Oxleas Learning Disability Bulletin for October 2018

Welcome! The purpose of this bulletin is to keep you in touch with news from the learning disability world in a monthly digest. We hope to include information on the latest policy and research along with easy read information. If you have any requests for information or if you want to share with the Oxleas learning disability community please send them to Steve Hardy or Jill Davies.

 

If you would like to receive an email alert about future bulletins please send an email to Steve Hardy.

All links are written in blue or grey and worked on the 25th October 2018.

Stories of the month!

Hopefully you have all heard the name 'Oliver McGowan' and how he sadly died in hospital in November 2016. But his brave mother has battled since this tragic event to make sure all NHS staff receive adequate training about autistic people and those with learning disabilities. Well done Paula! Here's a selection of news articles following the announcement made in Parliament.

Watch the debate and Oliver's story from Parliament

Government confirms plans to make sure all health staff get autism training (23 October 2018)

A mother's campaign for autism care equality for all

Activist of the Year Awards 2018 - Paula McGowan

Government agrees to act on mum's campaign to change autism treatment

Learning Disability Pride - 15–21 June 2019

This Morning viewers in tears as autistic superfan who learnt to speak watching the show hugs his heroes

Prince Harry Breaks Royal Protocol for Boy With Down Syndrome



Tesco’s kind gesture to boy with Down’s syndrome after seeing dad struggle

Transforming Care - Is it Working? - Radio 4

Festival organised in honour of disabled teenager

Theatre calls for learning disability Oscar winner

Stopping over medication of people with a learning disability, autism or both (STOMP)

Models With Down Syndrome Shine at Celebrity Filled Event

Blogs, Vlogs and Podcasts

28 Ways People With Down Syndrome Prove Doctors Wrong



Building the right home


Disability in Africa: 'I'm no longer ashamed of my disabled daughter'


Helping people to find the right home with the right support


Helping prevent over-medication

'I was diagnosed with autism at 32', says Cardiff mum

Including My Son With Down Syndrome Benefits Everyone in the Classroom

It's good to talk if you're not happy



possABILITY: A learning disability documentary


Positive outcomes for Bexley’s Learning Disability Clozapine Clinic

Restraints, assaults and self-harm in inpatient units



Sepsis: a personal story


Shopping through the eyes of someone with autism

Teachers are learning on the job how to manage students with autism

The 23-year-old busting myths about Down's syndrome

The voices of people with disabilities must be heard



Time for a change


When I Hear What My Son With Autism Doesn't Say

Books of the month!

Sexuality and Learning Disabilities (2nd edition)

With a chapter by our very own Dr Sandra Baum
Baum, S. & Alexander, N. (2018).  Pregnancy, contraception and women choosing to have a child.

In C. Bates, (Ed), (2018) . Sexuality and Learning Disabilities: Practical Approaches to Providing Positive Support. Brighton: Pavilion.

Mental Health in Intellectual Disabilities 5th edition


With chapters by our very own Dr Andrew Flynn, Dr Robert Winterhalder and Steve Hardy


Courses

MindEd Learning Disability On line course


LeDeR e-learning reviewer training platform is now live

Talking End of Life with people with intellectual disabilities - on line course offered by The University of Sydney



Easy read

Screening tests for you and your baby: easy guides



Events

30th October 2018
Women and Girls Conference 2018, National Autistic Society



7th November 2018, Stirling
Post-diagnostic support for people with a learning disability and dementia



7th November 2018, London
Launch of the Greater London Learning Disabilities Community of Practice

26th November 2018, London
London Learning Disability Mortality Reviewer (LeDeR) Training



28th November 2018, London
Learning Disability Today Exhibition


19th March 2019 - Manchester
Learning Disabilities and Autism: Promoting Positive Outcomes


23rd - 25th May 2019, Barcelona, Spain
European Congress on Mental Health in Intellectual Disabilty 

Guidance and resources

10 Tips to Calm Down a Child with autism in Meltdown



Justice for LB Toolkit


Medication Pathway


NICE: Decision-making and mental capacity



Ordinary residence guide: determining local authority responsibilities under the Care Act and the Mental Health Act


Suspicion of sepsis dashboard


Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices

Video: Sepsis and people with learning disabilities

News about people with learning disabilities and autistic people

Autistic boy 'constructively excluded' from school - 16th October, BBC

Autistic woman ‘pimped out’ in care scandal - 18th October, The Times

Cafe providing disabled people with job opportunities, Cafe Dome in Brighton Hill, 'shocked' by 'disgusting' graffiti - 2nd October, Gazette

Consultation in January to decide future of day centre for adults with learning disabilities in Moray - 11th October, The Press and Journal

Croatia: End Confinement of People with Disabilities - 10th October, HRW

Danish government to give voting rights to people with learning disabilities - 16th October, The Local dk



