Care for people with dementia in general hospitals.

1. Care for people with dementia in general hospitals.  David Oliver 10th February 2010

2. NICE/SCIE Dementia CG 42 �Acute and general hospital trusts should plan and provide services that address the specific personal and social care needs and the mental and physical health of people with dementia who use acute hospital facilities for any reason.�

3. 2009 Recommendation 8. �Improved quality of care for older people in general hospitals� DH template 3

4. What do we mean by �quality�?NHS Next Stage Review 2008. Transparency in Outcomes 2010 Effectiveness of treatment and care Safety of treatment and care Experience patients and carers have of treatment and care [Efficiency. Ensuring value for money]

5. Questions to ponder and revisit... When we know �what good looks like�... When some places and practitioners are already delivering it... How do we make good care the norm?...

6. Themes I: Why so important and urgent? II: How we are doing on delivering quality? III: What we need to do better? IV: The big overlaps between care for inpatients with dementia and those with frailty and age-related illness V: How we might get there? Signposting some key resources along the way Raising some questions for discussion

7. I: Why so important and urgent

8. Population Ageing Life Expectancy 1901 49 F, 45 M 1.3 M over 65 Life Expectancy 2008 82 F, 77 M, 50% living to 80 8.1. M over 65 (16% of population) 5% over 80 Life expectancy at 70 is now 17 years for men and 19 for women (�seventy is the new sixty�) Start of the NHS in 1948, 48% died before 65 Now its <18%

9. 9

11. From NHS Information

12. The hospital population. Why �older people R us� People over 65 account for c. 60% of emergency admissions 65% of bed days 70% of emergency readmissions 80% of delayed transfers and discharges to social care packages/long-term care settings >80% of deaths in hospital what this means for casemix..

13. High intensity users of hospitals have overlap of physical and social vulnerabilities

14. General Hospital Casemix In over 65s, 75% bed days in those with LTC (usually multiple) 5% of local population >65: 40% of bed days Majority of patients have functional impairment and MDT Need (Hubbard R 2004) 25-30% malnourished on admission 25-30% incontinent during admission 80% of those discharged to step down services are over 65 (480,000 per annum) 2/3 of people in receipt of home care services have been in hospital in past 18 months

15. General Hospital Casemix Falls and fractures Account for more bed days than MI, Stroke, Cardiac Failure Combined (SEPHO) 35% of all patient safety incidents (over 240,000 per annum in English Hospitals) (NPSA) Typical hip fracture patient 84, 30% dementia, 30% delirium, most have fallen, 25% from long term care Delirium Present in c 20% of admissions to hospital in over 65s. Complicates a further 20% (up to 50% post-surgery) Delirium predicts two fold increase in post-discharge mortality and worse cognitive and physical recovery at 6 and 12 months

16. �Who cares wins� 2005 Typical 500 bed DGH 5000 admissions over 65 each year 3000 with mental disorder On snapshot 220 beds � mental disorder in over 65s 96 depression 102 dementia 66 delirium

17. From Who Cares Wins 2005

18. Who cares wins

19. Who cares wins

20. Sampson E et al. Dementia in the acute hospital: Prospective cohort study of prevalence and mortality. Br J Psych 2009 195, 61-6 671 consecutive emergency admissions >70 to London DGH Assessed within 72 hours by old age psychiatrist and screened with CAM then MMSE and structured clinical assessment 42.4% had dementia Only half had been diagnosed before admission In Men 70-79, prevalence 16% In Men over 90, 48% In Women 70-79, prevalence 29% In Women over 90, 75% �UTI� or �Pneumonia� were cause of admission in 41% Associated with higher mortality. For those with severe cognitive impairment adjusted mortality risk 4.02 (2.24, 7.36)

21. Personal Correspondence (Same undercoding distorts priorities for frail complex older patients in general) �Prevalence of dementia amongst people with Hip fracture was supposedly <1% whereas the real figure is 40%.....overall coding in acute hospitals is 5-15% of admissions � we would expect at least 25%� �the commissioning team in the SHA pointed out that coders were under instruction from national guidance NOT to code the dementia unless it was relevant to admission� �every clinician I know has agreed that a dementia diagnosis is ALWAYS relevant� �Without complete and accurate coding of people with dementia in acute hospitals, monitoring activity and KPIS such as mortality, LOS< readmission becomes impossible�

22. 2009 NHS Confederation

23. �Acute Awareness� NHS Confed �A large proportion of people with dementia are undiagnosed and many people with dementia go into hospital for a reason not related to their dementia so the dementia is not coded....as dementia is not generally the prime reason for admission to hospital it can often be difficult to factor into a patient�s care programme, yet improving care has the potential not only to enhance quality of experience but also to reduce length of stay and cost�

