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People with learningdisabilities dying too young.
A report about what ischanging.
Easy Read version of:Premature deaths of people with learningdisabilities: Progress update
What is in this paper
What this paper is about 1.
What needs to change 3.
What we found out 5.
1. Find out who has a learningdisability and what supportthey need
7.
2. Make sure services worktogether
13.
Law Rules 3. Stick to the law and rules 20.
4. Plan ahead 23.
5. Give good care to people whoare dying
25.
6. Keep checking why people die 27.
What happens next 29.
1
What this paper is about
ReportIn 2007 Mencap wrote a report calledDeath by indifference. It was about 6people with learning disabilities whoshould not have died.
A group of experts looked at whypeople with learning disabilitiessometimes die younger than otherpeople.
This was called a Confidential Inquiry.
Report Last year the government wrote 2reports:
l one report was called Six lives andsaid what was happening to makehealthcare better for people withlearning disabilities
Report
l the other report was a reply to theConfidential Inquiry.
2
This paper is about what hashappened since then.
April 2013In April 2013 there were lots ofchanges to the way health care is run.
Organisations like NHS England, publichealth and social care must check thatthe ideas from the Inquiry happen allover the country.
3
What needs to change
The Inquiry said too many people withlearning disabilities live shorter livesthan other people because:
it can take too long to find outwhat is wrong with them
l
l they might not get treated quicklyenough
l they might not get the healthcarethey need.
What needs to change
4
Local and national health and careservices must show how they will havebetter outcomes for people withlearning disabilities.
This means thinking about how thethings they do will help people withlearning disabilities live longer,healthier lives.
5
What we found out
l things are better in some parts ofthe country or for some groups, butnot for everyone
l services must work together tomake sure everyone with a learningdisability has the same chance tobe healthy
l services need to find the righthealthcare for different people andgroups.
What we found out
6
The rest of this paper looks at each ofthe things that need to change andsays:
l what has happened so far
l what some services are doing well.
7
1. Find out who has alearning disability and whatsupport they need
People with learning disabilities oftendie from illnesses that could betreated.
EqualityAct
A law called the Equality Act saysservices must make reasonableadjustments.
This means changing things that stoppeople using a service or make itdifficult for them.
Services need to know if someone hasa learning disability and what changesthey need.
1. Find out who has alearning disability and whatsupport they need
8
What is happening now
l from this year GPs should registeror list all their patients with alearning disability. This includeschildren and young people
l services are better at finding outhow many people have learningdisabilities and sharing thisinformation
l people who run services for theNHS must show how they changethings so people with learningdisabilities can use them
l Public Health England has a list ofideas for changes that help peoplewith learning disabilities get thesame health care as other people
9
l Monitor checks healthcare services.They will ask whether patients withlearning disabilities get the rightcare and support
l we will check community healthservices give people with a learningdisability the right care
l Public Health England’s websiteshows where there are acuteliaison nurses and how to contactthem. Acute liaison nursesunderstand how to work withpatients with a learning disability
l local areas have to do a self-assessment to check the care theygive. This includes changes sopeople with learning disabilitieshave the same chance as otherpeople to get good healthcare
·
10
l NICE is an organisation that helpsmake health and social care better.They are writing new advice abouthealthcare and support whenpeople with learning disabilities:
l have challenging behaviour
l have mental health problems
l get older
11
we are finding out how manypeople with learning disabilitiesdie from more than one illness
l
l NICE will involve people withlearning disabilities when theywrite advice and information.
Doing things well
In Plymouth
A computer tells staff and communityhealth services when someone withlearning disabilities goes into hospitalor is an out-patient.
This means they get the support theyneed from staff who understand them.
12
They will check if patients do not turnup for appointments so they can makesure everything is ok.
In Sheffield
The local council has a list of peoplewith a learning disability that is linkedto GPs and hospitals.
This helps them see if people with alearning disability are getting the samehealth checks and care as otherpeople.
They are looking at better ways to planwith people and stop them needinglots of emergency care.
13
2. Make sure services worktogether
Good healthcare should look at thedifferent health problems a personhas. Not just one thing at a time.
Too many people with learningdisabilities die from things that couldbe treated.
They need the same health checks asother people so they can be treatedquickly if they are ill.
2. Make sure services worktogether
14
What is happening now
l local councils and the NHS areworking together to plan good, safecare for people who are at risk ofpoor health
l NHS England says one personshould co-ordinate or bringtogether different healthcare sopeople know who to talk to. Thismust happen for patients inhospital
l The Proactive Care Programme willhelp many people with very difficulthealth needs. Their GP will workwith them to decide the best careand support to keep them safe andhealthy
l Record many people already have healthrecords that they keep themselves.These are sometimes called HealthPassports
15
l when the NHS pays other servicesfor healthcare the contracts(agreements) must talk aboutbetter health for people withlearning disabilities
l from September there will be betterplanning for young people withlearning disabilities up to 25 yearsold
l more people will be able to choosea personal health budget which ismoney to plan and pay for yourown healthcare
l there will be better informationabout healthcare. Children andyoung people with learningdisabilities will be able to say whatthey think about care
16
l the CQC check services. They willlook at how services plan for youngpeople with learning disabilitieswhen they move to adult services
l
2014 2015 2016
yearly health checks will start whenpeople with learning disabilities are14 years old. These will link to aHealth Action Plan
l we are looking at how many peoplewith learning disabilities go forhealth checks and how to helpthem do this
l Public Health England has easyread information about things likecancer. They help servicesunderstand how to support peoplewith learning disabilities to getchecks
17
l NHS England will make sureCommunity Learning Disabilityteams support people to use thesame health services as otherpeople but have special serviceswhen they need them
l GPs are giving patients with lots ofhealth needs more support to stopthem going into hospital when theydo not need to
l we are looking at the supportpeople need to get good care froma dentist
l GPs will try to get more people withlearning disabilities and their carersto have the flu jab to stop themgetting chest infections.
