1. NUH Clinical Strategy 2010 Dementia

2. 1 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 Glossary2 The story4 Introductory information7 Current position13 The external environment17 Strategic ambition20 Action plan24 Appendices Contents

3. 2 Glossary ALOSAverage Length Of Stay ANPAdvanced Nurse Practitioner ARMDAge Related Macular Degeneration BCISBritish Cardiovascular Intervention Society BMTBone Marrow Transplant BRUBiomedical Research Unit CABGCoronary Artery Bypass Graft CATCardiac Assessment Team CCUCoronary Care Unit CDifClostridium Difficile CEMACHConfidential Enquiry into Maternal and Child Health CEPODConfidential Enquiry into Peri-Operative Deaths CFCystic Fibrosis CHDCoronary Heart Disease CICUCardiac Intensive Care Unit CIPCost Improvement Programme CLAHRCCollaborations for Leadership in Applied Health Research and Care CNSTClinical Negligence Scheme for Trusts CPAClinical Pathology Regulation CTComputerised Tomography CUComprehensive Unit CVDCoronary Vascular Disease DASHDirect Access to Stroke Hyper Acute Unit DCDay Cases DGHDistrict General Hospital DSEDobutamine Stress Echocardiogram EAUEmergency Assessment Unit ECPElderly Cancer Patients EDEmergency Department ELElective EMEast Midlands EMASEast Midlands Ambulance Service EMREndoscopic Mucosal Resection EMSCGEast Midlands Specialist Commissioning Group EPElectrophysiology EUSEndoscopic Ultrasound Scan FASTFace, Arm, Speech, Time FOBFaecal Occult Blood GPGeneral Practitioner HCOPHealth Care of Older People HSMRHospital Standard Mortality Rate IAUIntegrated Assessment Unit ICUIntensive Care Unit IFIntestinal Failure Unit ILDInterstitial Lung Research IPOut Patient IPRIndividual Performance Review ITInformation Technology ITUIntensive Therapy Unit IVFIn-Vitro Fertilisation JACIEJoint Accreditation Committee LAMLymphangioleiomyomatosis LIFTLocal Investment Funding Trust LOSLength Of Stay LTCLong Term Conditions MACEMajor Adverse Cardiac Event MDTsMulti Disciplinary Teams

4. 3 Glossary MHRAMedicines and Healthcare products Regulatory Agency MINAPMyocardial Ischaemia National Audit Project MRAMagnetic Resonance Angiograph MRCMedical Research Council MRIMagnetic Resonance Imaging NCRINational Cancer Research Institute NDRSNottingham Diabetic Retinopathy Service NELNon Elective NEMSNottingham Emergency Medical Services NICENational Institute for Clinical Effectiveness NIHRNational Institute for Health Research Notts CityNHS Nottingham City Notts CountyNHS Nottinghamshire County NSFNational Service Frameworks NSRNext Stage Review NUHNottingham University Hospitals OPDOut Patient Department PAProgrammed Activity PACSPicture Archiving Communication System PBCPractice Based Commissioning PCIPercutaneous Coronary Intervention PCTPrimary Care Trust POCTPoint Of Care Testing PODPatients’ Own Drugs PPIPatient and Public Involvement PROMPatient Reported Outcome Measures QMCQueen’s Medical Centre R&DResearch and Development RFARadio Frequency Ablation RNIBRoyal National Institute for the Blind SFNHSFTSherwood Forest NHS Foundation Trust SITSSite Implementation of Thrombolysis in Stroke SLAService Level Agreement SpRSpecialist Registrar TAVITranscatheter Aortic Valve Implementation TBTuberculosis TCTreatment Centre TCCTrent Cardiac Centre TIATransient Ischaemic Attack TOETransesophageal Echocardiogram UHLUniversity Hospitals Leicester UKBTBUnited Kingdom Blood Transfusion Board ULHUnited Lincolnshire Hospitals UoNUniversity of Nottingham VFMValue For Money WiFiWireless Fidelity

5. 4 The story 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. 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 The key aims are: improved awareness, earlier diagnosis and intervention and a higher quality of care. 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 Introduction National Policy NUH recognises the importance and magnitude of the dementia challenge and is committed to prioritising the improvement of dementia care. 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. 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.