24. Alzheimer�s Society �Counting the Cost� 2009

26. Counting the Cost 1 in 4 adults beds is occupied by someone with dementia People with dementia stay longer in hospital than people without dementia, with the same condition If people with dementia left hospital one week sooner this could result in savings of at least �80 m a year based on HES for just four condition codes The longer people with dementia remain in hospital the worse the effect on the symptoms of dementia and physical health, more likely to lose function, be discharged to a care home or be prescribed antipsychotics �Much of the large sums of money spent on dementia care in general hospitals could be more effectively invested in workforce capacity and development and in community services outside hospitals to drive up the quality of care on the wards improve efficiency and ensure that people with dementia only access acute care when appropriate�

27. National Audit Office Report 2010 �Effective identification of patients with dementia on admission and more proactive co-ordinated management of their care and discharge could produce savings of �64m and �102 m a year nationally�

28. Four key priorities in new 2010 implementation plan for government to support local delivery of strategy. 1. Good quality diagnosis and early intervention for all 2. Improved quality of care in general hospitals 3. Living well with dementia in care homes 4. Reducing antipsychotic medication

29. Have I convinced you so far? Common Costly Bad for patients and their carers Bad for systems Getting it right is key to unlocking efficiencies Momentum from several organisations and reports... Overlap with broader agenda of older inpatients And those whose presence in hospital avoidable

30. II: How are we doing on delivering quality? Outcomes Experience Safety Efficiency

31. This is first and foremost about people and we should never forget it

32. Sheehan B et al 2009. The care of older people with dementia in general hospital. J Qual Res DemAs paraphrased in DH/RCN Guide �What happens in general hospitals can have a profound and permanent effect on individuals with dementia and their families, not only in terms of inpatient experience, but ongoing functioning relationships, wellbeing, quality of life and fundamental decisions made about their future�

33. From �Acute Awareness�

34. Ann Reid..Acute awareness

37. Win Tadd PANICOA Cardiff/Kent: Dignity in practice: An exploration of the care of older adults in acute trusts. 176 post discharge interviews of older people and their carer and 617 care observations �Right place wrong patients� Some patients not seen as belonging in that ward especially those who are confused, demented, outliers, delayed transfers so needs unmet/ignored �Seeing the person in the bed� Wards are nurses spaces rather than patients emphasis on tasks and completing work so missed opportunities to build relationships. Social engagement and isolation �Whose interests matter?� Significant conflict between perceived interest of trust, ward and patient which impacts on dignity �What makes dignity difficult to achieve and what makes it easier� Resource, health and safety, ward culture, leadership, education and training

38. JRSM 2008, 101

39. Hilton C �from acopia to cornucopia� BMJ 2009 �Acopia, bed blocker etc perjorative, offensive, tend to undermine constructive attitudes towards adequate medical investigation of impaired function in older people. No one should be labelled in such a way implying that the medical team may wash their hands of him or her�

40. �Counting the Cost�, 1,291 carers, 657 nurses, 479 ward managers

41. Counting the cost

42. Royal College of Psychiatrists Audit of care for people with Dementia in General Hospitals 2010 Great piece of work and real momentum.. Core Audit: Hospital Organisational Checklist Policies, protocols, processes, reporting, training etc Case-note audit ( min. 40 patients with dementia) Assessment, care planning, delivery, discharge Enhanced audit 2-3 wards in each hospital for in depth analysis Ward organisation, environment, Staff and carer questionnaires Observation of care interactions

43. Source of Audit Standards National guidance NICE/ SCIE guideline; National Dementia Strategy; DH guidance Professional guidance Service user organisations Dignity on the Ward (Help the Aged); Hungry to be Heard (Age Concern) Areas of patient/ carer priority

44. What were patient/ carer priorities? Care planning and support in relation to the dementia (i.e. not just the acute condition) from admission to discharge Care of patients with acute confusion Maintaining dignity in care Maintenance of patient ability Communication and collaboration: staff and patients/ carers Information exchange End-of-life care Ward environment

45. Audit Participation 151 eligible Trusts (England and Wales) 238 eligible hospitals Provide general acute services on more than one ward Admit people over 65 99% Trust participation (1 or more hospitals core audit) 210 or 88% hospitals (core audit); 55 hospitals (145 wards) enhanced

46. Survey of 206 Hospitals � organisational level Only 30% have formal system for gathering personal information to caring for person with dementia 8% of boards review data on readmissions 20% of boards review data on delayed transfer 70% have no review process for discharge procedures on people with dementia 70% of hospitals were unable to identify people with dementia within reported information on hospital falls 77% of trusts had no training strategy identifying key skills for working with people with dementia 95% of trusts no mandatory awareness training 81% of trusts had no system to ensure ward staff were aware that a person had dementia and how it affected them and that necessary information was imparted to other staff with whom the person came into contact

