Transcript Improving the health of people with a learning disability through

Improving the health of people with a learning
disability through health checks
Ipswich and East Suffolk GP Practices
Gerry Toplis, Independent Consultant
May 13th 2015
Who are people with a learning disability?
Definition of learning disability
1. A significantly reduced ability to understand new or complex information and
to learn new skills (impaired intelligence)
2. A reduced ability to cope independently (impaired social functioning)
3. Needs that started before adulthood, with a lasting effect on intelligence
(Valuing People 2001)
Often includes people with autism
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Prevalence for the 18+ learning disability population
'Whole' learning disability population: 20 per 1,000 population
'Severe' Learning Disability: 4.6 per 1,000 population (known to local authority
and health specialist learning disability services)
People with a learning disability who also have autism: 20% to 30%
The population is increasing as more young people survive into adulthood and
people grow older
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The People
People with a learning disability are living longer; the younger age groups have more
complex and profound needs
People want good health to have lives like the rest of the community e.g. housing,
jobs, relationships, children
People live with their families; in supported living; in residential care.
The awareness of those around them about health issues varies(!)
People with a learning disability and family carers are:
 Life long users of health services: they need health services to deliver good health
outcomes throughout their lives
Significant experts and stakeholders in health services
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Key Health Issues
1. People with a learning disability have worse health than the general population
Higher rates of respiratory disease (19.8%)than the general population (15.5%), and
causes 50% of deaths
Higher rates of epilepsy (5%) than the general population (0.5%)
 Higher rates of obesity - average BMI of 28.3 compared to 20.4 for the general
population
30% of people have significant sight problems and 40% with significant hearing
problems
3 to 4 times more likely to become mentally unwell – psychosis and depression
People with Downs Syndrome at risk of dementia from age 35. 20% of people with a
learning disability over 65 will develop dementia
90% of people have difficulties communicating
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2. People with a learning disability have unequal access to general health services
Both primary and secondary care
A lack of reasonable adjustments
Lack of recognition of the greater health needs of people with a learning disability
amongst health and social care staff
A tendency for diagnostic overshadowing.
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Reasonable adjustments
‘It is a statutory requirement under the Equality Act 2010 and the NHS and Social
Care Act 2008 that public sector agencies make 'reasonable adjustments' to their
practice that will make them as accessible and effective as they would be for
people without disabilities. Reasonable adjustments include removing physical
barriers to accessing health services, but importantly also include making
whatever alterations are necessary to policies, procedures, staff training and
service delivery to ensure that they work equally well for people with learning
disabilities’
(2014/15 General Medical Services Contract Quality and Outcomes Framework, p
113)
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3. A greater risk of premature death
42% of deaths of people with a learning disability are considered to be premature.
with respiratory disease causing 50% of deaths of people with a learning disability
60% (60 in 100) of child and 40% (40-100) of adults deaths related to epilepsy may be
avoidable
Fewer deaths of people with learning disabilities (38%) were reported to the coroner
compared with the general population (46%)
(Confidential Inquiry into Premature Deaths of People with a Learning Disability
(University of Bristol 2013))
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The Evidence
Equal Treatment: Closing the Gap (Disability Rights Commission: 2006)
Death by Indifference (Mencap: 2007)
Healthcare for All national inquiry (Sir Jonathon Michael: 2008)
Six Lives (The Health and Parliamentary Ombudsman and Local Government
Ombudsman: 2009)
74 Lives and Counting (Mencap 2012)
Health Inequalities and People with Learning Disabilities in the UK: 2012 (Improving
Health and Lives Learning Disability Public Health Observatory)
Confidential Inquiry into Premature Deaths of People with a Learning Disability
(University of Bristol 2013)
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Learning Disabilities Directed Enhanced Service (DES)
 Introduced in 2009/10 in response to Healthcare for All (2008) identifying the greater health
needs of people with a learning disability and their lack of access to health services:
•Learning Disability Register: to include anyone with a learning disability known to the local
authority
•People aged 18+
•An annual health check for everyone on the Register
•Payment to practices for each completed health check
 A Health Check is ‘the first important building block in providing better quality and more
appropriate services for this patient population’ (Framework guidance for GMS contract
2014/15)
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Learning Disabilities Enhanced Service 2014 onwards
DES revised in 2013 following the publication of the Confidential Inquiry into Premature
Deaths of People with a Learning Disability (University of Bristol 2013)
Enhanced Service Contract introduced in 2014/15 and continues in 15/16
• Now covers ages 14-17 and 18+
• LD ES Register based on the QOF register and people known to the local authority.
• The register will need updating each year.
• An annual health check for everyone on the register
• Health checks should lead to a Health Action Plan shared with the person and, if appropriate,
their paid or family carers
• The number of declined health checks will be reported.
