Dementia Diagnostic Review

Transcription

1 Dementia Diagnostic Review South Worcestershire CCG Worcestershire Health and Care Trust 13 th & 14 th September July 2017 Mental Health Intensive Support Team NHS England & NHS Improvement

2 Context The Intensive Support Team (IST) for Mental Health Joint work between the NHS England Mental Health Policy Team and NHS Improvement A free resource to NHS organisations Work with local health communities that are facing particular challenges in delivery of the national priorities IST Approach Diagnostic Review Agree scope and expectations with the provider and commissioner Obtain information from provider and commissioner Additional data collection and telephone conference calls to seek clarification as required Feedback and recommendations Key references NHS England Dementia website:/mental-health/dementia/ and /mentalhealth/resources/dementia/ Prime Minister s challenge on dementia Dementia: supporting people with dementia and their carers in health and social care. Clinical guideline [CG42] Published date: November 2006 Last updated: September 2016 Dementia: support in health and social care. Quality standard [QS1] Published date: June 2010 British Medical Journal, Improving the Identification of people with dementia in primary care, Russell et al, Dementia Diagnosis and Care in England - Learning from Clinical Commissioning Groups (NHS England and NHS Improving Quality, April 2014) Dementia: Good Care Planning. Information for primary care and commissioners Implementation guide and resource pack for dementia. Cracks in the pathway- People s experiences of dementia care as they move between care homes and hospitals- Care Quality Commission- Oct

3 Scope Reasons for Engagement From a commissioner and provider perspective: To understand the reasons for current performance against validated diagnosis rates (including possible clinical, behavioural, organisational, demographic factors) To seek clarity (with the above understanding) on whether there is scope for any further improvements across the pathway in addition to the work undertaken already and confirm: The priority actions which the CCG can focus upon which will have an impact upon the diagnosis rate. The capacity for further support to primary care from CCG and Worcestershire Health and Care Trust In addition, the CCG asked for top tips/suggestions in the areas of improving engagement and addressing cultural barriers to diagnosis. The answers to these are included within the report and are also listed at the end of this report. Limitations This summary report is provided to facilitate discussion and in keeping with the nature of a diagnostic reviews, is at high level. The interpretation of IST findings should be followed up with more detailed local discussion. This report will cover: Systems and processes in primary care and secondary care Gaps and opportunities in in case finding, accurate coding and reconciliation Leadership and Management Outcomes and the patient experience of the dementia pathway The report does not cover the dementia prevalence calculation, which outside of the scope of the IST s work. Data The IST received data on the memory assessment service (MAS) establishment and activity from Worcestershire Health and Care Trust for the period between 1 st April 2016 up until 31 st March 2017, which is found in Section 3. All other data in the report (Sections 1 and 2) has been obtained mostly from monthly data published by NHS Digital. This has been updated since the feedback session where relevant, to provide the most up to date view and comparison at the time of the final report. The Commissioner and Provider will have an opportunity to request amendments to this final draft version for points of accuracy. 3

4 A carer s experience of dementia Written as a poem I am useless! she said, The tears flowing down her face. I can t do anything, can t do anything for you She shouted through the tears. These were the words that came to me As I came into the room. My wonderful wife Sitting there in abject misery, Her body so weakened That walking across the room Was an effort. Whose mind was losing to dementia. These times of clarity brought home to her An awful truth, Do you still love me? Are you going to leave me? Were the questions That kept hurting me. I tell her I love her I tell her I will always be with her, But her mind cannot accept this. She is scared, Scared that I may go, But in my mind There is only one thing that I can do, All I can do, Is love her more. 4

5 Executive summary (1) We would like to thank all staff, service users and carers who contributed to the review. They were open and honest and demonstrated a drive and enthusiasm to improve dementia services. The points below are a high level summary of the key issues to be addressed that will optimise the dementia pathway in South Worcestershire CCG, based on the IST s observations and discussions with recent service users and carers, clinical staff, managers and administrators. The high prevalence of dementia (highest in the West Midlands) is recognised in the Worcestershire strategy document which is to be refreshed. A 30% increase is expected by The many benefits of a timely identification of dementia, are outlined in the report. If commissioners are to achieve high quality responsive services to meet these individuals, their families and carers it is important that the size of this population is properly quantified as a first step. The strategy to improve rates of dementia identification needs to be pursued alongside an ongoing programme of active awareness raising to win hearts and minds in clinicians whilst addressing the fears and concerns of the public. A coordinated approach across the local health economy is also key to establishing accurate data and a pathway that maximises diagnostic capacity, including within primary care. These are some of the key areas of challenge for South Worcestershire as confirmed by the diagnostic review findings, and already known to the CCG as they are highlighted in the strategy document. It is the IST view, that these issues have continued to persist because of an absence of whole systems leadership, ownership and accountability, particularly clinical leadership, to ensure there is coordinated action to tackle ongoing pathway issues. The updated dementia strategy should be based on a full dementia needs assessment. Expanding primary care s capacity to diagnose is an important part of a strategy that is capable of providing timely diagnosis to sustainably meet the expected growth in the 65+ population. An effective decision making partnership board should be established to drive improvements across the dementia pathway, with clarity on the contribution that all partners will make to this goal health and local authority commissioners, primary care, secondary care, clinicians and the voluntary sector. 5

