NUH Clinical Strategy 2010 Dementia Contents The

NUH Clinical Strategy 2010 Dementia

Contents The key contacts in connection with this document are: Rowan Harwood Lead Clinician Rob Morris Pathway Lead for Older People Caron Swinscoe Clinical Lead Diabetes, Infectious Diseases, Renal and Cardiovascular Services Directorate Page Glossary 2 The story 4 Introductory information 7 Current position 13 The external environment 17 Strategic ambition 20 Action plan 24 Appendices 1

Glossary ALOS ANP ARMD BCIS BMT BRU CABG CAT CCU CDif CEMACH CEPOD CF CHD CICU CIP CLAHRC CNST CPA CT CU CVD DASH DC DGH DSE EAU Average Length Of Stay Advanced Nurse Practitioner Age Related Macular Degeneration British Cardiovascular Intervention Society Bone Marrow Transplant Biomedical Research Unit Coronary Artery Bypass Graft Cardiac Assessment Team Coronary Care Unit Clostridium Difficile Confidential Enquiry into Maternal and Child Health Confidential Enquiry into Peri-Operative Deaths Cystic Fibrosis Coronary Heart Disease Cardiac Intensive Care Unit Cost Improvement Programme Collaborations for Leadership in Applied Health Research and Care Clinical Negligence Scheme for Trusts Clinical Pathology Regulation Computerised Tomography Comprehensive Unit Coronary Vascular Disease Direct Access to Stroke Hyper Acute Unit Day Cases District General Hospital Dobutamine Stress Echocardiogram Emergency Assessment Unit ECP ED EL EM EMAS EMR EMSCG EP EUS FAST FOB GP HCOP HSMR IAU ICU IF ILD IP IPR IT ITU IVF JACIE LAM LIFT LOS LTC MACE MDTs Elderly Cancer Patients Emergency Department Elective East Midlands Ambulance Service Endoscopic Mucosal Resection East Midlands Specialist Commissioning Group Electrophysiology Endoscopic Ultrasound Scan Face, Arm, Speech, Time Faecal Occult Blood General Practitioner Health Care of Older People Hospital Standard Mortality Rate Integrated Assessment Unit Intensive Care Unit Intestinal Failure Unit Interstitial Lung Research Out Patient Individual Performance Review Information Technology Intensive Therapy Unit In-Vitro Fertilisation Joint Accreditation Committee Lymphangioleiomyomatosis Local Investment Funding Trust Length Of Stay Long Term Conditions Major Adverse Cardiac Event Multi Disciplinary Teams 2

Glossary MHRA Medicines and Healthcare products Regulatory Agency MINAP Myocardial Ischaemia National Audit Project MRA Magnetic Resonance Angiograph MRC Medical Research Council MRI Magnetic Resonance Imaging NCRI National Cancer Research Institute NDRS Nottingham Diabetic Retinopathy Service NEL Non Elective NEMS Nottingham Emergency Medical Services NICE National Institute for Clinical Effectiveness NIHR National Institute for Health Research Notts City NHS Nottingham City Notts County NHS Nottinghamshire County NSF National Service Frameworks NSR Next Stage Review NUH Nottingham University Hospitals OPD Out Patient Department PA Programmed Activity PACS Picture Archiving Communication System PBC Practice Based Commissioning PCI Percutaneous Coronary Intervention PCT POD PPI PROM QMC R&D RFA RNIB SFNHSFT SITS SLA Sp. R TAVI TB TC TCC TIA TOE UHL UKBTB ULH Uo. N VFM Wi. Fi Primary Care Trust Point Of Care Testing Patients’ Own Drugs Patient and Public Involvement Patient Reported Outcome Measures Queen’s Medical Centre Research and Development Radio Frequency Ablation Royal National Institute for the Blind Sherwood Forest NHS Foundation Trust Site Implementation of Thrombolysis in Stroke Service Level Agreement Specialist Registrar Transcatheter Aortic Valve Implementation Tuberculosis Treatment Centre Trent Cardiac Centre Transient Ischaemic Attack Transesophageal Echocardiogram University Hospitals Leicester United Kingdom Blood Transfusion Board United Lincolnshire Hospitals University of Nottingham Value For Money Wireless Fidelity 3

