Choice Support share their work supporting experts by experience working with CQC. Read about their work here:
People with learning disabilities (LD) face many health inequalities. They are 54 times more likely to die before the age of 50 than the general population, partly because they receive inadequate care. This stems from professionals not knowing how to support or communicate with them, and it’s an issue across the board from primary to secondary care. The result is unnecessary or prolonged hospital stays – and in some cases death.
“The single most important challenge faced by people with learning disabilities is communication. [Early prevention] can be as simple as observing how someone is walking when you take them to the cinema.”
The NHS outcomes framework lists the reduction of mortality rates for people with learning disabilities as a priority, but to date little action has been taken systematically to address current rates. That is why, with the help of our nurses and staff, we at social care organisation Turning Point developed a health toolkit in the form of easy-to-follow guidance available though our website.
Launched last year, this is now being adopted across our organisation and by other social care providers including Dimensions, Brandon Trust and Affinity Trust who have added it to their training programmes.
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Genomics England are looking for autistic adults and children with mild, moderate or severe learning disability and autism to take part in a large scale study looking into the genetics of a range of rare conditions. The study aims to collect and compare genomes from 100 families in London and the South East affected by autism and learning disability as part of the 100,000 Genomes Project.
The project aims to improve future diagnosis and treatment for a range of conditions and by the time it finishes, Genomics England plan to have setup a personalised genome-based treatment service on the NHS.
Autistic people that take part in the study may get results on their individual genome early on, whilst some may receive results years later as researchers learn more about how to use genome sequence information. Families can choose which results they wish to receive about their health.
Parents will be asked to read and complete a form giving their child’s permission to take part. Individuals taking part will need to give blood samples (up to three tablespoons), or other samples such as saliva. This specific part of the study has been designed for families with autism and learning disability and will therefore be sensitive to the needs of the participants. As with any study, those involved can choose to opt out at any time.
To read more about the study, Genomics England have created an information pack about the wider project.
To register an interest, contact the Bio Resource team at the South London and Maudsley NHS Trust via email: firstname.lastname@example.org or on freephone: 0800 9951 999 or 020 7848 5381