6 Executive summary (2) There are important opportunities to reduce variation amongst the CCG s practices as there are clear pockets of good practice amongst GP practices, often within the same locality which need harnessing for shared learning. In the first instance, the largest gains to improve dementia identification rates will be from actions in: a) Reconciliation and case finding in care homes, b) Systematic QOF register reconciliation with specialist mental health records, eliminating the current barriers which prevent the timely transfer to GP records, c) Systematic cleansing of primary care registers using the Dementia Quality Toolkit to improve coding accuracy d) Standardising the definition of MCI and the review of all current potential cases of mild cognitive impairment. The currently commissioned capacity in the countywide memory assessment service has not been keeping up with demand. The partnership board needs to ensure that the new model: a) Addresses reticence across primary and secondary care in making a formal diagnosis. b) Minimises wasted opportunities for diagnosis in clinical decision making, such as the lack of recognition of Mild Cognitive Impairment and multiple referrals prior to a diagnosis being confirmed as experienced by a number of patients. c) Resolves inappropriate referrals and high attrition rates. d) Establishes lean processes in the memory assessment service (EIP/CMHT) which currently is unclear in its points of entry, and reduces the steps to diagnosis and known long waits. e) Once new pathways are established across the whole system, ensure that the memory assessment service has the necessary capacity in place to deliver the model and achieve agreed waiting standards. Robust governance and reporting arrangements should be prioritised in the new model so that there is regular review, senior visibility and oversight of the pathway with the expectation of improved service outcomes and response times in line with local and national expectations. The assurance and contract processes should be leveraged to provide oversight on the timeliness and quality of service data from the provider. A full set of recommendations is provided at the end of this report. 6 6

7 Section 1 The commissioning context, diagnosis rates and care planning

8 Commissioning context: County of Worcestershire Worcestershire Health and Care Trust (WHCT) is commissioned by the CCG Mental Health Commissioning Team under a block contract arrangement to deliver memory assessment services (MAS) for the 3 CCGs: South Worcestershire, Redditch and Bromsgrove and Wyre Forest CCGs, which cover the county of Worcestershire. The memory assessment service is an entirely specialist model in which an Early Intervention Dementia service (EIDS) has been established to assess dementia in the early stages for those likely to gain from advice and support. The Early Intervention and Diagnosis Service provision sits within WHCT s Older Adult Mental Health service (OAMHS) which provides a range of specialist services for older adults with mental health problems. These include Community Mental Health teams (CMHT), day support and inpatient services across the county. In line with good practice, other services supporting dementia within the EIDS county wide provision are: Admiral nurses Carers support with dementia awareness training Peer support via Alzheimer s society Dementia café s Support for carers of people living with dementia include a psycho-educational programme provided by WHCT Dementia Advisor service provided by Age UK Young Onset Dementia Service ConnectED, a provision for people with a dementia diagnosis under 65 years. There is a dementia action alliance in each locality within the county of Worcestershire, along with active voluntary sector engagement. In the county of Worcestershire, a diagnosis of dementia can be made by the GP and at the EIDS. Those with moderate to severe presentations of dementia, challenging behaviours and psychiatric symptoms are referred to the Community Mental Health Team (CMHT) for a diagnosis. The GP is the key gatekeeper of referrals to EIDS and CMHT. The current service specification between the 3 CCGs and the EIDS references interagency relationships between statutory services, voluntary, independent and private agencies at points of transition. It particularly recognises the particular needs of groups with high prevalence of dementia such as Learning Disability and Black and Ethnic Minority groups and emphasises the need for seamless care pathways. This is good practice. 8 8

