OUR MOVEMENT - Changing Care ● Healthier Futures

We have set up a care movement to create healthier futures for people with learning disabilities through Care Talk

We are campaigning for better health outcomes for people with a learning disability so that they can have healthier futures. It is about enhancing and saving lives. Here’s why…..

We Believe

Each person’s life has worth and that changing care by providing information and guidance the health outcomes and experiences of people with a learning disability can be significantly improved There needs to be better understanding of the poor health experiences and outcomes of people with a learning disability. In order to enhance and save lives we ALL need to remember to :

Assess what is happening for and to the person

Consider what is behind what is happening is a health problem?

Take action DON’T DELAY

Act now consider ALL tune into everybody

Think differently and ACT creatively
See the person NOW not their disability
CONSIDER behind every behaviour change a mental or physical health reason and ACT
ALL you see is NOT all that there is
TUNE into a person’s frequency to understand who and how they are
EVERYBODY hurts sometimes – we all feel pain we show it differently

There are tools within this site that should enable better access, outcomes and experiences for people with learning disabilities, families and support staff as well as health professionals

Adjusting Care Improving Outcomes – Solutions we want to see to enhance and save lives

We need to see more learning disability nurses working across community teams, GP surgeries, maternity settings, emergency departments, special schools, acute, general and children’s hospitals and the criminal justice system to ensure better care outcomes and experiences.
All learning disability nurses working in community social care settings who are not acting as learning disability nurses in their work could do so in reconfigured roles to enhance the health outcomes of those within their service areas e.g. ensuring annual health checks, hospital passports and acting as advisors to staff in services and as conduits between health services for those using their services.
A positive innovation in service creation would be a Single Point of Access service staffed by learning disability nurses to assist in providing support, advice, guidance and navigation through and within health care services as well as community to increase positive timely health access and outcomes for all people with learning disabilities and their family and supporters.

NHS Improvement Learning Disability Standards

Inclusivity for a learning Disability

When I step inside those doors of yours,
Please greet me by my name,
Say hello to my accompanier,
But remember, I am the reason we came.
Please ask me for my hospital passport,
And look at it whilst I wait,
It tells you all about my needs,
If you could meet them, that’d be great.
It will tell you my likes and dislikes,
Personal and medical information too,
Things that you might need to know about me,
That I may struggle to share with you.
I may find it hard to look at you,
I may even hit or cry or yelp,
Please don’t judge me for what is beyond my control,
I still need your help.
Pay attention to little details,
Like a character on my shirt,
Showing your interest into my likes

Certainly wouldn’t hurt.
Please remember the things you’re doing
To patients each and every day
May be okay for some other children,
But I might shy away.
I might need a little extra time,
To understand your plan,
Find out from my carers, how I learn,
Then communicate to me as best you can.
Remember, I may not be able to tell you,
When something’s wrong, or I’m in pain,
Observe my body language and behaviour,
You’ll be surprised what insight you can gain.
Most importantly, please remember,
I’m important too,
I may have reduced intellectual abilities,
But inside, I am just like you.

By Chelsea Johnson

The Mental Capacity (Amendment) Bill must change

The Deprivations of Liberty Safeguards (DoLS) are designed to protect the most vulnerable people in our country, but they are failing to do so. Jonathan Senker, our chief executive, argues that the Mental Capacity (Amendment) Bill will not solve these problems, but will make them worse, unless major changes are made to the Bill.

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NHS Improvement
Learning disabilities improvement shout-outs
Our improvement shout-outs are short films focused on four people’s lives which have been improved as a result of the support, care and intervention provided by four NHS trusts. Our improvement shout-outs are four three-minute short films focusing on the person whose quality of life has improved as a result of the work of a particular organisation.
Good Practice
A Movement to Enhance And Save Lives

20th June 2018 saw the launch of Changing Care Healthier Futures at The Supreme Court. The campaign, which is supported by Actor, Campaigner and Parent, Sally Phillips, is an essential movement for change that will celebrate and evolve good examples of how to get care right for people with learning disabilities and their families.

Changing Places

The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.

Learning Disabilities Mortality Review

Learning Disabilities Mortality Review (LeDeR) Programme Bulletin - July 2018

Dying too young webinar

Public Health England Youtube webinar about the early deaths of people with learning disabilities. It’s been put together by Professor Pauline Heslop from University of Bristol, Gyles Glover from Public Health England and John Trevains from NHS England.  It was recorded a few weeks ago – but you can still ask questions. It includes up-to-date data from Public Health England and the LeDeR programme.

This is why a review is not an investigation

We continue to be asked about the difference between a review and an investigation. So, LeDeR programme lead Professor Pauline Heslop has written these definitions to help:

Review: A review is usually a proactive process, often without a 'problem', complaint or significant event. It is often undertaken to consider systems, policies and processes. A review is a broad overview of a sequence of events or processes. It can draw on the perceptions of a range of individuals and a range of sources. The resulting report does not make findings of fact, but it summarises the available information and makes general comments. A review may identify some areas of concern that require investigation e.g. if there is some evidence of poor practice, in which case the appropriate recommendation for an investigation should be made.