The story Introduction l NUH recognises the importance and magnitude of the dementia challenge and is committed to prioritising the improvement of dementia care. l In last year’s World Alzheimer Report (2009), Alzheimer’s Disease International estimated that there are 35. 6 million people living with dementia worldwide in 2010, increasing to 65. 7 million by 2030 and 115. 4 million by 2050. l Alzheimer’s Society Report (2009) ‘Counting the Cost’ suggests that: - 25% of acute beds are occupied by people over 65 with dementia. - People with dementia stay in hospital longer than other people who go in with the same condition or for the same procedure. - As well as cost to the person with dementia, increased length of stay is placing financial pressure on the NHS - Staff are ill equipped to provide the specialist dementia care required - 77% of carers express dissatisfaction with the level of care provided. l In February 2009 the National Dementia Strategy was launched. It is a five year plan to transform the lives of people with dementia and their carers. National Policy l This builds on a number of previous and more recent policy documents including: Who Cares Wins, Royal College of Psychiatrists 2005; Everybody’s Business, DH 2006; NICE guideline No 42 – Dementia 2006; Delirium, diagnosis, treatment and management NICE 2010 l The key aims are: improved awareness, earlier diagnosis and intervention and a higher quality of care. l Objectives for change in the National Strategy identify opportunities to create a more cost-effective system that delivers high quality care to people with dementia and their carers 4

The story Current position l Patients with dementia are treated by almost all adult care services in the Trust. l Patients are usually admitted with another condition, with dementia being a co-morbidity. l Local data suggest 30% of Acute Medical Directorate patients have cognitive impairment (dementia and /or delirium) l NUH is a large trauma orthopaedic centre, treating 780 hip fracture patients a year. 40% of these patients will have dementia. l Many cases of dementia are first recognised during an acute hospital admission l There is currently little recognition or specific provision for the needs of dementia patients, although many generic policies and procedures apply to their care l Patients with dementia, have longer length of hospital stay and poorer outcomes than those without. This is because of their underlying illnesses, their management in hospital and within the rest of the health and social care system. NUH data suggests a mean length of stay around 15 days, but with substantial variation between cases. l Absolute numbers of patients, and the proportion of the Trust’s patients with dementia will increase over coming years. This is due to demographic changes in the local population and in many instances it can be difficult to provide non-hospital alternatives for care. l Locally and nationally there is dissatisfaction with the management of patients with dementia from families, carers, their advocates and regulators l NUH is currently taking part in the National Dementia Audit (NDA), which will enable us to benchmark our current position l The key drivers for future change are the National Dementia Strategy, patients’ and carers’ opinions and requirements of External Environment commissioning PCTs and NHS regulators, including the joint local authorities health overview and scrutiny committee l Responsibility for services for people with dementia is divided amongst many agencies, including Nottingham Universities Hospital NHS Trust, Nottingham Healthcare Trust, primary care, intermediate care, adult social care, and care homes. PCTs and local authorities commission the dementia services. l Pb. R tariffs make it difficult to account for liaison and cross-agency services. l Many national policies and guidelines have been written from the perspective of mental health, and take poor account of the particular dependencies and needs of this patient group in acute hospitals, nor the competing demands, constraints and targets of acute hospitals. l Dementia is increasingly becoming a key national priority and strong commitment to ensure excellent patient, carer and staff experiences in living with dementia is evident across both health and social care 5

The story contd. Strategic Ambition To deliver a service which: l enhances the quality of life for patients and carers by ensuring prompt access to expert services l recognises individual needs l reduces length of stay, readmissions and care home placements. l performs in the top quartile of National Dementia Audit measures l is recognised as a leading venue for teaching and training l support and develop a portfolio of innovation and research Action plan l Development of Dementia Pathway to guide management of patients with dementia throughout the Trust l Review of current policies and structures to drive Trust wide improvements in care l Ensure new policies, pathways and structures are ‘dementia aware’ and ‘dementia friendly’ l Development of Education and Training strategy l Development of a NUH patient and carer user group to directly influence service development l Work with PCTs and Nottinghamshire Healthcare Trust to specify, commission and accommodate an Older Persons liaison service Ensure success of National Institute for Health Research (NIHR) Medical Crises in Older People research programme and other externally funded research l Use emerging results from NIHR Medical Crises in Older People (MCOP) and Service Development & Organisation (SDO) and Better Mental Health research programmes to inform service development l l Utilise CLARHC structures to drive change 6