6. 5 Patients with dementia are treated by almost all adult care services in the Trust. Patients are usually admitted with another condition, with dementia being a co-morbidity. Local data suggest 30% of Acute Medical Directorate patients have cognitive impairment (dementia and /or delirium) NUH is a large trauma orthopaedic centre, treating 780 hip fracture patients a year. 40% of these patients will have dementia. Many cases of dementia are first recognised during an acute hospital admission There is currently little recognition or specific provision for the needs of dementia patients, although many generic policies and procedures apply to their care 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. 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. Locally and nationally there is dissatisfaction with the management of patients with dementia from families, carers, their advocates and regulators NUH is currently taking part in the National Dementia Audit (NDA), which will enable us to benchmark our current position The story Current position External Environment The key drivers for future change are the National Dementia Strategy, patients’ and carers’ opinions and requirements of commissioning PCTs and NHS regulators, including the joint local authorities health overview and scrutiny committee 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. PbR tariffs make it difficult to account for liaison and cross-agency services. 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. 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

7. 6 The story contd. Strategic AmbitionTo deliver a service which: enhances the quality of life for patients and carers by ensuring prompt access to expert services recognises individual needs reduces length of stay, readmissions and care home placements. performs in the top quartile of National Dementia Audit measures is recognised as a leading venue for teaching and training support and develop a portfolio of innovation and research Action plan Development of Dementia Pathway to guide management of patients with dementia throughout the Trust Review of current policies and structures to drive Trust wide improvements in care Ensure new policies, pathways and structures are ‘dementia aware’ and ‘dementia friendly’ Development of Education and Training strategy Development of a NUH patient and carer user group to directly influence service development 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 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 Utilise CLARHC structures to drive change

8. 7 Glossary The story Introductory information Current position The external environment Strategic ambition Action plan Appendices Contents

9. 8 Scope of services Service Description Dementia and delirium are cross cutting issues affecting almost all adult services 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 co- morbid 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 Patients are almost exclusively local residents and will be referred or admitted from Nottingham County and Nottingham City PCTs. 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 Mental health intermediate care services, which vary geographically, aim to avoid hospital admission and facilitate early discharge and community rehabilitation. PCT in which admissions to NUH Medical directorate were resident, 2009

10. 9 Scope of services Research Neurology, neuropathology and academic radiology have a long history of research into neurodegenerative conditions Current research based in the Division of Rehabilitation and Ageing include a £2M NIHR programme ‘Medical Crises in Older people’, £460k SDO funded ‘Better mental health in older people in general hospitals’ carer interview and workforce study. The Division of Nursing hosts a £150k Alzheimer’s Society grant to study end of life care in dementia. Training 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 Identifying specific finances is complex. PbR 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’. 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.

11. 10 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 Strong dependenciesDiscretionary relationship Stroke medicine Emergency department Mental Health Intermediate Care NUH integrated discharge team Radiology Neurology Other medical specialties Speech and Language Therapy Dietetics General Practice Community nursing Social care Other surgical specialties Essential dependencies Health care of older people Acute medicine Orthopaedics Physiotherapy Occupational Therapy Pharmacy Key:Essential:this service is required for your sustainability Strong:necessary for elements of your service to be sustainable Discretionarynot necessary for your services sustainability (these services may be dependant for their sustainability on your services)

12. 11 Key interdependencies with external stakeholders External links are essential in ensuring patients access NUH quickly and more importantly ensuring best outcome achieved Mental health trust Psychiatric consultation service In patient psychiatric services Memory clinics Community healthcare teams Some specialist staff seconded to NUH Links to GP and potential to avoid inappropriate referral Advocacy and support services Provides key links for care in community on discharge Lead agency for DOLS and safeguarding Referral, gate keeping and community follow up Nurse assessors for continuing healthcare needs and care home assessment We need to understand the commission old age liaison service Alzheimer's Society Age Concern Red Cross Nottinghamshire Healthcare NHS Trust Primary Care Adult Social Care PCTs NEMS Dementia Care Integrated Discharge Team (PCT) NUH liaise with team to ensure swift discharge to community setting Nottingham University Strong Academic Team providing direct clinical care and research

13. 12 Glossary The story Introductory information Current position Where are we now? Illustrative profile of services today The external environment Strategic ambition Action plan Appendices Contents

