Getting it Right Secondary Health Care for People with a Learning Disability

A history of Mencaps work and experience in this area

1999 Guide to Health Services in Wales Longest Waiting List 2003 – 2006 Treat Me Right! 2005Bridging the Gap DRC Inquiry into Primary Health Services for people with a learning disability and mental ill health 2006HiW – Inquiry into Secondary Health Care Death by Indifference 2008EquIP Cymru Training 2009 NHS Equality and Human Rights Board Getting it Right

Getting it Right- Some Background Information People with a learning disability are more likely 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 dont talk to me as an adult, they just look at my sister and speak to her

Getting it Right- Involvement of Parents/Carers Often, 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 Thats 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 didnt 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 Control As 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 wasnt 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- Solutions Health Passports Health Charter Comprehensive Training for Staff Recognition of Diagnostic Overshadowing

Conclusions

Getting it Right- Further Information Wales Learning Disability Helpline: