The Keys to Life Expert Group – Apply Now!
Remembering Stephen Armstrong
Created on 12 August 2015
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.
Keys To Life Update
Created on 03 August 2015
The Scottish Government has published its priorities for the next couple of years in the Keys to Life. They say that they can’t do everything so best to focus on 4 things that they can do really well.
This document outlines the implementation framework for delivering The Keys to Life ~ Scotland’s Learning Disability Strategy. It sets out our vision, expected outcomes and highlights key themes to focus delivery during 2015/17.
This approach has been welcomed by lots of important groups but some others have said to us that it misses out important priorities about having enough money to live on and getting the right support. The Scottish Government says it reflects the key messages they have had from people with learning disabilities, particularly the 14 members of the expert group of people who have learning disabilities about what is most important to them in implementing The Keys to Life recommendations.
The goal that the Scottish Government have picked to start with are:
First is a having A Healthy Life.
Lots of things make us healthy. Eating good food, taking exercise, having a good place to stay and friends and family all help us to be healthy.
Three things that they will do to help with this are
1. Make sure that information about people with learning disabilities is collected.
2. Support more physical health projects that work well.
3. Do more work to help parents with a learning disability.
Second is having Choice and control.
Many people with learning disabilities have told us that they don’t always get treated well. They can be hurt. We want to make sure people with learning disabilities are treated with respect. We want to make sure people with learning disabilities are not forgotten or hurt or abused. We want to make sure people with learning disabilities are not treated in an unkind way.
Things they will do to help in this area are
1. Do more work to stop Hate Crime.
2. Make sure information is collected about people with learning disabilities who have suffered Hate Crime.
3. Do more work to stop bullying.
4. Work with advocacy partners to make sure the voices of people with learning disabilities are heard.
Third is Independence.
Lots of people with learning disabilities have told us that it is hard to go places and do the same things as other people. It can be difficult to understand information.
Transport to places can be difficult. More training is needed to help support people with learning disabilities. We want to make sure people with learning disabilities can access the things they want to.
Things they will do to help in this area are
1. Work with partners in transport to improve accessible transport.
2. More training for health and social care staff to help them develop their skills.
3. Support access to music, drama, dance and art for people with learning disabilities.
4. Give support to plans for people with complex needs who live far away.
5. Work to support the personal outcomes of people with learning disabilities.
Fourth is being an active citizen.
Being able to take part in life is really important for everyone. People with learning disabilities sometimes can’t take part. For example, getting a job can be hard or finding friends isn’t always easy.
Moving from one thing to another can be tough, like leaving school and going to college. We want to make sure people with learning disabilities can take part in everything they want to.
Things they will do to help in this area are:
1. Help to find more jobs for people with learning disabilities.
2. Support new ideas to help people with learning disabilities connect with people in their community.
3. Look at the strengths of individuals with learning disabilities. We will look to see what makes people strong and what works for them. This includes Local Area Co-ordination and day opportunities.
Debate on the Keys to Life in the Scottish Parliament
Created on 26 September 2013
The Scottish Government’s new strategy the Keys To Life was debate in the Scottish Parliament on Tuesday 24th September. This was a long debate from 2.30 to 5.00pm. This meant that lots of MSPs got to speak and each got time to develop their points.
Summary: The Scottish Government was proud of its new strategy and felt that it would be an opportunity to improve things for people with learning disabilities. They knew there is still a lot of work to be done but it is a plan to build on the progress that has been achieved so far.
No one who spoke was opposed to the new strategy. Some concerns were raised – would local authorities be able to deliver, what about the charges that people had to pay, what about the cuts in college places, concern about the disproportionate effect that the cuts had on people with learning disabilities, the failure to deliver personal plans to everyone and even the lack of use of modern apprenticeships to support people into work.
Many of the MSPs spoke from a personal experience of people with learning disabilities and their families, others had worked with people with learning disabilities in a professional capacity before becoming an MSP and others knew people in their communities. This shows a real connection between our politicians and people with learning disabilities. There may be some differences in how to take things forward but we can say there is no “indifference” amongst this group of MSPs.
Many of the issues that the Learning Disability Alliance Scotland have been concerned about were raised and a number of MSPs were able to use our briefing in the debate.
You can read on to have the summary of what some of the main speakers said. Or you can click here to read the full report on our website. You can listen to that live or download it in audio to play in your car or on your MP3 player by clicking here.
Michael Matheson opened the debate for the Government. He said
- Human rights are at the heart of the keys to life strategy.
- the fact that people with a learning disability can still die 20 years earlier than the general population is simply unacceptable.
