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|04 Dec 2015|
Forth Valley Stronger Together
People with learning disabilities die on average 20 years earlier than the people that live around them irrespective of wealth, earning or geographical location.
Some of this is due to nearly 7 out of every 10 people with learning disabilities having other health conditions. The link of Downs Syndrome to early onset dementia and heart problems is well known. Less well known is the occurence of a physical disability, mental health conditions or long term illnesses in other people with learning disabilities.
Some of the things that would make people healthier are well known. More exercise and healthy diets. Easy to say but much harder to do.
Recent research into the Scottish Government’s “Walk Well” programme found that there was no lasting change for people with learning disabilities through using it. This was a 12 week programme that introduced people to walking in a structured way but when people with learning disabilities finished the course, they rarely had support workers in place who had the time to help them continue the walking programme.
People with learning disabilities have spoken about how they find “good food” to be more expensive and when they do try and buy cheaper natural ingredients it is hard for them to prepare cooked meals using these.
But health care is about much more than this, it is about the help from doctors, hospitals and NHS ‘24. In our last newsletter we wrote about Stephen Armstrong’s treatment in hospital. Many things went wrong for Stephen even though he had the support that people thought he needed.
Many people feel they have great treatment from the NHS. The nurses and doctors are nice and speak to them respectfully. There are health passports, both in booklet form and electronically. There are special nurses that are trained to help people with learning disabilities available all over Scotland.
But as Robert Burns once said, “facts are chiels that winna ding and downa be disputed.” Facts are stubborn. People with learning disabilities die earlier than the rest of the population, their health needs are often diagnosed late and many people have poor lifestyles.
So what’s going wrong? To be honest no one is really sure. We need you to tell us what is right and wrong for you or the people you support. We will find out what is happening all over Scotland and put the answers together to help make better plans for the future.
The Learning Disability Alliance Scotland has produced a new guide to what Health and Social Care Integration might mean for people with learning disabilities. It uses a combination of Easy Read information and photo stories including the "Carry On" films to help explain what the benefits of working together are. This will still take some time to work through but it is a fun way of exploring a challenging subject.
However this is not a study of what is actually happening on the ground with local authority and health board plans. Further research on this will be available at a later date.
Does the current way of producing poverty figures underestimates by at least half the number of disabled people and their families who live in poverty and possible by many more?
Currently Scottish Government figures say that 320,000 people who have a disabled person in their household are living in relative poverty. The real figure may be more than 600,000 with many of them having a learning disability.
Current figures understand poverty by setting a poverty line at 60% of average income for a two person family, then adjusting it for different types of family sizes such as single parents with two children or a single person. To get the number of disabled people in poverty, you simply count the number of disabled people in households below this line.
It seem to us that these figures are a serious underestimation because they fail to take account of the extra costs associated with disability. From additional laundry to special diets and extra travel costs, disabled people have to spend more to live the same type of lives as people without a disability. Further for those who rely on social care services, high charges make it worse.
A 2014 report for the Joseph Rowntree Foundation found a way of adjusting for this. They excluded “disability costs” benefits such as Disability Living Allowance and Personal Independence Payment from household income, as these are given to meet the extra costs of disability. Their research suggested the number of disabled people in poverty in England was double the official amount, about 2 million in total.
As a result disability could be one of the key indicators of poverty in Scotland and should be given the same attention in anti poverty work as child and pensioner poverty.
The Keys to Life has pledged to improve the health of people with learning disabilities by ensuring that all those who work in health care understand the health needs of people with learning disabilities, how these can differ from the general population and to respond appropriately.
Perhaps these words have never been truer than in the case of Stephen Armstrong of East Kilbride. In 2013, Stephen died from urinary sepsis less than 72 hours after going into hospital. There have been a range of reviews but they have left Stephen’s family unsatisfied and his sister, Katherine is now pushing for a Fatal Accident Inquiry.
Before he went into hospital Stephen enjoyed an active life. He received 24/7 care all of his life and had good health and was never overweight. He attended the gym twice a week, had been at the circus days before he became unwell, and had tickets for the wrestling the day he died.
But in hospital the evidence suggests that nursing and medical staff saw his learning disability first and as a person second. Stephen was in a wheelchair due to a spinal injury but Katherine believes hospital staff saw only a learning disabled man with a temperature who couldn't use his legs and who had a catheter and therefore did not prioritise his treatment.
If they had understood he had a spinal cord injury, it is likely medical staff would immediately start thinking about possible complications. Urinary sepsis is the most common cause of death after spinal injury and any infection would have been treated aggressively.
Stephen was admitted to hospital with a high temperature, drowsiness and possible pneumonia. But it was nearly 22 hours after his admission that he was given intravenous antibiotics and had his catheter changed. Key actions that could have made a real difference for Stephen
Yet Stephen had a health passport—his personal carer stayed with him in hospital—his sister was available for advice—there was a letter from the GP. All things that we are told will make a difference . Is what happened to Stephen “indirect discrimination”? Maybe a Fatal Accident Inquiry could help us all know what needs to be done to meet that Keys To Life pledge.
Our first article is about Disability Hate Crime. This month sees Police Scotland launch it first ever Tackling Hate Crime awareness month with each week featuring different types of hate crime. The first week is on Disability Hate Crime. Earlier this year, new figures showed that reported Disability Hate Crime has gone up by 270%. Read more here.
Our second article is about Poverty and Disabled People. The current way of calculating poverty focuses on income. We think it does not take enough account of disability related expenditure and this means that poverty among disabled people may be twice as much as the official figures suggest. Because this is a difficult subject there is a link to more detailed information at the bottom of the online article.
Our third article is about the treatment of Stephen Armstrong. Stephen died in hospital in circumstances that might not have occurred if hospital staff had had a better understanding of learning disability. This is a controversial subject that is may yet be subject to a Fatal Accident Inquiry. There are links to additional reports and newspaper reports at the bottom of the online article.
Finally there is a short note in the printed newsletter that we will be launching a national survey in the autumn of this year to find out the experience of people with learning disabilities and their families about the treatment they have had from the NHS. We want to find out what lies behind the numbers. You will be able to answer a short questionnaire, tell us your story, come to meetings to talk to other people about these and share ways of making things better.
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