9 Gaps and opportunities: Commissioning strategy The most recent 5 year Worcestershire dementia strategy expired in 2016 and a refresh of this strategy is planned. However plans to redesign of the county s Older Adult Mental Health pathway are actively underway, which includes the provision of memory assessment service. The outdated strategy identified the county of Worcestershire as having a higher proportion of older people aged 65 or over (122,200, 21.2%) compared to the national level (17.3%) and with depression and dementia being the most common mental health problems affecting 9% and 7% respectively. The IST heard that since 2010, no new capacity commissioned for the service and it has struggled to keep up with demand. Originally commissioned on the basis of 600 referrals a year in 2010, the current referrals into the countywide EIDS has doubled. It is recommended that memory assessment services are effectively commissioned such that it is capable of assessing and diagnosing two thirds of those expected to have dementia and meet the aim of increasing the numbers achieving a diagnosis in 6 weeks. The planned new model of service should be informed by an updated dementia needs based assessment to understand the changing needs of the population in the next years as part of a coherent whole system dementia strategy that is developed with partners. The IST also noted the absence of an effective Dementia Strategy group, accountable for the whole Dementia Pathway. We did not see evidence of a robust action plan already in place and shared by partners across the entire health economy. The recently reconstituted Dementia Care planning group brings together representatives from public health, voluntary sector but is not a decision making group as it is focussed on the sharing of best practice across the county. Until recently, the group did not have GP representation. The current lack of clinical leadership and effective partnership arrangements misses an opportunity for leadership and accountability from both primary and secondary care and local authority to drive strategy implementation. It is recommended a Dementia Strategy group is established for the whole Dementia Pathway that is inclusive of clinical representation with board level accountability for the strategy s implementation. The current service specification covers and has not been revised during this time, a potential missed opportunity for more creative use of services and funding. We heard there was disjoint in the links between primary care and the voluntary sector. The revised service specification to be developed for the new service model should be underpinned by clear outcome measures & KPIs and achieve a streamlined pathway with clarity of roles and responsibilities in diagnosis (including in care homes) and also post-diagnostic support. The principle of ensuring that every encounter counts should be considered. 9 9

10 Gaps and opportunities: Commissioning strategy Cont. In our discussions with staff, service users and the CCG, we heard differing views on the issue of reticence in either patients getting a confirmed diagnosis by services in South Worcestershire or in presenting to get a diagnosis. Specifically the following is recommended to address clinical and patient reticence: A public health campaign should be considered to increase awareness of Dementia, tailored to the concerns of the local population, harnessing the resources of people living with dementia, their families and carers as Experts by Experience. The use of appropriately skilled staff to champion the benefits of a diagnosis and to work with people who are reluctant to be assessed and receive a diagnosis. The voluntary sector may have more community links and may be best placed to do this. The implementation of a planned programme of awareness and education sessions for primary care, care homes and secondary care staff to ensure a cohesive message. CCG to support and re-engage GP practices to be part of the Dementia Strategy and understand their role. Support and engagement in the Dementia Action Alliance to ensure that health and social care organisations in the county are represented in the list of Dementia Friendly organisations. 10

11 Percentage (%) The SWCCG diagnosis rate Dementia Diagnosis Rate 70% 68% 66% 64% 62% 60% 58% 56% 54% 52% 50% April May June July August September October November December January February March Diagnosis Rate ( ) 55.0% 55.2% 56.1% 56.4% 56.5% 56.7% 56.8% 57.0% 56.5% 56.2% 56.1% 55.9% Diagnosis Rate ( ) 57.7% 57.3% 58.0% 58.0% 59.4% 59.4% 59.4% Plan Diagnosis Rate ( ) 58.0% 59.0% 60.0% 62.0% 64.0% 67.0% 67.0% 67.0% 67.0% 67.0% 67.0% 67.0% Plan Diagnosis Rate ( ) 67.2% 67.0% 66.7% 66.4% 66.3% 66.2% 66.2% Diagnosis Rate - England (Current Year) 67.9% 67.8% 68.0% 68.0% 68.2% 68.2% 68.6% Standard 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% 66.7% The dementia diagnosis rate (DDR) is a count of the number of people aged 65 and over with a diagnosis of dementia recorded in primary care QOF registers, expressed as a percentage of the estimated prevalence. Estimates of prevalence are derived from applying CFAS II prevalence rates to the 65+ GP registered population and also takes account of the care home population. In the most recent data in October 2017, SWCCG s diagnosis rate was 59.4%. The CCG s DDR has persistently fallen short of the two thirds ambition (66.7%) which was to be met by April The CCG has benefited by a 1.9% increase its DDR, as a result of CCG prevalence based on practice list size introduced in April In the national planning guidance all CCGs are being measured directly against the 66.7% target and not on individual CCG plans, to ensure that sustained gains are made by underperforming CCGs towards meeting the ambition. Source: NHS E Analytical services South: Dementia Diagnosis rate report October

12 DDR comparison in similar CCGs South West Lincolnshire Kernow South Worcestershire Dementia Diagnosis Rate South Warwickshire Hambleton, Richmondshire and Whitby High Weald Lewes Havens East Riding of Yorkshire West Cheshire Wiltshire Canterbury and Coastal Dementia Diagnosis Rate Lower Confidence Interval Upper Confidence Interval England Lower CI England DDR England Upper CI Shropshire An analysis by Public Health England identified the above CCGs as sharing similar population characteristics most relevant to dementia. These are deemed as suitable comparators for SWCCG for benchmarking purposes, to highlight where good practice may be learned from, in either primary care or MAS services in the rates of dementia identification. Further comparisons are made with this group of CCGs in the later sections of the report. Whilst only 2 of these comparator CCGs achieved the ambition in July, four other CCGs are far nearer to the ambition rate in comparison. SWCCG is amongst the top 10 outliers in the country, a position that is consistent with poor performance rather than any factors specific to the CCG population. Shropshire CCG and Canterbury and Coastal CCG in particular share similar population characteristics with SWCCG in regards to deprivation decile and Centres with Industry ONS cluster. Data source: NHS Digital monthly dementia diagnoses, July