Investigation: An Investigation generally occurs in response to a 'problem', complaint or significant event. An investigation is often initiated in relation to specific actions, activities or questions of conduct. It is a systematic analysis of what happened, how it happened and why. An investigation draws on evidence, including physical evidence, witness accounts, policies, procedures, guidance, good practice and observation - in order to identify the problems in care or service delivery that preceded the event to understand how and why it occurred and to reduce the risk of future occurrence of similar events.

Watch: Reducing health inequalities for patients with learning disabilities

This short video has been put together in a bid to help reduce health inequalities for patients with learning disabilities. It’s primarily aimed at GPs and GP surgery staff, but contains useful information about the LeDeR programme for everyone.  Nicola Payne, clinical champion for London, has helped produce it so GPs can ensure they offer good quality care.

Web-based platform changes have improved auto-allocation

We update the LeDeR Review System twice a year, responding to issues raised by reviewers and local area contacts (LACs). One recent change relates to the auto-allocation of reviews to LACs.

When a notification is made, the LeDeR Review System automatically allocates it to a LAC, based on GP postcode. This was reliant on us being given a GP postcode. So, allocations now use GP postcode, address, phone number, or the deceased’s address, which has improved the allocation of reviews to LACs.

We are also currently testing other changes to the web-based platform, including those related to duplicate notifications, LAC/reviewer changes, and sharing redacted reviews.

eLearning to be rolled out in September

The LeDeR programme is developing an eLearning course to train reviewers, local area contacts and other stakeholders. The course is scheduled for release in September 2018. For reviewers, it is intended that eLearning will form part of a blended learning programme. Once new reviewers have completed the online learning, we anticipate they will be ‘buddied’ with an existing reviewer for their first review.

The eLearning platform will also hold training materials and supporting documents and will be available to access for a refresher, if needed, at any stage after completion.

Learning from deaths guidance

New guidance about working with bereaved families has been produced by the National Quality Board. It’s available here.

There is also a leaflet for trusts to provide to bereaved families, available here.

New LeDeR Learning into Action newsletter

To highlight best practice from around the country, we will be producing a new Learning into Action newsletter. Each edition will focus on a specific topic to tie in with issues identified in mortality reviews. 

The first newsletter will focus on Aspiration Pneumonia. Anyone with any actions or best practice in relation to reducing deaths from Aspiration Pneumonia which they would like to be included, should email chris.allen@bristol.ac.uk.  The topic of following newsletter will be infection (sepsis).

Care Talk
Focus on Safe Guarding

The last few months have seen some of the highest temperatures on record. Although many of us would have enjoyed this heatwave it of course came with risks; especially for the elderly. Many care providers actioned their own heatwave alert plans and of course our frontline care workers went above and beyond in ensuring service users were not only safe and comfortable but were still able to enjoy the sunshine.

Health Resources MacIntyre
Easy Health
Annual Health Checks

Health checks for people with learning disabilities toolkit

People with learning disabilities (LD) have poorer physical and mental health than other people and die younger. Many of these deaths are avoidable and not inevitable.

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When to call an ambulance when someone has an epileptic seizure
Medication Pathway
Challenging Behaviours
It’s episode 17 of Challenging Behaviours, the podcast that challenges behaviours towards disability. In this episode Jack and Tom were lucky enough to be able to sit down with Hayley Goleniowska and Sally Phillips on World Down Syndrome Day and talk about some of the absolutely joys, and some of the challenges of bringing up a child with Down’s Syndrome, as well as the rising trend in screening and termination.
Wear odd socks for Down's syndrome

'Supermodel' Chloe wins film role and fulfils fashion dream

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The Rightfullives Exhibition


It’s an exhibition that explores the theme of Human Rights and people with autism and/or learning disabilities. The idea for the exhibition came about through a conversation about how the legal framework of the Human Rights Act seems to barely touch the lives of people with learning disabilities.

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NHS Improvement commissions national LD data collection

The NHSI – Learning Disability Improvement Standards review is a national data collection, commissioned by NHS Improvement (NHSI) and run by the NHS Benchmarking Network (NHSBN).

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Creating a Culture of Caring

A View from the Edge

As a patient, I was privy to failures that I’d been blind to as a clinician. There were disturbing deficits in communication, uncoordinated care, and occasionally an apparently complete absence of empathy. I recognized myself in every failure.

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Caring for people at risk of choking

Why should you read this?

When something goes wrong in health and social care, the people affected and staff often say, "I don’t want this to happen to anyone else." These 'Learning from safety incidents' resources are designed to do just that. Each one briefly describes a critical issue - what happened, what CQC and the provider have done about it, and the steps you can take to avoid it happening in your service.

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Wouldn’t Change A Thing do The Greatest Showman

After their appearance on the show earlier this year, the mums from Down’s Syndrome charity Wouldn’t Change A Thing have released a new song.

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Asking the real experts

What do you think when you hear the term service user involvement? How about co-production? Or collaboration?

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Peter’s Story

Peter has been a vital member of DanceSyndrome since its inception, playing an active role in scoping out what the group wanted DanceSyndrome to look like and the activities they wanted to deliver.