Contents Glossary The story Introductory information Current position The external environment Strategic ambition Action plan Appendices 7

Scope of services Service Description l Dementia and delirium are cross cutting issues affecting almost all adult services l l l in the Trust, but especially Health Care of Older People, Stroke Medicine, Acute Medicine, Orthopaedics and Emergency Department. Patients with dementia mostly attend NUH for management of an inter-current comorbid illness, injury or crisis, rather than for dementia itself. Allied Health Professional services (including Speech and language therapy, dietetics, occupational therapy) identify a particular role in managing people with dementia The Integrated Discharge Team will often be involved in case managing difficult discharges, liaising with Adult social care, intermediate care and other rehabilitation facilities Neurology provide a diagnostic service in support of the working age dementia service (Nottinghamshire Healthcare NHS Trust) Radiology provide structural and functional imaging services (CT, MRI, SPECT, DAT) Market share l Patients are almost exclusively local residents and will be referred or admitted PCT in which admissions to NUH Medical directorate were resident, 2009 from Nottingham County and Nottingham City PCTs. l Nottinghamshire Healthcare NHS Trust is primarily responsible for providing specialist psychiatric services, including memory clinics, community mental health teams, day hospitals, in-patient assessment, and challenging behaviour wards l Mental health intermediate care services, which vary geographically, aim to avoid hospital admission and facilitate early discharge and community rehabilitation. 8

Scope of services • Overview • Managing patients with dementia is core business for acute NHS Trusts, given the large numbers of patients involved. This role is currently rarely recognised, and little specific provision made. Current expertise in in-patient management resides largely in Health Care for Older People wards, where there is a long tradition of considering physical, mental health and social aspects of disease, and multidisciplinary working. • More recently a specialist medical and mental health ward (MMHU) has been developed in support of NIHR funded research, and this is evaluated by Randomised Controlled Trial from July 2010. • An orthogeriatric liaison service has developed over the past 30 years at NUH, and has recently been expanded to provide daily proactive consultant input to older people, including those with dementia, who suffer fractures. • Many other patients with dementia access NUH services, supported by many policies of generic relevance (such as consent, privacy and dignity, and safeguarding), and a multidisciplinary integrated discharge team. Research l Neurology, neuropathology and academic radiology have a long history of research into neurodegenerative conditions l Current research based in the Division of Rehabilitation and Ageing include a £ 2 M NIHR programme ‘Medical Crises in Older people’, £ 460 k SDO funded ‘Better mental health in older people in general hospitals’ carer interview and workforce study. l The Division of Nursing hosts a £ 150 k Alzheimer’s Society grant to study end of life care in dementia. Training l Student nurses, medical students, therapy students, postgraduate doctors and post-registration nurses are trained. Excellent links with the Alzheimer's Society for delivery of training to staff. Scoping of in house training provision identified pockets of excellent training but overall an inconsistent approach Trust wide with variation in access to resources and levels of training. Finance Pb. R tariffs make it difficult to account for liaison and cross-agency services. The MMHU development is supported by PCT funding of ‘excess treatment costs of research’. l Identifying specific finances is complex. 9

Key dependencies with other NUH services Dementia care is linked with adult care services provided at NUH, supported by radiology and Allied Health Professionals. Dementia care Essential dependencies Strong dependencies l Health care of older people l Stroke medicine l Acute medicine l Emergency department l Orthopaedics l Mental Health l Physiotherapy l Intermediate Care l Occupational Therapy l NUH integrated discharge team l Pharmacy Discretionary relationship l Radiology l Other surgical specialties l Neurology l Other medical specialties l Speech and Language Therapy l Dietetics l General Practice l Community nursing l Social care Key: Essential: this service is required for your sustainability Strong: necessary for elements of your service to be sustainable Discretionary services) not necessary for your services sustainability (these services may be dependant for their sustainability on your 10

