LGBT or LGBTQ? Just involve us please

June every year is 'Pride' month. Its used to know our history, raise awareness, stop stigma and discrimination. But most of all its a celebration!


Part of LGBT history is the Stonewall Riots that happened in Greenwich Village in the United States of America on June 28th, 1969. This was in response to police raids. It is widely believed that this started the gay liberation movement.

This gentleman above is Harvey Milk. In 1977 he became the first ever openly gay elected official in the history of California, USA. I have read a lot about this man and he was for ever for standing up for the rights of gay people. He was an official of the supervisory board of San Francisco. He served for only 11 months when he was shot by a previous political competitor. They made a film about him called 'Milk', which starred Sean Penn. I haven't seen it but its on my list to do.

On the 7th July this year its the 'Pride March' which starts off in Trafalgar Square and ends up in Hyde Park. I've never been but its a goal of mine. Large crowds really affect me, due to my autism but I'm working on it. Above is the rainbow flag, the official flag of the LGBT community. In the USA large companies like McDonalds, Burger King and Starbucks are using the rainbow flag on their merchandise during Pride month. Would happen 10 years ago? Times are changing.

There has sadly always been infighting between the different groups within the LGBT community. It started off in the 1970's between the gay men and lesbian women. Now there are so many different groups that need to be heard, like pansexuals, asexuals and the list goes on. But what I think has never been recognised in the LGBT community is people with learning disabilities and/or autism who are gay. We face double discrimination and are a small percentage of the general population, let alone the population of people who are LGBT. People with learning disabilities and/or autism are disabled and often find it difficult to be accepted by the general population but throw in 'being gay' to the mix and it becomes even harder.


With the Adult Learning Disability Service of Oxleas NHS Foundation Trust they have just started a group for staff and people like me. Its early days of the group but I am really looking to joining the group and having my voice heard!


Richard
Self Advocate

Our inspirational son Oliver

Oliver had a brilliant life. He enjoyed college, playing football and was an amazing athlete, in training to become a Paralympian. Oliver was fun and laughed a lot. He loved life and being with his family. He was very bright, achieving GCSE and BTEC qualifications. But on 11 November 2016, aged 18, he died in hospital care.


We never imagined this could happen. When we had taken him to A+E we thought he would be in hospital for a couple of days at the most, and he would be able to go to college the following week as planned.


As a result of having meningitis as a baby, Oliver had mild Cerebral palsy, partial seizures and a mild learning disability. He had high functioning Autism too. His additional needs were not obvious, but anxiety was a challenge for him.


When Oliver turned 17 his seizures increased and on several occasions he had to spend some time in hospital. His seizures caused him to become anxious, scared and agitated. His Autism became magnified.


In October 2016, when he was 18, Oliver was admitted to an adult hospital having partial seizures. He was conscious throughout and was very scared and distressed. I gave the staff Oliver's Hospital Passport detailing how his Autism and learning disability affected him, and how to make reasonable adjustments. This was placed in a drawer without a glance.


Several doctors were talking to Oliver at once, using complex language that was hard to understand. When Oliver wanted to walk around (a normal part of his seizure activity) he was restrained, which heightened his anxiety.


Oliver had said in the ambulance he did not want to be given antipsychotic medicine. He said this again in the hospital, as did we. When on this medication in the past we had seen Oliver’s behaviour change in a way we had never seen before  - hallucinating, tearing at his skin with significant increase in seizure activity. We also knew that Oliver was not psychotic or mentally ill. Previous senior consultants had said the same thing. The doctors in A+E wrote "antipsychotic medication" in red in the allergies box on all of Oliver's ICU patient 24 hour care charts.


Oliver was eventually sedated. A few days later, against Oliver's and our wishes he was given the antipsychotic drug, called Olanzapine. 


Doctors said it was to control his behaviour when he woke up. Oliver did not normally display challenging behaviour; he was a very calm and mellow person. 


Sadly, Oliver never woke up; the Olanzapine caused him to develop something called Neuroleptic Malignant Syndrome. His brain swelled so badly it was bulging out of the base of his skull, and he died.


If the doctors and nurses were trained to understand how to make reasonable adjustments for him as someone with Autism and a learning disability, they would have known how to adapt the environment to meet Oliver's needs.


They would have had the training to support Oliver's medical, social and emotional needs effectively. They would have known how important it was to adapt their communication, such as using humour to settle his anxiety in a crisis, and help stop it escalating further.


When doctors were making the decision about how to manage potentially challenging behaviour as Oliver came out of sedation, they should have properly explored alternatives to using antipsychotic medication. There was time to do this, and to consult with the professionals in the community who knew Oliver best. But these things didn’t happen.


