Friday, 13 March 2015

What people with disabilities and health problems have faced with the NHS.

I raised this awareness back in 2007 it's now 2015 not a lot of lessons have been learned, I am not pleased to know that there's still a lot vulnerable  having died or and dieing unnecessary. Just remember our lives matter as much as yours!

When I was 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 making my gums my soft. They did trust me to keep the brace clean. They thought 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 understands that people with disabilities can get forgotten about. Health staffs 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 vulnerable people who have faced real bad Health care experiences.
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.

 Most people are 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 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. ‘This told some horrific true stories of the six people with learning disabilities that died in the hands of professionals.

Martian died in hospital on the 21st December 2005, he hadn't been given any food for 26 days. Martian 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 easier 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, its 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 and staffs 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.

http://www.mirror.co.uk/news/uk-news/andrew-hutchinson-vile-nurse-admits-5428651?ICID=FB_mirror_main

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 says 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 Martian’s story. We hope you have a learned a lot of 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@gmail.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.


https://www.mencap.org.uk/sites/default/files/documents/2008-04/hospitalcommunicationbook.pdf
 https://www.mencap.org.uk/sites/default/files/documents/74%20Deaths%20and%20counting%20Easy%20Read%20summary.pdf
http://www.communitycare.co.uk/2015/03/13/southern-health-set-lose-5m-learning-disability-contract-significant-concern-care/
Ok sorry this isn't disabilities and health problems but it still about someone who wasn't treat good.http://www.mirror.co.uk/news/uk-news/nigel-farage-slams-nhs-claiming-5331028 
https://www.facebook.com/autisable
http://www.bbc.co.uk/news/uk-england-essex-31848354
http://www.mirror.co.uk/news/uk-news/hospital-makes-ae-patients-carry-5334832?ICID=FB_mirror_main
http://www.heysigmund.com/anxiety-in-kids/
http://www.bild.org.uk/easy-read/easy-read-information/health-easy-read-links/
http://rt.com/uk/240029-nhs-privatisation-agreement-largest/
http://www.theguardian.com/society/2014/aug/27/self-harm-suicide-mental-health-patients-nhs-rises-56-per-cent
https://www.facebook.com/groups/learningdisabilitynurse/?fref=nf
http://www.mirror.co.uk/news/uk-news/ros-wynne-jones-sheila-hounded-death-5353202
http://www.mirror.co.uk/news/uk-news/jack-norfolk-brave-child-star-5359677?ICID=FB_mirror_main
http://www.independent.co.uk/life-style/health-and-families/health-news/food-bank-users-at-risk-of-developing-nutritional-problems-warns-expert-10118543.html
http://ow.ly/KxLfo
Lehttp://www.mirror.co.uk/news/real-life-stories/rarest-boy-world-aidan-still-5374042arning disabilities' experience with the NHS.
https://community.scope.org.uk/?_ga=1.174712804.712918022.1426936692
http://mobile.news.com.au/lifestyle/health/reddit-users-send-an-image-of-a-grieving-doctor-in-california-viral/story-fneuz9ev-1227272335855
http://www.mirror.co.uk/news/real-life-stories/loving-mother-forced-flee-unborn-5378815?ICID=FB_mirror_main
http://www.scope.org.uk/community?utm_campaign=community_general_ads_1&utm_source=facebook_ad&utm_medium=cpc

http://www.westernjournalism.com/nhs-warns-end-free-healthcare-coming/#chd8OUZrJRlQlEEj.01
NHS Fhttp://www.mirror.co.uk/news/uk-news/widower-aged-86-died-after-5382439?ICID=FB
_mirror_main
http://www.mirror.co.uk/news/uk-news/mum-to-be-fears-babys-health-after-5383120?ICID=FB_mirror_main
https://www.facebook.com/photo.php?fbid=10155347502040635&set=pcb.956471261032662&type=1&relevant_count=1
http://www.communitycare.co.uk/2014/08/06/call-rethink-flawed-nhs-plan-cut-inappropriate-learning-disability-placements/
http://meditation.com/
http://www.thelearningdisabilitieself.net/2015/03/09/anxiety-in-young-people-with-learning-disabilities-prevalence-and-assessment/?utm_source=Learning+Disabilities+Elf&utm_campaign=51bb77de4a-LD_Elf_25mar2015&utm_medium=email&utm_term=0_560647ba9e-51bb77de4a-107251097 AILS TO ACCOMMODATE PATIENTS WITH A LEARNING DISABILITY IN
http://www.itv.com/news/wales/story/2015-03-25/grandad-accused-of-murder-of-six-week-old-baby/
https://books.google.ch/books?id=LkScBQAAQBAJ&pg=PA27&lpg=PA27&dq=how+to+heal+from+emotional+abuse+from+parents&source=bl&ots=OXwJnq_zPi&sig=MmyMimJy5u3RrvQ1izF5qqdPxbw&hl=en&sa=X&ei=yl0TVa_oDo22aYvdgsAN&ved=0CDsQ6AEwBji-AQ#v=onepage&q=how%20to%20heal%20from%20emotional%20abuse%20from%20parents&f=false
http://www.nhs.uk/choiceintheNHS/Yourchoices/mental-health/Pages/your-legal-right-to-choice.aspx
http://www.theguardian.com/science/2015/mar/26/can-parental-training-improve-the-course-of-autism
http://www.rcgp.org.uk/learningdisabilities/~/media/Files/CIRC/CIRC-76-80/CIRCA%20StepbyStepGuideforPracticesOctober%2010.ashx
http://blacktrianglecampaign.org/2012/10/04/10600-sick-disabled-people-died-last-year-within-six-weeks-of-their-claim-ending/
http://www.expressandstar.com/news/polls/2015/04/03/poll-does-income-level-play-a-part-when-it-comes-to-healthy-eating/



 SINGLE SEX WARDS.

