Wednesday, 31 October 2012

News Round Up #3

on people with intellectual disabilities and/or autism

Autism a small thing that was huge that your child has accomplished SF Gate, USA

Autism cases up in past 30 years York Region, Canada

Autism study first signs don't appear until after 6 months of age The Star, Canada

Black History Month celebrated at centre for adults with learning disabilities Guardian, UK

Centre makes Halloween less spooky for children with autism Province, Canada

Charity receives £40,000 to help people with learning disabilities into work Times, UK

Councillors vote to close centre for adults with learning disabilities STV, UK

Disability body faults reaction to service Irish Times, Ireland

Dr Temple Grandin talks about handling cattle and living with autism KFYO, USA

Huntington Hospital Planning Autism Facility INC Now, USA

Jo Whiley carers aren't recognised or given enough support Metro, UK

Job portal launched for disabled people The Times of India, India

Learning disability group to train local organisations Stornoway Gazette, UK

Mahaiwe screening shed new light on autism Berkshire Eagle, USA

New centre for people with learning difficulties opens Guardian, UK

Play focused program might help kids with autism US News, USA

Ridgeway Partnership apologies for letting down families after latest 'Panorama' findings This Is Wiltshere, UK

Soccer players with intellectual and physical disabilities set for Phoenix Cup Herald Sun, Australia

Winterbourne View: MP calls for action against Castlebeck BBC, UK

Conferences for Registered Managers

1st national registered managers conference within the learning disability sector being held on the 14th November in Nottingham, UK

1st national registered managers conference within the mental health sector being held on the 28th November in Birmingham, UK

Tuesday, 30 October 2012

Winterbourne Update


Last night the BBC's Panorama revisited the lives of those who were abused at Winterbourne View,  a private hospital run by Castlebeck Care. It sadly found that not much had changed for some of the individuals or families. Here is a selected list of the media responses since the programme aired.

Government preparing full response to abuse at Winterbourne View, MP's told Wiltshere Times

Lamb pledges learning disability care improvements Learning Disability Today Online

Minister to meet with Winterbourne View families ITV

Panorama's Winterbourne View follow up shows not much has changed Guardian

Winterbourne View and a crumbling system Disability Now

Get your tickets for the Little Noise Sessions 2013

The Little Noise Sessions organised by Mencap will be kicking off this year on the 19th November. The sessions will be curated by Jo Wiley. Hopefully Channel 4 will air the shows on TV again this year.

There is some rather famous and talented acts performing this year! Get your tickets here.


November 19th Gary Barlow

November 20th Olly Murs

November 21st Richard Hawley

November 23rd The Maccabees

November 24th Noah and the Whale

November 25th Amy MacDonald

Spread the word to end the 'R' word

The has been a huge amount of media attention regarding the use of the 'R' word over the last week. It has been in response to tweets written by the American conservative political commentator aimed at President Obama.

The Spread the Word to End the Word movement was established in 2009 during the Special Olympics Global Youth Activation Summit at the 2009 Special Olympics Winter Games. The Special Olympics describe the campaign:

“The motivation for the campaign was driven by a united passion to promote the positive contributions people with intellectual disabilities make to communities around the world combined with a simple call to action that also symbolizes positive attitude change and a commitment to make the world a more accepting place for all people.”

You can learn more about the campaign and to pledge your support here. The campaign describes the reasoning behind its work:

'When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.'

Follow End The Word on Twitter and like on Facebook.

Monday, 29 October 2012

News Round Up #2

on people with intellectual disabilities and/or autism

AGT to pilot autism friendly pantomimes The Stage, UK

Animal magic: How a specially trained dog is helping a young boy with autism cope with his fears Daily Mail, UK

Are you on it? Autistic spectrum disorder New York News, USA

Autism: early intervention can help regulate brain activity in kids Medical News Today, UK

Autistic boy given tracker device after disappearance TVNZ, New Zealand

Ball: Band spotlights musicians with disabilities Statesman, USA

Because I love her, I have to let her go Channel 4, UK

Bitter battle over how PA serves people with disabilities Philadelphia City Paper, USA

