rules for Ensuring People with Learning Disabilities and Those Who are on the Autism Spectrum Develop 'Challenging Behaviour': ...And Maybe What to Do About it by Damian Milton
10 rules for ensuring autistic people and people with learning disabilities cannot access healthcare by Viki Ainsworth and Jim Blair
A mismatch of salience by Dr. Damian Milton
AUTISM UNCENSORED: Pulling Back the Curtain - Whitney Ellenby
Autism and Intellectual Disability in Adults Volume 2 - Dr. Damian Milton and Prof. Nicola Martin
Autism in a Decentered World - Alice Wexter
Behavior Support for Students with ASD: Practical Help for 10 Common Challenges - Debra Leach
Cognitive Behaviour Therapy for People with Intellectual Disabilities: Thinking creatively - Andrew Jahoda et al
Citizenship Inclusion and Intellectual Disability: Biopolitics Post-Institutionalisation - Niklas Altermark
Difference Not Disorder: Understanding Autism Theory in Practice - Dr. Catherine Harve
Making friends at work: Learning to make positive choices in social situations for people with autism - Saffron Gallup
Person-centred Active Support Training Pack (2nd Edition) - Julie Beadle-Brown, Bev Murphy and Jill Bradshaw
Sexuality and Learning Disabilities (2nd edition) - Dr Claire Bates
Successful Health Screening through Desensitisation for People with Learning Disabilities - Lisa Harrington and Sarah Walker
Safeguarding Adults: Key Themes and Issues - Gillian MacIntrye and Ailsa Stewart
Social Survival: A Manual for those with Autism and Other Logical Thinkers - Amy Eleftheriades
Successful Social Stories™ for Young Adults with Autism: Growing Up with Social Stories - Siobhan Timmins
I Am Me: My Personal Journey with My Forty Plus Autistic Son - Marlene Ringler
Belonging and Social Inclusion for People with Intellectual Disabilities - Iva Strnadova
Can You Understand It? team news
Update from the team:
- the can you understand it? team
- talking about the importance of easy read information
- taking part in a role play focussing on 'patient experience'
- going through the top tips of producing easy read information
- sharing examples of good practice when supporting people with communication needs
29 delegates attended the workshop and there was good interaction from the audience. A number if delegates said that it was great having people with learning disabilities deliver a presentation.
- The team also worked on a consent form for Pavilion Publishing which will be shared with the teams
- The team have also approved the following leaflets:
- Easy read section 17 leaflet
- East read Transition leaflet
- The team is now looking at 'How to get help in a mental health crisis' easy read leaflet.
Events
12th September 2018
Autism and Mental Health Conference 2018
20th September 2018
Autism and Technology Conference 2018
3rd October 2018, Bognor Regis
Exploring death, bereavement and learning disability
30th October 2018
Women and Girls Conference 2018
20th October 2018
Pathological Demand Avoidance Conference 2018
28 November 2018, London
Learning Disability Today Exhibition and Learning Day
Guidance and Resources
Autism spectrum disorder: restrictive, repetitive behaviours and interests are poorly understood - The Conversation
Does my relative have capacity to marry or enter into a civil partnership and what can I do to protect them? - Anthony Gold Solicitors
Enough is enough - making reasonable adjustments - Three publications by the RCN
Guides for adult siblings of people with a lifelong learning disability and/or autism - SIBS
Help us make GP practices more accessible – #MyGPandMe - Dimensions
Learning from deaths: Guidance for NHS trusts on working with bereaved families and carers - NHS England
Learning from deaths: Information for families - NHS England
Resources to support safer modification of food and drink - NHS Improvement
A human rights group hits out at the BBC for an ‘appalling’ interview on a British army killing - 7th July, The Canary
Actor Sarah Gordy: 'I cried my eyes out when I was awarded the MBE' - 21st June, Go London
Anxiety app launched on Apple store - 13th July, Learning Disability Today
Asperger syndrome: What is it and how many people does it affect? - 28th June, The Independent
Autism and football in Philly: Therapeutic benefits on and off the field - 5th June, Why-Y
Autistic man who can barely speak finds his voice as rock singer - 22nd June, The Argus
Concern raised over GP support for people with learning disabilities - 15th June, Teeside Live
Dimensions Activate – Methodology - Dimensions
Disabled toilet access: 'I don't want mum helping me use the loo' - 6th June, BBC
Disabled woman dies after nurses left blocked catheter in her causing severe infection and sepsis - 11th June, Bristol Live
Doncaster's Keepmoat Stadium to host national learning disability games this weekend - 26th June, Doncaster Free Press
Employers need to break recruitment traditions to boost diversity - Personnel Today
Down's syndrome lad inspires new boxing class after going toe-to-toe with his own brother - 13th June, Gloucestershire Live
