Thursday 26 April 2018

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
 

Wednesday 25 April 2018

Greenwich Learning Disability ResearchNet: Our Presentation at the Psychiatry Conference





On the 12th March 2018 Greenwich Learning Disability Researchnet went to the London Specialty School of Intellectual Disability Trainees Conference.   Richard and Kevin, members of Researchnet and Rachel and Des from Researchnet and Greenwich CLDT went along.  We had been asked to talk about our work with different agencies, such as local hospitals, GP’s, social care and the police.

The conference was at Senate House in London.  The journey to the conference was challenging and a bit stressful.  We met at The Woolwich Centre and travelled together on the DLR.  We wanted to go to Bank Station but we were told we had to get off at Poplar due to overcrowding.  Here is us waiting to get on the DLR again:


We then boarded the DLR again for Bank Station, where we walked to the central line, Kevin found some underground artwork, while Des, in charge of directions, did his best to not get us all lost.




After the tube fiasco we eventually made it to Tottenham Court Road, we were almost at the venue, but sadly the weather took a turn for the worse and it started to rain.  We flagged down a taxi and we were driven in style to the conference.
The conference was held at Senate House, an amazing art deco building, very tall and imposing, the building was used by the Ministry of Defence during the 2nd World War.  It was called the Ministry of Information, it was also the inspiration for George Orwell’s Ministry of truth, from his novel 1984.   



We went and signed in for the conference, and had a chance for a coffee and to meet some of the Psychiatrists whilst we also set up the laptop and projector.  We had a few minutes to go through the slides and look at who would be saying what and when.  Rachel and Des said they were a little worried about presenting, Richard and Kevin told us not to worry!
Dr Trevor Chan (CLDT Consultant Psychiatrist) attended the conference and gave a short speech about CLDT and integration. 
We each took turns to speak about Research Net and the work we have done, including some of our projects in detail.  We also answered some questions and had a bit of discussion with the audience. 



We were joined in the audience by psychiatrists from other teams and a self-advocacy group from another borough in London.  One psychiatrist told us that our presentation had made him think he would set a group up in the service he works in.  The self-advocacy group suggested it would be good to meet together another time and share ideas.




Following the presentation we had lunch and then made our way back to Woolwich. The return journey was not as eventful as the outward journey. 

We had a great day.  The journey was difficult, but we did it!  It was good to share our work with others and hear feedback that it has made others think about starting up similar groups. 

Take a look at the ResearchNet website page http://aldatoxleas.blogspot.co.uk/p/research-net.html  for more information about our group.


Kevin, Richard, Des and Rachel
Greenwich ALD ResearchNet


Monday 23 April 2018

The Balance of Rights


The Balance of Rights from AF Film on Vimeo.


The Balance of Rights is a great film which explores the challenges faced by people with learning disabilities in the UK today. Make sure you watch it.

3 reasons why I became an intellectual disability psychiatrist



I am a neurodevelopmental psychiatrist trained in Intellectual Disability (ID) in South London, UK. I was attracted to the profession for three main reasons. First, I love the patient group. People with intellectual disability are the kindest, funniest and most engaging patients I have ever met. Even on difficult days, they generate in me a big smile. Unfortunately, they are also the least heard group in society. The second reason comes naturally then: I want to do my bit. The needs of people with intellectual disability are not adequately met, and health and social care professionals outside intellectual disability circles do not understand them. I look at the powerful voice of the LGBT population and the changes they have effected in so short a time, within government, within the Law, within society, and I wonder how we can achieve something similar for people with intellectual disability, or whether it is possible. There are so many initiatives, but still so much to do. The NHS is under strain. I am under strain. There is not enough money made available to bridge the gap. However, going back to reason no.1, I still smile.
 
