Home of Oxleas Learning Disability Bulletin! Keeping you in touch with news from the learning disability world in a monthly digest.
Monday, 11 May 2020
Saturday, 2 May 2020
VLOG 3 - Pete's experience of support and much more
Pete's third VLOG and his experience of support. Plus he answers your questions about this crisis.
Friday, 24 April 2020
Peter's interview regarding Oliver McGowan Mandatory Training
Pete is interviewed about Oliver McGowan Mandatory Training for NHS and Social Care Staff.
Friday, 17 April 2020
Pete interviewed about coronavirus
We tried to do a podcast but unfortunately technology won this time. Don't worry its not just looking at my face, as Pete speaks I give you a selected taste of Peter's achievements! It last for 8 minutes.
Wednesday, 15 April 2020
Webinar - Staying healthy at home
A webinar hosted by In-Control and was delivered by Steve Hardy and Matthew Roberts.
Wednesday, 21 August 2019
Thursday, 8 August 2019
My experience of Atlas House
Arriving into Atlas House on day one the first thing I was
given was a set of keys with an emergency alarm attached. This felt both
reassuring and slightly concerning and it really emphasised the how different
the new setting I was stepping into would be. My previous role was within the
Occupational Therapy Team of a Community Paediatric Clinic – a place which was
overflowing light, colour and noise. As I entered Atlas House seemed quiet and
was, quite deliberately, a simple and uncluttered physical space where anything
that could be used as a weapon had been removed. I asked why the televisions on
the walls needed protective casing and was informed that a former patient had
ripped one off. While my early interactions gave me some cause for concern I
was determined not to let patient’s past behaviours affect my view of the
patients and to build a to work with people based on their current presentation
rather than their history. I came into the role hoping to learn about
challenging behaviour, mental health problems and the purpose of assessment and
treatment units but in my limited time here I learned much more.
It has been a challenging environment for me both personally
and professionally as some of the patients are in acute periods of crisis
especially around the time of their initial admission. Many have both a mental
health and a learning disability diagnosis and different approaches are often
adopted by staff that are either trained in one specialism or the other. Some
staff have been resistant to change, communication has been ineffective at
times and we have also been hampered by inconsistency in the way we work with
patients on occasion.
As part of the role I have attended numerous meetings where
a dozen highly skilled professionals go back and forth over complex issues
affecting patients who lack the capacity to make decisions for themselves. I
sometimes sit back in these meetings and think about how amazing it is that
these discussions are being held in the first place and being struck by the
overwhelming desire from all involved to get the best for the patients we
support. As you walk into the ward there a quote on the wall reads “the
smallest act of kindness is worth more than the grandest intention” and I am
proud to work in a place where I see dozens of these acts every day. Like any
workplace it is not perfect – communication and team work are regularly
identified as an area for improvement in team meetings and there are great
challenges to overcome due to split roles, varied shift patterns and
supervision structures among other things. However the willingness of staff to
help each other out, listen and value one another’s contributions and work
towards a common goal will be one of my lasting memories of my time on the
ward.
Since I started here I have been struck by the progressive
approach that some members of the staff team have adopted; it really does feel
like the unit is changing month by month. Staff are always thinking about what
we could be doing better and reassessing the way in which we support our
patients. We had our first away day in 8 years which helped staff to see each
other in a different light. We used workshops and activities to bring people
together as a team in the truest sense. There have also been changes to staff’s
shift patterns, bank pay, the structure of team meetings and approach to daily
handovers, and while change takes time in these types of organizations I
believe the team are approaching the issues positively and producing results.
The role of an OT Specialist Support Worker has also
produced a host of interesting challenges and opportunities. It is a split role
working 4 days a week with the OT team and 1 day a week with the support
workers and it has given me a more holistic view of the organization. I have
tried to act as an intermediary between the Multi-Disciplinary Team and the
Support Workers with some success. I have tried to highlight the things that
both need to learn from each other and we are in the process of trying to
facilitate an increase in joint working and cooperation between the two.
Working the split role has also made me aware of the shared values and common
goals that the whole team have and despite the personal, professional and
cultural differences. Personally I have felt valued and appreciated by all of
my colleagues and have appreciated the recognition of my efforts. My proudest
achievement is boosting the profile of OT within the organisation and trying to
get people more interested and involved in a field that I care passionately
about.
Finally I have felt connected to the organisation as a whole
and I have felt part of a larger project. I have been encouraged to undertake
both internal and external training as part of my continuing professional
development. I have felt connected with Occupational Therapists across
Greenwich, Bromley and Bexley through
monthly Sensory Forum’s and Tri Borough meetings, and with Therapists across
the trust at the annual Therapies Conference. At the conference they identified
feeling valued and listened to as being one of the key factors in staff
workplace satisfaction and at Atlas House I have always found this to be the
case.