- the Scottish learning disabilities observatory will provide evidence and data to improve health
- The Care Inspectorate and Healthcare Improvement Scotland are to ensure that strategic commissioning is examined as part of their overall inspection of services for people with learning disabilities
- We need to challenge our local authorities to meet the aspirations that are set out in the 2013 SDS act and the strategy
Neil Bibby responded for the Labour Party
- we need to ensure that we are working with people rather than talking at them.
- need for a consistent approach to care charges across the country that places the needs of people with a disability or learning disability at its centre
- there are significantly fewer college courses for people with learning disabilities than there were just a few years ago
- it is essential that the Scottish Government uses its powers to act to negate the bedroom tax.
Mary Scanlon came in for the Conservatives
- By 2010-11, only one in 15 adults with learning disabilities are employed and this could be focused on, prioritised and improved.
- More people should get life plans
- The Length of time taken for guardianship to be approved should be reduced
Bod Doris spoke about day centres amongst other things
- People should have been consulted – nothing about us, without us
- There should be a 2 year moratorium on the closure of Glasgow Day Centres.
Jackie Baillie concluded for the opposition.
- Not enough consultation and involvement with people with learning disabilities in producing the actual strategy
- The government needs to monitor the strategy to make sure local councils are meeting their responsibilities.
- There were 4 main challenges to be overcome – welfare cuts, college cuts, the gap in employment and social care charges
Michael Matheson summed up
- Personally sceptical about strategies and determined to make sure it was implemented effectively.
- Wanted to emphasise the government was treating employment issues seriously
- They would build health improvement into the structure of hospitals and GPs work
- They will ensure those with a learning disability in our society are treated with fairness, respect and equality
Bring Them Home!
Created on 18 September 2013
One of the important recommendations in the Keys to Life calls for work to be done in bringing people who have placements outwith Scotland back to services here.
Many local authorities place people with complex needs in specialist units south of the border. Over recent years, some work has helped people move to local placements.
But we think it is important not to forget NHS placements south of the border too.
At Northgate Hospital, near Morpeth in Northumberland there are a group of long stay residents who been stuck there for years. Eleven people ranging in age from the early 20s up to their late 40s all come from Scotland but are stuck miles away from family and familiar places.
The Keys To Life
Created on 17 July 2013
The Keys To Life is the Scottish Government’s new strategy for improving the quality of life for people with learning disabilities.
One of the key areas in the document is the Health of people with a learning disability.
Life expectancy for people with learning disabilities is much worse than that of the general population and the strategy is determined to change this over the next ten years. Over 40% of the recommendations are aimed at improving health.
A new Scottish Learning Disabilities Observatory will be set up to keep an eye on what is happening in hospitals and doctors’ surgeries to people with learning disabilities. NHS Boards are given specific responsibilities to make sure there is better care for particular conditions such as epilepsy and more general duties to ensure a dedicated primary care liaison resource in each area. Better cooperation will be encouraged between local authorities and NHS staff to make sure no one slips out of the net when they go into or leave hospital.
There will be a new register of people with a learning disability when their NHS number is used to identify people when they use either social work or health services.
If the work and cooperation outlined can help increase the length of people’s lives, this will be worth it alone.
But the Keys To Life has wider ambitions. The strategy touches on almost all aspects of the lives of people with learning disabilities. At times, it reads like a good practice manual. Want to know about our views on guardianship – go to page 84. Want to know what we think on housing adaptations – go to page 61.
Many organisations get name checked in the main documents and others get listed in specific recommendations. Camphill Scotland and Equal Futures get 1 each, PAMIS and Enable Scotland get 2 each and the Scottish Consortium for Learning Disability get 7!
This is part of the style of the Keys To Life, there is clear responsibility in almost all the recommendations about what will be achieved and how they will make sure it happens.
Some might say that the document is weakest on the key question that faces people with learning disabilities –that of cuts in spending and welfare reform. Over the next few years, the Centre for Welfare Reform estimate that the 2% of the population with severe disabilities will face 15% of the overall cuts. Overall they will see an average real terms cut in income or support of £8,832 per person since 2008.
We think that is too strong. The Scottish Government cannot do everything and right at the start of the Keys of Life it sets out that the new strategy should be based on a Human Rights approach. People with learning disabilities are part of the wider community and share its challenges with everyone else.
Of course, people with learning disabilities do have a range of special needs that need to be respected. We look forward to implementation of the very first recommendation – a requirement on all local authorities in Scotland to carry out Equality Impact Assessments on their policies for supporting people with learning disabilities to make sure that the right of people with learning disabilities to dignity, respect and equality are upheld.