Demand for long term care rises while number of people receiving help falls NHS figures reveal - 23rd October, ITV


Family judge goes public to BBC on litigant in person headache - 16th October, The Law Society Gazette

'Families of people with learning disabilities have been let down' - Fearon - 16th October, Sinn Fein

Father beats legal bid to silence him over autistic girl in hospital ‘cell’ - 13th October, The Times

Home to school transport and learning disability services targeted in Northamptonshire County Council savings - 2nd October, Northampton Chronicle



Inquest opens into death of man, 37, who died at Bradwell care home - 16th October, Eastern Daily Press


Learning disabilities care 'far from home' - 2nd October, BBC

Mocked Everton fan with Down's syndrome meets players - 29th September, BBC

Muckamore Abbey hospital a 'high risk' facility for patients with a 'culture of silence' on abuse allegations - 24th October, The Irish News

Mum of son with learning disability 'shocked' after Whippet bus he relies on is cancelled - 10th October, Cambridgeshire Live

Musical not just adapted for children with autism, it was designed just for them - 4th October, ABC

New social work model: ‘You can take longer view, not just stick a plaster on issues’ - 11th October, The Guardian

NHS learning disability nursing workforce hits record low - 27th September, Nursing Times

One in four disabled people don’t use public transport due to negative attitudes from other passengers, new research - 10th October, The Independent

Paddy and Christine McGuinness to launch reality show on life as parents to kids with autism - 7th October, Metro

Physical restraint used on 50% more NHS patients with learning disabilities - 2nd October, The Guardian

Pledge broken over care for the vulnerable - 3rd October, The Time


Revealed: National plans to transform learning disabilities care branded as 'failing' by nurses - 24th October, Nursing Times


Shocking report reveals what life is like for people with learning difficulties in Cumbria - 3rd October, News and Star

Southern Trust underspends on adults with learning disabilities - 16th October, BBC

This autism dad has a warning for anti-vaxxers - 16th October, Vox

Use Of Restraints Widespread On NHS Patients With Learning Difficulties - 2nd October, Human Rights News

Video shows off-duty Chicago police officer shooting teenager with autism – video - 17th October, The Guardian

Woman found locked up in London hospital is brought to Plymouth - 6th October, Plymouth Live

Woman with learning difficulties won't be told about covert contraception, judge rules - 19th October, The Independent

Reports

CQC The state of care

Requests

We are going to set up an on line survey in support of 'Oliver McGowan's Mandatory Training'. It will be short and to the point. Watch this space!

Research

Screening Tool May Identify Root Of Autism Behavior Problems

Siblings of children with autism have social, emotional problems

Some ‘autism genes’ show stronger ties to related conditions

Happy Halloween and see you in November!

It's Black History Month by Richard, self advocate

Black history month started off in the USA in 1970 . It was started by Black United Students at Kent State University. Black history month was first celebrated in the UK in 1987 and this was organised by a Ghanaian who served as special projects lead at the Greater London Council.


Black history month means different things to everyone but I like to remember the brave woman named Rosa Parks. She was a member of the civil rights movement and is best known for starting the Montgomery Bus Boycott, which lasted for a year. It began with Rosa refusing to give up her seat on the bus to a white person. She was sitting in the 'white only' part of the bus. People of all other ethnicities had to sit separately. It was in the state of Alabama, where they practiced segregation. She won a pivoting court case where segregation was declared 'unconstitutional'.

I also like to think of Malcolm X. He was a human rights activist and a Muslim minister. In his early days he thought things need to change instantly but after some years he started to think that change takes some time in a society.


Harriet Tubman was born into slavery in 1822 in Maryland, USA. She escaped and made lots of dangerous but heroic missions to free other slaves, friends and family. Once escaped she placed them in safe houses, known as the Underground Railroad. A lot of these missions involved rescuing slaves from dock ports in the USA and Canada. She was given the nickname of 'Moses' because her act of heroism.

My family came from Jamaica to south London in 1966. We lived in a part of Thamesmead which got known as 'concrete jungle'. My parents have told me that they have great experiences since being in the UK and have many friends of all races. But some people report it differently and have spoken about seeing some places that had the following instructions:

'No Irish, no dogs, no blacks'

In 1964 in our very own country called the UK the Tories in the West Midlands fought an election campaign based on racism. They often used this sentence:

'If you want a black neighbour, vote liberal or labour'  

Its funny how so much has changed in 50 years. I'm so glad that we as a country have come so far. But in the USA there is still a lot of racial tension. You just look at their state of politics in 2018. In 1991 a man named Rodney King was violently beaten by Los Angeles Police whilst pulled over for an arrest of speeding.  Little did those police officers know that this attack was secretly being filmed and was sent to a local news station. Within a day this was news all over the world. In 1992 the police officers were in court faced with charges of excessive force. Three out of four were found not guilty. There was outrage and the LA riots started straight after the verdict and lasted for 6 days. A year later the police officers were tried in a federal court and were found guilty.


