1. The Health Equality Framework (HEF) – an overview Gwen Moulster, Consultant Nurse, Haringey Learning Disabilities Partnership

2. HEF - What is it? Evidence based outcomes framework Systematically developed Measures the contribution of nurses (and others) in reducing exposure to known determinants of health inequality A suite of tools for: –Services –Commissioners –Service users –Carers

3. Who can use the HEF? The HEF can be used by: – people who have learning disabilities themselves –family carers –professionals –paid carers –services –people who decide which services are needed and commission or buy services The HEF offers a common ‘language’ and understanding for everyone involved

5. Common Themes of Outcomes Frameworks 1. Move away from top down targets to local accountability 2. Focus on measuring outcomes rather than process 3. Drive towards quality improvement 4. Improved transparency and accountability 5. Reduction in inequalities NHS Outcomes Framework, Adult Social Care Outcomes Framework, Public Health Outcomes Framework:

6. Developing the Tool –UK LD Consultant Nurse Network initial concept and outline discussed with DH: Director of Nursing for Public Health Director of LD and MH nursing –National Outcomes Frameworks reviewed and debated –Public Health Observatory evidence base reviewed –Initial Framework developed –Pilot work: Nursing census: 233 service users; 20 nurses; 4 localities MDT pilot per and post intervention; 45 service users; Gloucestershire

7. Developing the Tool Consultation: –NDTi commissioning reference group –Local Partnership Boards / Health Subgroups –Teams of local nurses –Self advocacy groups –Service quality checkers –National Valuing Families Forum Delphi Technique for development and validation included: –Broader UK Consultant Nurse Network –Strengthening the Commitment Group –Learning Disability Professional Senate / Royal colleges: Psychology, OT, Salt, Physio & Psychiatry Broader approach and commissioning framework development supported by NDTi and IHaL

8. Developing the Tool What we learned during development stages: HEF scores are independent of severity of LD, co- morbidity, age, ethnicity or gender Scores on all scales are normally distributed across the population Determinants are independent of each other Needs profile incorporated Scoring realigned to individual indicators Indicator descriptors refined Models of data aggregation agreed

9. Developing the eHEF Smart Outcomes commissioned Easy data input Built in guidance Freely available MS Excel based At local levels can show Service users Activity by nurse Activity by unit / service Exportable data for higher level aggregation purposes

10. 5 Determinants of Health Inequalities Outcome measurement demonstrating reduction in the impact of: Social determinants Genetic & Biological determinants Behavioural determinants Communication & Health literacy determinants Service access / quality determinants (Emerson and Baines 2010)

11. How does the tool work? Each determinant has a set of indicators drawn from the research evidence Each indicator has a description Each indicator has a set of ratings that describe different levels of impact Here are the indicators followed by an example of the rating scale….

13. Impact RatingLikely consequences if not addressed 4 = Major Health problems are associated with premature death. There may be multiple permanent injuries or irreversible significant long term health effects. Significant and prolonged restriction of normal activities and high risk of unplanned hospital admissions. 3 = Significant Major injuries and periods of ill health are likely, leading to long-term incapacity/disability and potential premature death. There may be prolonged periods of inability to engage in usual routines. May require complex and prolonged treatment. Likely to have recurrent unplanned hospital admissions. 2 = Limited Prone to moderate injury / illness requiring skilled professional intervention. Typified by recurrent breaks in engagement with normal routines. Recovery period following injury / illness several weeks longer than usual. Therapeutic intervention has significantly reduced in (?) effectiveness 1 = Minimal The person is likely to suffer minor injuries or illnesses which are likely to require minor intervention. There may be some intermittent short lived (i.e. a few days) impairment of engagement in usual activities. Recovery from periods of ill health may be slightly slower than would otherwise be the case. 0 = No impactMinimal impact requiring no/minimal intervention or treatment. Impact Ratings

14. A.Accommodation The quality of living standards for people with learning disabilities can vary widely. When considering accommodation it is important to consider the physical and the social environment. Risks may exist because of the physical environment (extreme damp, unsafe electrics, lack of adaptation around mobility problems etc.), or arise from the social environment (overcrowding, bullying, aggression from others, etc). Impact Level & Indicator StatementDescriptor 4A4A Accommodation presenting high risk, or in hospital / prison with no discharge accommodation identified or homeless. This level applies to a person who has no settled accommodation, who may be in temporary short term accommodation with no appropriate move-on accommodation identified, or in accommodation that is directly impacting on their health and wellbeing. This includes those who are living in restrictive settings such as hospitals or prison. There may be serious safeguarding concerns in relation to accommodation. 3A3A Inappropriate accommodation / accommodation at risk of breakdown. This level applies where a person is in accommodation which is does not meet to their identified health and social needs; or where the accommodation is fragile and likely to break down (e.g. due to negative relationships with peers / neighbours, lack of suitably skilled support, offending behaviour, or where notice has been served by the accommodation provider). 2A2A Shared accommodation with others / family – not by choice. This level applies where accommodation is shared with others though not either chosen by the individual, or agreed through an appropriate best interest process. Similarly, where individuals continue to live with their family despite the fact that they or their family would prefer independence move to more independent living. 1A1A Settled single accommodation or shared with self-selected others. This level applies where a person lives in accommodation either of their choosing or following appropriate best interest processes. This will however be in some form of registered care or where they do not have tenancy rights or full control over their care and / or support. 0A0A Settled family accommodation or own tenancy / ownership reflecting personal choice. This level applies where a person is in settled accommodation either of their choosing or following a appropriate best interest process. Either the person themselves of their family have control over their tenancy, care and support.