Call for learning disability checks DES to be redesigned Pulse, UK

Close care homes like Winterbourne View This is Bristol, UK

Gene linked to rare male-linked intellectual disability Asian Scientist

Ministerial Update on Winterbourne View HMG, UK

More programs needed for autistic adults Your Ottawa Region, Canada

Simon Baron Cohen: 'Autism is linked to minds that are wired for science' Wired, UK

Staten Islanders walk for autism and raise $158,000 Staten Island Advance, USA

Tackling disability hate crime some positives Channel 4, UK

Testing autism and air travel New York Times, USA

Thousands of pregnant women at risk from antidepressants The Telegraph, UK

Winterbourne view scandal: Call for new care home neglect law Independent, UK

Winterbourne View scandal: Prosecute corporate wilful neglect The Telegraph, UK

Winterbourne Nurses Jailed Nursing Times, UK

Saturday, 27 October 2012

Coulter won't back down, Special Olympics respond

John Franklin Stephens and Tim Shriver of the Special Olympics talk to Piers Morgan's CNN show about the 'R' word and Ann Coulter, who sees nothing wrong with her actions, will not apologise and has continued to use the 'R' word.

Friday, 26 October 2012

Justice at last?

"Culture of cruelty"


"Disgusting, vile and inexcusable"


"Inhumane, cruel and hate-fuelled treatment"

The 11 staff who pleaded guilty to 38 charges of abuse and assault of the residents of Winterbourne View, a private hospital provided by Castlebeck Care were sentenced earlier today. Out of the 11, six received custodial sentences ranging from six months to two years. The other five were given suspended sentences.

A selection of news reports from todays events:

Following the sentencing a statement from the families of those abused at Winterbourne View, was read by Beverley Dawkins from Mencap, watch it here.

I think we should never forget the organisation behind Winterbourne View Castlebeck Care, which Judge Ford today said had 'run with a scandalous lack of regard to patients and staff'. The company is currently on a publicity drive to clean up its image and reputation and lets be honest to continue making a profit. Though I'm not completely niave the inquiries into NHS run Cornwall, Sutton and Merton still resonate. The company states it has made "extensive changes in board and management" and I hope this will translate into positive change for every single person who is placed in their services.  Some of the families of the victims are taking civil action against Castlebeck Care. Though I hope they find a positive resolution in their efforts, it will never take away the inexcusable and intolerable abuse that some of the most vulnerable people in our society have endured at Winterbourne View. As in the family statement earlier, some of the scars will never heal.

The Challenging Behaviour Foundation and Mencap have issued a joint response to the sentencing, stating that this sends a clear message that the abuse of vulnerable people with a learning disability will not be tolerated.

"This must never happen again. Yet it is clear that the system is failing people with a learning disability, who are being sent away to institutions often hundreds of miles from home, where they remain for years, at increased risk of abuse and neglect."

Read their full response here. Mencap is currently running a campaign to stop another Winterbourne happening and to having people's needs met in their local communities opposed to be sent hundreds of miles away from their families. Read more about the campaign here, also a report from Mencap on assessment and treatment units here and to raise awareness of the problem to your local MP here.

I totally agree that health and social services for anyone, especially people with learning disabilities should be delivered locally. However abuse, cruelty and such bad practice could happen anywhere regardless of what postcode you are in. What we tend to hear little about is how these services are commissioned, the reasoning behind placement's or how local authorities/NHS commissioners check that the services individuals are receiving are appropriate, cost effective and most importantly making a difference to the persons life. What exactly were those who placed these vulnerable adults in Winterbourne View doing?

I think for people whose behaviour is described as challenging we have so much information, good practice guidance, research as to what works, a clear view on what are ethical and unethical practices, yet people are still regularly being placed in large institutional settings, miles away from home. It sounds more like people with learning disabilities and challenging behaviour are being sent away to serve their a prison sentence themselves opposed to those who abuse them. I fully appreciate we are in a time of austerity, but the recommendations from so many reports, most notably the first Mansell Report were published in an era of investment and apparent value orientated services, why did this not happen for those whose behaviour is described  as challenging? Out of sound, out of mind.