I'm black and I'm British. But also the black community has to change. Some people's attitude about disability and mental health need to change and to understand that it is nothing to be ashamed of.


As a society we have come so far but change is slow. Hopefully some people across the UK can catch up with Thamesmead in south east London!




 

Bexley Mencap's contribition to the NHS 10 year plan

Bexley Mencap have kindly been contributing their suggestions to the NHS 10 year Long Term Plan. People with learning disabilities have been selected as one of the five priorities. They think this is fantastic and they feel everyone should take this opportunity to have their say about their own health. I met up with two groups at Bexley Mencap, first it was the Carlton Road group and then later the health group. Here's the groups suggestions and I think these are absolutely spot on and a brilliant start to an historic opportunity for people with learning disabilities.

 

1. Communication

• Everything that is written for everyone, there should ALWAYS be an easy read version.
• Every hospital and GP surgery should have copies of Book Beyond Words.
• Speak to the person first, not the carer.
• Staff should be trained in basic Makaton or Sign Along.
• Healthcare staff should make everything as predictable as possible for the person. Explain in easy English what's about to happen, as it happens and what you have to do afterwards. Don't just say it once, please check if the person understood everything.

 

2. Training

• All healthcare staff should receive awareness training about people with learning disabilities.
• The more often healthcare staff come into contact with people with learning disabilities, then the more training they should get.
• People with learning disabilities, their families and training staff should develop and deliver the training.
• The training should be an e-learning, it should be face to face.
• Training about how to communicate.
• Reasonable adjustments should be included, like what is a hospital passport, why they are vitally important and how to use them.
• Training should involve the good and bad experiences of healthcare.
• Should show the real life of people with learning disabilities and autistic people.
• Knowing about the health conditions that are more common in people with learning disabilities - like epilepsy
• 'Black books' in Bexley we use personal health profiles - it keeps a record of every health appointment - so you keep a history of your health needs.
• Repeat the training every couple of years.
• Go back and check what they have learnt - quality checkers

 

3. Going to hospitals

• We have a much better experience of hospitals if they

      have a learning disability nurse.

• Better communication with the person, communicating at the level of the person.
• Good support is based on understanding things much better, understanding me.
• Much employ doctors with experience of people with learning disabilities.
• Use different ways to inform people of hospital appointments – easy read, telephone message, pictures etc.
• Families and carers should be able to stay for the whole time in hospital.
• See the same doctor and same nurse.
• Talk to the person first – should be person centred.
• Visiting A&E – go to the front of the queue.
• Waiting too long causes anxiety – need to change this.
• What good experiences have we had :
• Physiotherapist's – speak to me first, they always       explain what’s happening, I know what is expected of me.
• Using easy read instructions or a video showing the person what exercises they have to do. 

 

4. My G.P.

 

• Receptionist's need training about being polite.
• GPs need to speak to you kindly, going the that extra mile.
• Annual health checks and are very important. All GPs should offer annual health checks. 

 

5. Staying healthy

• Need easy read information and in pictures how to stay healthy.
• Support and learning about what's in a healthy diet.
• There should be slimming groups for people with learning disabilities.
• Know more about calories, vitamins etc.
• Getting weighed regularly and help to understand what is a good weight?
• More exercise classes that people with learning disabilities can join.
• Free or reduced prices to join a gym.
• Running groups are free and you get to meet other people.

 

6. Reasonable adjustments

• Being offered the first appointment.
• Extra time - offer a double appointment.
• Everything in a way that the person understands - easy read, pictures, Makaton.
• Understanding the importance of hospital passports.
• Autistic people - check of the person has sensory processing problems and make adjustments - like dim the lights.
• Understand that you can't see all disabilities.
• Don't use jargon!
• Have a quiet room.
• Understanding the importance of having someone to speak up for you. This makes a real difference.
• If people are scared of doctors, dentist and nurses perhaps they can be asked to wear normal clothing.
• Have a face to face conversation with the receptionist rather than a machine.

 

 

7. Screening

 

We believe that far much should be done to make sure that screening is offered and followed up for people with learning disabilities, include:

• Breast cancer
• Testicular cancer
• Cervical cancer
• Bowel cancer

Don't just try once and make sure that its understood by the person.

 

 

8. Chemists

• All prescriptions and information should be in easy read.
• Giving an easy read version isn't good enough - they must check that the person understood what was said.
• Make sure the tablets come in the same size and colours each time you pick up a prescription.