18
Doing things well
In Humberside
Staff and his family use an i-Padcomputer to support a man withlearning disabilities and lots of healthneeds.
It uses photos, video and websites toexplain who is involved in his care andhow to support him properly.
In Newcastle
Health Quality Checkers work with theCQC to see how well health servicessupport other people with learningdisabilities.
They are setting up a national HealthCheckers service.
19
In Derbyshire
GPs are looking at how to get morepeople with learning disabilities tohave tests for cancer.
They have easy read information abouttests and think about changes peoplemight need.
In South Devon
They are making health informationeasier to understand and have a dropin session in libraries for people whoneed help to communicate.
20
Law Rules 3. Stick to the law and rules
MentalCapacity Act
The Mental Capacity Act (MCA) is alaw about what happens if someonecannot make a decision for themself.
MentalCapacity
Act
Workers must have good training sothey understand this law and how touse it.
All health and care services should beable to talk to someone whounderstands how to use the lawproperly.
What is happening now
l the Department of Health ismaking sure health and careorganisations know how to use thislaw
21
l GPs and other NHS staff will betrained about this law and how touse it
l there will be good, clearinformation on the internet foreveryone to use
l MentalCapacity
Act
the NHS will expect services it paysfor to understand and use theMental Capacity Act
l GPs will have extra training aboutmental health, learning disabilitiesand autism
l staff will be trained to restrain(hold) people safely and stop themhurting other people
22
l we are working with HealthEducation England on bettertraining so staff understand thelaw about restraint and keepingpatients away from other people
l sometimes people say they do notwant to be resuscitated (broughtback to life) if their heart stops. TheDepartment of Health is looking atwhat the law says about this. Weneed to decide whether thereshould be national rules about thisor local Health Trusts decide forthemselves
l we will have a card to remindeveryone about rights and peoplewho cannot decide for themselves
l Mental
CapacityAct
we are checking the informationthat tells people how to use theMCA.
23
l
l
4. Plan ahead
The inquiry said services should bebetter at thinking about problems thatmight happen.
This includes planning for when peopleneed different care.
What is happening now
looking at ways to involve patientswho are ill for a long time inplanning the care they need
helping services understand how toinvolve patients in writing their careplans and thinking about what theywant to happen in the future.
24
Doing things well
In Peterborough
Nurses said it was difficult to explainthings like taking blood pressure topeople with learning disabilities.
They held a Big Health Day wherepeople could learn about good healthand health checks.
They also had the chance to trydifferent sports and exercise.
25
l
5. Give good care to peoplewho are dying
People with a learning disability whoare dying often do not get the samesupport as other people.
This includes keeping you comfortableand trying to stop the pain.
What has happened so far
the government says patients withlearning disabilities must havegood care when they are dying
MentalCapacity Act
Other people must use the MentalCapacity Act if the person cannotmake their own decisions abouttreatment and care
26
l staff will have better training aboutthis law and how to use it
l there will be examples of how tochange things to give people withlearning disabilities good carewhen they are dying.
Doing things well
Deciding Right helps doctors makedecisions with patients who are dyingand their carers.
It thinks about the law and makingdecisions with people with learningdisabilities.
27
l
l
l
6. Keep checking whypeople die
The Inquiry said services should keepbetter information when people with alearning disability die.
What is happening now
NHS and social care services arelooking at ways to collect andshare this information
we will also look at what happenedwhen people nearly died. This willhelp us stop this happening sooften
there will be a project to look atwhy people with a learningdisability die earlier than otherpeople
28
l when they do their self-assessment, local areas say if theyknow how many people with alearning disability die each year
l NHS England is thinking aboutwhich groups could check what ishappening in their area.
29
What happens next
The Learning Disability ProgrammeBoard (LDPB) makes sure people withlearning disabilities and their familieshave better health and better lives.
We will work with them to keepchecking how things are going.
We will write reports about what ishappening. These reports and all ourpapers for the Board will be on ourwebsite.
31
Credits
This paper has been designed andproduced for the Department of Health bythe EasyRead service at Inspired ServicesPublishing Ltd. Ref ISL041/14. July 2014.
www.inspiredservices.org.uk
It meets the European EasyRead Standard.
Inspired
Artwork is from the Inspired Photocollection and cannot be used anywhereelse without written permission fromInspired Services Publishing Ltd.
www.inspiredphotos.org.uk
