Addressing Diabetes in Learning Disability: Importance of Reasonable Adjustments

1. Diabetes and Learning Disability Dr Andrew Lee Y&H PHE Centre Lead for Learning Disabilities Andrew.lee@phe.gov.uk

2. Health profile of people with learning disabilities • In 2011, there were ~1.2 million persons with learning disabilities in England • 905,000 were adults (aged over 18 years) • 530,000 were men, 375,000 were women • ~170,000 were children on school registers (2.5%) • Considerably more people with learning disabilities in poorer households This Photo by Unknown Author is licensed under CC BY

3. How many people are there in Yorkshire & the Humber with learning disabilities ? Population estimates based on LDO prevalence of 2.16% QOF prevalence of 0.53%.

4. Age profile of people with learning disabilities in Yorkshire & Humber in 2016

5. Co-morbidities 1 in 10 have diabetes!

6. What are the common causes of death in people with learning disabilities?

7. Mortality

8. Premature mortality • Confidential Inquiry into Premature deaths in People with Learning Disabilities (CIPOLD), 2011 reported: • 42% of deaths considered to be premature • The most common reasons for premature death were problems with: • investigating or assessing the cause of illness • treating their health problems LIFE This Photo by Unknown Author is licensed under CC BY-NC

9. Premature mortality • BMA(2014) reported: • Excess morbidity and premature mortality predominantly result from a failure to adequately diagnose, treat and prevent comorbid physical health conditions in people with a learning disability. • In the worst cases, people receive less than optimal medical care and unnecessarily have unmet health needs. • Research by Mencap (2012) found cases of DNAR orders being inappropriately applied to people with LD

10. Contributing factors • Lack of awareness of their health needs amongst health care staff. • Lack of effective advocacy for people with multiple conditions and vulnerabilities. • Lack of priority given in the NHS generally • Lack of coordination of care across and between different disease pathways and service providers. • Problems with identifying needs • Difficulty providing appropriate care in response to changing needs. TRANSITIONS ARE PROBLEMATIC Source: CIPOLD (2011)

11. Contributing factors • Low take-up for national screening programmes • Diagnostic overshadowing • Delays or problems with diagnosis or treatment • Communication problems during the consultation. • Lack of time to conduct an adequate consultation. • Patient inhibitions because of previous negative encounters SOURCE: CIPOLD & McCarthy M. Exercising choice and control–women with learning disabilities and contraception. British Journal of Learning Disabilities. 2010 Dec 1;38(4):293-302.

12. Contributing factors • Lack of reasonable adjustmentsto help people to access healthcare services. • Inflexible organisational policies, procedures and practices • E.g. many deaf people or those with a hearing impairment were forced to make contact with their GP using a method that was not the best for them • 90% of GP surgeries in Wales did not offer suitable alternatives for making appointments.

14. Equality Act 2010 • When we’re making decisions, the Equality Act 2010 gives us a duty to take into account the need to: • eliminate discrimination, harassment and victimisation • advance equality of opportunity • foster good relations between different parts of the community • This covers, age, disability, gender reassignment, marital or civil partnership status, pregnancy and motherhood, race (including ethnic or national origin, colour and nationality), religion or belief (including lack of belief), sex and sexual orientation.

15. What are reasonable adjustments? • Reasonable adjustments are changes or additions to existing services designed to make them more accessible and effective for disabled people. Their aim is to ensure that disabled people are not excluded from services, and can achieve the same outcomes as those who are not disabled. • Three things to consider when making reasonable adjustments: • Does the diabetes service have all the components it needs to ensure accessibility to and effectiveness for PwLD? (ACCESSIBLE) • Are there systems in place to ensure individuals are assessed and the appropriate adjustments are made to meet their personal needs? (MEETS NEEDS) • Do the people in the service have the right knowledge and skills? (STAFF TRAINED)

16. Learning Disabilities Register • Get them on your GP Learning Disabilities Register. You can’t make reasonable adjustments if you haven’t identified them. • Flag it on your GP systems and use it to alert and remind practice staff of the need to make adjustments. • Don’t forget the carers, who often ignore their own health needs. They’re entitled to flu jabs too!

17. Diabetes and Learning disabilities: Reasonable adjustments needed along diabetes pathway

18. People with learning disabilities (PwLD) at higher risk of developing Type 2 diabetes • More sedentary lifestyle, low levels of exercise • Consuming high fat diets • Being prescribed high levels of antipsychotic medications which can contribute to obesity This Photo by Unknown Author is licensed under CC BY-SA This Photo by Unknown Author is licensed under CC BY-SA (Source: MacRae et al, 2015; Walwyn et al, 2015 and McVilly et al, 2014; Taggart and Cousins, 2014).

