The facts are shocking. Every year, 1200 people with a learning disability die avoidably in hospital care.
I blogged this morning on the disgraceful state of PIP and ESA assessments, many suffered by those with learning disability. This is another aspect of how people with learning disability are not listened to, are not enabled, and are sidelined in assessments. This video gives you a good idea of the issues:
I am on the Board of the Fragile X Society. Fragile X, a genetic condition, is the leading inherited cause of learning disability. Thousands of people with Fragile X will have had the experiences show in this video.
It is very easy to make modifications. Allow extra time for appointments. Use simple language. Break explanations down into smaller, understandable sentences. Allow time for mental processing. It’s what people with learning disabilities are asking for.
The Treat Me Well report is well worth a read. Mencap’s research showed (p.25)
- 3 out of 4 (75%) said that hospital staff explaining things to
them in a way that is easy to understand would improve
their experience of going to hospital.
- Over half (55%) told us that hospital staff supporting them
to have their say in appointments would improve their
- The same number (55%) told us that having more time in
appointments would improve their experience.
The report explains that
In 2016, NHS England developed the Accessible Information
Standard, which put a duty on all health and social care
organisations to ensure their written and verbal
communications were accessible to disabled people, including
people with a learning disability. …a recent review of the standard
clearly showed that organisations were struggling to understand
and implement it, and the people with a learning disability we
spoke to were still not noticing any impact. There is a great need
for training and resources to make the Accessible Information
Standard work successfully across the NHS.
Those with learning disabilities should be the decision-makers in the care they receive, as much as possible. Not communicating in a way that is understandable does not allow them to be part of determining their medical treatment. And, as research shows, has led to thousands of avoidable deaths in recent years.
Lib Dems have a good track record on mental health. We have some excellent policy on social welfare, including scrapping benefit sanctions and the housing benefit cap. Let’s beef up our policy on properly supporting those with learning disability.
* Kirsten Johnson is an Oxfordshire County Councillor and Day Editor for Lib Dem Voice. She stood as the Parliamentary Candidate for Oxford East in the 2017 General Election.