Easy Read
LDAG News
Summer/Autumn 2013
What has the LDAG been doing? The Learning Disability Advisory Group (LDAG) met on 10 September 2013 in Cardiff.
Hate Crime Framework The group talked about the Hate Crime Framework. 2 people in the LDAG are also part of the All Wales Hate Crime Research Project. They will work with the co-Chairs of the LDAG Roger Banks and Sophie Hinksman to tell Welsh Government what they think about the Hate Crime Framework. You can find out more about the Framework on the Welsh Government website: http://wales.gov.uk/ consultations/equality/130711-hate-crime-framework -consul/?lang=en.
Safeguarding Advisory Panel Welsh Government is thinking about changing the way services look into cases of adults being abused. This would mean that there would be Adult Practice Reviews instead of Serious Case Reviews. Mick Collins from Powys Adult Social Services will be working on this with Welsh Government. (More on page 2)
Easy Read newsletter
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LDAG News Easy Read (From page 1)
The LDAG will also look into this as part of the subgroup on making care better for people with learning disabilities and challenging behaviour in Wales.
Mental Health Measure Welsh Government is setting up some groups to look at how the Mental Health (Wales) Measure 2010 is working. This is a law in Wales about services for people who have mental health problems. “To catch the reader's attention, place an
The groups will be looking at different parts of the law:
interesting sentence or quote from the story here.”
who can carry out assessments
what the Care and Treatment Plans should look like
who can become a care co-ordinator
who can ask for another assessment to be done
what Independent Mental Health Advocates do and how people can get help from them.
Some of the members of LDAG said they would like to join the groups to look at parts of the law that might affect people with a learning disability.
Workstreams and sub-groups For part of the meeting the LDAG members split into 3 groups. Each group looked at one of the topics that the new LDAG sub-groups will be working on:
Making care better for people with learning disabilities and challenging behaviour in Wales. (More on page 3)
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Summer/Autumn 2013 (From page 2)
This is because of the abuse that happened at Winterbourne View in England.
Why the health and healthcare of people with a learning disability is often worse than other people and how to make it better.
Advocacy or speaking up for yourself or someone else.
Each group had a list of questions to think about and try to answer. They all came up with ideas for the new sub-groups to work on.
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
They also wrote lists of the people and organisations who should be invited to join the sub-groups.
Winterbourne View Action Plan LDAG co-Chairs Roger and Sophie wrote to the Deputy Minister for Social Services in July 2013 about making care better for people with learning disabilities and challenging behaviour in Wales. They sent a copy of the Action Plan that was written by the Challenging Behaviour Community of Practice (CB CoP). The Action Plan had lots of ideas about what needs to be done in Wales to make sure that people are not abused like the people who lived in Winterbourne View. The Deputy Minister for Social Services Gwenda Thomas replied to Roger and Sophie’s letter on 18 August. (More on page 4)
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LDAG News Easy Read (From page 3)
She asked the LDAG to tell her which 5 ideas in the Action Plan they think are the most important. The LDAG decided to ask the CB CoP what they thought. The CB CoP will look at the Action Plan again at their meeting on 18 September and decide which 5 ideas they think are the most important.
“To catch the reader's attention, place an interesting sentence or quote from the story
They will also choose members of the CB CoP to join the LDAG sub-group on making care better for people with learning disabilities and challenging behaviour in Wales.
here.”
30 Years and Counting Event The LDAG are holding an event to celebrate 30 years of the All Wales Strategy. The All Wales Strategy was about people with a learning disability moving into the community and not living in big hospitals like Ely and Hensol anymore. Mencap Cymru, All Wales People First, Learning Disability Wales and All Wales Forum of Parents and Carers have been planning the event. They have invited people with a learning disability, families, carers and professionals to come to the event. Deputy Minister for Social Services Gwenda Thomas will be speaking at the event. There will also be a chance to talk about some of the things that are important in people’s lives like: (More on page 5)
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Summer/Autumn 2013 (From page 4)
jobs
health
hate crime.
Roger and Sophie will be chairing the event together. There will be stalls where people can find information about community services. In the evening there will be a meal and a disco.
“To catch the reader's attention, place an
Research into early deaths of
interesting sentence or quote from the story here.”
people with learning disabilities Samantha Williams LDAG Information Officer went to a meeting to find out about some research into the early deaths of people with a learning disability. Anna Marriott was one of the people who carried out the research. Anna gave a presentation on how they did the research and what they found out. The research looked at the deaths of people with a learning disability between June 2010 and May 2012 in 5 areas of England. There were more deaths than they expected. (More on page 6)
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LDAG News Easy Read (From page 5)
The research showed that people with a learning disability often die younger than people who do not have a learning disability. Men with a learning disability died 13 years earlier than men without a learning disability. Women with a learning disability died 20 years earlier than women without a learning disability.