My third reason for choosing a career in intellectual disability psychiatry is academic. The complex interaction of neurological and developmental disorders, genetics, general health and the environment makes medical assessments intellectually rewarding. It is a time consuming detective work, going right back to the person's conception, to try and understand the presentation, and treat it to the best of my ability. Within the Bromley intellectual disability medical team, epilepsy receives a close attention. Optimising epilepsy control has led to improvements in functioning, alertness, mood and behaviour. There is a dementia pathway, especially aimed at people with Down syndrome, so medical treatment can be initiated early to benefit quality of life. Of course, some people present with functional psychiatric disorders also, such as depression, anxiety and psychotic disorders. Many people with intellectual disability are on the autism spectrum, and I try and raise awareness about environmental adjustments that can be made to meet the patient's needs, and reduce his/her distress. Often, treatment is not medical but environmental. I then refer on to my precious multidisciplinary team (MDT). It has been humbling to learn from them about the changes that I can make to my communication to provide better consultations for people with intellectual disability.
 
I strongly believe that there should be a new medical speciality, a sort of paediatrician for adults with intellectual disability. It is my opinion, and my opinion only, that the current adult model is widening the health gap for people with intellectual disability, who need a specialised service with a specialised MDT. Interestingly, the only medical speciality represented within intellectual disability services in the UK is psychiatry. Does this make us specialists or generalists? The topic is widely debated.


Dr Lilly Lines

Tuesday 10 April 2018

Just See - a poem by Paul Horan


See my ability,
Not my intellectual disability,
See me for what and who I am,
Understand me,
I am an extraordinary human being just like you,
I can do many and sometimes more things than you can do,
Seek not to pity me,
And I will not pity you,
I seek understanding, caring and love,
I give my love unconditionally,
So Why can't you,
Just accept me for all that I am,
Don't feel sorry for me for what I cannot do,
See my courage,
And you too will have the courage,
To see my flame of hope,
And maybe you will see how I can teach you to care and cope,
When all else is done,
When my battles are won,
We can by working together give this world a special gift,
When we Share the Caring Feeling,
We can all get a much-needed lift.

Paul Francis Horan © 2018

Adapted from (Horan, P.F. (2004) “See My ability” The Frontline of Intellectual Disability (59) pg 30)




Monday 9 April 2018

Get creative! Promoting Learning Disability Nursing!

I have seen these two posters promoting Learning Disability Nursing and I think they are wonderful. They were made by David Harling, who is Learning Disability Lead at NHS Improvement!  Follow @DavidHarling1 on twitter!


If anyone would like to design a poster or infographic that promotes Learning Disability Nursing, we can share it widely and also use it as image on ALDatOxleas. Or if you have any other ideas please get in touch. Get creative!


Also if you would like to share your story on how you became a RNLD, we want to hear from you! It's easy to write a blog.


Please email steve.hardy@nhs.net if you're interested.






Wednesday 4 April 2018

Oxleas Learning Disability Bulletin for April 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 4th April 2018.


This month we have included a new section on MSc and Diploma course. If you want to include your course please send an email.




1. Stories of the month






Autism Awareness Week: Carrie Grant and her daughter Talia on why more needs to be done




A barber soothes a child with autism by singing -- and finds a new purpose








Elections in May 2018: Your vote matters






High praise for support and care staff at Aberdeen village in glowing report by inspectors







JusticeforLB victory as Southern Health NHS Foundation Trust fined over Connor Sparrowhawk's death






'They just start beaming': Surfing program helping kids with autism





When a Boy Got Out of His Seat During an Autism-Friendly Performance of ‘The Lion King’




2. Blogs


Adjustments to services sounds reasonable - Rebecca Hammond, Nursing Times


Autism: ‘I wasn’t defective. I could be explained. I even came with a manual - Méabh Ní Choileáin, The Irish Times 
                                                   
'Communication is a basic human right': How this man with nonverbal autism found his voice


Discussing cyber-bullying in Parliament!  - Amy Clarke, Mencap


From atypical to the big bang - the portrayal of people with autism on the small screen - Steve Hardy, ALDatOxleas


From student nurse to clinical director - my career pathway - Lorraine Regan, ALDatOxleas


Girl With Autism Rarely Spoke, But Just Sang With Pentatonix In Powerful Performance - Autism Baydarkh