• Payment of £116 per completed annual health check
• The practice will be expected to have attended a multi-professional education session
2015/16 General Medical Services (GMS) contract for the Learning Disability Health Check
Scheme:
http://www.nhsemployers.org/~/media/Employers/Documents/Primary%20care%20contracts/GMS/GMS%
20Guidance%202015.pdf
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2015/16 General Medical Services (GMS) contract: LD Health Checks
As a minimum, the health check should include:
a collaborative review with the patient and carer (where applicable) of physical and mental
health with referral through the usual practice routes if health problems are identified, including:
• health promotion
•chronic illness and systems enquiry
•physical examination
•epilepsy
•dysphagia
•behaviour and mental health
•specific syndrome check
a check on the accuracy and appropriateness of prescribed medications
a review of whether vaccinations and immunisations are up-to-date
a review of coordination arrangements with secondary care
a review of transition arrangements where appropriate
a discussion of likely reasonable adjustments should secondary care be needed
a review of communication needs, including how the person might communicate pain or
distress
a review of family carer needs
offering support to the patient to manage their own health and make decisions about their
health and healthcare, including through providing information in a format they can understand
any support they need to communicate.
use an accredited protocol agreed with the commissioner (e.g. the Cardiff health check) 13
How many health checks have been provided in Suffolk and in
this area?
In 2013/14 78% of GPs in Ipswich and East Suffolk CCG were signed up to
deliver the Enhanced Service
% of people eligible for a health check receiving a check
LD DES
2012/13
2013/14
LD QOF
East of
England
Suffolk PCT
East of England
Suffolk PCT
57%
75%
48%
43%
East Anglia &
Essex LATs
Ipswich and
East Suffolk CCG
44%
33%
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What will improve the numbers and quality of health checks?
Some suggestions for the CCG, the NHS England Area Team and Suffolk County
Council
Agree a process for providing practices with annual updated lists of young people and
adults with a learning disability known to Suffolk CC
Agree a training programme for GPs, practice nurses and other practice staff
Agree a single, coordinated approach to the completion and use of Health Action Plans
Move forward with learning disability link nurses for GP practices
Engage with social care providers to ensure that contracts and monitoring take into
account the need for staff to understand and act on the health needs of each person with
a learning disability.
Work in 2013/14 by the east of England Learning Disability Managed Clinical Network
with the east of England ADASS Strategic Procurement Team laid the basis for this.
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Some suggestions for GP Practices
Sign up to the Enhanced Service contract to deliver better health for your patients who have a
learning disability
Read and implement the RCGP’s Step by Step Guide on Health Checks:
http://www.rcgp.org.uk/learningdisabilities/
Identify a lead GP and a lead Practice Nurse for learning disability to develop expertise and
lead an improvement plan. Meet regularly to review progress with the improvement plan and
the delivery of health checks through the year.
Carry out a rough estimate of how many people you should have on your Learning Disability
Health Check Register (about 4.6 per 1,000 population) and compare to the current number.
Have you identified the numbers expected?
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Review your health check appointment system:
•Easy read letters
•Assertively reach out when someone has not taken up a health check appointment after
the second missed appointment and offer solutions e.g. a home visit; a more convenient
day / time; a reminder of the importance of the health check.
•If the check is declined, reschedule for a year after the first missed appointment, not the
second or third one.
•Don’t leave the appointments until the final quarter of the year – no good for you and no
good for the quality of health checks.
•Offer double appointments
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Make reasonable adjustments:
•A link to guidance and ideas about reasonable adjustments is here:
•http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/
Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_109753
•Easy read health information:
•http://www.easyhealth.org.uk/
•http://www.rcpsych.ac.uk/publications/booksbeyondwords.aspx
•Don’t forget – each individual is different, so check with them and their family or paid
carers what adjustments they might need.
Consider the health needs of family carers when arranging health checks
Be clear about reporting safeguarding concerns if people are not being supported to
attend for a health check or to have their health needs met.
Make sure your Learning Disability Register is linked to other registers e.g. epilepsy,
cancers
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Other sources of support
Norfolk and Suffolk NHS Foundation Trust
Community services that are available now
People with mental health problems and learning disabilities
People with autism/learning disabilities and challenging behaviour
Support from a team that includes nurses, psychiatrists, occupational therapists, psychologists,
speech and language therapists and art psychotherapists
Delivered from five Integrated Delivery Teams
Referral via Access and Assessment on 0300 123 1334
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Learning disability GP liaison nurse pilot project
Brief assessment and signposting to other agencies, other health services or IDT via AAT
Early detection of health issues
Supporting GP practices to improve LD registers
Raise knowledge of LD and health issues in the practice through training and co working
Health promotion regarding issues related to learning disability
Health facilitation to support access of patients to other areas of the practice as well as
other health services, including negotiating reasonable adjustments
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Acute hospital liaison nurses:
•Ipswich Hospital: Sally Ryan
[email protected]
•James Paget: Rebecca Crossley
[email protected]
Suffolk County Council Safeguarding Team
Mental Capacity: Independent Mental Capacity Advocates – Total Voice, Suffolk
http://www.voiceability.org/in_your_area/suffolk/independent_mental_capacity
_advocacy_imca
RCGP’s Step by Step Guide on Health Checks:
http://www.rcgp.org.uk/learningdisabilities/
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RCGP’s Step by Step Guide on Health Checks
Contents
Summary of process for annual health checks in general practice
Before each individual health check
Pre Check Questionnaire
The Cardiff health check questionnaire
The practice nurse’s role
The GP’s role
Health check action plan examples:
Syndrome specific medical health needs and checks
•Downs syndrome
•Fragile X syndrome
•Rett’s syndrome
•Williams syndrome
Mental capacity tools: Consent Pathway; Best Interest Pathway
Sources of Information and Support
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