Wednesday 26 May 2010

Learning disabilities' experince with the NHS.

NHS FAILS TO ACCOMMODATE PATIENTS WITH A LEARNING DISABILITY IN 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

Mencap's death Indifference report.

INTRODUCTION TO MENCAP'S DEATH INDIFFERENCE REPORT.


Mencap wrote a report called 'TREAT ME RIGHT.' IN 2004.

It said that people with learning disabilities have worse health than other people.

Mencap think it's because people with learning disabilities don't get the treatment and Health care that we need.

Sometimes this can mean people with learning disabilities can die at a younger than other people. Mencap thinks it's very bad and it shouldn't happen.


'TREAT ME RIGHT.' Report said important changes need to be made to better Health care and treatment. Not enough has changed.

Since Mencap wrote ' TREAT ME RIGHT' Mencap heard that six people with learning disabilities have died because they didn't receive the right Health care and treatment.

Not only do I agree with Mencap and 'TREAT ME RIGHT' I also believe from my own experience of Health care that they were neglected.

As shocking as it is, it doesn't surprising to me when I have had learning disabilities myself for just over 40yrs since the day I was born.

It tells me that not a lot has changed for people with learning disabilities.'Come on let's get better Health care for the future of learning disability'.

EMMA. Emma has a great sense of humour.

Emma loved pulling funny faces for a laugh.

Emma had wonderful smiles that lit up the room up.

Emma died of cancer in 2004 at the age of 26.

Emma had a severe learning disability that made it hard to let people know how she felt.

Doctors thought Emma didn't agree to have the treatment for her cancer, so they didn't do anything to save her.

Mencap wants to know.

If doctors would have treated Emma, would she still be alive?

Why didn't Emma receive the right treatment and Health care?

May be Emma tried to tell the doctors but she may have found it hard to make her understood, which has happened to me and many other people learning disabilities at many times.

Why wasn't Emma given anything for the pain?

Please read the Death Indifference report on WWW.mencap.org.uk or tap Mencap's Death Indifference report in the search engine.

MARTIN. Martin loved smiling, going out and listening to music.

Martin loved to get behind the wheel of a car.

Martin died in hospital, he hadn't had any food for 26 days.

He died on the 21st December 2005.

Martin had a severe learning disability without any speech.

Martin had a Stroke and Pheumia, which was an infection in his lungs.

Martin was put on a drip, living on water and sugar.

MARK. Mark was 30 yrs of age when he died.
8 and a half wks before hand he was admitted to hospital with a broken leg (femur).

He was clearly distressed and in pain. , but he had to wait 3 days for the pain team to see him. Mark died on 29th August 2003.

I believe that the Pain team must have been to blame leaving Mark in pain for 3 days. How many people in the world died of a broken leg not very many if any.

TED, Ted was 61 yrs of age when he died, he was dischanrged 3 after being admitted to hospital despite his condition having been assessed as 'concerning.'

He collapsed and died on 27th May 2004.

He had a severe learning disability and virtually no speech.

How can we explain Ted's unexplained death?

No one can explain how.

A hospice consultant recommended that 20 yr old Tom's pain was investigated by gastroenterologist over a year before he died.

No action was taken until it was far too late.

Tom's expression of pain wasn't listened to, he died 25th May 2004. He had profound and multiple learning disabilities.

WARREN, Warren was 30 when he died following perforation of the appendix. His Mother and Father repeatedly asked whether Warren had appendicitis or a blocked bowl when they saw the doctor.

They told them that he had a virus. Warren died on the 25th September 2004.

He had a severe learning disability and very little speech but couldn't make himself understood to his family.


Read more of this on Mencap's Death Indifference report website or search engine.


Mencap want to know.

Why didn't Martin have any food for 26 days?

Why didn't the hospital give Martin better Health care?

About this report.

Mencap wrote this report to educate and train people on learning disability and Health.

Mencap believe that people get treated unfairly in Health care services.

There's still a lot of discrimination against all races, which is wrong. Why should people stop living their lives to how they want whether they have a race or not?

People's needs aren't understood whether they have disabilities or not. People's need to be met whether they have disabilities or not. These things can happen for a long time before people know it's wrong.

People need to understand learning disability.


Mencap believes that!

People who make the decisions about Health care don't think people with learning disabilities' lives are important as theirs.