47. From RCPysch Audit review of casenotes of 7,934 patients 41% received standard mental test score while in hospital 90% of hospitals had some access to liaison psychiatry but only 40% seen in 48 hours and 36% not seen after 96 hours of referral 26% of hospitals documented assessment of carers needs in advance on discharge 30% of patients had no documentation of nutritional status

48. III: What we need to do better What would �good� look like?

49. �Counting the Cost� - recommendations 1. NHS and individual hospitals need to recognise dementia as a growing and costly problem 2. Need to reduce the number of people with dementia in general hospitals through commissioning, early support and intervention, prevention, better discharge etc 3. Senior clinical lead in hospital for dementia 4. Specialist liaison for older peoples mental health

50. Counting the Cost - recommendations 5. Informed and effective acute care workforce. Capacity, workforce development, pre-reg. and ongoing professional training. 6. Reduce antipsychotics 7. Involve people with dementia, carers and families to provide person-centred care 8. Make sure people have enough to eat and drink. e..g through screening, individual care plan, involving carers at mealtimes, volunteers, dementia specific assistance (e.g. Alzheimer�s Society guide to catering) 9. Shift approach to one of dignity and respect

51. Key Questions for Trust Boards (�Acute Awareness�)

52. But the devil is in the detail. What happens at the bedside? Key information, guidance and references on each aspect of the care pathway Backed by good practice examples from English Hospitals (As is �acute awareness�)

53. What the guide covers in detail.. Whole Hospital Approaches Multi-professional specialist liaison Environment and Orientation More person centred care Including involvement of carers Communication Antipsychotics Nutrition and Hydration Pain Relief Challenging Behaviour Walking and Wandering Withdrawn and unresponsive Preventing Delirium Recognising and Managing Delirium Preserving function and rehabilitation Discharge Planning

54. What else might be useful... Falls and Injuries Safeguarding Deprivation of Liberty Physical Restraint (Bedrails/Alarms) Mental Capacity and IMCAs Testamentary capacity Advance Decisions End of Life Care Including withdrawal of food and fluids/use of PEG Ethical Dilemmas e.g. Persuasion/paternalism/risk

55. Falls and Delirium? See NICE Delirium 2009. Young and Inouye 2009. Oliver D Clin Ger Med 2010. Cochrane Falls 2009 Despite the advertised title of the talk.. All I will say is The predisposing risk factors... The precipitating factors... The interventions to prevent them.. The interventions to mitigate the consequences.. The ethical and legal issues.. Have tremendous overlap with dementia

56. Meeting this challenge? We are describing an extensive set of skills, knowledge and behaviours Which we need to impart to every grade and discipline This needs real organisational buy-in and support (Though not always lots of extra funding) �Too difficult?� �Other Priorities?� Not when 1 in 4 of your beds (at least) are occupied by people with dementia!

57. IV: Are we any better at dealing with hospital inpatients who don�t have dementia? And are the solutions the same?

58. Are services, skills and attitudes geared up to the people who use them most? �If we design services for people with one thing wrong at once, but people with many things wrong turn up, the problem lies with the service, not with the users, yet all too often these patients are deemed �inappropriate� or presented as a problem� Rockwood K 2005 �We need to make services age-proof and fit for purpose� Philp 2007

59. All parliamentary enquiry into Human Rights of Older People in Health and Social Care 2008 �Many witnesses including inspectorates, providers and organisations supporting older people expressed concern about poor treatment e.g.� Malnutrition and dehydration Abuse and rough treatment Lack of privacy in mixed sex wards Lack of dignity especially for personal care needs Insufficient attention to confidentiality Neglect, carelessness and poor hygiene Inappropriate medication and use of physical restraint Inadequate assessment of needs Too hasty discharge from hospital Bullying, patronising and infantilising attitudes to older people Discriminatory treatment on the grounds of age, disability or race Communication difficulties, especially in dementia or deafness

60. All parliamentary enquiry into the human rights of older people in healthcare 2007 �The committee heard that while some older people receive excellent, care, there are concerns about poor treatment, neglect, abuse, discrimination and ill considered discharged.� � It considers that an entire culture change is needed. It also recommends legislative changes and a new role for the commission on equality and human rights.�

61. Recent Audits and Reports e.g. Equality Act Consultation and CPA review NCEPOD Report on People over 80 postoperatively 2010 Age UK �hungry to be heard� report 2009 RCP national audit of incontinence 2009 RCP Falls and Bone Health Audit National Hip Fracture Database and Audit Patients Association/Ombudsman Its the same failings for many of the same patients, requiring many of the same solutions