14. 13 Current position Strate gic ambiti on Action plan External environment 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

15. 14 Illustrative profile of services today Dementia care Working age dementia diagnostic and imaging is specialised DGH work is the generality of patients managed in the Trust. 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. Self Care / management healthy lifestyles Care closer to home Community services DGH Specialist Super Specialist 2% 83% 15% Key:bubble size denotes activity levels (this is illustrative only) Current position Strate gic ambiti on Action plan External environment

16. 15 Current performance vs. peers Current position Strate gic ambiti on Action plan External environment Overall performance for dementia care (estimated) Comments Evidence is limited NIHR cohort study will inform Patient Survey – not specifically related to dementia care Complaints – OSC / Links feedback improving, but was poor SDO interview study will inform Feedback good Strong national presence Strong Academic Teams Good CLRN/MHRN study recruitment Staff groups across the Trust, not uniform Recognised that dealing with confused patients can be stressful SDO workforce study will inform Concern that length of stay in some cases unduly prolonged and outcomes poor NDA may help benchmark Need to collect accurate costs for this group of patients Poor Teaching Excellent below average above average Patient Experience Clinical Outcomes Research Staff Satisfaction Value For Money

17. 16 Glossary The story Introductory information Current position The external environment Summary of key market trends and drivers Competitive position Strategic ambition Action plan Appendices Contents

18. 17 Summary of key market trends and drivers Dementia Strategy 1. Future health needs 2. Policy initiatives 6. Any other issues National Dementia strategy Awareness Early diagnosis Better educated workforce Improved general hospital care Better end of life care Important to work with partners in SHA, PCTs, primary care, NHCT, adult social care Important to identify and address causes of family and carer dissatisfaction Need to ensure new developments in NUH (eg acute medicine pathway) are ‘dementia aware‘ 3. Technological developments Specialist MMHU under development and evaluation Ageing population – greater prevalence of dementia Almost certain increased demand for acute hospital admission Increased expectations and need to improve quality of care 5. Changes to models of care Role of specialist MMHU Possible commissioning of older age liaison service Further development and roll out of MH intermediate care 4. Likely commissioning intentions SHA led National Dementia strategy implementation Concentration on early diagnosis and intervention Strong emphasis on support at home and in care homes Likely increased demand for imaging and specialist diagnostic services. PCTs recognise need, but no current plans to commission older age liaison service Current position Strate gic ambiti on Action plan External environment

19. 18 Competitive position 1. What matters most to our clients 4. Conclusions around threats and opportunities 3. How we compare against the competition 2. Different sources of competition Patients/ Carers crises sorted loss of function minimised disruption and distress minimised information high quality decision making interface with community health and social services Commissioners/PCTs Delivery of National Dementia Strategy Early discharge and care at home Improved efficiency (more activity for same funds) Investment in early diagnosis and community services Most comparable activity will be within Nottingham Healthcare Trust who should be seen as partners not competitors. NHCT have closed in-patient beds over time putting pressure on NUH beds during times of crisis Imaging and neurology could be provided by other NHS or independent sector providers Acute care might be provided by other 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 Excellent research base, including experimental MMHU Generally well developed, if under resourced, community mental health services including intermediate care Opportunities Investment in education and expertise has good scope for delivering improved patient and carer experience Good infrastructure of policies and service development (eg Essence of care) National leaders in research Threats Patient group will always be difficult, stressful and slow to manage. Impact of patient dependency on capacity for delivering more than the most basic care should not be underestimated SHA keen to develop early diagnosis and community support at the expense of acute trust activity PCT as yet unable to commission older age liaison service Current position Strate gic ambiti on Action plan External environment There is little in the way of direct competition, the key goals being ensuring

20. 19 Glossary The story Introductory information Current position The external environment Strategic ambition Aspirations Illustrative profile of activity shift Options appraisal Action plan Appendices Contents

21. 20 Our strategic ambition Current position Strate gic ambiti on Action plan External environment To deliver excellence in patient and carer experience Trust wide. To perform in the top quartile of National Dementia Audit measures To reduce length of stay, readmissions and care home placements To support staff in managing emotionally difficult situations, through education and clinical supervision To be recognised as a leading venue for teaching and training To support and develop a portfolio of innovation and research

22. 21 How Dementia will change: Activity shift towards 2016 Today Self Care / management healthy lifestyles Care closer to home Community services Distinguished General Hospital Specialist Super Specialist 2% 83% 15% In 2016 5% 83% 10% Scope for supporting move to early diagnosis and imaging Patients with co- morbid 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.

