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Getting it Right
Secondary Health Care for People with a Learning
Disability
A history of Mencap’s work and experience in this area
1999 Guide to Health Services in Wales
2001- 2003 Longest Waiting List
2003 – 2006 Treat Me Right!
2005 ‘Bridging the Gap’ DRC Inquiry into Primary Health Services for people with a learning disability and mental ill health
2006 HiW – Inquiry into Secondary Health Care
2007- 2009 Death by Indifference
2008 EquIP Cymru Training2009 NHS Equality and Human Rights Board
Getting it Right
Getting it Right-Some Background InformationPeople with a learning disability are morelikely to: Have additional health conditions (such
as epilepsy or diabetes) Have heart conditions Experience Mental ill health in their lives Have poorer diets and access to leisure
facilities
Getting it Right
“They don’t talk to me as an adult, they just look at my sister and speak to her”
Getting it Right-Involvement of Parents/CarersOften, parents and carers of people with a
learning disability will know a great deal about their health
Even more often so, they will not be included in deciding treatment options
In some cases however, the hospital staff can over-rely
on the carer for tasks paid staff should be doing
Getting it Right
“That’s just how they are sometimes…”
Getting it Right-Communication
Many people with a learning disability will have significant communication barriers
This is often be a green-light for medical professionals to ignore them or make assumptions about their capacity to be involved
Getting it Right-Barriers to good healthcare in Hospitals
Fear of going into hospitals
Lack of choice
Long waiting times
Talking to parent/carer rather than patient
Getting it Right
“ We told the nurse that Andrew didn’t like waiting in small rooms, when his
behaviour became agitated they injected him to
calm him down, and he had to be sent
home”
Getting it Right-Being People Centred
Everyone has different support needs
Simple adjustments can make accessing healthcare more accessible for people
with a learning disability
Getting it Right
“When it comes to my healthcare, I should be involved in it as much as possible”
Getting it Right-Choice, Rights and ControlAs far as is reasonably possible, people with a learning disability should be involved in all stages of their care.
From our work with the Royal College of Psychiatrists, people with a learning disability have outlined Choices, Rights and Control as the most important things to them in healthcare
Getting it Right
“The doctor came up and spoke to us…he was
suggesting that is wasn’t worth trying to
save our daughter”
Getting it Right-Staff Training
Staff in hospitals can make assumptions about the needs and quality of life of
people with a learning disability
A greater depth of knowledge is needed about learning disability
Getting it Right-SolutionsHealth Passports
Health Charter
Comprehensive Training for Staff
Recognition of Diagnostic Overshadowing
Conclusions
Getting it Right-Further Information
Wales Learning Disability Helpline:0808 808 1111
029 2076 8226