Key interdependencies with external stakeholders l External links are essential in ensuring patients access NUH quickly and more importantly ensuring best outcome achieved Integrated Discharge Team (PCT) Primary Care Nottinghamshire Healthcare NHS Trust l Referral, gate keeping and community follow up l In patient psychiatric services l Memory clinics l Community healthcare teams l Some specialist staff seconded to NUH Alzheimer's Society Age Concern Red Cross Psychiatric consultation service l NUH liaise with team to ensure swift discharge to community setting Mental health trust l l l Advocacy and support services Dementia Care l l NEMS Provides key links for care in community on discharge l Links to GP and potential to avoid inappropriate referral Lead agency for DOLS and safeguarding Adult Social Care l Strong Academic Team providing direct clinical care and research Nottingham University l Nurse assessors for continuing healthcare needs and care home assessment l We need to understand the commission old age liaison service PCTs 11

Contents Glossary The story Introductory information Current position l Where are we now? l Illustrative profile of services today The external environment Strategic ambition Action plan Appendices 12

Current position External environment Strate gic ambiti on Action plan Where we are we now ? • Some generic services are very good, and have appropriate pathways for managing and discharging people with dementia. • General current hospital environment and processes are not well suited for caring for people with dementia, leading to upset, distress behaviours, carer strain, dissatisfaction and complaints. • As a topic of emerging concern, there is little quantified evidence on performance or relative performance compared with other Trusts. The ongoing National Dementia Audit will inform this debate. • The NIHR and SDO research projects have started and will provide robust and pertinent evidence on the current state of services 13

Illustrative profile of services today Current position External environment Strate gic ambiti on Action plan Dementia care Super Specialist DGH Care closer to home Community services 2% DGH work is the generality of patients managed in the Trust. 83% 15% Self Care / management healthy lifestyles Key: Working age dementia diagnostic and imaging is specialised Care closer to home is the proportion of patients who should be in a care home or other intermediate bed. This is a significant problem for a small group of patients for whom finding a suitable rehabilitation setting or care home place is very difficult or delayed. bubble size denotes activity levels (this is illustrative only) 14

Current performance vs. peers Current position External environment Strate gic ambiti on Action plan Overall performance for dementia care (estimated) Poor below average above average Excellent Comments l Evidence is limited Clinical Outcomes Patient Experience l NIHR cohort study will inform l Patient Survey – not specifically related to dementia care l Complaints – OSC / Links feedback improving, but was poor l SDO interview study will inform l Feedback good Teaching l Strong national presence Research l Strong Academic Teams l Good CLRN/MHRN study recruitment l Staff groups across the Trust, not uniform Staff Satisfaction l Recognised that dealing with confused patients can be stressful l SDO workforce study will inform l Concern that length of stay in some cases unduly prolonged and Value For Money outcomes poor l NDA may help benchmark l Need to collect accurate costs for this group of patients 15

Contents Glossary The story Introductory information Current position The external environment l Summary of key market trends and drivers l Competitive position Strategic ambition Action plan Appendices 16

Summary of key market trends and drivers Current position External environment Strate gic ambiti on Action plan 1. Future health needs l Ageing population – greater prevalence of dementia l Almost certain increased demand for acute hospital admission l Increased expectations and need to improve quality of care 2. Policy initiatives 6. Any other issues National Dementia strategy l Awareness l Early diagnosis Important to identify and address causes of family and carer dissatisfaction l Better educated workforce l Improved general hospital care Need to ensure new developments in NUH (eg acute medicine pathway) are ‘dementia aware‘ l Better end of life care l Important to work with partners in SHA, PCTs, primary care, NHCT, adult social care l l Dementia Strategy 5. Changes to models of care l Role of specialist MMHU l Possible commissioning of older age liaison service l 3. Technological developments Further development and roll out of MH intermediate care l Specialist MMHU under development and evaluation 4. Likely commissioning intentions l SHA led National Dementia strategy implementation l Concentration on early diagnosis and intervention l Strong emphasis on support at home and in care homes l Likely increased demand for imaging and specialist diagnostic services. l PCTs recognise need, but no current plans to commission older age liaison service 17