Down’s syndrome graduate Mark Smith gives lesson in how to teach the disabled - 25th June, The Times
Edinburgh Fringe festival introduces autism-friendly backpacks for first time - 6th July, I-News
Facebook criticised by disability charities over advert - 31st May, BBC
Fife at forefront of new internet guidance for people with autism or learning disabilities - 13th June, The Courier
Government introduces bill to overhaul deprivation of liberty law in bid to save councils £200m - 3rd Julu, Community Care
Grieving mum launches petition for new training for all doctors and nurses after son's death - 11th June, Bristol Live
Here’s where you can seek support if you have learning disabilities - 21st June, Kent Messenger
How to stop culture excluding people with learning disabilities - 3rd July, The Independent
How to make people with learning disabilities feel more included in society - 22nd June, The Conversation
Inspirefest snapshot: Making the world of work accessible for those with autism - 12th June, Siliconrepublic
Kent charity sets up theatre company for people with learning disabilities - Kent Messenger
Judge calls for Mental Health Act reform over rising detentions - 5th July, The Guardian
Learning disabilities: Hayden's new confidence as tour guide - 22nd June, BBC
Leading Yorkshire theatre company championing learning disability arts 30 years on - 13th June, Yorkshire Evening Standard
Learning disability organisation ThreeCs creating discovery boxes at Horniman’s community engagement programme - 28th June, South London Press
New disabled boxing club leaves its members 'grinning from ear to ear' - 19th June, Grimsby Live
Parents say son's death was down to 'arrogance' of doctors - 16th April, The Guardian
People with learning disabilities urged to ask about their medication - 20th June, Eastern Daily Press
Sir Vince Cable quizzed by people with learning disabilities - 22nd June, Richmond and Twickenham Times
Sparks Project proving disability is no barrier to inspiring children - 12th June, Derry Journal
Spotting the signs of sight loss - Optometry Today
'SOMETHING'S MISSING IN ME' Robbie Williams fears he may have autism or Asperger’s syndrome - 29th June, The Sun
Sensory day for children with autism being held at Belfast Zoo - 26th June, ITV
Spotlight put on learning disability nursing ahead of awareness week - 15th June, Eastern Daily Press
Tennant to star in learning disability comedy - 19th June, BBC
‘The deaths of young men with learning difficulties still fail to get the scrutiny they deserve’ - 23rd April, I-News
The government promised to ‘deinstitutionalise’ learning disabled people. It’s failed miserably. - 23rd June, The Canary
The Reason I Jump review – a revelatory insight into autism - 17th June, The Guardian
The wonderful story of a caring Scottish community - 4th June, 2018
Thousands with learning disabilities have ‘human rights routinely ignored’ - 5th July, BT News
Trusts told to plan for learning disability workforce shortages in new care standards - 25th June, Nursing Times
Wandsworth community gather at street party to support people with learning disabilities - 28th June, Wandsworth Guardian
'We need a team of nurses, not just one' - mum's plea for learning-disabled patients - 5th July, Stourbridge News
What the Mencap sleep-in payments judgment means for the sector - 13th July, Community Care
Where councils are going wrong in their implementation of the Care Act - 8th June, Community Care
Why children with autism love trains (and the 10 best UK rail adventures for families - 19th June, The Telegraph
Why we want Theresa May to walk in the shoes of people with learning disabilities - 15th June, The Guardian
Young drivers with autism spectrum disorder may need more time to learn basic driving skills - 12th June, EurekAlert!
Requests
The National Autistic Society Too Much Information film focuses on the impact unexpected changes can have on autistic people. Unexpected changes when taking public transport can be overwhelming. 79% of autistic people telling us they feel socially isolated, and for some, the fear of unexpected changes could mean not even leaving the house.
Make public transport autism-friendly, benefitting the 3 million autistic people and their families in the UK. Sign the petition now.
It's time to get nominating for the Autism Professional Awards 2019! There are twelve categories, nominate here.
It's time to get nominating for the Autism Professional Awards 2019! There are twelve categories, nominate here.
Reports
Improving the health of people with a learning disabilities: a public health nursing approach final literature review report - University of West London
Learning Disability Improving Lives Programme - Welsh Government
Learning Disability Improving Lives Programme - Welsh Government
Research
Autistic people at greater risk of becoming homeless – new research - UCL
If people with learning disabilities can’t consent to marry, they’re at risk of forced marriage - University of Nottinghamshire
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