 

9. Support workers

 

• Support workers receive the least training but they spend the most time with the person. So they should be taught above recognising illness.
• Should know how to prevent the flu or a cold.
• How to recognise CONSTIPATION.
• Its really important that they receive enough regular training.

 

 

10. Stopping people from dying earlier

 

• Training, training, training for all NHS staff and support workers.
• There is always a reason for behaviour - its up to the NHS to find out the reason.
• Just because a person has a learning disability doesn't mean that they wet themselves - it might be a UTI or cancer.
• Need far more research into the top causes of deaths among people with learning disabilities, why are the causes different from the general population and what can be done.
• Better understanding of Sepsis - which can be treated if you see it earlier.  

 

 

11. Get the flu jab

 

Make sure everyone gets the flu jab!

 

12. Being listened to

 

• You need to make the complaints system far easier to understand and listen to the person. Don't think they might make it up or get confused because they have a learning disability.
• Make people with learning disabilities aware that they can make a complaint.

Bexley Mencap would like to say thank you to NHS England for listening to them and being part of improving care.  

Positive outcomes for Bexley’s Learning Disability Clozapine Clinic

I thought I would write about our Clozapine clinic which the Bexley Community Learning Disability Nurses set up to ensure that our service-users had the right level of reasonable adjustments to meet their health needs

Here’s how we did it…..

I’ll explain a little bit about the background of how Clozapine used to be managed and then the process of how we got to where we are today.

The service-users used to attend another clinic whereby they would have their bloods taken. The phlebotomist would then send the bloods via courier to the central database for Clozapine analysis. The pharmacy would then inform us of the results. This was working ok but there were a few problems and we felt this system was not be-spoke enough to fully meet the individuals health needs and provide detailed assessment.
So….

Wen we moved to Queen Mary’s hospital, we decided to explore the options of setting up our own Clozapine clinic and work jointly with the Phlebotomy Team and agree a workable system. We initially met with the lead phlebotomist and the manager (who were really helpful) to discuss the plans to start the clinic and to highlight some of the individual needs of the service-users who will be required to have the blood tests so that the reasonable adjustments could be applied. Following this we were able to:

• Agree a monthly date for the service-users to attend on a consistent time every month
• Service-users would be fast-tracked and have support from our team to have the bloods taken
• We provided a folder with all the relevant information for each service user including blood stickers, ZTAS number (data base identity), dates of every blood test and the times to expect each individual.
• A training pack was given to the phlebotomy team in relation to learning disabilities and Clozapine management to support the team.

Once this working relationship was established, we were then able to develop the Clozapine clinic protocol.


Clozapine is an antipsychotic drug that is prescribed when other anti-psychotics have not been sufficiently effective. Due to its risk of causing neutropenia, all service-users are required to be registered with a central database and have routine blood tests throughout their treatment. In addition to the risk of neutropenia, there are other side effects which require very close monitoring.

 Therefore our role and function of the clinic ensures that people who are prescribed Clozapine are:

• Supported to have their routine blood tests on their stage of treatment
• Close physical health monitoring using an assessment chart for side effects (Glasgow anti-psychotics side effect scale for clozapine)
• Physical health monitoring conducted including BP, pulse, temperature, weight, waist measurement, active discussion around constipation symptoms and advice, additional blood screening and cardio-investigations requested as appropriate
• Health promotion offered and information shared. All service users have an easy-read information pack regarding Clozapine and information about the clinic which was devised in collaboration with Sharon Rodrigues, ALD Patient Information Lead
• Supported to attend their blood test and given individual blood packs with labels and advocate reasonable adjustments (fast-tracked if required)
• Further discussion and support regarding response to treatment, mental health presentation, medication, dosage and lifestyle changes e.g. smoking/caffeine intake
• Nurses have access to central database and can view/read and act on the results and liaise with pharmacy/service/users accordingly.

Picture of Merci, phlebotomist QMH and Ken, Service-user of clinic

How has it been going?

The clinic has been running now for 6 months. The feedback form that we have devised in an easy read format summarised that:

• All service users were happy that there was a long time slot monthly to discuss their physical and mental health and the monitoring within it
• They were happy that the side effects of Clozapine was assessed every month

Future sustainability

Further outcome measures are going to be developed to monitor and audit its on-going sustainability against NICE guidelines

Thank you for reading this blog. I hope this illustrates an example of good joint working and networking and the importance of close team working. This also is a reflection of how reasonable adjustments have been made in practice and how physical and mental health needs of service-users who are on Clozapine can be fully met in a person-centred way.

I welcome any feedback or comments

Sarah Westrip

Clozapine clinic nurses are Sarah Westrip, Jane Harding, Denzel Mafukidze, Daniel Stratton, and Dr Flynn our Consultant whom we work closely with.