When I was about 2 to 3 yrs old. A doctor fell asleep when he was assessing me. He was very old, perhaps his health wasn't very good either. He should have retried at that point.
When I was 13 yrs I had a brace for 2 yrs because my teeth kept on sticking out like Bugs Bunny, I used to get picked on in school because my teeth. The NHS would not let me have a brace at first because of the tablets I was taking for my fits. The tablets were were making my gums my soft. They did trust me to keep the brace clean. They though it would be dangerous for me to have a brace because of fits.When they finely put brace on me I coped better than what they thought. They did not think a person with a disability could cope with a brace. I was also very disappointed to find out that they would not operate on my teeth because I think my teeth have come forward during my adult years. Perhaps if they would have operated on my teeth, they may not have stuck out again.
When I was 23 yrs old, I was in the eye, ear, mouth and throat hospital in Shropshire, I had cancer of the throat. It was the morning after my operation at 6.00am when I fell over a pile of bed panes in the bathroom. All I remember was unbolting the door as I passed a nurse saying to me.
" Sara, your chin is bleeding,"
" Sorry, I didn't know, nothing hurts, I just feel dizzy."
The nurse walked me up to my bed, she left with some tissues moping my chin until 12.30pm. I was so fed up moping my chin hours on end. My Mother came in at 12.00pm wondering why I was left such a long time moping my chin. My Mother went mad. It was 12.30pm when the doctors finely stitched my chin up.
I have just changed my doctors because I didn't like the prescription system. Talking the prescription to the doctors and waiting two days until the doctor will sign it. I like to get the job done in one.This system sounds better now but they are still waiting for my medication history off my last doctors.
I also didn't like the way my old doctors communicated with me, I didn't like their tones of voices and I felt that they were very rude.
Our Shout Mencap understand that people with disabilities can get forgotten about. Health staff need to be trained by people disabilities to be able to understand people with disabilities and learn how to look after them. You must use easy words, easy pictures, there should be more learning disability nurses and doctors about. The government should pay more health care. Disabled people and old people get left behind when been in hospital, there seems to be very little money to employ Health staff. The problem in this country is that the money seems to be spent on the least important things. No wonder there has been so many unnecessary deaths like the Death indifference for eg; Please go on the Mencap website, or just put Mencap in your search engine which will tell you about the six shocking deaths of young people with Learning Disabilities.
INTRODUCTION. Real lives, real bad Health care stories of people with learning disabilities.
We have had good and bad experiences, as have most people. However the bad outweighed the good. I do this work with a Self - Advocacy group called Our Shout supported by Mencap, which is a group of people with learning disabilities. In order to respect the group of people I work with, it's only fair to keep their stories private even though my story is on my website. What will say is what we have been through has neglect has caused us more harm than the illnesses we have gone to hospital for. Our stories are not only about what we have through in the hospitals but what have through in the doctors too. We are hard to see that what we have been doesn't happen to other people with learning disabilities. This is what we have experienced.
Not enough clear language.
Lack of respect.
People talking over us.
People ignoring us and talking to other people about us.
No real understanding of our needs.
VALUING PEOPLE NOW!
Making it happen for everyone. Valuing People Now! is a three year plan for people with a learning disability, families and carers by our say so.
Change needs to happen to everyone with learning disabilities.
'HEALTH CARE FOR ALL.' is a report that calls out a hard hitting valuable message. It sets out an undeniable evidence that people with learning disabilities have greater needs for Health care more so than other people, yet have worse access to care we need resulting poorer health.
SOME OF THE NEXT STEPS.
One of the key points is better health.
Making that mainstream NHS providers give full and equal access to good quality health care.
Most people with learning disabilities have poorer health than other people. A lot of us die young not so much due our disabilities, health problems and illnesses but neglect.
There's a clear evidence that our access to Health care is often poor with common experiences of neglect, lack of dignity and safety.
We believe this is because of institutional discrimination.
We are likely to die at a younger age than other people.
There's clear evidence that we have poor access to Health care, experiences of neglect, lack of dignity and safety.
We believe this is because of institutional discrimination.
Neglect and abuse of disabled people is absolutely unacceptable. The government is determined that lessons are learned and action is taken to better Health care for people with learning disabilities.
MENCAP'S DEATH INDIFFERENCE REPORT.
Mencap had heard about many stories of six people with learning disabilities who died because they didn't have the Health care they needed. In response to this, Mencap published a report called ` DEATH INDIFFERENCE.'which told some horrific true stories of the six people with learning disabilities who died in the hands of professionals.
Martain died in hospital on the 21st December 2005, he hadn't been given any food for 26 days. Martain had a severe learning disability and no speech. He was 43 years old.
Make sure you have the right attitude! in whatever job you do mainly when it comes to learning disability and health because this is about people's lives. Changing small things like making language more easy for people with learning disabilities to understand. Educate people you are working with including your managers to how important Health care is to people with learning disabilities. Lead by eg;
Make sure that you learn and understand about the Mental Capacity Act, It's law. You must apply it to your work.Remember you must assume everyone has capacity to make a decision until it can be proved otherwise.
Everyone who gives treatment should understand laws about consent. If you understand laws better, people with learning disabilities would get help that's in our best interest.
Remember people with learning disabilities need more time to fully understand something!
What might you do different need time to make sure that people with learning disabilities are treated to our needs and fully understand what's happening to us?
INSTITUTIONAL DISCRIMINATION HAPPENS WHEN SERVICES.
Do not value people equally.
Do not change the way services are delivered to meet all people's needs.
This has happened for far too long ans staff get used to working the same way and they don't notice that it's wrong.
Several reports say that this leads to abuse, undiagnosed illness, Mental health problems, Mental illnesses, Health problems, disabilities, Health conditions and unavoidable death.
Most Health care professionals tend to think people with learning disabilities don't have a good life. This means that they don't always do what they could do to save them. You should think that a person's life isn't worth saving just because they have learning disabilities.
Actively encourage and insist on training to help you understand learning disability. This could help prevent the unnecessary death of someone you are treating.
Attention should be paid to people with complex needs on admission to hospital making sure family carers are not doing the role of the Health professionals.
However it is crucial that you listen to family carers as well as people with learning disabilities. They know best but people with learning disabilities know how we feel.
Better partnership working with learning disability nurses to educate staff about learning disability issues.
The Disability Equality Duty became law in December 2006 and said companies like the NHS must take people with disabilities into account when we provide services.
consulting with Our Shout and other learning disability group leaders about planning and delivery of services as well as staff training would ensure that it's being done.
Talk to people with learning disabilities about producing information in accessible formats.
The Disability Discrimination Act say you need to be doing this by using different ways of using communication.
pictures
photos
gesture and signing
makaton
Talking mats
Software packages like photo symbols
Visual aids
use specialist speech and language Therapists
Our lives are just as important as yours!
Thank you for reading our presentations, mine and Martain's story. We hope you have a learned a lot off us. We are very sorry that it was sad but things need to get better for the health and safety of all people. If you have any questions, comments or anything, or if you want to learn more about learning disabilities you are more than welcome to email me on sarajgorman@googlemail.com. I hope there are more things on this website for you to learn from than just this presentation. once again thank you, we hope we have been a big help to you and bye.
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