Regardless of whether a service is a half a mile down the road or two counties away or whether its an assessment and treatment unit or a supported living home specialising in challenging behaviour I think the following is just a snapshot of what should be in place to reduce the likelihood of another Winterbourne happening:

  • Transparent and robust governance procedures
  • Formal processes for the involvement of people using services and their carers in the service
  • Internal and external audit, not only CQC but local stakeholders including carers and people who use services
  • Some way of assessing the values of potential staff before they are employed, some people are just not right for caring for vulnerable adults
  • Thorough training needs analysis and consequent training plan based on meeting the needs of the people using the service and those working there, not just about corporate values and identity
  • Regular supervision facilitated by competent supervisors, which is checked is happening and measured for effectiveness
  • Practice reflects good practice guidance (i.e.Challenging Behaviour: A Unified Approach)

One of the major problems with assessment and treatment units is the length of time people with learning disabilities tend to stay in them. One should ask 'well my relative/friend/service user has been in your service for several years, exactly what assessment and treatment are you giving them?'  In regards of mental health I think there is a need for small locally based inpatient services for those with a learning disability who for whatever reason are unable to access generic services. People with learning disabilities who develop serious mental health problems should never be denied the appropriate assessment and treatment, which may include an admission, which any other person living in their street would be offered. The point is about offering assessment and treatment for a specific reason, with a clear care pathway and from the very first day of admission aiming towards the persons recovery and a clear mind set of returning the person back home.

On another point I saw this tweet earlier from the Twitter account of the Care Quality Commisson "The abuse at Winterbourne View was appalling - if you have seen or know about such abuse, you should contact the police" of course you should also contact the CQC, just pray that they listen and act this time.

The sad fact of Winterbourne is that if one staff member Terry Bryan had not contacted the BBC following his ignored attempts to raise the alarm with Castlebeck and the CQC it is likely that those who were placed at Winterbourne View would still be experiencing the horrific abuse at the hands of their paid carers. I applaud Terry for not letting go of his values, knowing what is right and what is wrong and for doing something about it, a shining light in the world of learning disability nursing. Follow Terry on Twitter and visit his website.

To conclude I would like to wish the people who lived at Winterbourne View and their carers the very best for the future, hope they find some peace and most importantly start the receive person centred, ethical and local services they are entitled to.

Advocate Eleanor Bailey on the 'R' word

Thursday, 25 October 2012

Improving health and lives conference

Improving health and lives: The Learning Disability Observatory is holding a conference on the 20th and 21st March 2013 in London, UK. The conference will explore the work of the Observatory over the last three years. It will focus on what we know now about the health of people with learning disabilities and what this means for commissioners, providers and others who have an interest in better health for people with learning disabilities. For more information visit here.

News Round Up #1

I will be doing a round up of news on people with intellectual disabilities and/or autism a couple of times a week. Hope you find it useful.

Ann Coulter crosses line with parents of special needs students with her 'retard' tweet during presidential debate Atlanta Journal Constitution

Autistic basketball hero Jason McElwain qualifies for Boston Marathon The Province

Autistic teens and adults need plain talk on sex Toronto Star

Bullying is a common problem for mentally disabled people Irish Examiner

CCG's must help improve QoF learning disability registers GP online

Hyperbaric oxygen in the treatment of childhood autism a randomised controlled trial Left Brain, Right Brain

People with learning disabilities face extreme prejudice but keep on fighting to have a valued life Nursing Times

Redefining autism in the DSM-5 The Conversation

Relaxed performances: Making theatre trips possible for people with autism or a learning disability BBC

Special Olympian pens open letter to Ann Coulter Time

Winterbourne View: Autism Society want punch probe

Winterbourne View: Medication was forced on patients BBC

Winterbourne View: New inquiry into earlier abuse claim BBC

Wednesday, 24 October 2012

Get voting in Ireland!

Downs Syndrome Ireland are running a campaign to encourage adults with Downs syndrome to vote in a forthcoming election on the Irish constitution. Check out the campaign here and also some easy read information on voting.