Competitive position Current position External environment Strate gic ambiti on Action plan There is little in the way of direct competition, the key goals being ensuring 1. What matters most to our clients Patients/ Carers • crises sorted • loss of function minimised • disruption and distress minimised • information • high quality decision making • interface with community health and social services 2. Different sources of competition l Most comparable activity will be within l Excellent research base, including Nottingham Healthcare Trust who should be seen as partners not competitors. l Generally well developed, if under l NHCT have closed in-patient beds over time putting pressure on NUH beds during times of crisis l Imaging and neurology could be provided by other NHS or independent sector providers l Acute care might be provided by other Commissioners/PCTs l Delivery of National Dementia Strategy l Early discharge and care at home l Improved efficiency (more activity for same funds) l Investment in early diagnosis and community services local NHS Trusts, but care of frail older people is very geographically localised and they are unlikely to want to increase care for what is seen as a difficult and expensive patient group 4. Conclusions around threats and opportunities 3. How we compare against the competition experimental MMHU resourced, community mental health services including intermediate care Opportunities l Investment in education and expertise has good scope for delivering improved patient and carer experience l Good infrastructure of policies and service development (eg Essence of care) l National leaders in research Threats l Patient group will always be difficult, stressful and slow to manage. l Impact of patient dependency on capacity for delivering more than the most basic care should not be underestimated l SHA keen to develop early diagnosis and community support at the expense of acute trust activity l PCT as yet unable to commission older age liaison service 18

Contents Glossary The story Introductory information Current position The external environment Strategic ambition l Aspirations l Illustrative profile of activity shift l Options appraisal Action plan Appendices 19

Our strategic ambition Current position External environment Strate gic ambiti on Action plan l To deliver excellence in patient and carer experience Trust wide. l To perform in the top quartile of National Dementia Audit measures l To reduce length of stay, readmissions and care home placements l To support staff in managing emotionally difficult situations, through education and clinical supervision l To be recognised as a leading venue for teaching and training l To support and develop a portfolio of innovation and research 20

How Dementia will change: Activity shift towards 2016 Today Scope for supporting move to early diagnosis and imaging Super Specialist Distinguished General Hospital Care closer to home Community services Self Care / management healthy lifestyles In 2016 2% 83% 15% 5% Patients with comorbid dementia, attending for other medical conditions will remain core Trust business Scope for reducing delays in discharge dependent on families and Adult Social care. Partnership working crucial. Impact of increase in care closer to home as yet unclear. 83% 10% 21

Our options Underlying principal is that all Trust services, policies, procedures and pathways need to be made ‘dementia friendly’. This will include: • Ensuring documentation collects appropriate information about mental health problems on admission/pre admission where possible. • Delirium and dementia are recognised, assessed and diagnosed where they occur (it may not be obvious, and dementia may not have been diagnosed previously) • Medical and surgical conditions are treated appropriately and optimally, without discrimination • Using existing NUH policies (such as privacy and dignity, consent and safeguarding). Reviewing and adding to them as necessary to ensure dementia awareness. • Taking due account of information held by families and carers, their information needs, and identifying where a specific care assessment is required • Identifying and providing appropriate sources of additional specialist help, for medical, mental health rehabilitation and discharge planning needs (including specialist learning disabilities liaison) • Ensuring appropriate and comprehensive hand over of care to primary care or community mental heath services at point of discharge • Developing close and productive relationships with Adult Social Care • Identifying people approaching the end of life, and adapting EOLC guidelines to meet the particular needs of people with dementia • Comprehensive education strategy Several layers of expertise will be required • Generic – all staff working with adult patients will need basic dementia awareness • Specialist – ED, acute medicine, other medical specialties, orthopaedics • Expert – Health care of older people, including the specialist medical and mental health unit 22