How tech can support careers and everyday living - Lisa Marie Clinton, LDToday


'I can take on the world' - Billy Wong, Mencap


“It helps my brain. Sometimes it’s a bit hard on my brain”: My experience of co-production with Research Net - Esther Coroneo-Seaman, ALDatOxleas


Jack and Ben's journey to the Virgin Money London Marathon 2018  - Jack Bishop, Mencap


London Landmarks: Rob's story - Rob Holland, Mencap


Loren Snow has autism and is interested in exploring why the condition is more commonly diagnosed in males - Loren Snow, LDToday



My son has Down’s syndrome – and he belongs in a mainstream school - Sally Phillips, Guardian


Our approach to autism support - Mark Wallis, LDToday

Stop Denying People With Learning Disabilities Their Right To Good Eye Sight - Scott Watkin BME, Huffington Post

The Role Only I Can Play for My Adult Son With Autism - Kristen Scott, The Mighty



Treat me well: Holly's story - Holly Hobson, Mencap


Treat me well: Youssef's story - Youssef Abidat, Mencap


Why An Autism Diagnosis Can Be A Necessity - Autism Baydarkh


3. 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 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-Institutionalis​ation - 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



Forthcoming books!






15th April 2018
AUTISM UNCENSORED: Pulling Back the Curtain - Whitney Ellenby



30th April 2018
Autism in a Decentered World  - Alice Wexler




13th June 2018
Social Survival: A Manual for those with Autism and Other Logical Thinkers - Amy Eleftheriades




21st June 2018
A Guide to Programs for Parenting Children with Autism Spectrum Disorder, Intellectual Disabilities or Developmental Disabilities: Evidence-Based Guidance for Professionals - John R Lutzker et al




21st June 2018
Successful Social Stories™ for Young Adults with Autism: Growing Up with Social Stories - Siobhan Timmins




1st July 2018
I Am Me: My Personal Journey with My Forty Plus Autistic Son - Marlene Ringler




1st July 2018
Belonging and Social Inclusion for People with Intellectual Disabilities - Iva Strnadova




22nd January 2019
Autism Spectrum Disorder Assessment in Schools -  Laura Dilly and  Christine Hall




18th April 2019
The Moulster and Griffiths Nursing Model: A Framework for Learning Disability Nursing Practice - Gwen Moulster et al




1st January 2020
An Introduction to Intellectual Disabilities - Mary Beirne-Smith and James R. Patton



4. Can You Understand It? team news
A new blog by the team - read it here. Come and see us at Learning Disability Today Study Day on the 15th March 2018. More details here.

5. Courses




MSc Ageing Health & Wellbeing in Intellectual Disability - Trinity College Dublin


MSc Developmental Disorders - University of Nottingham


MSc Disability Studies: Inclusive Theory and Research - University of Bristol


MSc/PDip Intellectual Disability Nursing - AIT, Ireland


MSc in Intellectual Disability Nursing Practice - DCU Ireland


MSc Psychology and Learning Disability - University of Portsmouth


PCert, PDip, MA Intellectual and Developmental Disabilities - The Tizard Centre, University of Kent


PGDip/MSc Adults with Learning Disabilities who have Significant and Complex Needs – Distance Learning - St Andrews University








6. Easy Read
Make your information accessible! European Standards


How to get easy to understand information about health care


7. Events




10th April 2018, Nuneaton
Supporting People with a Learning Disability through Loss and Bereavement




11th April 2018, London
Positive Behaviour Support in Social Care Settings for Adults with Learning Disabilities



19th April 2018, Dublin
Positive Choices Conference 2018: 'Heroes and Champions deserve to live a life free from fear



20th April 2018, Dublin
Positive Commitment Conference


23rd April 2018, Bristol

Supporting People with a Learning Disability Through Loss and Bereavement



23rd April 2018, Cardiff
Practitioner Workshop: End of life care for people with learning disabilities



26th April 2018, Plymouth
Supporting Medication - Train the trainer




27th April 2018, Chesterfield
MCA and DoLS: Train the Trainer


3rd May 2018, Oakhampton
Personal Relationships and Sexuality and People with Learning Disabilities Awareness