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Care (Education) and Treatment Reviews

The role of health and social care providers

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Learning Disabilities Housing

We are committed to making sure that people with a learning disability, autism or both have a choice about where they live and who they live with.

When people are not happy about where they live they can be more likely to display behaviours that challenge, which can then lead to them going into hospital.

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Evidencing the Impact and Securing the Future of Learning Disability Nursing

A jointly commissioned project by NHS England and Health Education England (London) led by the Foundation of Nursing Studies (FoNS)

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MindEd Learning Disability

Aimed at the Adult LD (ID) care workforce, these modules support the HEE Skills and Competencies framework for the care of adults with Learning Disabilities. The modules are divided into one universal session followed by two specialist sessions, although all sessions are open to all users.

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Intellectual Disabilities

Identifying an Intellectual Disability is important to a young person, their family, carers and services e.g. education, health or social care. A variety of evidence should be considered when diagnosing or formulating, with a view to creating a person-centred plan to meet a person’s needs.

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Reasonable adjustments for people with a learning disability

Guides on how reasonable adjustments should be made to health services and adjustments to help people with learning disabilities to access services.

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Matthew’s Digital Care Plan
Learning Disability, Autism and Human Rights


A practitioner's guide

A Fair, Supportive Society: Summary Report

The report commissioned by NHSE highlights key facts, stats, and interventions. Much of the government action needed to improve life expectancy for people with disabilities is likely to reduce health inequalities for everyone. Action should focus on the ‘social determinants of health’, particularly addressing poverty, poor housing, discrimination and bullying.

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STOMP Update

Walsingham Support's adoption of the STOMP campaign (stopping the over-medication of people with a learning disability, autism or both) continues, after staff around the country gather data on psychotropic medicine use and teams work together on how best to implement it.

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Exploring professional decision making in relation to safeguarding

A grounded theory study of social workers and community nurses in community learning (intellectual) disability teams in wales

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'Oliver McGowan's name should be given to autism and learning disability training'

Paula McGowan watched helplessly as autistic son Oliver’s health crumbled when he was given antipsychotic medication against his wishes. Here, she tells Darren Devine how she won’t rest until the government delivers its promise to introduce autism and learning disability training for NHS staff.

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The importance of identifying an Intellectual Disability/Learning Disability for the individual, parents/carers and from a service/policy perspective

It is a good time to reflect on the importance of identifying an Intellectual Disability or a Learning Disability given Dr Mark Lovell’s IDIDA2H new framework. Although it is sometimes suggested that services and support should be available without a diagnosis, it remains the case that understanding needs fully is important to meeting them and planning for the future for the child, young person and family. This enables good commissioning as well as giving legal protections under the Equality Act.

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Learning Difficulties in the ED

Approximately 2% of adults have a mild intellectual disability and 0.35% have a severe or profound disability. There are many, many causes for these disabilities including chromosomal problems, congenital infections, neurodegenerative conditions, post-traumatic conditions and those which we still can’t properly explain but which definitely aren’t caused by vaccines. Many of these, as well as causing learning difficulties, also have physical symptoms and comorbidities, so you will meet plenty of people with LD in the ED. Some conditions causing LD are “invisible” – you may find no obvious physical clues that your patient has difficulties which may impact on your assessment and management. Conversely, some patients who appear very physically disabled may have no learning disability. It’s so easy to get basic things like communication wrong, making the rest of our job so much harder.

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Diagnosing Learning Disability

Two in five people with learning disabilities not diagnosed in childhood

Researchers from the UCL Institute of Health Equity (IHE) found that people with learning disabilities will die 15 to 20 years sooner on average than the general population. That amounts to 1,200 people each year, a figure which chimes with the government’s own estimate. The IHE says it is not a consequence of the underlying condition that led to the learning disability but because they are being “catastrophically” failed by the government.

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Why we’re challenging behaviour

It is very difficult to put ourselves in the shoes of a severely autistic man with a moderate learning disability who has been victim of institutional behaviour for so long.

Ben was a patient at Winterbourne View. You may remember him from Panorama. Following Panorama, Winterbourne View of course closed and Ben was transferred to the Atlas Project, in rural Devon. Details of the alleged horrors of that place have been sub judice – the company’s management and staff were all on trial – but Ben’s mum sums her view up when she says “suffice to say it was 100, no 1000 times worse than Winterbourne.”

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Cheshire and Merseyside learning disability training

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Autism-specific Training

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Cheshire and Merseyside learning disability foundation level training

Planning for discharge
Where is the humanity?
A mother's campaign for autism care equality for all

Paula McGowan’s son Oliver died aged 18, after hospital staff gave him a drug that he had pleaded not to be prescribed, having previously suffered a bad reaction.

Paula told BBC Politics Live she believed the death of Oliver, a high functioning autistic teenager from Bristol, could have been avoided if the nurses and doctors were trained about learning disabilities and autism.

Since his death, she has campaigned tirelessly for mandatory training for NHS staff. Her campaign will be debated in Parliament on Monday afternoon.