Removal of babies from parents with intellectual disabilities

Read this interesting article about stopping the forced removal of babies from parents with intellectual disabilities in Australia, view it here.

Winterbourne Update

Read the Guardian Newspaper article on 'Has castlebeck care really transformed since the Winterbourne Scandal?' here.

Monday, 22 October 2012

Community based support

Read a short article from Guardian Social Care on a new organisation to promote community based support for people with intellectual disabilities. Read it here.

Focus on Vision and Sight

Watch this informative video clip from SeeAbility explaining that people with intellectual disabilities are 10 times more likely to have serious sight problems than other people.
SeeAbility provides a range of services including free information for:
Courses and workshops
Mark Gray Associates

Vision and people with learning disabilities: Guidance for General Practitioners
Best practice guide: Enhanced eye tests for people with a learning disability

Information for people with intellectual/learning disabilities
Range of easy read leaflets compiled by Easy Health

On line articles
A vicious circle visual impairment in people with learning disabilities
People with learning disabilities more likely to develop sight problems
Sight loss undiagnosed among people with a learning disability

Organisations and services
Action for Blind People
Kent Association for the Blind
Look Up
RNIB Learning Disability Service

Training event on working with people with autism

The Forensic and Neurodevelopmental Sciences Teaching Unit, Department of Forensic and Neurodevelopmental Sciences at the Institute of Psychiatry, King's College London would like to invite you to their forthcoming workshop.
Autism Spectrum Disorders in Adults:
Assessment and Management
The Brunei Gallery London
29th November 2012
Despite considerable mental and physical health co-morbidities in people with autism spectrum disorders and the availability of effective assessment strategies, the disorder can often go unrecognised. This leads to unnecessary distress, ineffective use of treatment and the poor management of co-morbid mental health conditions.
This workshop is delivered by a team of leading UK experts and is designed to fill the gap in clinical training that currently exists by providing detail on how to make a diagnosis of autism and strategies for its management from an individual and service perspective.
This workshop covers the assessment and diagnosis of autism spectrum disorders, interventions for Adults with ASD and will help to develop practical skills on how to undertake a psychiatric interview.
Venue:  The Brunei Gallery, Russell Square, London, WC1H 0XG
Further information can be found  here.
 Contact information:
Alessandra Scotti.  020 7848 5279, 

Sunday, 21 October 2012

Autism at the Cochrane Library

The Cochrane Library is a collection of databases in health care related subjects provided by the Cochrane Collaboration.One of its best resources is its collection of systematic reviews and meta-analyses which summarise and interpret results of heath care research. I have searched the database and found the following relating to people with autism:

Acupuncture for autism spectrum disorders

Aripiprazole for autism spectrum disorders

Auditory integration training and other sound therapies for autism spectrum disorders

Diagnostic tests for autism spectrum disorders in preschool children

Early intensive behavior interventions for young children with autistic spectrum disorders

Gluten and casein free diets for autistic spectrum disorders

Interventions based on the Theory of Mind cognitive model for autism spectrum disorder

Music therapy for autistic spectrum disorder

Risperidone for autism spectrum disorder

Selective serotonin reuptake inhibitors (SSRI's) for autism spectrum disorders

Social skills groups for people aged 6 - 21 with autism spectrum disorders

Tricyclic antidepressants for autism spectrum disorders in children and adolescents

Focus on Epilepsy

Epilepsy affects up to 25% of people with intellectual disabilities and can have a significant impact on the individuals quality of life and mental health. Here are a number of useful links and resources.





Guidance on Epilepsy and People with Intellectual Disabilities

Epilepsy and Learning Disability: Epilepsy Society
Intellectual Disability with Epilepsy: National Centre for Mental Health
Learning Disabilities and Epilepsy: Epilepsy Action
Understanding intellectual disability and health: Epilepsy Guidance


General Guidance

Diagnosis and management of epilepsy in adults
The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care (NICE Guidance)
Epilepsy drug treatment