23. 22 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

24. 23 Glossary The story Introductory information Current position The external environment Strategic ambition Action plan Stepping stones to transition Success in 2016 Contents

25. 24 The action plan Transition Areas FROM NOW TO 2016 STEPPING STONES IN THE TRANSITION Service Configuration Pockets of expertise Widespread reports of poor experience Relatively long LOS, high rates of readmission and care home placement Excellent clinical outcomes All pathways implemented Dementia strategy Dementia Steering Group Education strategy National Dementia Audit Essence of Care Pt/Carer feedback group New pathways aware and dementia friendly Deliver strategies Dementia pathways for urgent and elective care Become a demonstration site for areas of good practice. Ensure all aspects of the NDS relevant to acute care are implemented, taking into account current guidance and best practice. By end 2010 In 2011Beyond 2011 Research & innovation Excellent Research Actively contribute to and influence national and international standards of dementia care Better mental health carer and workforce experience studies to inform developments MMHU development Alzheimer's Society dying in hospital study Use research findings and culture to drive service improvement Successful delivery of research contracts Increasing academic output Higher degrees Dissemination and publicity New bids to sustain portfolio of research Current position Strate gic ambiti on Action plan External environment Teaching and education Strong information on quality of teaching although evidence anecdotal Excellent teaching supported by robust information Demonstrably excellent post graduate medical teaching Undertake required actions to deliver information Comprehensive Education and Training Strategy Extensive new activity to deliver appropriately educated workforce Communication Strategy Ensure NUH is actively involved regionally through CLAHRC and EMHEIC to deliver research into practice Outputs

26. 25 The action plan Transition Areas FROM NOW TO 2016 STEPPING STONES IN THE TRANSITION By end 2010 In 2011Beyond 2011 Workforce Current skill gaps and retention issues. Medical workforce inadequate in some areas Limited mental health expertise Workforce trained and confident MH expertise available and embedded Recruit into all vacancies SDO workforce study results Review skill mix required to deliver excellence in dementia care Undertake local staff survey Workforce that is appropriately skilled and competent to deliver excellence in dementia care across all clinical areas Facilities and equipment Environment not generally dementia friendly Fit for purpose estate Critical assessment of all patient areas Signage, orientation cues, noise Use of the environment to reduce agitation Systems & information Limited dementia specific information eg complaints, incidents Brief discharge summaries inadequate for complex cases Clear evidence of case load, cost, service requirements, profitability etc. Ensure robust performance data Review complaints process and ensure able to deliver requirements of people living with dementia 100% electronic discharge Partnerships NHCT Primary care PCTs ASC Liaison service in place Work with external colleagues towards commissioning of older age liaison service (by PCTs from NHCT) Ensure NUH is represented locally, regionally and nationally in order to deliver requirements of NDS Current position Strate gic ambiti on Action plan External environment Inputs and enablers Ensure that ‘dementia friendliness’ is a core component of development and planning of NUH estate. Environment strategy/guidelines for dementia

27. 26 Success in 2016 Description of success in 2016 Dementia identified and special needs met Reduce LOS, increase in discharge rate to home Top quartile in National Dementia Audit Dementia identified and special needs met Families and carer concerns addressed Centre of excellence Research portfolio sustained and developed Staff wanting to work at NUH –demand for posts Clinical supervision routine Right person, right time. No blockages in pathway to drive out inefficiency Current position Strate gic ambiti on Action plan External environment Poor Teaching Excellent below average above average Patient Experience Clinical Outcomes Research Staff Satisfaction Value For Money Planned improvement in performance Increased training. Scrutiny of policies and pathways. Dementia pathway. HOW? Identify causes of poor experience. More ambitious PPI strategy. Trust priority. LBR. Academic team to continue with strong research SDO workforce study. Survey. Understand staff problems. Clinical supervision Understand impact of dementia on efficiency of all services. Needs quantifying by service/directorate..