22. Benefits of intervention • Reductions in: • Complications arising from diabetes, • e.g. amputations • Diabetes related A&E attendances • Visits to GP • Missed appointments • Reduce lengthy hospital stays • Diabetic crises are a common cause of hospital admissions amongst PwLD, accounting for 7 - 7.5% of potentially avoidable admissions (Glover and Evison, 2013). This Photo by Unknown Author is licensed under CC BY-SA

23. Where Reasonable adjustments are particularly essential • Tests and investigations • Structured support programmes to support health lifestyles, and structured education • Weight management programmes • Supported self-management of diabetes • Personalised care planning

24. Identification of Diabetes Mellitus • Annual Health Checks • Adapted Diabetes Prevention Programme (where available) or other local lifestyle change programmes with reasonable adjustments • Where obesity is a significant problem, a specific weight loss programme is indicated, rather than a more generic lifestyle programme. • Individuals, who decline support in lifestyle change or weight loss should continue to be offered it and it is important to review capacity, explore reasons for refusal and provide reasonable adjustments if required.

25. ANNUAL HEALTH CHECKS • Not to be confused with NHS Health Checks • £140 for each patient aged 14 or over who received a compliant health check • Series of questions that cover a range of issues from sex, disease screening to vulnerability. • Linked to Health Action Plans • Important tool for detecting issues • RCGP has a useful toolkit on how to do it

26. Uptake of Annual Health Checks Less than half!

27. Annual Health Checks:Opportunity for health promotion • (Unhealthy) Lifestyle behaviours common: • Lack of physical activity • Poor diets • Alcohol, Tobacco and Drug use • Sex

28. Annual Health Checks • Dental health • Eye checks • Hearing • Feet • Screening tests • Flu jabs

29. Detect longer term health problems • Epilepsy • Mental health • Dementia • Thyroid problems • Diabetes • Heart disease & strokes • Dysphagia • Asthma / respiratory problems • Mobility

30. Responding to the initial diagnosis • Clinicians should check the person’s understanding of diabetes and be aware of their mood in response to diagnosis. • An initial assessment meeting can be facilitated by a learning disability health professional (e.g. a Learning Disability Nurse). • Some parts of the initial assessment (e.g. referral for diabetic retinopathy screening) could be delivered better at a later appointment. • It may be necessary for the initial assessment for diabetes management that PwLD are offered a phased series of appointments. • Part of the initial assessment is a requirement for a psychological assessment; which could be enhanced by an appropriately trained practitioner, able to make reasonable adjustments and has access to learning disability expert professionals.

31. Tests and investigations • Two key features for reasonable adjustments: • Use of accessible material ensures good understanding of procedure • Always involving carers where possible. • PwLD have higher rates of physical and mental health problems, problematic health behaviours, plus the stress of illness. Can aggravate glycaemic control and necessitates more frequent monitoring of blood glucose and urine or blood ketones. • Where multimorbidity occurs, conflict between the recommendations for different diseases may occur. Need shared decision making with the individual and their supporter/carer to make decisions which patients find most appropriate to them This Photo by Unknown Author is licensed under CC BY-SA

32. Issues with procedures • They may be very fearful of medical procedures and examination! • Familiarise them with procedures and clinical settings in advance. • Use dolls, etc… to demonstrate the procedure • Have you got topical anaesthetics for painful procedures? • Are there any videos you can show them? • https://www.youtube.com/watch?v=c4gVGmllu7c

33. Structured support • DESMOND structured education programme recommended as routine. • Has been adapted for adults with a learning disability. Can be delivered in a community setting, over 6-weeks, with 1 session per week, each ~2.5 hours, to PwLD and their carers. • DESMOND-ID programme had an additional education session aimed at family/paid carers to support their understanding about Type 2 diabetes and their specific role in supporting the PwLD. • Initial results suggest that such a multi-session education programme can be acceptable and feasible to deliver. • Important for commissioners to work with other providers of structured education in making the necessary reasonable adaptions to meet the needs of PwLD.

34. Weight Management Programmes • Adapted Weight Management Programmes do work! • Commercial programmes such as Slimming World have been adapted and achieve good rates of weight loss in those who attend (Croot, 2016).

35. Supported self-management • With support, many PwLD can set goals for self-management and participate in discussions about how to achieve them. • To achieve self-caring, education has a role, beginning from diagnosis to ongoing care. • Family members, advocates or paid support staff can make significant contributions the effectiveness of treatment by being part of: • Care planning and implementation • Identification of areas of risk, contributing to risk management plans. • Support staff need training in supporting self-management in diabetes • Should be given adequate and accessible information to increase opportunity to make informed decisions. • Mental Capacity Act training required for staff

36. Type 1 Diabetes Mellitus • Low literacy and comprehension levels can make it difficult to learn new skills such as: • monitoring blood glucose levels, • injecting insulin or • learning how to use a new insulin device. • Use of colour coded blood glucose monitors and structured education material for PwLD helpful.