3rd - 4th May 2018, London
Preparing for Adulthood 




11th May 2018, PlymouthSensory Lexicon




12th - 16th May 2018, Belfast
Royal College of Nursing Congress


15th May 2018, London

Learning Disability Study Day 2018


15th May 2018, Venue TBC
London Learning Disability Nursing Workforce Summit


18th May 2018, Bristol
Sensory Lexicon


7th - 8th June 2018, London
Jack Tizard Memorial Lecture and Conference – Expert analysis, new research: what works


12th June 2018, London
Best practice in supporting parents with learning disabilities


22nd June 2018, Cambridge
Sensory Lexicon


29th June 2018, Manchester
Sensory Lexicon

5th - 6th July 2018, London
The Super Sensory Lexicon
9 - 10 July 2018, Manchester
The Patient Safety Congress 




13th July 2018, Nottingham
Sensory Lexicon


28 November 2018, London
Learning Disability Today Exhibition and Learning Day





8. Guidance and resources


A Parent’s Guide: Improving the well-being of young children with learning disabilities - The University of Warwick


How to Reduce Sensory Overload - Autism Baydarkh



Learning disability awareness: what you need to know about learning disability - Mencap

Learning disabilities and behaviour that challenges: service design and delivery - NICE


Making a trip to the doctor easier for people with autism - Health Watch


PIP payments and autism: overcoming the challenges of the application process - Community Care



World Autism Day: the top YouTube accounts shining a light on autism - Evening Standard

9. Journals

Advances in Autism
Advances in Mental Health and Intellectual Disabilities
Autism Journal
Autism Parenting Magazine 
British Journal of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities
Journal of Intellectual Disabilities and Offending Behaviour
Journal of Intellectual Disability Research
Journal of Policy and Practice in Intellectual Disabilities
Learning Disability Practice
PMLD Link
Tizard Learning Disability Review




10. News involving people with learning disabilities and/or autism


Autistic boy wins £42,000 discrimination lawsuit against the Scouts - 25th March, Independent


Autistic Brothers Create Device Police Can Use to ID People on the Spectrum - 4th March, The Mighty


Autism is a feminist issue - 28th March, I News


Autism is not over-diagnosed in the UK, says Royal College of Psychiatrists - 20th March, LDToday


Autism comedy show backlash is ‘ridiculous and over the top’ - 29th March, I News


'CONFIDENCE BOOST' World Down Syndrome Day – three young Scots with genetic conditions reveal why they love their jobs as campaigners call for more opportunities - 21st March, The Sun

Cruel teenage bullies surround disabled man and abuse him in Harrow shopping centre - 30th March, Get West London


Dating site for those with learning difficulties find love - 16th March, Pirate FM




Disabled women see #MeToo and think: what about us?  - 8th March, Guardian


Drama group for adults with disabilities continues to expand due to huge success - 31st March, Scunthorpe Telegraph


Exclusive: university suspends recruitment to learning disability nursing courses  - 23rd March, Nursing Standard




Foxes Academy named as UK's best Further Education provider - 7th March, Somerset County Gazette


"Good Morning to You" - Experience Autism from a Beautiful Perspective - 21st March, Cision PR Network


Government will legislate to replace Deprivation of Liberty Safeguards - 14th March, Community Care

Health boards urged to address ‘undignified’ lack of toilets for disabled - 10th March, The Scotsman


Help Enable Scotland stamp out bullying: Be The Change - 9th March, Falkirk Herald


Home for adults with learning disabilities, near Spennymoor, rated outstanding - 10th March, Northern Echo



It opens their eyes': how film is giving young people lessons in life - 29th March, Guardian


Joy as these footballers with learning difficulties win their first match in three years - 30th March, Hull Daily Mail
 
Jason Manford raises thousands of pounds overnight to help send boy with Down's Syndrome to Disney World - 18th Feb, Manchester Evening News 



Judge to rule on artificial feeding of man with severe learning disabilities - 28th Feb, BT

Let’s focus on autism - 30th March, The Hippocratic Post


Liverpool barber shop Fiveways caters for children with autism and ASD - 10th March, Echo 