Learning Resources

Royal College of Psychiatrists Epilepsy E-Learning



American Epilepsy Society
The Charlie Foundation
Epilepsy Action
Epilepsy Australia
Epilepsy Connections
Epilepsy Foundation USA
Epilepsy New Zealand
Epilepsy Research UK
Epilepsy Society UK
Epilepsy Scotland
Epilepsy South Africa
Epilepsy Therapy Project
International Bureau for Epilepsy
International League Against Epilepsy
National Association of Epilepsy Centres USA
NHS Epilepsy
Young Epilepsy


Epilepsy and Intellectual Disabilities (2008) by Vee Prasher and Mike Kerr

Intellectual Disabilities at the Cochrane Library

The Cochrane Library is a collection of databases in health care related subjects provided by the Cochrane Collaboration.One of its best resources is its collection of systematic reviews and meta-analyses which summarise and interpret results of heath care research. I have searched the database and found the following relating to people with intellectual disabilities:

Amphetamine for ADHD in people with intellectual disabilities

Antipsychotic medication for challenging behaviour in people with learning disabilities

Antipsychotic medication versus placebo for people with both schizophrenia and learning disability

Behavioural and cognitive-behavioural interventions for outwardly-directed aggressive behaviour in people with learning disabilities

Interventions for learning disabled sex offenders

Non-pharmalogical interventions for epilepsy in people with intellectual disabilities

Organising healthcare services for persons with intellectual disabilities

Parent training support for intellectual disabled parents

Pharmalogical interventions for epilepsy in people with intellectual disabilities

Pharmacological interventions for self-injurious-behaviour in adults with intellectual disabilities

Risperidone for ADHD in adults with intellectual disabilities

Thursday, 18 October 2012

Internet Safety: A Parents Guide

Cerebra, Mencap and Ambitious About Autism have a produced a new guide for parents of children with intellectual disabilities and/or autism on Internet Safety, download a copy here.

Breaking Bad News

Breaking Bad News is a new excellent on line resource which gives guidance on how to support someone with intellectual disabilities in bad news situations.

Depression in Young People: A Research Study

The Judith Trust is the only charity in the UK that focuses solely on the mental health of people with intellectual disabilities. They have a history of commissioning and carrying out research to improve the mental health for this vulnerable group. They are conducting a new project looking at depression in young people with intellectual disabilities. They are looking for people to share their experiences. Find out more here.

They also have a vacacny for a Policy Manager, more details here.

Winterbourne View Update

The BBC's Panorama, which exposed the abuse of people with intellectual disabilities at Winterbourne View, a private hospital will be revisiting the subject on the 29th October 2013. The programme will broadcast at 20.30 GMT on BBC1.

The Department of Health has published its response to Mencap's Winterbourne Campaign. Read their statement here.

Terry Bryan the nurse who became whistleblower shares his story about Winterbourne View here. Also read his initial email raising his serious concerns about the care and practice at Winterbourne View to the Hospital Manager here.

Castlebeck the company that owned and managed Winterbourne View has just published its Quality Strategy for 2012, view it here.

Some of those found guilty of abuse and neglect at Winterbourne View are due to be sentenced early next week on the 22nd October 2012.

Support in Crisis Pregnancy

I found a comprehensive literature review on Provision of Appropriate and Accessible Support to People with an Intellectual Disability who are Experiencing Crisis Pregnancy by the National Disability Authority in Ireland. It provides a review of the law in regards of sexual relationships in several Western Countries, assessment of capacity to consent and issues of exploitation and abuse. Check out the review here.

Wednesday, 17 October 2012

The Nurse Awards 2013

The Nursing Standard Nurses Awards 2013 has a Learning Disability Award! The award is open to nurses, healthcare assistants and assistant practitioners working within the field of learning disability. If you, colleague or team have introduced a new and innovative initiative that has improved the health and well-being of people with a learning disability then enter here. Learning disabilities have not always been included, so take up this opportunity!

PhD Opportunity at the Tizard Centre

The Tizard Centre has an excellent opportunity for a departmental studentship for an exceptional candidate. The Tizard Centre has an outstanding reputation in research and education in the field of intellectual disabilities. For more details contact:  

New Issue: Journal of Mental Health Research in Intellectual Disabilities

A new issue of the Journal of Mental Health Research in Intellectual Disabilities is out. Its a themed issue on: Early Identification and Intervention of Behavior Problems in Intellectual Disabilities. Visit the journal's current issue page here.