13 65+ Population Comparison Distribution of Population % 80% 90% 70% 80% 70% 60% 60% 50% 50% 40% 40% 30% 30% 20% 20% 10% 10% 0% South Warwickshire West Cheshire South Worcestershire Wiltshire Shropshire Canterbury and Coastal England High Weald Lewes Havens East Riding of Yorkshire South West Lincolnshire % 65+ Population Aged % 65+ Population Aged % 65+ Population Aged 85+ DDR Hambleton, Richmondshire and Whitby Kernow 0% The graph above shows little difference in the 65+ age profile between that of SWCCG and comparator CCGs and thus appears to further validate the choice of comparator CCGs. Data source: NHS Digital monthly practice registrations, August and monthly dementia diagnoses, July

14 Recorded dementia prevalence comparison 5% Registered Dementia Diagnoses Over 65 As A Proportion of Population Over 65 4% 3% 2% 1% 0% South West Lincolnshire Kernow South Worcestershire Hambleton, Richmondshire and Whitby South Warwickshire East Riding of Yorkshire High Weald West Cheshire Wiltshire Canterbury and Lewes Havens Coastal Shropshire 97% of dementia diagnoses occur in the 65+ age group. The graph provides a comparison based on the levels of recorded diagnoses in the 65+ population (i.e. recorded dementia prevalence) as a proportion of the CCG 65+ list size. This further confirms the CCG s position as an outlier in its levels of recorded dementia diagnoses amongst its peers. Data source: NHS Digital monthly practice registrations, July and monthly dementia diagnoses, July

15 Care planning Elbury Moor Medical Tenbury Surgery St Martin's Gate Severn Valley Abbottswood Medical Thorneloe Lodge Whiteacres Medical Spa Medical Practice England Barbourne Health Corbett Medical Malvern Health Centre CCG Salters Medical Practice New Court Surgery Ombersley Medical Pershore Medical Haresfield House Great Witley Surgery Albany House Surgery Spring Gardens Riverside Surgery Bredon Hill Surgery Link End Surgery Dr. J Barrell & Partners Grey Gable Surgery Demontfort Medical St Johns House Knightwick Surgery Abbey Medical Practice Merstow Green St Saviours Surgery Barn Close Surgery Farrier House Surgery Care Plan Reviews 86% 84% 82% 80% 78% 76% 74% 72% 70% 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Dementia Patients Receiving a Care Plan Review (Left Axis) Data source: Public Health England Fingertips Tool, FY2015/16 Care Plan Reviews as a Proportion of 65+ Diagnoses, October June % 70% 60% 50% 40% 30% 20% 10% 0% The value of a timely dementia diagnosis is that it translates into: high quality care planning (including advanced care planning) to meet the changing needs of the individual over time access to services which support patients and their cares and families access to cognitive stimulants to slow the progression of dementia a plan of action that supports the effective management of the individual s needs and symptoms, if needed in the care home For timely diagnosis to be meaningful to the individual and their families, effective care plans will need to be in place in every case and be regularly reviewed and updated, at least every 12 months to remain relevant and responsive. In this context the 70% QOF target threshold for Care Plan Reviews should be viewed as the starting point. The CCG performs well compared to comparator CCGs (top left graph). Many of it s practices are achieving this (bottom left graph) but there is variable practice. In one practice almost 60% of those diagnosed do not have a care plan, a missed opportunity for patient care and practice income. (NB:This data does not form part of the QOF data set; it is extracted from primary care systems data; see slide 25). 15

16 Wider impacts 4,000 3,500 3,000 2,500 2,000 1,500 1, % 45% 40% 35% 30% 25% 20% 15% 10% 5% 0% Emergency inpatient hospital admissions per 100,000 Rate of Emergency Admissions With Mention of Dementia (Left Axis) Short Stay Inpatient Admissions Admissions for People With Mention of Dementia that are Short-Stay (Left Axis) 80% 70% 60% 50% 40% 30% 20% 10% 0% 80% 70% 60% 50% 40% 30% 20% 10% 0% Data source: Public Health England Fingertips Tool, FY2015/16 It is known that 40% of older people in general hospitals have dementia, and their length of stay is twice that of people without dementia. People with dementia in hospital are twice as likely to fall; an event which quadruples length of stay. A quarter of delayed discharges and 10% of readmissions within 30 days concern people with dementia. When dementia is not identified early it is a missed opportunity to: Delay decline (from cognitive enhancing medication) Reduce individual and carer distress resulting from absence of support to live a full life that begins with identification Avoid unnecessary and avoidable hospital admissions and increased lengths of stay (e.g. from care home settings) Reduce transfers to care home (institutionalisation) Effectively manage health care resource utilisation through lack of visibility of the needs of this group in the context of expected growth in the population of older people. The CCG appears to does well compared to its peers in emergency admissions and short stay admissions with a mention of dementia. However, this does not reflect numbers of admissions to community hospitals that mention dementia. The IST recommends routine oversight of the emergency admission and short stay admission data (see graphs on the left) as valuable contextual information that highlights the impact of poor dementia care. 16