“To catch the reader's attention, place an interesting sentence or quote from the story here.�
People with very serious learning disabilities and other disabilities or medical problems were more likely to die early. The death certificates showed that lots of the deaths of people with a learning disability were because of problems with the lungs or heart. The people who did the research were worried that not enough of the deaths of people with a learning disability were reported to the coroner. A coroner looks into why someone died. The research showed that nearly half of the people with a learning disability might not have had to die when they did. It showed that quite a lot of the people with a learning disability might not have died when they did if they had been given better healthcare. (More on page 7)
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The research also showed that there did not seem to be any problems with knowing that people were ill. But there were problems with finding out what was making them ill. People with a close friend or partner were less likely to die early. This shows how important it is to have an advocate or someone who knows the person really well to speak up for them when they are ill. There were 3 main reasons why people with a learning disability did not get good healthcare:
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
Health services did not make enough reasonable adjustments. This means making changes so that people with a learning disability can access services and understand what is happening or what they need to do.
Different services did not work together very well to make sure people got the right care.
People did not have access to good advocacy.
Here are some of the other problems that stopped people from getting good healthcare:
Capacity
Information about people’s health was not kept properly or shared with the right people.
Staff did not understand the Mental Capacity Act properly. This is a law about people being able to make their own decisions or sometimes having someone else make decisions for them. (More on page 8)
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LDAG News Easy Read (From page 7)
Health and care plans were not very good.
It took too long to find out why people were ill and start trying to make them better.
The people who did the research looked at all the results and wrote a report. The report listed 18 ideas to make healthcare for people with a learning disability better and to stop them dying early. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
In July 2013 the Department of Health wrote a report about the research and said what they would do about the 18 ideas. You can read the research report and the Department of Health’s report in Easy Read here: http://www.bris.ac.uk/cipold/.
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Summer/Autumn 2013
What has the CB CoP been doing? The Challenging Behaviour Community of Practice (CB CoP) met on 18 September 2013.
Action Plan They spent time looking at the Action Plan on how to make care better for people with learning disabilities and challenging behaviour in Wales. They tried to choose the 5 most important ideas from the Action Plan to tell the Deputy Minister for Social Services. “To catch the reader's attention, place an
interesting sentence or quote from the story here.�
They also want to tell her about good ways of working with people with learning disabilities and challenging behaviour that are already happening in Wales. They also chose people to join the LDAG sub-group on making care better for people with learning disabilities and challenging behaviour in Wales.
Assessment and Treatment Units There were 2 presentations about Assessment and Treatment Units. An Assessment and Treatment Unit is where people sometimes go when they have mental health problems and need special help.
(More on page 10)
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LDAG News Easy Read (From page 9)
The presentations were about:
how the services are run
how they decide what help people need
the sort of help they give to people, like drama therapy.
End of life planning The next presentation was by Richard Tiplady who is the manager of a care home in England. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
He talked about planning for when a person with a learning disability is going to die. His organisation has worked with other organisations to help the people they support to plan for the end of their lives. Staff had training at a local hospice. This is a place where people who are very ill sometimes go to stay and are cared for until they die. The staff also worked with the local community learning disability team. They helped people to write end of life plans about what they wanted.
Case study The last presentation was by David Jones and Glenn Greenacre from Community Lives Consortium. (More on page 11)
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It was about teaching an 18 year old man with autism, a learning disability and challenging behaviour how to masturbate properly. Masturbate means touching yourself to give yourself sexual pleasure. David and Glenn said they were surprised that there was hardly any good information about masturbating for people with a learning disability. “To catch the reader's attention, place an
The only information they could find was about how to stop people doing it in public or in other places where you should not do it.
interesting sentence or quote from the story here.”
They could not find information about how to help someone do it properly. There are lots of reasons why people with a learning disability have problems with masturbating:
Not enough information or training
Staff do not want to talk about it or do not know how to talk about it with the people they support
Sometimes people do not understand where or when it is ok to masturbate
Being worried or stressed
Some medicines that people have to take can make it difficult to masturbate properly
Physical problems like a problem moving your hands (More on page 12)
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LDAG News Easy Read (From page 11) 
When people do not have interesting things to do in their lives they can sometimes think about sex and masturbating too much.
David and Glenn told the group about a young man they supported who had learning disabilities, autism and challenging behaviour. Staff thought that some of his challenging behaviour was because he could not masturbate properly. This was making him very frustrated and angry. Staff decided to help teach him how to do it properly. They watched his behaviour before and after the training to see if it made a difference. They found that his behaviour was much better and less challenging after the training. This meant that he did not have to go to an Assessment and Treatment Unit. He could stay living where he was in a shared house with support. David and Glenn want to write about the training so that other staff can use it to help the people they support.
For more information or to let us know what you think, phone Sam Williams on 029 20681160 or e-mail: samantha.williams@learningdisabilitywales.org.uk Follow us on Facebook and Twitter @LDAdvisoryGroup