62. V: So if we dont have �high quality care for all�...How we might get there?... Back to my questions at the start

63. �For every complex problem, there is a solution that simple, obvious and wrong� H L Mencken

64. Potential approaches to quality/ safety System incentives (tariffs, QOFs, �never events� etc) Inspection and regulation Transparent audit data followed by local action plans Human rights law Criminal law Equality Act Education and training (all levels and all disciplines) Leadership from colleges/professional associations And from voluntary sector Applicable research programmes Pressure from public and joined up lobbying from professional and voluntary organisations Dissemination Via QIPP programmes Local scrutiny from Links/healthwatch

65. RC Psych Audit recommendations for improving quality Local reporting will allow comparison with national level data on each of the criteria Hospitals will be asked to produce action plans Wards participating in observation highlight areas for celebration and improvement National reporting will make recommendations for improvement and focus on identified good practice Participants will be encouraged to share good practice/ improvements through workshop events

68. DH template 68 Draft outcomes for people with dementia (work in progress) By 2014, all people living with dementia in England should be able to say

69. Most of all... High quality clinical leadership, mentorship and organisational prioritisation, momentum and support Bottom-up, rather than top down e.g. Following examples...

70. Whole Hospital Approach at my own trust Dementia Lead Trust wide dementia group meets monthly to oversee progress/share success/bring in outside speakers/report to board. Dementia now an organisational priority for 2011-12 Geriatricians, Mental Health Trust, Patients Panel, Nurses/Matrons, Alzheimer�s Soc, Age UK, Local Authorities, Non-Exec, Pharmacy, Therapies, Dietetics etc In House training programme with some external places to �train the trainers� �This is Me� Leaflet Care Bundle for BPSD and antipsychotic audit Falls strategy, care bundle and training Attention to patients admitted on memory enhancing drugs Business case approved for old age psychiatry liaison team Standardised guidance on mental capacity assessment

71. At Newham... Consultant Nurse Screening and case finding for dementia/cognitive impairment Direct link to memory clinic service Training and education in house programme in CQIN Advice to ward staff on dementia/delirium/�challenging behaviour� etc Reminiscence room on site and environmental changes on wards (e.g. For wandering) Care pathways for dementia Consultant Nurse to be joined by MDT (CPN, Social Work, OT etc)

72. Better Environment at Royal Bournemouth and Christchurch Increased signage Removal of Hazards Use of colour to highlight key objects e.g. toilet seats Large face clocks visible from all beds Relatives encouraged to bring in personal items to help recognise own bed space Detailed information re dementia on wards Staff ownership of solutions

73. Better emergency department care at St Mary�s Designated �dementia cubicle� in A&E Redecorated with tranquil colours, low-level pictures and large-faced clock Clinical equipment reduced Music provided Toilet signage improved Changes replicated in medical admissions ward Nurses trained in communication, stress responses, pain recognition (Abbey), anaesthetic gel before cannulation, specialist volunteer for companionship, leaflets for patients and carers

74. Specialist Liaison Team in Leeds MDT from 2006 with 5-fold increase in referrals Advice and support to general hospital ward teams on diagnosis, management and discharge planning provided on ongoing basis Training and education for all hospital staff working with older people Continuous data collection 85% of referrals seen within one working day Significant impact on Length of Stay

75. Leadership, education and training at South Tees Emphasis on Dignity in Care Campaign and Dementia Strategy Improvement drive followed complaints about care from people with dementia/carers Observation and analysis of patient records showed need for better knowledge and information in staff Two clinical matrons (dementia and dignity) using �lets respect� tooklkit Worked with trust training department and local college Level 2 and 4 city and guilds progammes for HCAs and Nurses. Now mandatory for new staff Trust-wide privacy and dignity policy Matrons Forum Privacy and dignity training �don�t walk by� policy

76. Nutrition Assistants at Harrogate Band 2 Agenda for Change Assistant Working from 0730 to 1530 Funded by wards but education, supervision and training from dietetic department Weighing, assisting, liaising with catering, one to one care, screening After audit showed that nutritional policies (red tray�s, screening, food and weight charts, supplementary snacks etc) not being followed Following introduction of assistants, compliance to policy greatly increased (e..g screening now 100%)

77. None of these trusts /local leaders... Waited to be told by their boards Or by the PCT Or SHA Or regulators They drove the change out of concern to improve patient care So how do we learn from and replicate their success �at scale and pace�?

78. Thankyou... Questions? David.Oliver@dh.gsi.gov.uk