17 Section 2 Systems and Processes in primary care Monitoring, coding, case finding and reconciliation

18 Previous work to improve identification in primary care Currently the CCG does not have a designated clinical lead with responsibility to lead on dementia improvement work in primary care. It is our understanding that the CCG is seeking to appoint to this role. Previous work undertaken by the CCG to improve rates of dementia diagnosis include: Coding cleansing searches Care home reconciliation exercises to identify those confirmed with diagnosis which were not coded in QOF register Communications to practices from the CCG on the benefits of the above interventions and in regards to achieving timely diagnosis to patients and their families. Arrangements made with WHCT to provide secondary care data for practices to validate their QOF registers 6- monthly. Targeted visits by the CCG GP frailty lead to low performing practices and their care homes to explore issues and barriers and improve GP engagement Memory loss advisor pilot to address patient reticence and improve identification rates in practices in one of the 4 localities in SWCCG. Mandatory training to improve GP confidence to diagnose by highlighting support services available. These areas will be further explored in the slides that follow. 18

19 Practice level data 4,000 3,500 3,000 2,500 2,000 1,500 1, List Size 65+ Data source: NHS Digital monthly practice registrations, August Estimated Practice-Level Gap to Ambition Recorded Prevalence Gap to Ambition Data source: Derived from NHS Digital monthly dementia diagnoses, July South Worcestershire CCG comprises of a total of 32 practices, spread across 4 localities: Droitwich, Worcester, Malvern Pershore and Upton, and Evesham Bredon and Broadway. The top left graph shows the distribution of the 65+ population across the CCG s group of 32 practices. The CFASII study estimates dementia prevalence to be 6.5% of the 65+ population, on which the DDR indicator is based. 97% of dementia diagnoses are found in this age group and therefore it can be expected that dementia identification rates would be commensurate with the size of this population. The CCG s estimated prevalence as at July was 4, That month a total of 2,491 were recorded in GP QOF registers as having a dementia diagnosis, leaving a gap of 375 diagnoses to meet the two thirds ambition. In the bottom left graph, the contribution per practice towards the CCG gap, apportioned on the basis of practice 65+ list size highlights where the biggest gains can be made, however improvements are expected to be made in all practices with a gap. It also highlights variable practice within the same locality with opportunities for good practice to be learned from well performing practices such as St John s House surgery by Severn Valley and Haresfield House and similarly from Malvern Health centre by Pershore Medical practice. 19

20 Achieving accurate GP records: coding a. Accurate coding Inaccurate coding or poor harmonisation (reconciliation) of records may mean the dementia diagnosis rate is underreported. It is known that data harmonisation can increase numbers of diagnoses captured in QOF registers by as much as 8.8%. We saw evidence of communication from the CCG advocating that practices conducted coding cleansing exercises every 3mths which is good practice. It suggested a number of searches to identify patients who have a coded entry that is indicative of dementia but are missing the correct diagnosis code that would record the patient on the QOF dementia register. The CCG did not monitor the outcome of these searches at practice level and was unclear as to the extent to which the nationally recommended Dementia Quality Toolkit (DQT) is being used by their practices. The recommended search in the CCG communication was a limited list in comparison to that contained in the DQT which offers a standardised comprehensive set of system searches compatible with EMIS Web (the clinical system used by SWCCG practices). For example the DQT includes a search for a history of referral to memory clinic which was an important omission from the CCG recommended search given its concerns about the low rates of confirmation by its specialist memory assessment services (EIDS). It is good practice to run DQT searches at least every 6months to ensure accurate coding that is captured on the QOF register. However, over time, the numbers of flagged records from DQT searches can be expected to diminish with increased coding accuracy. To enhance the efficiency of this process, it is recommended that mechanisms are put in place to ensure previous records flagged and reviewed do not appear in future searches and that all flagged records are reviewed with outcomes appropriately coded. To remove patient from the Work to do list, an appropriate READ code should be added that correlates to the dementia register or where patient requires no further investigation this should be inputted using READ code 6A5 or CTV3 code Xalpj. Data source: Derived from NHS Digital monthly dementia diagnoses, July

