1. Achieving Health Gain for People with Learning Disabilities in General Practice Facilitated by Annie Webster, Ipswich and East CCG/West Suffolk CCG (RNLD DipHe BSc hons MSc) and John Stevens Parent Carer Annie and John are Joint Leads in Pathway for Health Safety and Wellbeing Suffolk Learning Disability Strategy

2. Health gain for PWLD Parameters of health gain are concerned with  Health protection  Health promotion  Health intervention Parameters of health gain are concerned with  Health protection  Health promotion  Health intervention

3. The Equality Act 2010 Under English Equalities Law, public sector organisations are required to tailor the way they provide care so that people with disabilities are not disadvantaged. Law governing the regulation of healthcare makes explicit the requirement for healthcare providers to make reasonable adjustment at the point of access to services that is anticipatory.

4. Mental Capacity Act 2005  Assumes that the person has capacity  Is clear that when assessing capacity the burden of proof must be that there must be a burden of proof to determine whether the person does not have capacity.  This must be assessed on each event.  Practitioners must evidence processes used when determining capacity and making best interest decisions

5. Factors that influence health gain and positive health outcomes for PWLD Higher predisposition ill health Syndrome related pathology Level of learning disability Co-morbidity Polypharmacy Lifestyle/levels of support Long term management of chronic health care conditions

6. Parameters of Learning disabilities  Difficulties with Cognition  Difficulties in Communication  Difficulties in social functioning  Difficulties in responding to and operating in established norms and patterns of social convention.  Difficulties in adapting to unfamiliar environments

7. Cognition Defined as The mental action or process of acquiring knowledge and understanding Assessment of cognition is required to ascertain an individuals capacity and need for assistance in decision making in all aspects of their treatment and care.

8. Impact of reduced cognitive ability “A reduced ability to understand new or complex information”

9. Knowledge by association is a complicated process

11. Complex concepts and ideas are hard for PWLD to Understand  To enable a person with learning disabilities to develop health literacy, concepts must be explored and explained in a measured way to enable people to process information  A staged approach enables you to assess the persons understanding  Greater understanding will support the person with learning disabilities to make decisions about their health.

12. Cognition Think how this happens in your surgery. How might it be different?

13. Communication  We communicate in ways that are meaningful to us.  We make adjustments in how we do this in every consultation with patients we meet every day.  We do this implicitly and often in a responsive way.  In general terms communication is not planned  So How does it work?

14. Expressive Communication Expressive language/communication is the use of words to form sentences in order to communicate with other people. Difficulties in using expressive language to communicate can range from difficul ties  putting words in the right order,  being unable to form words in a meaningful way that others can understand,  having no expressive vocabulary at all

15. Expressive communication  When a person is unable to make use of expressive language, the result in frustration at not being able to explain themselves, difficulty interacting with other people, and difficulty expressing their needs.

16. How does problems with expressive communication influence health gain How does problems with expressive communication influence health gain ? Difficulties in articulation symptoms of illness/pain/discomfort leading to poorer health outcomes and unmanaged need May result in frustration leading he person to express themselves in other ways e.g. using behaviours that can be seen as challenging. Affects the individuals ability to demonstrate capacity in decision making. The person may disengage with health services and resulting on poor short and long term health outcomes.

17. Receptive communication  Involves the understanding of expressive language. The use of receptive language is not dependent on being able to use expressive language.  Some people with learning disabilities may not be able to form words and sentences themselves, but are able to understand expressive language when it is used by others

18. Receptive communication  Abilities can range from being able to understand what others say, to only being able to comprehend key words and phrases.  Everyone is different; some people may be able to use both receptive and expressive language to different degrees, whilst others may be able to use one or neither.

19. How does problems with receptive communication influence health gain? Understanding self care instructions Changes in medication Options for treatment

20. Communication Think communication and how this happens in your surgery. How might it be different?

21. Getting the best from a consultation Promoting  good access to services and reducing barriers (e.g. telephone triage) Managing  the environment making reasonable adjustment, time and location of consultation. Awareness  of Reasonable adjustments that will enable the person with learning disabilities to engage in the consultation

22. Getting the best from a consultation Investing your time to save time  double appointments gives the opportunity for the person with learning disabilities to ensure that health need is identified and that there is sufficient with communicate and discuss any treatment Consistency  as far as possible it is helpful for people with learning disabilities to see the same doctor and members of the practice team, this promotes familiarisation, confidence and shared decision making which is ethically sound and within governance frameworks.

23. Framework for facilitating health Gain Health Checks and Health Action Planning  In 2006 the Disability Rights Commission recommended the introduction of annual health checks for people with learning disabilities to address the significant health inequalities the contribute to greater morbidity and earlier mortality.

24. Health Check and Health Action Planning  In April 2014, a new enhanced service (ES) was introduced, which built on the previous directed enhanced service, to extend eligibility to young people with learning disabilities aged 14 and over, and to require participating practices to produce a health action plan linked to each person's health check  The Directed Enhanced Service was based on evidence about the effectiveness and value of health checks in mitigating the health inequalities faced by people with learning disabilities.

25. Why complete Annual Health Checks and Health Action Plans  People with learning disabilities may be experiencing new health problems or changes to existing conditions.  Primary care services can be to be reactive, and this can lead to misdiagnosis or undetected health problems.  People with learning disabilities may be unaware of the medical implications of symptoms they experience and have difficulty communicating their symptoms and be less likely to report them to family, carers.

26. Why complete Annual Health Checks and Health Action Planning  Carers may not always attribute the manifestations of clinical symptoms to physical or mental illness.  Health checks provide a way to detect, treat and prevent new and/or unmet health conditions in this population.

27. Annual Health Checks and Health Action Plans Specific targeted learning disabilities health checks are designed to pick up a wider range of unmet health needs Generally these are all the things that people who do not have a learning disability would normally go to their doctor for unprompted

28. Benefits of Annual Health Checks There is clear evidence to suggest that the provision of health checks for people with learning disabilities in primary care is effective in identifying previously unrecognised health needs, including those associated with life-threatening illnesses. The benefits of a health check model are that it fosters familiarity and understanding between people with learning disability and their local health services helping them learn how to access and use these services effectively and develop health gains

29. Longer term benefits  Protection and prevention can be carried out at an early stage to Improved health outcomes and reduce the need for complex intervention  PWLD can be given time to demonstrate or regain capacity.  More efficient use of practice time  Accurate diagnosis  Less polypharmacy and unnecessary prescribing.  Changes in culture that embed positive clinical practice so that PWLD experience a good quality service.

30. Sources of Evidence Closing the Gap- a report from the Disability Rights Commission (DRC 2006) The Equality Act HM Parliament (2010) „Healthcare for All. The findings of the Independent Inquiry into the health inequalities of people with learning disabilities (Michael 2008) Mental Capacity Act HM Parliament (2005) Six lives: the provision of public services to people with learning disabilities(Parliamentary and Health Services Ombudsman 2009)„ Health Inequalities & People with Learning Disabilities in the UK: 2010. Taggart,. L and Cousins W. (2014) Health Promotion for People with Intellectual Disabilities and Developmental Disabilities. Berkshire: Open University Press The Public Health Learning Disabilities Observatory. (Emerson 2010)

31. Over to you questions thoughts and observations