Guidance for Police Officers

The National Policing Improvement Agency UK (2010) produced guidance for its police officers on how to respond to people with mental ill health or learning disabilities. Download the guidance

Service Trends for People with Intellectual Difficulties in Ireland

A new report published yesterday by the Health Research Board  the lead agency in Ireland supporting and funding health research shows that while there has been an increase in provision of services for people with intellectual disability, a number of factors, such as people in this population group living longer, will lead to a rise in the demand for services in the next few years. The following is from their press release:

The Annual Report of the National Intellectual Disability Database Committee presents 2011 levels of service provision and highlights the likely service demand from 2012 to 2016 among people with an intellectual disability. Key trends observed in the report include; increased provision of services, an on-going demand for services to meet the reported needs of people with an intellectual disability, a continuing shift away from the provision of residential services in institutional settings towards community living and greater numbers of individuals surviving into old age. All of these trends have implications for the planning and provision of services into the future.

Future service needs 2012-2016

  • The 2011 data indicate that 4,505 new residential, day and/or residential support places will be needed to meet service requirements, half of which are residential places. A total of 10,153 people will require changes or enhancements to their day service.
  • There is substantial demand for all the therapeutic inputs for the coming five years, in particular, psychology, speech and language therapy and occupational therapy.
  • The report highlights the significant amount of HSE funded health services interventions which school leavers will require as they leave the education system and move to day services in the areas of training and employment.
The report highlights two significant factors that should be taken into account in service planning.

Firstly, people with intellectual disability are now living longer and this means that they could outlive their caregivers. The extent of this issue is illustrated by the fact that 66% of people registered on the NIDD (17,916 individuals) were living at home with parents, siblings, relatives or foster parents in 2011. More than a quarter of those over 35 years of age with a moderate, severe or profound intellectual disability are included in this figure.

Secondly the census figures show a sustained high birth rate and an increase in the general population of those aged 65 years and over since 2006, both of these trends will place increasing demands on services into the future.

The full report can be downloaded here.

Tuesday, 16 October 2012

Forced Marriage

I just read some interesting guidance on forced marriage and people with learning (intellectal) disabilities. Written by Rachael Clawson from the Ann Craft Trust and Pam Vallance from the Judith Trust and published by Forced Marriage Unit and Home Office of the UK Government. The publication is called: Forced Marriage and Learning Disabilities: Multi Agency Practice Guidelines and can be downloaded here.

Offenders with Learning Disabilities Call for Papers

The 12th International Conference on the Care and Treatment of Offenders with Learning Disabilities is being held on the 4th and 5th April 2013 in Newcastle, UK. There is a currently a call out for papers and workhsops for the event. The deadline for the submission of papers is Friday 11 January 2013. View the on line submission guidance and form here.

Sunday, 14 October 2012

AAIDD Call for Presentations

The 137th American Association on Intellectual and Developmental Disabilities Annual Meeting, Race to Catch the Future, will provide researchers, clinicians, practitioners, educators, policymakers, local, state and federal agencies, and advocates with cutting edge research, effective practices, and valuable information on important policy initiatives. The conference will have thought-provoking plenary sessions concerning emerging issues in the field of intellectual and developmental disabilities and ways in which professionals can prepare themselves and their organisations to thrive in a field that is in transition. Additionally, the conference will feature panel presentations, poster presentations, taskforce and special interest group meetings, and multiple networking opportunities.

The conference call for presentations is now open, instructions and on line submission can be accessed here. Submission deadline is 1st December 2012.

IASSID Call for Abstracts

The International Association for the Scientific Study of Intellectual and Developmental Disabilities will be holding its Asia-Pacific 3rd Regional Conference on 22 - 24 August 2013 in Tokyo, Japan. There is a call out for abstracts for platform and poster presentations. More information can be found here. Closing date is 19 December 2012.