Looking again at the ward in my final week I am encouraged
by what I see. The place is in the process of being repainted and renovated,
pictures on the wall now show the smiling faces of current patients and
attitudes of staff and our ability to work together are undoubtedly moving in
the right direction. There is still a long way to go but I look forward to
keeping in touch see the place continue to develop, modernise and harness the
varied skills of the staff and patients who call it home.
Matthew Roberts
Specialist Occupational Therapy Support Worker
Friday, 10 May 2019
(Un)Ordinary Conference
This event was organised by the ‘Stay Up Late’ charity. They came up with an idea to host a conference with a difference. They felt that there were lots of conferences about people with learning disabilities but very few speakers actually with learning disabilities. This time, they wanted all the delegates to be composed of professionals and all of those on the platform making speeches to be people with learning disabilities. This was them telling us how they can live ordinary lives.
We arrived to a fully packed auditorium – Laura said she couldn’t believe how many people there were! The event was hosted by Tilly, who has Asperger’s Syndrome and her best friend Del, a beautiful pink stuffed pig. Tilly discovered Del in Clinton Cards and they’ve been inseparable ever since. They opened by saying the emphasis is on the ‘Un’ in this (Un)Ordinary conference but that they preferred the word extraordinary. They explained that this conference was going to cover three key themes; communities, relationships and work.
All the speakers were given centre stage to express
themselves in a variety of ways - some chose to speak, some chose to represent
themselves through videos and there was even some singing. William decided to
sing the “Bare Necessities” song to demonstrate how it should be a ‘bare
necessity’ for people with learning disabilities to have jobs. We also had Ben,
who showed a video of how he had found solace in the Bashment music scene after
difficulties at school and is now well known in this scene.
It
was then Laura’s turn. She was understandably very nervous about getting up in
front of a big audience but as soon as she got up there it looked as though she
had done this hundreds of times before! Laura naturally finds the words to
describe the relationship her and her son have. She talked about the fun things
they do together and why being a parent is the best thing in the world. She
also mentioned her recent work, writing a blog with Sandra Baum, one of our Consultant
Psychologists, on the positives of being a parent. Laura received a big round
of applause at the end, as well as lots of questions from the audience (6 in
total she counted!). Tilly congratulated Laura and described how inspiring she
had found Laura’s presentation having always wanted to be a mum herself and
being told it wasn’t possible because of her disability.
After lunch we heard from Scott. Scott was told at school he
would never be able to get a job. He proved them wrong by
not only getting a job but now being in a senior position. He
also received a British Empire Medal in the 2017 and as he
quite rightly said, he is “…now waiting for his
Knighthood...!!”.
would never be able to get a job. He proved them wrong by
not only getting a job but now being in a senior position. He
also received a British Empire Medal in the 2017 and as he
quite rightly said, he is “…now waiting for his
Knighthood...!!”.
I would like to say a huge thanks to the Stay Up Late team
for inviting Laura to speak and organising hands down the
best conference I’ve been to. Laura described the experience
as giving her more confidence and she wants to do lots more
presentations now! She also said she is famous now
because her talk was mentioned in the Guardian and
Learning Disability Today! I learnt a lot from each speaker
and loved the uniqueness of each one. It is clear that this
type conference should be the norm. How else can we learn
about the changes we need to make except by hearing it
from people with learning disabilities directly? They can
share their stories and educate if given a platform. It also
made me and Laura reflect on the different ways Research
Net could present in future as it was great to see such a
variety. It made me realise the importance of the right
support as well. A lot of the speakers explained that with the
right support (and they all had completely different kinds of
support!) that they can lead “ordinary lives”. Rightly so as a
member of the audience asked at the end “When is the next
conference going to be…?!” and I’ll be at the front of the
queue waiting to buy a ticket!
for inviting Laura to speak and organising hands down the
best conference I’ve been to. Laura described the experience
as giving her more confidence and she wants to do lots more
presentations now! She also said she is famous now
because her talk was mentioned in the Guardian and
Learning Disability Today! I learnt a lot from each speaker
and loved the uniqueness of each one. It is clear that this
type conference should be the norm. How else can we learn
about the changes we need to make except by hearing it
from people with learning disabilities directly? They can
share their stories and educate if given a platform. It also
made me and Laura reflect on the different ways Research
Net could present in future as it was great to see such a
variety. It made me realise the importance of the right
support as well. A lot of the speakers explained that with the
right support (and they all had completely different kinds of
support!) that they can lead “ordinary lives”. Rightly so as a
member of the audience asked at the end “When is the next
conference going to be…?!” and I’ll be at the front of the
queue waiting to buy a ticket!