21 Percentage of Patients Achieving accurate GP records: data reconciliation The graph below shows data from the now retired national acute care CQUIN which required that case finding is undertaken in 90% of those aged 75yrs and over admitted as an emergency admission for over 72hrs. 90% of these are to be assessed and referred as appropriate, for diagnostic confirmation.the NHS standard contract expectation is that retired CQUINs become part of business as usual. Trusts are therefore required to continue to report Dementia assessments and referrals and performance continues to be monitored nationally. 100% 98% 96% 94% 92% 90% 88% 86% 84% 82% 80% Summary of Acute Activity for Dementia Patients Worcestershire Acute Hospitals Trust May-16 Jun-16 Jul-16 Aug-16 Sep-16 Oct-16 Nov-16 Dec-16 Jan-17 Feb-17 Mar-17 Apr-17 May-17 Referred on to Specialist Services Diagnostic Assessment Case Finding The data shows that case finding and assessment is now at the required levels having been inconsistent in the last year. It is our understanding that people identified as requiring specialist referral in acute care can be referred directly into the EIDS in line with good practice. The CCGs have sent written communication encouraging practices to cross reference the list of confirmed diagnoses provided every 6 months by EIDS and CMHT services with their QOF registers which is also good practice. The CQUIN diagnostic outcome in an additional opportunity to establish an accurate view of people diagnosed with dementia in South Worcestershire The process of reconciling the QOF register is reliant on high quality and timely data from the specialist (further discussed in Section 2) and timely action by practices and it is unclear whether this is being monitored to assess the impact to practice QOF registers. This is recommended to ensure that the system is working as it should. Data source: NHS England, May 2016 May 2017 FAIRI 21

22 Case finding in primary care A diagnosis of dementia can be made by any appropriately skilled clinician in primary care and secondary settings. Whilst neuroimaging is recommended by NICE (Clinical Guideline CG42) as a necessary part of dementia diagnostic investigations, the guidance allows for clinicians to exercise judgement, so that the absence of a CT scan should not prevent diagnosis if there is other compelling clinical evidence to support it. Where a GP makes a diagnosis in a primary care setting without referral to a memory assessment service it will usually be in more advanced cases which are more straightforward to diagnose. In the SWCCG dementia pathway, the GP is key in the route to confirming a diagnosis of dementia when a person, family or carer is concerned about memory problems. The following key challenges and barriers in improving diagnostic rates were reported to IST: 1) Lack of GP engagement and confidence to diagnose We heard conflicting messages about the confidence of GPs to diagnose. We understand that in the previous 2-3yrs, GPs were content to diagnose straight forward moderate cases of dementia whilst referring those with early symptoms of cognitive decline where there was uncertainty about diagnosis to EIDS in line with the service s key criteria. The CCG cited lower than expected confirmation rates and a reluctance to diagnose in secondary care as fuelling GP reluctance and lack of confidence to diagnose. In particular, mild cognitive impairment (MCI) was not recognised by EIDS and many of the referral outcomes communicated to GPs would fit this category of diagnosis. Consequently MCI is not coded in primary care systems and there was no pathway in place to track this group of patients. The CCG reported that level 3 mandatory training had been provided in the last year to boost GP confidence to diagnose. The half day training was aimed at practice leads and focussed on improving awareness of support services in the county. There was no evaluation of the impact of the education in raising confidence, improving GP diagnosis, or evidence of the cascade of this information to other members of the primary care team. The training did not seem to involve the practical aspects of defining the pathways/coding/audit. 22

23 Case finding in primary care (2) In conversations with the commissioners, it emerged that there were no diagnostic protocols in place to guide dementia diagnosis in primary care and there was a lack of clarity on the referral and care pathways available on EMIS, how they work, and how and when to refer. We understand that another barrier to engagement with increasing identification rates was the negative legacy of the dementia identification scheme directed enhanced service of 2014 as certain GPs were fundamentally opposed to being incentivised to improve rates of identification. However, we also heard from clinical staff that in some community hospitals 70-80% of patients present with visible cognitive problems that do not have a recorded diagnosis, suggesting that there is further scope for diagnosis in primary care. It is recommended that: Clear referral and diagnostic protocols are developed with access to specialist advice, to support GPs to routinely 1). diagnose and signpost to ongoing support in straightforward moderate to severe cases in the frail and elderly who may not benefit from formal MAS assessment, 2) diagnose those unwilling or unsuitable to be referred to memory clinic e.g. those in care home settings. A programme of educational event is implemented such that it is individualised and targeted more precisely at GPs learning needs given the evidence of variable practice seen amongst the CCG s practices (slide 19), - for example the role of the GP in diagnosis, the evidence base for benefits of diagnosis, details of the local diagnostic and post diagnostic pathway and support services. The learning event must include clear evidence of the benefits of diagnosis and be led by clinicians used to motivational speaking. 23

