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 2

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 3

 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 The People 4

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 % of people with a learning disability over 65 will develop dementia  90% of people have difficulties communicating Key Health Issues 5

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. 6

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) 7

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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)) 9

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) 10

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) 11

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 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: 20Guidance% pdf 12

/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)

How many health checks have been provided in Suffolk and in this area? LD DESLD QOF East of England Suffolk PCTEast of EnglandSuffolk PCT 2012/1357%75%48%43% East Anglia & Essex LATs Ipswich and East Suffolk CCG 2013/1444%33%  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 14

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. 15

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:  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? 16

 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 17

 Make reasonable adjustments: A link to guidance and ideas about reasonable adjustments is here: Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_ Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_ Easy read health information: 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 18

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

20 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

21  Acute hospital liaison nurses: Ipswich Hospital: Sally Ryan James Paget: Rebecca Crossley  Suffolk County Council Safeguarding Team  Mental Capacity: Independent Mental Capacity Advocates – Total Voice, Suffolk _advocacy_imca  RCGP’s Step by Step Guide on Health Checks:

22 RCGP’s Step by Step Guide on Health Checks Contents  Summary of process for annual health checks in general practice Summary of process for annual health checks in general practice  Before each individual health check Before each individual health check  Pre Check Questionnaire Pre Check Questionnaire  The Cardiff health check questionnaire The Cardiff health check questionnaire  The practice nurse’s role The practice nurse’s role  The GP’s role The GP’s role  Health check action plan examples: Health check action plan examples  Syndrome specific medical health needs and checks Syndrome specific medical health needs and checks Downs syndrome Fragile X syndrome Rett’s syndrome Williams syndrome Mental capacity toolsMental capacity tools: Consent Pathway; Best Interest Pathway Consent PathwayBest Interest Pathway Sources of Information and Support