Why do we eat?

Why do we eat?

OK: Diabetes Looking after yourself when you have Diabetes NIHR HTA funded (10/102/03) Leeds Institute of Health Sciences Faculty of Medicine & Health University of Leeds The views expressed here have been my own and not necessarily those of the HTA, NHS, the NIHR or the Department of Health. THE RATIONALE FOR THE RESEARCH

Learning disability and physical health: 2007 MENCAP wrote Death by Indifference 6 people with LD who had avoidable deaths. 2013 CIPOLD is the Confidential Inquiry into Premature deaths Of people with Learning Disabilities. CIPOLD: the main findings: Study of deaths over 2 years 2010-2012 in South West England, population 1.7million Anybody >4years with a LD, N=247

Commonest causes heart disease and cancer Men with LD die on average 13 years earlier than general population (mean 65 years). Women with LD die 20 years earlier than general population (mean 63 years). Learning disability and physical health: Many long term physical conditions are commoner in LD Self-management is a standard part of the NHS response to long-term conditions. Mental health problems are commoner*

in association with a learning disability People with mental health problems struggle with self-management programmes OK Diabetes: the research question: It is unclear whether supported selfmanagement would be of benefit in improving the health of people with mild/moderate learning disability and type 2 diabetes. So Is it possible to develop a programme of supported selfmanagement for people with mild/moderate learning disability in the community

who have type 2 diabetes and dont use insulin? and evaluate it in an RCT? FINDING THE RESEARCH PARTICIPANTS Case finding Cant just rely on GP registers > people with moderate to severe LD (typically 0.5% list size) So, in addition Recruitment from LD community

teams, mental health services, diabetes clinics, LD liaisons at hospitals, specialist dentistry Recruitment from Adult Social Care, Housing, Charities, CAB, Support Services, Advocacies Participants lives: o Average age 56 years, M=F o 1/3 people live alone o 1/5 had no help shopping, cooking or going to appointments o Only 26% (n = 32) go on the internet on a

phone or computer. Of those, 34% need help using the internet. o 25% are employed or volunteer (90% part time) Health and lifestyle 21% smoked 60% consumed full sugar drinks and/or ate sweets every day 40% had mobility problems 49% had problems with teeth and gums 30% missed medication regularly

1. What people told us: Carers and supporters often change and if they hold all the health information it sometimes doesnt get passed on. People had no idea why exercise helped diabetes; 1/3 said they found being active difficult People didnt understand the impact poor diabetes control could have 2. What people told us: HbA1c mean

BMI mean Feel sad/miserable 83/146 (57%) 7.1 34 Unhappy about diabetes

51/141 (36%) 6.9 35 Unhappy about weight 81/143 (57%) 6.8

35 Unhappy about diet 48/141 (34%) 7.2 30 Not enough activity 39/122 (32%) 7.2

34 Want help with diabetes 7.1 33 123/145 (85%) v. Supported selfmanagement Supported by diabetes nurse

Typically 4 sessions: Daily routine and lifestyle Supporters + helpers Setting realistic goals Monitoring progress Diabetes UK > resources > resources to RESEARCHING WITH PEOPLE WITH A MILD OR MODERATE LD assessing mental capacity making reasonable adjustments using understandable and reliable measures

Assessing mental capacity MCA - Five statutory principles 1. 2. 3. 4. 5. Presumption of capacity All practicable steps to help make a decision Unwise decision does not = no capacity In best interests

Least restrictive To protect and enable participation Inability to make a decision Understand (simple language) What

Purpose Nature Why Principle benefits Risks Alternatives Understand (broad terms) Consequences of not consenting Retain long enough to make

an effective decision Free Choice Assessor determines whether the individual is able at the time when a particular decision has to be made to understand its nature and effects Time-specific Decision- specific Helping people make decisions

Provide relevant information Communicate in an appropriate way Make the person feel at ease location/timing Support the person 2 stage test of capacity 1) impairment 2) linked with inability to make a decision Unable to make a decision if