Contents Glossary The story Introductory information Current position The external environment Strategic ambition Action plan l Stepping stones to transition l Success in 2016 23

The action plan Transition Areas Current position FROM NOW STEPPING STONES IN THE TRANSITION By end 2010 In 2011 Outputs l Education strategy National Dementia Audit l l Essence of Care l New pathways aware and dementia friendly Ensure all aspects of the NDS relevant to acute care implemented, taking into account current guidance and best practice. l Better mental health carer and workforce experience studies to inform developments l Successful delivery of research contracts l Increasing academic output MMHU development l Higher degrees Alzheimer's Society dying in hospital study l Dissemination and publicity l Use research findings and culture to drive service improvement l Comprehensive Education and Training Strategy l Undertake required actions to deliver information l Extensive new activity to deliver appropriately educated workforce • Strong information on Teaching and education quality of teaching although evidence anecdotal Beyond 2011 Become a demonstration site for areas of good practice. Pt/Carer feedback group Action plan TO 2016 Dementia pathways for urgent and elective care l Strate gic ambiti on Deliver strategies l l Research & innovation l Dementia Steering Group l • Excellent Research Dementia strategy l l Service Configuration experience • Relatively long LOS, high rates of readmission and care home placement l l • Pockets of expertise • Widespread reports of poor External environment l Communication Strategy l Ensure NUH is actively involved regionally through CLAHRC and EMHEIC to deliver research into practice • Excellent clinical outcomes • All pathways implemented l New bids to sustain portfolio of research • Actively contribute to and influence national and international standards of dementia care • Excellent teaching supported by robust information • Demonstrably excellent post graduate medical teaching 24

The action plan Transition Areas Current position FROM NOW External environment STEPPING STONES IN THE TRANSITION By end 2010 In 2011 Strate gic ambiti on Action plan TO 2016 Beyond 2011 • Current skill gaps and retention issues. • Medical workforce inadequate in some areas • Limited mental health expertise Inputs and enablers • Environment not generally dementia friendly l SDO workforce study results l Review skill mix required to deliver excellence in dementia care Undertake local staff survey l Facilities and equipment Recruit into all vacancies l Workforce l Critical assessment of all patient areas Signage, orientation cues, noise Use of the environment to reduce agitation l l Systems & information Partnerships information eg complaints, incidents • Brief discharge summaries inadequate for complex cases • NHCT • Primary care • PCTs • ASC l l l • Workforce trained and confident • MH expertise available and embedded • Fit for purpose estate Environment strategy/guidelines for dementia 100% electronic discharge Work with external colleagues towards commissioning of older age liaison service (by PCTs from NHCT) Ensure that ‘dementia friendliness’ is a core component of development and planning of NUH estate. Review complaints process and ensure able to deliver requirements of people living with dementia l Workforce that is appropriately skilled and competent to deliver excellence in dementia care across all clinical areas Ensure robust performance data l • Limited dementia specific l Ensure NUH is represented locally, regionally and nationally in order to deliver requirements of NDS • Clear evidence of case load, cost, service requirements, profitability etc. l Ensure NUH is represented locally, regionally and nationally in order to deliver requirements of NDS • Liaison service in place 25

Success in 2016 Current position Planned improvement in performance Poor below average External environment Strate gic ambiti on Action plan Description of success in 2016 above average Excellent HOW? Clinical Outcomes Increased training. Scrutiny of policies and pathways. Dementia pathway. Patient Experience Identify causes of poor experience. More ambitious PPI strategy. Teaching Research Staff Satisfaction SDO workforce study. Survey. Understand staff problems. Clinical supervision Value For Money Understand impact of dementia on efficiency of all services. Needs quantifying by service/directorate. . Dementia identified and special needs met l Reduce LOS, increase in discharge rate to home l Top quartile in National Dementia Audit l Dementia identified and special needs met l Families and carer concerns addressed Trust priority. LBR. Academic team to continue with strong research l l Centre of excellence l Research portfolio sustained and developed l Staff wanting to work at NUH –demand for posts l Clinical supervision routine l Right person, right time. l No blockages in pathway to drive out inefficiency 26