In 2006, the government said that people with learning disabilities don't always get treated equally to other people. Not many changes have been made since.

Health care professionals do not understand learning disability.

Staff aren't given enough educating or training to understand learning disability.If staff have wrong ideas about learning disability, no one tells them it's wrong.

The Disability Rights commission has found Health care professionals sometimes confuse the signs that show someone is ill when they have learning disabilities. This is diagnostic over shadowing.


Health care professions don't listen to families/ carers and they don't listen to people with learning disabilities.

People with learning disabilities don't always get our say or choices to our Health situations.

Our chooses should be supported.

It's seems that what Health staff and family/carers have control over people with learning disabilities live when they talk about our health, we need to learn how to speak for ourselves.

Even people who can't speak have another form of communication that people need to learn to understand, go along and learn to communicate in the way.

(How would you like not being understood?) Each each and everyone of us has a voice, thoughts and feelings just like you do.
Families/ carers notice if the people they care for are acting differently and can see if the person is upset or and in pain.

Only because we may find hard to make ourselves clear enough for you to understand us doesn't mean we don't feel anything.

If it's really hard to understand at least find out whether we are happy or sad, even if you can't do anything about it.

May be most us may be able to tell you the reasons why we feel like we feel. At least bare our reasons in mind if you can't help us.

In all cases Mencap looked at this report, to find out that most families/carers are ignored by Health professions knowing very well about the worries they have for the people they care for.

Families/carers should always be listened to so should people with learning disabilities main when we are in pain or whatever the situation could be.

Service providers need to learn how to balance the say of families/carer and the people with disabilities whatever the situation is.

Try to encourage the person who is supporting the person with learning disabilities to be more supportive than over protective.

Everyone who gives treatment should understand laws and consent. If they understood the laws better, people with a learning disability would get what we need and want.

Health professionals don't always see the lives of people with disabilities are just as important as everyone's.
Mencap thinks that Health staff don't think people with disabilities' lives are important to save and worth living.

The lives of people with learning disabilities should be important as much as everyone's. Health care professionals shouldn't really decide that a person's life isn't worth living just because they have learning disabilities.

What Mencap wants to happen.

Mencap wants the case reports to be looked at in an independent inquiry.

There are 6 stories about people with learning disabilities in the main report. These are called cases.
Mencap want all the 6 cases in the independent inquiry.

This means people who have not been involved in the cases will look at the cases altogether. They will try to find out the reasons behind the 6 deaths, what needs to change and what lessons need to be learned to stopped these things from happening again.

At the moment it takes too long for a complaint to be heard.
Families/carer are upset over the people who loved, looked and cared for who died.
Mencap's question why do families/carers have to wait for a complaint to be heard?

Why do people have to wait so long for a response?( Services need to find out what happened, why and how. Family/carers need clear information to their rights.

Mencap wants the Health care commission to have more money to do this job better.

We want it done easy, quick and accessible for people with learning disabilities to make complaints and to get the answers to the reason for these bad things happening.

Nothing can bring back the 6 people who died.

Their families want to know why the people who they loved died so early, when there might
have been better Heath care, they needed to be taken care of and better treatment for them.

Mencap has written this report because we want to stop people with a learning disability from dieing so early in life.

We need to train and educate Health care staff to give them the right Health care, look after them and give them the right treatment when being in hospital or anywhere they are but also for them to have equal lives with the right support.



Mencap's website is also linked to mine.

You could send me an email if you want to on sarajgorman@googlemail.com

Sunday 9 May 2010

UNDERSTANDING ANXENTYAND DEPRESSION.

Anxiety and depression can be linked to  learning disabilites.
Some people have anxiety, depression and epilespy, which can link together.
If people get stressed very easily stuffer Panic attacks it can bring epilespy but it doesn't affect everyone the same.
Change can be a big thing for a lot of people with Autism.
People can have these conditions whether they have disabilities or not. Health problems can link to  disabilities or be without disabilities.
Anxiety and depression is bad for enough anyone.
New things which is change whether it's good or bad can make people nervus. When some people get nervus they can have Panic attacks but Panic attacks can be brought by other things like for example; stress other reasons or no reason at all like depression.  
 Change can be a big thing for of people whether they are nervus about something or someone.
Whatever is going on in peoples' lives and minds some people can sleep for thinking all the while others sleep to all the while to avoid the sitations whether it's a good bad change in their lives.
Some people can find it hard to contrate on other things they only cope with one thing at a time.
Some people may worry more than they should, which is part of their condition what seems a mole hill to you feels like a mountain to them. You just need to be patient until the person realises that things may not be as bad to what it seems to them.