24 Case finding in primary care (3) 2) Patient reticence The issue of the stigma of dementia diagnosis and patient reticence which often prevented further investigation of memory problems or a formal record of diagnosis in medical notes, was also raised as a key barrier. It was reported that patients had concerns about the impact of a formal diagnosis on their insurance premiums. Other concerns were DVLA rules on driving, reported as a particular issue in rural areas, amongst farming communities and the elderly population. Patient consent to further investigation and diagnosis is important. A key consideration is whether someone has capacity to understand the risks versus benefits of refusal. If they do not have capacity then a diagnosis can be placed on the records in a best interest decision. Ultimately records of formal diagnosis should be accurate. Where the patient has capacity, the approach and skill of the clinician is key in actively working with patients to dispel the fears and help them to come to terms with the diagnosis (usually with family support). The voluntary sector is well placed to also support this process by championing the benefits of a diagnosis and support patients who are reluctant to be assessed or receive a diagnosis. A memory loss advisor service piloted by the CCG in one of the South Worcester localities (EBBI) for 9mths to address patient reticence targeted practices with low recorded prevalence. GPs were encouraged to refer such patients and their families to this service to improve their awareness of the benefits of diagnosis and encourage them to pursue investigation of their memory problem. Following initial memory screening (GP-Cog tool), the memory advisor would either refer to the EIDS or back to the GP for diagnostic confirmation. At the time of the visit the outcomes of the 329 referrals into the pilot were yet to be evaluated. CCG senior leadership felt the pilot achieved good qualitative work in promoting awareness and confidence in patients, but were not confident that it resulted in any significant change in the rates of diagnostic confirmation. It is recommended that a number of creative approaches, customised to different characteristics and behaviours in the local population, are adopted to tackle patient reticence, learning from other similar geographies with rurality. The collective efforts of the voluntary sector and memory assessment service and experts by experience should be brought together to support this. It is also recommended that best practice from the pilot locality is shared across the primary care community. 24

25 Primary care assessment and referral activity The graph below shows the cumulative activity per practice in the levels of dementia screening, structured memory assessment and referral to specialist memory services from October 2016 to July 2017 (all left axis). A comparison is made with the 65+ list size (right axis and red dots) to determine the extent to which assessment and referral activity correlates with this Assessment and Referral Activity, October July 2017 Assessments Memory Assessments 4,000 3,500 3,000 2,500 2,000 1,500 1, The data appears to show substantial variation in the levels of activity amongst practices. It should be noted that this dataset does not form part of the QOF data set but is derived from data extracted from primary care systems (previous national dementia enhanced service). We were told that in the SWCCG pathway, most diagnoses occur in the OAMHS memory assessment service (EIPH and CMHT), however this is not sufficiently reflected in the referral activity (green colour on bars) seen in the graph. This is likely to be a reflection of inconsistent coding by practices and thus conclusions cannot be made on the level of practice engagement with dementia case finding. The CCG confirmed that accurate Read coding amongst its practices is a recognised issue. The IST views this type of data as valuable contextual information that could confirm adherence to local guidance on screening assessment and referral in primary care. It would highlight the need to consistent accurate coding and evaluate the impact of efforts to improve primary care capacity to diagnose. It is recommended that assessment and referral activity forms part of the information that is routinely shared with practices. Data source: NHS Digital monthly dementia diagnoses, July

26 Case finding in high risk groups and co-morbidities Some groups have high rates of dementia, with prevalence rates estimated as follows: 80% of people with Parkinson s disease will develop dementia 20% of people who have had a stroke will develop dementia within 6 months. Alzheimer's disease prevalence is high 2 years following a stroke. Learning disabilities, with over 50% of people with Downs syndrome developing dementia by age % of residents in care homes have dementia The IST did not see evidence that case finding was occurring routinely and systematically within high risk groups and the strength of the links between these pathways and the OAMHS memory assessment services (EIDS and CMHT). It is recommended that systematic case finding work is implemented in at risk populations (e.g. stroke, Parkinson s disease etc.) starting with reconciling diagnoses in these groups with GP practice dementia registers. SWCCG has 75 care homes and 2,500 residents. Until recently care homes in Worcestershire had been described by CQC as excellent but we heard that there had recently been several care home suspensions resulting from CQC inspections along with high turnover of care home managers. The CCG has good information of the alignment of care homes to each of its practices and of the proportion of residents both with or without a diagnosis of dementia, which is good practice. This suggests direct links are in place between care homes and GP practices for clinical management in line with good practice. Some targeted work has been carried out in care homes with low numbers of dementia diagnoses where GPs have been asked to undertake a reconciliation exercise where a previous record of diagnosis had not been recorded on the QOF register. We neither saw evidence that diagnostic case finding had been undertaken, nor were recognised tools such as DiADeM/DeAR GP in routine use to support this. A third of practices did not respond to the CCG s recent call to action for a reconciliation exercise in care homes prior to diagnostic visit. Amongst these were a couple of practices with large numbers of care home residents but low recorded prevalence. 26