Unable to : Understand relevant information Retain that information Use it or weigh it Communicate their decision Making reasonable adjustments Intervention/support materials Research materials and processes LD and research. The Mental Capacity Act - strict research rules useful research can take place

protect people who do not have capacity Research Ethics Committees Consent (not a medicinal trial) writing, orally, or nonverbally (Health Research Authority, 2017) Research rules: safe and about relevant condition likely to help the person or people like them minimal risk of harm happy to take part must stop if show do not want to take part anymore family/carers/ independent person must agree

they can refuse if they think the person would have refused Conducting research in adults with mild LD NHS providers legally need to fully implement the accessible information standard by 31 July 2016. 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 make them as accessible and effective as they would be for people without disabilities. Explaining research in an accessible way.. 147 from case finding 132 agreed to further contact 127 contacted 98 visit by researcher 82 eligible and randomised

75 followed up with primary outcome Using understandable and reliable measures PHQ2 (mood) & EQ-5D (quality of life) 50% experienced some difficulty with PHQ2 24% scored above the cut off for possible major depression 60% had difficulty with EQ-5D -Although participant was able to read the cards, he initially answered he had no problems with walking. However, this had to

be clarified since he'd told me that he walks using a stick Distribution of HbA1cCh 30 N Mean SD Median Min Max

25 20 37.00 -0.17 0.57 -0.18 -1.55 1.38 15 10

HbA1c change scores 5 0 30 N Mean SD Median Min Max

25 20 38.00 -0.04 0.48 -0.14 -0.92 1.37 15 SSM 0.17 (sd 0.57) ES 0.3

10 TAU 0.04 (sd 0.48) ES 0.08 5 0 -1.75 -1.50 -1.25 -1.00

-0.75 -0.50 -0.25 0.00 0.25 0.50 0.75

1.00 1.25 1.50 1.75 HbA1c Change (absolute on % scale) Distribution of BMIF25Ch

30 N Mean SD Median Min Max 25 20 36.0

-0.5 1.5 -0.3 -4.3 3.2 15 BMI change scores 10 5 0

30 N 40.0 Mean 0.0 SD 1.0 Median -0.1 Min -2.0 Max 3.0

25 20 15 10 SSM 0.5 (sd 1.5) ES 0.33 TAU 0.0 (sd 1.0) ES 0 5 0 -5.0 -4.5 -4.0 -3.5 -3.0 -2.5 -2.0 -1.5 -1.0 -0.5

0.0 0.5 1.0 1.5 2.0 2.5 3.0

3.5 4.0 BMI Change Individual RCT N=82, 4-6 month follow up. Retained in RCT and outcomes collected in 94% DISSEMINATION AND IMPACT Improving care for people

with diabetes and a learning disability Information Graphics 10% of people with a learning disability have diabetes. A woman with a learning disability is likely to die on average 18 years before a woman without a learning disability.

This is 6570 days. Thats a lot of cups of tea, chats with friends, days at work, watching favourite TV programmes, country walks... v. Supported selfmanagement Supported by diabetes nurse Typically 4 sessions: Daily routine and lifestyle Supporters + helpers Setting realistic goals

Monitoring progress Read code searches Report 1: Potential LD for ALL patients optional Report 2: Potential LD AND T2 Diabetes (not insulin) please review Report 3: Your LD register Report 4: Your LD register AND T2 Diabetes (not insulin) all potentially eligible The Learning Disability Right Care Optimal Value Pathways project (NHS England)

https://www.england.nhs.uk/rightcare/ products/pathways/diabetes-pathway/ The team:Allan House; Louise Bryant; Gary Latchford Amy M. Russell LIHS Amanda Farrin; Rebecca Walwyn; Liz Graham + CTRU Claire Hulme Health Economist Shaista Meer; Jakki Birtwistle;

John ODwyer RFs Dinesh Nagi; Ramzi Ajjan Diabetes Alison Stansfield Learning disability Claire Seymour, Gemma Doran, Paul Carder CSU PPI Kath Lindley (Tenfold) Aqila Choudhry (People in

Action) John Burley (easy on the i) Thank you to People In Action Easy on the i

Tenfold CHANGE Diabetes UK Thank you!

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