Everyone suffers from Anxiety and depression one way or another.

Sadly there's not enough said about stress I think we need to raise Stress awareness for everyone, that includes people with LD and Health problems.

Some people don't know that some people stuffer LD and Health problems together, that's what I have otherwise I wouldn't have known that.

Anxiety and depression are forms of stress in every ones' lives.

Many things can get on top of people, paying bills, not enough work, too much work, marriage, relationships, children and even loneliness.

It's very hard to make a balance to keep healthily and happy.

This can be why a lot of people can turn to smoking, drugs and etc.

When you have learning disabilities there can be a lack of support off society because we are slow and find it harder to cope with our lives than other people yet we are more easy ill than other people.

Stress, Depression and Anxiety can last short term or for life.

If you think about it we can all stuffer stress one way or another.

It's so easy to worry about things that you didn't need to but with somethings you were right doing so.

If you would like to have more understanding with the Mind.

You may learn whats, whys and hows the Mind is or can be affected.

Tap Mind in the Google engine or whatever you have got.

WWW.mind.org.uk

Save it in your favorites or Bookmarks.


Whatever Health problems and disabilities are we have enough stress with that on it's own.

We understand for eg; that we have to pay our bills like everyone else but with the problems we have already, we have double stress.

You feel tense.

You panic and worry about things that aren't as bad as they seem.

For eg; when I leave home to go anywhere I check my bag and my front door to make sure I have locked the door, remember my keys, bus passed and etc.

Touch wood I only forgot my money and phone once and had to travel from town back home to get, lucky I wasn't working at the time.

It seems like the end of the world when someone in your life dies or when your relationship breaks down.

You feel as if the world is controlling you.

I panic when I walk into services, load of people give me different answers to one question.

For eg; Is this benefit right for me?

I can't cope with too much jargon and too much information.

To be truthful the answer is either yes or no not both.

Managers need to inform all staff on what the rules are otherwise it confuses people.

Sometimes crowds can panic me where there are too many people around me.

I am a bit better than I used to be.

It can depend where I am and how many people there are.


When I really worry about things, it causes me to have Peta Mal fits.

I am easy misunderstood mainly when I am accessing services, when information doesn't seem straight forward to me.

I always have to have things going on in my life, otherwise I get very angry,depressed and bored.
My Gran died in 2007 and my last relationship broke down for the last time.

If it hadn't of been for Employment Pathways getting me on to Mencap, I don't know how I would have coped with my life now.

The first longest my relationship broke up at the end of 1996, which was two and a half years.

Now when I think about it wasn't that long yet after been apart 4 years, I gave him a second chance that lasted seven years.

Now there's no going back.

I couldn't stand sitting in the house alone but I wasn't in the mood to talk to people either.

I just used watch the world go by.

At that point I used to drink very heavy, which lasted six to twelve mouths.

I then worked it that couldn't go on like this forever yet I was still having a break down and even feeling as if I wanted to end my life.

Never the less I cut the drinking down and I started writing poetry to get things off my chest.

Saturday 1 May 2010

Employment

Back in 1999, there were a lot of employers sued for discriminating disability, sex and race.
People with disabilities feel more of a Health and Safety Hazard at home than work. A lot of us stuffer from Anxiety and depression, we need to keep our bodies and minds busy.I spent 13 yrs signing on, which made me very down in myself. Since I have been working 3yrs ago, helping others like myself, I can take anything that life throws at me. My work can at the right time for me just a little before my Nan died and as my last relationship was breaking up.Everyone has the rights to a life, you wouldn't like sitting at home staring at the wall all day long, why should people with disabilities and Health problems. I like to end the days knowing that I have made differences to people's lives.

If you read my report on Access All Area Now and Our Shout I have written about how I am willing to help people like myself to gain a career of their choice whether they want to be employed or Self employed. Baring in mind that Access All Areas Now! has only just started and it need time to build, we have a lot to learn ourselves just yet. We are just on our business plan at the moment.


People with learning disabilities are treated better than they used to be but we still have a long way to go. People's attitudes still need to get better towards people with disabilities. A lot of people with LD, such as myself didn't learn anything at school mostly due to lack of communication and understanding with teachers. A lot of us didn't leave school with qualifications, which made us feel useless.