I truly believe that ignorance of learning disability and Autism cost Oliver his life, and we must never allow this to happen to another person like him.


Paula McGowan


Reproduced with the kind permission of Paula McGowan and Mencap

Sign my petition

Paula has launched a Government petition for all doctors and nurses to receive mandatory training in learning disability and Autism.


Sign the petition to support this and help doctors and nurses receive training in order to be able treat patients effectively and correctly as they want to be able to.

Sign now

How we can make a change

Mencap's Treat me well campaign report states that 1 in 4 doctors and nurses has never had any training on learning disability. This is unacceptable.
That's why I've launched a Government petition so all doctors and nurses get the mandatory training which could have saved Oliver's life.
Please sign my petition and help me to help our doctors and nurses to receive mandatory training in Autism and learning disability awareness so they have the ability to treat patients effectively and correctly as they want to be able to.

Can You Understand It? team present at Learning Disability Today!

The Can You Understand It? (CYUI) team were delighted to be invited to the Learning Disability Today Study Day. Sunny and John with Steve and Sharon delivered a workshop on 'Communicating with people who have a learning disability'.


We developed our presentation a few weeks before the event. After we wrote the presentation we then had two dry runs whilst timing ourselves. We have a slot of 45 minutes on the day. We finished after 40 minutes and left 5 minutes for questions. We impressed ourselves!


On the day we met at Charing Cross train station under the clock tower. We then got the Northern Line tube to Camden Town. The conference was being held at ORT House, which is a lovely venue and is full of history of the Jewish people. There was a book stall there and they had our book on display. We felt proud!


We started the workshop by introducing ourselves to the 29 delegates. We told them about the work of the CYUI? team and the process of how you get a job with the team.

Then came a role play which focussed on 'patient experience in a hospital'. Sunny played the patient and John was the keyworker. Sunny was going to have his blood taken in outpatients. He couldn't find where you get your blood tested. The hospital called it 'phlebotomy' but a nurse (played by Sharon) was really helpful and pointed them in the right direction. They arrived and met a rather grumpy receptionist (played by Steve) who was more interested who won the X Factor. There was good and poor examples of how you communicate in the role play and the audience were asked if they can recognise them.


The next section was 'how much do you know about easy read information'. We were please to see that all the delegates had a good grasp of what easy read is.

Sharon explained the accessible information standards that the NHS is required to follow with every patient. We also discussed other laws that help with communication, like the Mental Capacity Act (2005). We then went through the top tips of producing easy read. One of the interactive exercises we did was asking the delegates to translate difficult words into easier to understand terms. Here's an example:

We concluded the workshop by giving them example of using easy read is a small change but makes a real difference, like communication passports. Then John finished if off with presenting the 'Bill of Rights'.

 

We had some excellent questions from the audience and they were really interested in our work. Sunny said:
'It was great to meet people who are interested in easy read and stand up for the rights of people with learning disabilities'.


It was a wonderful experience which we really enjoyed. We would like to thank Jan, Graham and Barney from Pavilion Publishing for being so welcoming and holding such a great event.

Antony runs the London Marathon for Mencap!

This year I ran the hottest London Marathon on record and am still wondering how I managed!

I have previously completed 3 London`s (as the Pro`s call it!) and felt, at aged 46 and rising, that I had one more in me – my competitive soul would not enter unless I could beat my personal best of 3 hours and 43 minutes.

I trained hard and felt that I was fitter that I had been for many years and was better prepared than ever – then, seven days prior, I heard that Britain “would be looking forward to a heat wave peaking with temperatures of 25 degrees on the 22.4.2018” Errrr….not me thanks, I was looking forward to a chilly, overcast but windless and dry day please!

As the next few days grew hotter and hotter the race organisers sent daily information on tips and advice on what to do on race day and how to manage the heat – I realised my vulnerability when I was chased around the registration centre and “encouraged” to accept free hand outs of factor 50 sun cream!

I ran for 5 miles on the Thursday prior to race day and it was 27 degrees and a massive shock to my sun sensitive system – I was exhausted and struggled to complete my last short training run – as I collapsed on the floor when I got home i proclaimed to all that it was off – that there is no way I can run 26.2 miles in this heat, forget it!!