37. Type 2 Diabetes Mellitus • The OK Diabetes study (Walwyn et al, 2015; House et al, 2016) developed a well supported self-management plan involving professional support via DSNs. The following elements needed before a supported self-management plan is devised: • An individual’s daily routine and lifestyle including current diet, social/work activity routines, food shopping and food preparation, • Current self-reported health and self-management, identifying all supporters and helpers and who the key supporter is and their role in the life of the person with diabetes. • Goal setting should be realistic and done in collaboration with the PwLD aiming to involve the person in any lifestyle changes • Support should be given to goals suggested by the PwLD with diabetes that are specific, simple and achievable given the person’s current routines and social support (Walwyn et al, 2015; House et al, 2016).

38. Person centred care planning • For everyone with diabetes there should be an annual care plan review. • The management of diabetes for PwLD should be reflected in the Health Check Action Plan (HCAP) which is an outcome of the AHC. • The HCAP enables PwLD gain control and own their health needs and together with their GP plan how to meet these needs. • The HCAP should detail how the individual’s diabetes will be managed. • Might involve referral to DSNs who will together with the individual agree on goals and actions to be set out in the Diabetes Care Plan. • Care planning appointment with the Diabetes team should discuss results of the diabetes annual check • PwLDs and their carers may require more support from DSNs, Practice Nurses, GP and Community Learning Disability Teams. • Address mental health needs of a person with diabetes.

39. Accessible Information Standard (2016) Requirement! Make sure the information we give is accessible and understandable. Use EASY READ leaflets Use pictorial communication aids like social stories

40. Improving communication • Medical information is often confusing for the patient/carer • Provide easy read if possible • Write it down • Use pictures, large print and simpler words • Let them audio record the consultation • Allow in their carer to help them remember things

41. Appointments • Remember they often have multiple health appointments to attend… • Help them to plan appointments in advance if possible • Be flexible with providing them appointments • Do they need more time with the GP? • Book a double appointment • Book the last slot of the clinic session

42. Other Reasonable Adjustments • Their needs may be very specific. • If they need reasonable adjustments can they make arrangements with someone nominated in the practice for this (e.g. senior receptionist or practice manager in advance) • They may be unsettled in the waiting room (claustrophobic, too much stimulation/noise, boring, etc…) • Have them wait outside (e.g. in the car) & make an arrangement with the receptionist to call them in? • Get the first appointment or end of the day when it is quieter? • Arrange a home visit in advance?

43. Parents & Carers • They are not the enemy but valuable allies! • Remember that being a carer is extremely demanding and exhausting, and many may be ‘on the edge’ • They also know the PwLD well, what’s normal, what’s not, how they communicate, how they express pain etc… Many of them do have the patient’s best interest at heart. • At the end of the day health professionals may only see the ‘challenging’ patient once, but the parent/carer has to deal with it all the time…

44. Other considerations • They are vulnerable adults to exploitation, abuse, domestic violence and assault. • Lack of ‘problem-solving skills • Lack insight into dangerous/risky situations • Older PwLD may no longer have family carers to look out for them. • Issues around mental capacity • Coordination of care – Who’s taking responsibility? • It is important to maintain consistency of care teams

45. Features of successful programmes • Successful programmes adapted to meet the needs of PwLD are seen to have addressed the following: • - Provision of adequate and accessible information to enable full participation • - Accommodating views of those with a learning disability • - Family/carer involvement also supporting their understanding of diabetes • - Short sessions with PwLDand their carers • - Programme rolled out over longer periods in community settings • - Realistic goal setting

46. What this means for Commissioners • Know your population • Increase uptake of Health Checks • Avoid unnecessary hospital admissions • Reduce lengthy hospital stay • Support healthy lifestyle • Supporting structured education and self-management

47. Diabetes UK recommendations • Make information accessible • Provide training for staff • Address social barriers • Involve supporters • Plan for and make reasonable adjustments

48. Resources • NHS England (2017): Rightcare pathway: Diabetes - Reasonable adjustments for people with a learning disability who have diabetes. • https://www.england.nhs.uk/rightcare/wp-content/uploads/sites/40/2017/11/rightcare-pathway-diabetes-reasonable-adjustments-learning-disability-2.pdf • Diabetes UK: How to make reasonable adjustments to diabetes care for adults with a learning disability • https://www.diabetes.org.uk/resources-s3/2018-02/Diabetes%20UK%20-%20How%20to%20make%20reasonable%20adjustments%20to%20diabetes%20care%20for%20adults%20with%20a%20learning%20disability.pdf

49. Patient quotes

50. Understanding of food choices • ‘I can eat fruit but can’t eat crisps – it’s difficult to not eat the things the doctor said not to’ • ‘I don’t know what to eat or how to control it. I wasn’t given a diet sheet’ • ‘Dieticians and sheets don’t always work – if you don’t know what moderation is then you can’t do it’ This Photo by Unknown Author is licensed under CC BY-NC-ND This Photo by Unknown Author is licensed under CC BY-SA