MacIntyre was established in 1966 by Kenneth Newton Wright, the parent of a disabled child. It has grown to become a leading national charity, highly respected and committed to setting standards and increasing choice. MacIntyre provides learning, support and care for more than 1,200 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Our diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.
We know that too many people with a learning disability are dying too young, NHS’s LeDeR (The Learning Disability Mortality Review) reports show that people with a learning disability are dying on average 25 years younger than the general population. Health inequalities for people with a learning disability are visible throughout our communities and riddled within our society, backed now by evidence and research. Recommendations have been made about the action that needs to be taken to reduce the gap and to stop preventable deaths. It requires all of us to take notice, and more importantly to take action. Are you ready to play your part?
One example of health inequalities is amongst the research that links the prevalence of developing dementia for people with a learning disability. Our collective challenge is to ensure that a person’s dementia is detected and an accurate and timely diagnosis is given. However, dementia is less likely to be detected in the early stages for people with a learning disability due to ‘diagnostic overshadowing’, meaning that a diagnosis is either given much later down the pathway, or even not at all.
MacIntyre have recently employed the UK’s first Learning Disabilities Admiral Nurse in a jointly funded project in collaboration with Dementia UK. We are aware that the way to overcome diagnostic overshadowing and to ensure a timely diagnosis of any health condition is to have a baseline health assessment, to identify what is normal for that person. We then need to regularly monitor and record specifically looking at changes to a person’s health needs (which at times can be subtle) and rule out the possibility of other causes or health conditions. This recording needs to be well documented and written records accurately kept, without archiving important information; this will ensure that all the necessary information is recorded, patterns can be spotted and reported on, and as a result an informed diagnosis can be made as early as possible.
Within MacIntyre, we use The NHS’s Anticipatory Care Calendar (Health Calendar) which provides an innovative approach to assessing health on a daily basis and is designed to alert social care staff to changes noticed in a person’s health, and provides clear directions about accessing care. We have taken a ‘whole organisational approach’ to successfully empower our social care staff to develop a high standard of health record keeping, monitor health changes and ensuring people access NHS Screening Programmes and Primary Care services.
VODG’s Tackling Health Inequalities report tells us that improving how we support people with their health needs is just one factor in delivering better health outcomes. Health inequalities result from the complex interaction of the social and economic inequalities experienced by disabled people. Good healthcare can contribute to an estimated third of the improvement in people’s life expectancy. The remaining two-thirds has been attributed to activities aimed at: changing lifestyle behaviours, such as diet and exercise, tackling the social and economic injustices, such as unemployment and poverty, that lead to health inequalities.
Our time is up for discussing, raising awareness and talking. The research is out there, the stats are uncomfortable to read but the recommendations are clear. We all need to work together. We all need to take responsibility, accountability and action. That time is now.
MacIntyre tweet regularly via @SarahOrms @DementiaLD and @HealthLD