On race day I prepared well and was ready for the day and race ahead – I walked across Blackheath at 08:30 and felt the sun`s strength already – although not 27 degrees I knew that it had to be respected and began to feel happy that I had experienced it`s potential on Thursday evening. I hydrated well and was ready to head all the good advice to take it easy and “go slow” I told myself that if I could get to halfway and feel good then I would continue…

I was in pen 2 so part of first wave of starters and was on my way at 10:05…It was hot but I felt good and began to feel the atmosphere of the immense crowds – 2 or 3 deep all the way round – I saw some family and friends and I was buzzing – I kept an eye on my trusty watch and pace was good and steady – On track for an unexpected PB?

I felt good halfway, I felt good at 14 miles and was happy at 16…at 18 miles I began to lose focus, some may describe the “wall” and imagine a physical barrier – for me it is emotional and psychological and I kind of lose heart or the will to continue – I just kept telling myself that if I could get to 22 miles (only a park run away) and pass Tower Bridge then I would be good again – I pushed myself to reach Tower Bridge and knew I could finish – This was the “home straight” all the way down the Embankment to the coveted Pall mall and Buckingham Palace – As I passed Tower Bridge I felt a wave of adrenalin and waved at the crowds who continued to encourage me and give me strength – I pushed as hard as I physically could and began to sense the finish – as I passed the houses of parliament the miles became yards but physical and mental exhaustion was challenging me – keep pushing, keep pushing I was shouting and then I was there , the finish in sight and my emotions exploded – As I ran over the finish I broke down – 8 months of training, hundreds of miles and pavements tread and this was it – finished! 3 hours and 52 minutes! Whoop whoop!

 

I would like to thank all of the anonymous cheerers along the way, all of Oxleas staff who supported me and my chosen charity Mencap who provided support throughout and whose cause kept me going for 26.2 miles.

I vowed never again but the lure of the London was too much! Here’s to next year.

Thanks, Antony

Oxleas NHS Foundation Trust  

First participants to attend Good Mood Group have completed the course with success!

Bromley Mental Health in Learning Disabilities Team has

launched a new group for adults with learning disabilities

living in Bromley. Six participants joined the first ‘Good Mood

Group’ for a six week course. They learned about mental

health, how to stay mentally well, and strategies to cope with

stress, what to do if they become mentally unwell, and

created staying healthy plans.

The group was set up and run by Mental Health in Learning

Disabilities Specialist Nurses Jill Davies and Lindsay Gordon.

They were joined Student Learning Disabilities Nurse

Cormac Smith from University of Greenwich.

Feedback from the group was positive and they suggested

the course should run for longer. They also said they enjoyed

meeting new people, learning new things and being able to

bring along their fidget spinners!

Everyone in the group received a certificate, and will meet

one more time in the summer to talk about how they got on

with their staying healthy plans.

Jill and Lindsay plan to start another Good Mood Group

running for 8 weeks, this autumn.

Bromley Mental Health in Learning Disabilities Team

Oxleas NHS Foundation Trust

Second class citizen's - health inequalities

I used to be a member of The Tuesday Group in Lewisham. Yolanda and Glory were also members of the group. Sadly they have passed away. Yolanda was 48 years old and Glory was in her early fifties. Its really sad but they are just a statistic and does the NHS really care about the lives of people with learning disabilities?


I saw the LeDeR report was published in early May. It was a shocking read and people are still dying much younger than the rest of the population. Also 1 in 8 people die with receiving poor care and neglect. This makes me so angry. This is the United Kingdom and the year is 2018. But for people with learning disabilities we are treated as second class citizens, facing prejudice on a daily basis and I just think that people don't care about us. We have known about the early deaths of people with learning disabilities for years and report after report and nothing has changed.


I saw that Jeremy Hunt sneaked out of parliament when he was asked about LeDeR. That was so rude and he shows no respect to people with learning disabilities. I think NHS England should respond to this report instead of saying nothing and hoping that it goes away, until the next report.


In Lewisham we had a talk about the sad death of Connor Sparrowhawk. Everyone knew he had epilepsy and no one thought it would be a good idea to support him during bath time? It is unbelievable. We were told last week of a young man called Oliver McGowan who also died whilst in hospital. Absolutely shocking. These young men had their lives in front of them but it was taken away by those who are supposed to be caring.


I train staff about reasonable adjustments. I think all staff in the NHS need training about people with learning disabilities. How to communicate with people should be a priority. Also training on recognising pain in people with severe and profound learning disabilities. Also to be told the right terminology, don't use the 'R' word.


I could go on and on but I will finish it with this. The NHS is celebrating 70 years. We will lucky if we reach 60, let alone 70! I won't be celebrating a NHS that doesn't care about people with learning disabilities. I will be  raising a glass for Yolanda, Glory, Connor and Oliver. You may be gone but never forgotten.


Peter Cronin
Self Advocate