Written by Clare Melvin
The Challenging Behaviour Foundation has launched a new resource on psychotropic medication use for people with learning disabilities, autism or both. The resource is for family carers and has been developed by the CBF as part of the STOMP programme, led by NHS England.
Psychotropic medication is a term for several types of drugs usually given to help with mental health needs.
STOMP stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines. It is a national project involving many different organisations which are helping to stop the over use of these medicines. STOMP is about helping people to stay well and have a good quality of life.
The new resource covers topics such as:
- What you need to find out before your relative starts taking medication
- What the alternatives are to medication
- How medication should be monitored
- What to do if you have concerns about your relative’s medication.
Families can choose to use a printed Medication Information Pack or an online Medication Pathway interactive resource.
To order a copy of the Medication Information Pack, please contact the CBF
The CBF has been raising the issue of over-mediation and inappropriate medication use for many years, with a succession of Government Ministers. A Serious Case Review following the scandal at Winterbourne View found many patients were prescribed antipsychotic and antidepressant medication with no diagnosis of a mental health need to support their use. The Challenging Behaviour Foundation has recently run a consultation providing a voice for family carers to share their lived experience when medication is suggested or prescribed for their relative, as well as to identify what information and support family carers currently have access to when medication is suggested or prescribed for their relative. They found that many family carers welcomed national work to stop the over medication of people with learning disabilities and autism, but expressed frustration and anger at how long change is taking. Many family carers were anxious that their loved ones had been medicated inappropriately and had a range of debilitating side-effects. There was also evidence of a lack of information and advice for family carers regarding medication decisions. You can read the full report – “Stopping the Over Medication of People with Learning Disability, Autism or Both: A Family Carer Perspective“.
Getting care and treatment right for children and young people: STOMP-STAMP.
At the end of last year, the Royal College of Paediatrics and Child Health and NHS England jointly launched STOMP–STAMP. This extends the STOMP (Stopping over-medication of people with learning disability, autism or both) campaign to include children and young people.
So far, adults have been STOMP’s primary focus. The STOMP–STAMP programme of work reflects both the ambition to stop the over-medication of children and young people with a learning disability, autism or both, and a commitment to ‘Supporting Treatment and Appropriate Medication in Paediatrics’ (STAMP). This is about ensuring that children and young people have access to the right medication at the right time and for the right reason.
At the launch event on December 3rd, the Royal College of Paediatrics and Child Health and other key partners pledged their support for STOMP–STAMP and showcased initiatives to deliver improved treatment for children and young people. Find out more in this introductory resource and on the NHS England website.
Autism Act: 10 Years On survey.
As this year marks the 10th anniversary of the Autism Act in England and The National Autistic Society are working with the All Party Parliamentary Group on Autism (APPGA) to find out more about the state of care and support for autistic children and adults across the UK.
The Autism Act says the Government has to review its autism policy from time to time. This is happening this year, providing a vital opportunity to uncover what has and has not changed over the last decade and to campaign for further improvements to support for autistic people. The National Autistic Society want as many autistic people and families to engage in this survey to help them tell Government what needs to change.
This survey covers areas such as social care, training, benefits, mental health and transition from childhood to adulthood. Over recent years, surveys on other topics, like employment and education, have been completed and will be included in the research.
Although the Autism Act only applies in England, The National Autistic Society want to hear from you if you live in Scotland, Wales or Northern Ireland too. This will help to build a better understanding of what is happening across the UK and uncover any specific issues.
You can complete the survey here (it takes 15-30 minutes to complete) and all surveys need to be completed by 10pm on April 7th 2019.
Other LD News.
- Inclusive theatre: tackling stigma and facilitating discussion. A visit to the theatre may seem unproblematic. But, for people with mental health needs, learning disabilities, and autism, this seemingly simple joy can become more distressing than enjoyable. Read this post by Chloe Apter from Learning Disability Today.
- Personalised Care will benefit up to 2.5 million people by 2024, giving them the same choice and control over their mental and physical health that they have come to expect in every other aspect of their life. Universal personalised care: Implementing the Comprehensive Model confirms how we will do this by 2023/24. It is the action plan for the rolling out personalised care across England. Find out more here.
- Challenging stereotypes of people with learning disabilities. Heart n Soul’s Big 30 Archive is full of personal stories that challenge society’s idea of what people with learning disabilities can do. Mark Williams, Heart n Soul co-founder, shares some of the photographs and voices of artists, participants, friends and staff, with and without learning disabilities.
‘I hope Kanye samples it’: the day centre with its own recording studio. Learning-disabled people at the Daylight centre are exploring their creativity by releasing their own songs. Read more about the centre and the work being undertaken on The Guardian website and watch a video including some of the artists here.
Training & Conferences:
- BILD Putting PBS into Practice: The 2019 Conference is once again set to be the largest UK gathering of practitioners, researchers and internationally-renowned PBS experts. It will be packed with opportunities to learn new skills, share good practice, debate key issues and hear about new ideas and developments. The theme for this year is Putting PBS into Practice and we will be offering a mix of workshops, masterclasses and inspirational keynote speakers. Booking will be opening in January. The conference is being held 8,9 & 10th May in Birmingham, UK. Read more, including keynote speaker information here.
- SOTSEC-ID – two-day facilitator training. SOTSEC-ID is a CBT based intervention programme specifically developed for adults with learning and developmental disabilities who are at risk of sexually abusive or sexual offending behaviours. The next 2 day SOTSEC-ID Training event will be held in London on 3rd and 4th July 2019 – find out more about the treatment programme here and please contact Emily for training information and booking.
- The National Autistic Society and Axcis Education Recruitment have produced two series of one-hour webinars to help teachers and other autism professionals learn the tools and strategies they need to support children with autism effectively. Each series consists of six free webinars. Education is a fundamental part of every child’s life, but far too many children with autism are not getting the education they need. With the right support, every child has the opportunity to succeed. Parents and young people agree that knowledge of autism, more than anything else, helps children’s needs to be met. Watch the videos here.