Getting hospital care right for people with learning disabilities

Getting hospital care right for people with learning disabilities
Thursday 22 November 2012
Post Graduate Medical Centre at Hull and East Yorkshire Hospitals NHS Trust
Via the London Health Network
Can all acute liaison nurses discuss the conference with their nursing and medical directors and commissioners and persuade to attend?
I have pleasure in highlighting this important event to you, which is being held on Thursday the 22nd November at the postgraduate medical centre at Hull and East Yorkshire Hospitals NHS Trust. This is a joint event, run by the A2A network, Mencap, the Royal College Nursing and the Learning Disabilities Public Health Observatory.
The focus of the event is on better acute hospital services for people with learning disabilities with particular reference to the Monitor Compliance Framework Governance Indicators for people with learning disabilities.
The day will include crucial information to improve your services for people with learning disabilities, including a presentation by Beverley Dawkins and Scott Watkin from Mencap, on Death by Indifference: 74 deaths and counting, a presentation by the Improving Health and Lives Learning Disabilities Public Health Observatory on what we are learning from hospital data about people with learning disabilities, and some key messages from acute liaison nurses and the Access 2 Acute network.
This event is specifically aimed at acute/ambulance NHS staff rather than those who manage and support specialist learning disability services. Therefore, please do not cascade this letter to your learning disability colleagues if you are unable to attend. Please consider which clinical and managerial leads from your organisation are best placed to support this important agenda.
The event organisers would be very grateful if you could confirm attendance by email to by no later than Friday 26th October. They will send you further information including the full programme nearer the time. I hope that you are able to attend what promises to be an important event for acute services.
Yours sincerely
Jane Cummings
Chief Nursing Officer (England)

Defeat Dementia in People with Down's syndrome

The Cambridge Intellectual and Developmental Disabilities Group in partnership with the Down's Syndrome Association and the Wolfson Brain Imaging Centre are investigating the risk of dementia in people with Down's syndrome. Watch this short video which explains what the project is about and hopes to find participants for their study.

Exciting research in Alzheimer's disease and people with Down's syndrome

The predisposition of people with Down' syndrome to developing Alzheimer's disease is well established and the prevalence is much greater, with 36% of individuals having developed the disease in their 50's and 54% in their 60's (Prasher, 1995). There are structural changes that occur in the brains of people with dementia, called amyloid plaques. It has been found that people with Down's syndrome develop these amyloid plaques, including those who do not go on to develop Alzheimer's disease. A new research group; London Down's Syndrome Consortium has been created, bringing together leading clinicians and academics to explore this complex issue and were recently successful in gaining a £2.5 million grant from the Wellcome Trust. The research team will be exploring the factors in those individuals with Down's syndrome who do not develop dementia. The consortium is being led by Dr. Andre Strydom from the Centre for Health Service Research in Intellectual Disabilities at University College London.

Read an in depth article from the Guardian on this exciting development here.

Further information and support on dementia and people with Down's syndrome
Dementia and people with learning disabilities: Guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia
Down's syndrome and Alzheimer's disease
Help us defeat dementia in Down's syndrome
Information from Dementia Web

Prasher VP (1995) Prevalence of psychiatric disorders in adults with Down syndrome. European Journal of Psychiatry 9, 77-82.

Friday, 12 October 2012

A Tribute to Yolanda Zimock

Yolanda Zimock, Member of Lewisham Speaking Up, Founding member of the Tuesday Group and an active member of Lewisham's learning disability community sadly passed away earlier this week.

I first met Yolanda in 2000 when I went to meet her at her flat in Lewisham. I was visiting as she had shown an interest in a mental health promotion group I was setting up for people with learning disabilities, thankfully she agreed to join and attended the group from its first meeting. Yolanda with the other members decided to name the ensemble The Tuesday Group.

Yolanda was an active member of the Tuesday Group, she contributed to all of our discussions, was never afraid to speak her mind and always had an opinion, which were inevitably promoting the rights of people with learning disabilities. Yolanda was also a valued member of the Lewisham Speaking Up Group and served a term of office in Lewisham's People's Parliament. In the Lewisham learning disability community; Lewisham Mencap, Community Teams, Gateway Clubs and Partnership Board everybody knew Yolanda.