Amelia Ralph-Lewis
(Assistant Psychologist, Greenwich CLDT) and Laura (Research Net member)
To read
Laura’s Blog click on the link below:
To see Laura’s
mention in the Guardian and Learning Disability Today please see below:
Wednesday, 8 May 2019
Oxleas Learning Disability and Autism Bulletin for April 2019
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.
All links are written in blue or grey and worked on the 15th April.
Stories of the month!
Speak Up! Be Heard!
The government wants to know how we can make sure that health and social care staff have the right training to understand the needs of people with a learning disability and autistic people, and make reasonable adjustments to support them. They to hear your thoughts about the training, what it will look like and who will deliver it. Have your say at the consultation here.
Petition - Police Officers to have mandatory training in autism and learning disabilityA Capabilities Framework for Advanced Clinical Practice in Learning Disabilities and Autism - take part in the framework consultation survey
Self-taught photographer fights autism stereotypes with his pictures
Learning Disability Pride
Beyond the high fence - From the unheard voices of people with a learning disability, autism or both
A new publication from NHS England
Introducing learning disability champions in an acute hospital - article
Blogs and Vlogs
A better way to communicate with people with learning disabilities
A long letter to Joey: Learning Disabilities, Epilepsy and Cultural Representation
I have autism, and Theresa May’s awkwardness is my favourite thing about her
'Half of train staff don’t help people with autism’
Healthcare professionals need additional awareness so there is not another case like Oliver's
Moving on! A case study demonstrating the use of the Mental Capacity Act
My experience of 'Care and Treatment Reviews'
Not registering the right support to transform care
Please Stop Assuming a Person With a Disability Doesn't Understand You
Strangers Send Thousands of Rainbow Pictures to Comfort Orphaned Autistic Boy
What Does It Mean To Say That A Person With Autism Has An Extreme Male Brain?
14 Words to Consider When You Befriend My Son With Autism
Book of the month
Sexuality and Sexual Health for Individuals with a Learning Disability
Courses
Positive Behavioural Support - free e-learning
Easy read
The Skills of Expert Healthcare staff – what is important to you?
Events
12th March 2019, Manchester
Learning Disabilities and Autism: Promoting Positive Outcomes
20th March 2019, Manchester
Preventing deaths in people with a learning disability
29th March 2019, London
Growing Older with Learning Disabilities Conference 2019
During March and April 2019, Birmingham and London
The Foundations of Good Support for People with Learning Disabilities
2nd April 2019, Harrogate
Supporting People with a Learning Disability Through Loss and Bereavement
12th April 2019, London
Seminar for counsellors on the needs of adult siblings
25th April 2018, Birmingham
Positive Commitment 2019
25th - 26th April 2019, Birmingham
Together, we are better - Positive Choices
30th April 2019, then every Tuesday afternoon for 8 weeks, London
Research training course for people with intellectual disabilities
23rd - 25th May 2019, Barcelona, Spain
European Congress on Mental Health in Intellectual Disability
7th November 2019, Newcastle
Learning Disability and Psychiatry Update
Guidance and resources
Love Life: resources for young people with learning disabilities
Management of epilepsy in adults with intellectual disability
NICE guideline set to address variation in provision of services for adults with cerebral palsy
Prescribing anti-epileptic drugs for people with epilepsy and intellectual disability
News involving people with learning disabilities or autistic people
AFC Wimbledon and Charlton stage event for people with learning disabilities - 28th Feb, Wimbledon Times
Age limit at children's hospital emergency unit 'should rise' - 27th Feb, BBC
Appalling sexual abuse by staff of children in custody revealed by nationwide inquiry - 28th Feb, The Independent
Autism diagnoses in NI children up by more than 100% - 21st Feb, BBC
Autistic teenager took her own life after she was locked up in a care unit meant for psychiatric patients that 'cut therapists and employed unqualified staff' to save cash - 3rd Feb, Daily Mail
Autistic people angry at having to disclose diagnosis to DVLA even if driving not affected - 3rd Mar, The Guardian
Birmingham airport cuts ribbon on sensory room for people with autism - 16th Feb, AL.com
Bitty & Beau's Coffee Shop Run by People With Down Syndrome to Open Its Third Location - 8th Jan, The Mighty
Cafe hires people with Down Syndrome and pays them the national living wage - 21st Jan, Metro
Care Quality Commission issues first 'duty of candour' breach fine - 13th Feb, Out Law
Casting a puppet as autistic is a grotesque step backwards - 12th Feb, The Guardian
Christine McGuinness praised for opening up about her children's autism in candid Instagram post - 6th Mar, Manchester Evening News
Dating agency brings 'hope' to adults with learning disabilities - 23rd Feb, BBC