A lot of us went to college after school, achieving qualifications, not getting job for years or not at all. No one gave us enough support to get work, which meant not giving us enough time or and not enough chances. Not many of us had paid work or we were on training schemes, which was very low pay. Most of us had to spend our time st airing at the four walls at home doing nothing. The people were lucky enough to do something were messed about place to place through discrimination in the work placements or and at college achieving qualifications but not knowing what our future was. We just had to enroll every September, which were mostly the same ones for eg; English and maths. Most people didn't find the course very interesting. Society didn't seem to think many of us were very clever. All we needed was the right support. Why have most of us been given the job all day long when we have been on placements?
This has made us feel like dog's bodies.

Support and attitudes needs to get better. Jobs need to be more interesting, we need to spend our days doing different jobs not the same. Those people like myself with dyslexia need more support. People with LD should train people without LD. We should be given the right support for the LD we have got. No one should be left out no matter what.

There's still too much information and too much jargon. The government or and managers should all staff what our rights so we don't get different information off different people.

There are a lot us with LD who are creative so we should create creative jobs. There still isn't enough people with LD with jobs at all but it's better than it was. Mencap works hard to battle with with government to see that people with LD get our rights. We believe a future for all people with LD when we see it.

People with high support needs need their benefits more than people with mild needs. The government should spend money on the people who need it most otherwise they are also costing themselves too much money. With the right support people with mild LD should get a wage like everyone else. With the right support people with LD accept good and bad in life like everyone. For eg; having to pay tax.

We should be given the right support to learn Health and Safety. We should be given the right support be healthily and safe in all areas of life, which includes the work placements.

Back 2008, Our Shout Self - Advocacy were talking about a Travel Buddy Social Enterprise. This is what Andy and myself from Our Shout read at the Learning Disability Employment play.

People with LD are being encouraged to access community facilities but this will be hard and too much money for those who don't travel independently.

Isolation is a feeling that most people with LD face in the evenings and weekends. There's very little help for these people to get out and about to see, they have never had the chance to achieve this without Families/carers. Many could travel independently with the right support.

A ' Travel Buddy' will help people with LD to travel on pubic transport to get to where they want to go. This will help build Self-stream and potentially lead them becoming independent travellers in the future.

To promote Health and Wellbeing of people with LD by increasing involvement in community based work and activities.

Intensively trained adults with LD to set up a City wide team of paid ' Travel Buddies.'

The proposed service will help encourage social inclusion, promote independence, and give paid work chances.

Many people with LD do not like traveling on ' Special buses to the Day Centres. To up date this report to 2010, we have found out the work we have been doing for the last year that prices have gone up on the Day centre buses. Now many a people with LD who go to these Day Centres could have learned with the right support to travel independently. These people often spend a long time on the transport while others get picked up.

Since 2008 myself and Jessica Bromley have started a business 'Access All Areas Now!' in December 2009. At the moment Access All Areas Now! is just a LD Awareness Training service, which trains all services around LD awareness. We also hope to create a service to support people with LD with all areas of life. We are not building our hopes up but never say never. It will be a long time if it ever does happen. We will work our hardest to see that the Travel Buddy service does happen.

Often people are travelling to Day Centres before going to college in the morning. This means people are taking two journeys instead of one.

Background.

In the past people such as myself from Our Shout Self Advocacy group haven't had any good luck in employment this why we wanted to work for ourselves. At the moment there's only myself and Jess. We hope all of Our Shout be with us but it's a case of more support and funding. One of our areas now we hope to achieve is employing people with LD and creating jobs for people with LD.

Transport has always been a big issue for many people with LD and it was highlighted that there was a need for a travel service to support people with LD to access the communities when people with LD need to and want to.

Aims

The Travel service will give proper paid jobs for people with LD with 1 to 1 support with who wants to use pubic transport to get around.

To help social inclusion people with LD help them to become confident and independent.

To give Wolverhampton a unique bus sevice that supports people with LD help given by people with LD. there are many egs; in other areas of the country where this is working well.

In 2008, Mencap put together a bid for some Eurpopean funding and are continuing to look for other funding chances in case we are successful.

Jess's boyfriend Andy Howell is working with myself and Jess at Access All Areas Now! but he isn't Self - Employed yet but he will soon will be.