I will be forever be thankful to Yolanda for her participation in the Tuesday Group and in particular her contribution to promoting the mental health needs of people with learning disabilities. Yolanda regularly contributed to training support workers in south east London, gave presentations to mental health teams on how to work with people with learning disabilities, spoke at national conferences, participated in local audits, was a member of several steering groups for research projects and with other members of the Tuesday published several journal articles.

But what I will really remember is her sense of humour, often dry, always witty and which left you thinking did she really mean that, until you caught her out of the corner of your eye having a quiet giggle to herself. My fondest memories will include the times we run a stall at Lewisham College World Mental Health Day Celebrations, where we were promoting the rights of people with learning disabilities to all students, our visits to ORT House in Camden and the Christmas meals.

Yolanda I miss you greatly.

(The photograph was taken at Kingston University London, UK, where the Tuesday Group and Beat the Blues Group gave a presentation at the Learning Disability Open Meeting.)

Catch up on LDNursechat

Last night was the third LDNurse Twitter Chat which provided a stimulating and interesting dialogue on the impact of hearing loss on people with intellectual disabilities. Read a transcript of the chat here. The next chat will be on Thursday 25th October 2012 and the theme will be the 6c's of nursing. Check out more about the 6c's here. To join the chat log onto twitter and follow the #LDNursechat. Get involved, get chatting!

Supporting Complex Needs

Supporting Complex Needs: A practical guide for support staff  working with people with a learning disability and mental health needs is a free publication written by staff at the Estia Centre and Turning Point. Download a copy here.

Thursday, 11 October 2012

NADD 29th Annual Conference

It's the 29th Annual Conference of the National Association for the Dually Diagnosed next week, 17 - 19 October 2012 in Denver, USA. This years theme is Mental Wellness in Persons with  Intellectual and Developmental Disabilities and Autistic Spectrum Disorders: Innovation, Collaboration & Quality of Life  . Keynote talks include:

  • Climbing Every Mountain: Efforts to Improve Clinical Outcomes and Quality of Life for Individuals with Autism Spectrum Disorders - Jean Frazier, Vice Chair of Psychiatry, University of Massachusetts Medical School, USA
  • Developmental Disabilities & Dual Diagnosis: Emerging Technologies in an Era of Economic Uncertainty - David Braddock, Executive Director of  Coleman Institute for Cognitive Disabilities, and Associate Vice President of University of Colorado, USA
Further information can be found here. On-line registration is now closed but space is available if you register in person on the day. Wishing all the speakers and delegates a great conference and learning experience, I wish I was there!

Improving Health and Wellbeing

Improving health and lives: Learning Disabilities Observatory has published guidance for Clinical Commissioning Groups. The publication is entitled: Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups, which provides good practice on commissioning general and specialist health services for people with learning disabilities. Clinical Commissioning Groups are due to start operation in England in April 2013, lets hope they read this guidance and the health of people with learning disabilitis does not get lost among the overhaul of the NHS. Download the guidance here.

How to break bad news to people with intellectual disabilities

A new publication written by Irene Tuffrey-Wijne

How to break bad news to people with intellectual disabilities

This book offers unique and flexible guidelines that can be used by practitioners to ease the process of breaking bad news to people with intellectual disabilities. The guidelines, which are adaptable to individual communication ability and level of understanding, address the many complex needs of people with intellectual disabilities who can find understanding and accepting news that has a negative impact on their life a very difficult task. In the book, Irene Tuffrey-Wijne covers a range of different types of bad news, from bereavement and illness to more minor issues such as a change of accommodation, and offers highly practical and effective tips that will help carers and practitioners ensure that bad news is relayed as sensitively and successfully as possible.

An easy-to-use and comprehensive guide, this book will be an invaluable resource of information for carers, health professionals such as doctors and nurses as well as families of people with intellectual disabilities.

Wednesday, 10 October 2012

Practice Guidance in Assessment

In 2001 the European Association for Mental Health in Intellectual Disability published free guidance on the Practice Guidelines for the Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability. Though over a decade old now, I think its still an excellent resource and would be helpful to a wide range of people who support or work with people with intellectual disabilities. Download a copy