On the 12th December 2007, I read a Mencap report on the NHS not having people with learning disabilities sleeping single sex wards in the hospital. At the time there was a debate between safety and privately, which a balance between the two. We all need to be safe but also need to be private, mainly when it comes down to washing, dressing and going to the toilet for eg;. I had a meeting with Debra Edwards who was the Patient Experience leader at that time. I told her that there needs to be a balance between the two.

Back in 1993, I had an operation on my throat because I had a mild cancer lump. At the time I had been in hospital twice at the Eye, Ear, Norse and throat hospital in Shrewsbury.
The first time I was in hospital, I was in a mixed men and womens' ward, which wasn't private and I hated it.

My Mother complained about it.
When I had to go in to hospital the second time I had a private room with a alarm so I could when I wanted to go to the toilet because I had a fall the first time I was in that hospital.

Like everyone I hate hospitals but the second time I was in that hospital was better than the first. That's balanced between been private and safe.


I never got to know what has got worse or better over this report written in 2007 because it got the stage that the hospital meetings were clashing with the Accessible information meetings.

6th December 2007

A major report published today has revealed that learning disability services are failing to accommodate inpatients with a learning disability in single sex wards.

'Count me in 2007: The 2007 national census of inpatients in mental health and learning disability services in England and Wales' found that 60% of inpatients in NHS and independent learning disability hospitals and facilities were not in a single ward.

The census is a joint initiative between the Health Care Act Commission, the Care Services Improvement Partner and the National Institute for Mental Health in England.

David Congon, Mencap's Head of campaigns policy at said "It's disgraceful that the majority of patients in learning disability services were not in single sex wards.

"By treating patients with a learning disability in mixed sex wards the NHS and independent health care providers are failing to provide a service that maintains their privacy and dignity at a time when they are most vulnerable. WWW.healthcommission.org.uk 
/justice4thomas.wordpress.com/2015/03/12/abuse-in-care/


Back in 1991, my favourite singer Freddie Mercury from Queen died of a Sexual disease called Aids.

I know he didn't have learning disabilities but there's still isn't enough awareness about Sexual diseases in people with learning disabilities.

I am sure Freddie would have liked people with LD and Health problems to get a lot of support for our Sexual Health as much as people without.

Whether we have LD or not we all have feelings.

Freddie was just as ill as people with Ld would be.

There again what people need to understand due to our life Health problems. Other illnesses everyone can have, people with LD can be twice as ill as people without LD. It could make us die quicker because of our LD and the Health problems we may have already. 
There needs to be more education on Sexual health that's accessible in schools and colleges.

It can be hard enough teaching young people as it is why education on health is important but people with learning disabilities are slower learners so many of us may need more support to learn.

For eg; some people may not understand why we are advised to use condoms and may even have problems putting them on, mainly if we have problems with our hands. In my case with problems griping, without been personal I am lucky that I have had partners who knew how to put them on. 

There still needs to be more education on choices, pregnancy, conception, support and etc.

In March 2009, Jade Goody died of cervical cancer; this is just an example of many young people who have died of cancer.

I want to raise awareness of cervical cancer.

We all know its right to have Smears to get ourselves checked out.

Many women could be scared of having Swears if they have suffered rape and Sexual abuse at any time during our lives. This can have the same big affects on our lives as much females  without LD as with LD.

May be counselling should be advised to females if they fear swears due to the bad experiences we may have had. Most of us may feel as if we can't go through smears so there needs be support for us to cope with our fears.

Information should be accessible for all females’ not just females with learning disabilities mainly when we have been through rape and Sexual abuse at any time during our lives, this can put a big affect on any female's life, body and mind. We understand males have suffered sexual abuse and rape as well, which we must raise awareness of these kind of things for males with and without LD. 
http://www.mirror.co.uk/3am/celebrity-news/six-years-gone-miss-you-5380657
There's still not enough awareness of people with learning disabilities who have cancer.http://www.jostrust.org.uk/videos/smear-test-film


I had cancer of the throat at the age of 23, even though I was very lucky it didn't spread to any other part of my body but even though the treatment knocked me about I was lucky to get better. Here's a person LD who didn't better from cancer but could if Health staff looked after better. I don't think they looked after her at all.

Emma who was written about in the Death Indifference report in 2007 had cancer. She died because she died unnecessary because she didn't respond to the treatment the doctor was giving her, due the fact she found it hard to communicate. May be there could have been a chance that Emma's cancer could have been cured.

There's still a 50/50 chance that people can pull through cancer.

It seemed as if the doctors couldn't be bothered with Emma because of her learning disabilities. The doctors needed to try a lot harder to save Emma.


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