15. About eHEF eHEF is an electronic recording tool It can be used to identify how well our interventions are working It can collect information on the health inequalities of an individual or a population Managers of services can use it to see where particular needs are highest, or how well we are doing in different areas of care and intervention

16. A case study: ‘Ray’ Ray is a 64 years old and has moderate learning disabilities He was referred to the community nurse because he was thought to be losing weight On assessment the nurse found Ray had not seen a doctor for some years He had become withdrawn, non- communicative and reclusive not wanting to go out and generally unhappy

17. Ray had become verbally abusive towards the staff who provided his care and support Ray’s staff thought he was being awkward and wanted help to manage his behaviour Following initial assessment the nurse was concerned there may be some serious health problems and arranged for him to see his doctor for a full health check

18. A case study: ‘Ray’ Following a number of health tests Ray was found to have terminal prostate cancer He was receiving no treatment or pain relief and was socially isolated and miserable Ray has no known family and had lost contact with friends

19. Ray’s initial Health inequalities score August 2011: 78%

20. Ray’s eHEF initial score August 2011

23. Interventions: What did the nurse do? Supported Ray to have a full health check Worked with GP and other health staff to help them make reasonable adjustments so they could fully assess, diagnose and treat Ray Completed a pain picture to help hospital and support staff know when Ray is in pain

24. Worked with social worker and continuing health care nurse to enable Ray to move to a nursing home where he gets the right care and support Taught staff in the nursing home how to communicate with Ray effectively and care for his specific needs related to his learning disability

25. Interventions: What did the nurse do? Worked with a health care support worker to build a history of Ray’s life identifying the things that are important to him from his past Worked with the support worker to help Ray reconnect with old friends and enable a more varied lifestyle including activities like going out when he is well enough Worked with palliative care staff to create a person centred end of life plan

26. Ray’s eHEF score June 2013

31. A case study: Peter Peter is 28 years old He has a mild learning disability Peter is diagnosed as having Schizo-affective disorder and Tourette’s Syndrome

32. Behaviours of concern: Peter has a history of causing extensive damage to property. He has been evicted from his last 3 placements because of this Peter was arrested for affray and criminal damage earlier in 2012 and on police bail at time of referral Peter has a history of verbal aggression towards support staff and an assault on staff in 2009 Peter was charged by police for causing damage to a pharmacy in 2010

33. Behaviours of concern: Peter has a history of leaving his flat untidy and dirty e.g. vomit on the floor, bathroom and kitchen unhygienic Peter has an inability to concentrate, he doesn’t participate in any community activities Peter has disruptive behaviour in his supported living environment e.g. playing music loud at night, shouting Peter has presented with anxiety attacks

34. Information gathering: Daily visits for 3 months to get a clear indication of types / frequency / duration of behaviours, and to create a formulation Gave Peter responsibility for recording his own behaviours and thinking about why things happened Completed assessment to assess possibility of violence Thorough history taking to assess past medications and interventions that had been tried Used to formulate and inform psychiatry interventions

35. Worked with Speech & Language Therapist to assess communication skills and drew up communication plan for support staff to use Worked with social worker to find a home placement suited to Peter’s needs. Worked with Peter and the new staff to create care plans and risk management guidelines Attended psychiatry clinics to feedback visits and information. Supported Peter and staff through trials of medication following a diagnosis of ADHD (was found to be self-medicating using Red Bull). Now stable on Pregabalin. Interventions: What did the nurse do?

36. Assessed daily living skills in conjunction with Occupational Therapist and drew up activity plans for Peter Supported staff to deal with difficult situations to ensure placement would not break down Worked with probation officer to support Peter’s adherence to bail conditions Interventions: What did the nurse do?

37. He has been engaging in planned weekly activities since before Christmas Stable home placement. No damage to property since May last year Adhering to all bail conditions and has not been arrested since January 2012 Participating in daily tasks (e.g. cooking and cleaning)and learning to keep his surroundings clean Peter still has periods of unrest and anxiety but:

39. Using the eHEF Anonymised Aggregation Tool(AAT) Introduction eHEF has been designed to support the Health Equality Framework. It is a Microsoft Excel-based tool that has been designed to be portable and run on most systems. eHEF runs on Excel versions 2003 and above and Excel for MAC. System Requirements Hardware: PC or MAC Software: Microsoft Excel 2003 or later Screen Resolution: 1280 pixels wide or higher

40. Where to access HEF resources All Health Equality framework resources are available to download free from the NDTi website: http://www.ndti.org.uk/publications/other-publications/the-health- equality-framework-and-commissioning-guide1/ If you register at: ehef.assistant@gmail.com we will keep you updated with further developments

41. The HEF was developed by Dave Atkinson, Phil Boulter, Crispin Hebron and Gwen Moulster on behalf of the UK Learning Disability Consultant Nurse Network Gweneth.moulster@haringey.gov.uk