Devon is shamed for failing children with special needs and disabilities by having significantly weak services - 6th Feb, Devon Live
Disabled voting guide wins global award - 5th Mar, 3rd Force News
Expansion of budgets for personalised health and care support announced - 21st Feb, Gov.UK
First conservative MP to walk in the shoes of people with learning disabilities - 21st Feb, Politics
Five new secure units for autistic patients set to open in the UK… despite pledge to close them - 25th March, Easton Caller
Government gets DoLS replacement bill through Commons but now must secure peers’ agreement - 14th Feb, Community Care
Helping people with a learning disability to find love - 14th Feb, BBC
Homeless autistic man with tumours told he is not a priority by Cornwall Council - 18th Feb, Charity Today
Inclusive Welsh Theatre Company Wins The Stage International Award - 20th Feb, Business News Wales
If you're a woman with a learning disability, getting a cervical cancer screening can be traumatic – here's why - 4th Feb, The Independent
Internationally renowned learning disability theatre company Mind the Gap bring a spectacular new production to Halifax - 22nd Feb, The Yorkshire Post
LD and autism profile problem worse than MH - CQC chief - 11th Feb, Health Service Journal
Little boy with Down’s Syndrome nicknamed ‘Smiley Riley’ lands work as a model - 23rd Feb, Metro
Local teen shows life with Down syndrome can be full of possibilities - 28th Feb, Atlanta News Now
London Fashion Week - NI model with Down's Syndrome hits catwalk - 22nd Feb, Belfast Live
Man with learning disability lands dream job at Glasgow golf club with support from council - 22nd Feb, Glasgow Live
Mental capacity for handling the internet: Court of Protection - 27th Feb, UK Human Rights
More Colleges Opening Doors To People With Developmental Disabilities - 11th Feb, Forbes
MP Caroline Dinenage spearheads learning disability consultation - 21st Feb, Daily Echo
MP opens Eckington recruitment hub for young people with learning difficulties and disabilities - 5th Mar, Derbyshire Times
Muckamore families welcome police searches but concern about length of investigation - 31st January , The Irish News
Muckamore: Mum urges end to long-term hospital care - 25th Feb, BBC
New group vows to give people with disabilities a voice - 24th Feb, Halesowen News
NHSI stands down review panel over 'cover up' concern - 4th Mar, Health Service Journal
Parents lobbying for new law on pupil restraint consider judicial review - 25th Feb, LMP Education
People with intellectual disabilities are proud to vote: Give them the chance - 18th Feb, Parliament Magazine
People with learning disabilities missing out on cancer screenings - 22nd Feb, Plymouth Live
Plans unveiled to tackle low life expectancy for those with learning disabilities - 13th Feb, Bridport News
Police Being Trained On How To Deal With People Disabilities, By People With Disabilities - CBS Baltimore
Priory to close 'inadequate' High Wycombe hospital - 12th Feb, The Guardian
She may be Florida's first lawyer with autism. And she's out to change lives and minds - 22nd Feb, USA Today
Super League: 'Ground-breaking' learning disability rugby league launched - 13th Feb, BBC
Surrey second worst place in country for helping autistic people live independently, says council officer - 13th Feb, Surrey Live
The club hosting nights for people with learning disabilities - 19th Feb, BBC
The common autism myth dismissed as 'completely unjustified' and harmful by the NHS - 6th Mar, North Wales Live
The government is quietly shifting power away from patients to hospitals and care homes - 12th Feb, News Statesman
This is why NHS bosses are demanding more money for social care - 4th Mar, New Statesmen America
Valentine’s launch for friendship group for Falkirk folk with learning disabilities - 11th Feb, Falkirk News
Woman is 1st openly autistic person to practice law in Florida - 16th Feb, Fox 11
X Factor stars visit Brighton learning disabilities charity Team Domenica - 19th Feb, Brighton & Hove Independent
Reports
Reducing Restrictive Intervention of Children and Young People
Health and Care of People with Learning Disabilities , Experimental Statistics: 2017 to 2018
Making personalised care a reality: The role of occupational therapy
Requests
A consultation is open until 11th March on NICE 'Care and support of people growing older with a learning disability' visit the website.
Research
A novel investigation into the impacts of neuronal mutations on autism-related characteristics in humans has been described
Autism-anorexia link 'must be acted on'
Bullying Differs Based On Type Of Disability, Study Finds
How Music Therapy Affects the Brain in Autism
Injuries the largest cause of death for people with autism: Study
New research into autism smashes our misconceptions
Positive Well-Being May Protect Against Depression in Adults With Autism
Psychotropic drugs frequently prescribed for autistic people
SEXUAL HEALTH ISSUES IN WOMEN WITH INTELLECTUAL DISABILITIES
University of Utah study finds higher suicide risk in people with autism
Virtual reality a promising tool for reducing fears and phobia in autism
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