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

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

Refocusing: what you see isn’t all there is – getting healthcare right in hospitals for autistic and learning disabled people

Significant changes in how autistic people with a learning disability access and experience healthcare can and should be informed by stakeholders, including the patient and their family.

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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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