MPs urged to ‘walk in the shoes’ of people with learning disabilities - 21st March, Charity Today


My autistic son had a meltdown - but the council won't overturn my parking ticket - 11th March, Echo



NHS trust fined £2m for Connor Sparrowhawk and Teresa Colvin deaths - 26th March, Guardian



Norfolk author wins national autism award - 13th March, Eastern Daily Press


On World Down Syndrome Day, read our interview with The A Word’s Leon Harrop - 21st March, Big Issue


Peer partners help students with autism join playground fun - 6th March, Spectrum


People with autism help train 1000 NHS and social care staff - 27th March, LDToday


People with Down’s Syndrome like my sister don’t need your sympathy – they need jobs - 21st March, The Sun


'Recognise Us': portraits celebrate people with learning disabilities - in pictures - 7th March, Guardian


Social care for younger adults may soon cost more than for the elderly - 1st March, The Economist

Special Olympics brought £3m to Sheffield economy - 28th Feb, BQ



Teen model with Down's syndrome says ‘You can do anything’ - 19th Feb, ITV


Teesside autism campaigner Anna Kennedy honoured in Amnesty International project - 9th March, Gazette Live


The government pledges to tackle unfair care home practices - 6th March, Which


'The uniform and the rules attract autistic people to join the police' 1st April, BBC


Three-and-a-half year wait for autism diagnosis 'far too long', ex-cabinet minister - 29th March, Care Appointments




Toy Shop 'The Entertainer' Rolls Out Nationwide Quiet Hour For Kids With Autism - 15th March, HuffPost


Tracking devices could be lifesavers for children with autism - 12th March, Democrat and Chronicle


Utah Woman with Down Syndrome Hopes Lawsuit Will Lead to a More Independent Life: 'It's My Dream' - 21st Feb, People


'We fear benefit changes could lose our disabled sister her home' - 12th March, BBC




Wheelchair and autism friendly Yeovil barbers Man About Town relocates to town centre spot - 6th March, Somerset Liv


Windsor Street block for people with learning disabilities given green light - 2nd March, Islington Gazette




10. Reports


Everyday Decisions Project Report: Supporting Legal Capacity through Care, Support and Empowerment - Birmingham Law School

11. Research


Almost half of adults with autism struggle with depression


Autism Studies You May Have Seen Recently and What to Know About Them




Black And Latino Children Are Often Overlooked When It Comes To Autism


College students with autism have high rate of suicidal thoughts - Dr Fred Volkmar, Yale University




More vulnerable male adults are victims of forced marriage than previously thought - University of Nottingham


My Marriage My Choice - University of Nottingham


Research finds people with intellectual disabilities not receiving support for big decisions - University of Birmingham




Solitary confinement is counter-therapeutic, according to study - Dr. Rebecca Fish


Why people with autism can find it difficult to empathise - Prof. Simon Baron-Cohen



12. Requests



My name is Lorna Rouse and I am a PhD student with The Open University. I am currently looking for people to take part in my research project exploring primary care diabetes appointments for people with learning disabilities. Research indicates that both type 1 and type 2 diabetes are more prevalent in people with learning disabilities but little is currently known diabetes primary care  provision for this population. My research aims to improve understanding of this topic.

I would like to recruit adults who have a learning disability and type 1/type 2diabetes and professionals who have provided primary care diabetes services for adult(s) with learning disabilities within Cambridgeshire and Peterborough CCG geography. Further details can be found at https://diabeteslearningdisabilities.wordpress.com


Sign up for Mencap's 'Treat me well' campaign - simple adjustments make a difference. It's about transform how the NHS treat people with a learning disability in hospitals. Find out here.


13. Focus on 'poo'


Easy read leaflets about bowel and bladder


Managing constipation for someone with a learning disability - A set of resources from Hertfordshire Council


Videos about bowel screening and colonoscopy


Poo & You - Dimensions brief guide to constipation - Video


Happy Spring and see you in May!

Lloyd visits Goldie Leigh!

Lloyd Page from Mencap visits Goldie Leigh! During March earlier this year Lloyd Page who works for National Mencap visited Goldie Le...