27 Case finding in care homes A diagnosis of dementia for this group of patients is an opportunity for a care pathway of interventions to improve care and prevent unnecessary hospital admission through medication review, Advance Care Planning in discussion with relatives and Prevention of Delirium Care Planning. This pathway should also be used for all patients admitted to a care home. Discussions with the CCG revealed a lack of recognition by senior members present, of the value of dementia diagnosis in those already resident in a care home as it was felt that the opportunity for early intervention was lost. This presents a challenge in the ability of CCG leadership to win hearts and minds of GP s if they are not also engaged. The management of Behavioural and Psychological Symptoms of Dementia (BPSD) which can often be a particular issue for care homes and lead to inappropriate levels of antipsychotic prescribing. The CCG was not able to provide information on antipsychotic prescribing for its 65+ list population or for patients in care homes. The CCG was also not aware of the rates of emergency admissions to acute hospital from care homes. It is recommended that: Commissioners develop and lead on a clear plan for ongoing, sustained case finding through diagnosis in the care home population, building on the reconciliation exercises already done. A programme of awareness and education sessions for primary care, care homes and secondary care staff is implemented to ensure a cohesive message across the system about the value of diagnosis in the care home population. Care homes should be supported to become dementia friendly. A strategy is developed and implemented on the training of GPs and care home staff in the use of the DiADeM Tool and DeAR GP case finding tools respectively, supported by clear protocols to gain accurate diagnosis and recording of diagnosis of all people admitted to care homes. Routine screening, Advance Care Planning and prevention of Delirium Care Planning is introduced in all patients admitted to or diagnosed with dementia in a care home to reduce emergency admissions for this group of patients. Regular monitoring is undertaken at CCG level of the number of patients in a care home with dementia who undergo a Dementia Care Planning Review ( QOF), along with the levels of care home admissions to hospital correlated to dementia. 27

28 Gaps and opportunities in primary care In addition to the recommendations already made, it is the IST s view that the following underpinning actions are key, without which improvements efforts are likely to achieve limited impact: i).whole system leadership with accountability to: Work collaboratively to achieve a coordinated pathway to ensure that referral, diagnostic, communication and reconciliation processes work effectively Empower and improve the capacity of primary care to diagnose, and establish a system that identifies and proactively tracks cognitive decline over time (e.g. MCIs), as the lack of confidence to diagnose is a missed opportunity for timely intervention and support Establish joint working between primary and secondary care to agree a standard memory assessment tool, protocols referral, diagnosis and scanning, including the definition and management of MCIs, post-diagnostic review, shared care protocols for follow-up of cognitive stimulants in primary care. ii).the appointment of a dedicated CCG clinical lead to promote dementia friendly practice and with dedicated leadership time to win the hearts and minds of GPs, who in turn can act as advocates for dementia services championing the importance of access to timely diagnosis, treatments and support. Out of the CCG s 32 practices, only 1 was dementia friendly at the time of the visit and we were told an additional 4 practices were working towards this. In our discussions, the CCG highlighted difficulties with winning hearts and minds amongst clinicians in its practices. The IST recommends an engagement programme with primary care that highlights missed opportunities for additional practice income as well as most importantly high quality patient care. iii). Proactive, systematic and sustained effort: The CCG does share benchmarking data with its practices, but there seemed to be a lack of awareness amongst those present about what was monitored and benchmarked. It was reported there are good data sharing arrangements with its practices. All of its practices use the EMIS electronic clinical system, an added opportunity for the development of standardised CCG templates and coding sets to support good coding and reconciliation. We did not see evidence of this being in place. 28

29 Gaps and opportunities in primary care (cont.) The consistent use of an agreed dataset, codes and shared templates developed and agreed for use in primary and secondary care is recommended as it enables: Data capture of the patient s referral pathway, making CCG level monitoring possible. Data capture and cross reference in high risk populations to underpin targeted case finding and support in these groups. The CCG has a good understanding of the key interventions required to improve rates of identification that would record in QOF registers. Whilst previous efforts are acknowledged, they have often been implemented in a reactive and piecemeal way and have not always been assessed for impact. For example an approach taken to assesses practice participation rate, numbers of patients reviewed and outcome in coding reviews (e.g. using the DQT) and diagnostic reconciliation. The intermittent efforts are likely to have added to GPs feeling that they are being done to rather than that best practice has been implemented for the benefit of patients and health efficiencies. It is recommended that: As a first step the reasons for variation amongst the practices is explored, comparing with neighbouring high performing practices for opportunities for buddying and targeted work to improve engagement. The CCG shares with practices a range of information on the ambition gap and data on assessment and referral activity to highlight the impact of training on activity. This requires a data set which is adopted by all practices. At an STP level, contextual measures on the wider impacts of the dementia pathway may hold significant opportunities for better utilisation of health resources. e.g. emergency admissions (including from care homes), short stay admissions, deaths in usual place of residence, rates of antipsychotic prescribing, care home admission data, usage of community beds, lengths of stay, delayed transfer of care. An ongoing and sustained programme of diagnostic data harmonisation and data cleansing of practice registers is implemented supported by GP champions to improve buy-in. A data code set and extraction should be utilised to monitor engagement and effectiveness of the intervention. Re-running the DQT searches at regular time intervals (6mthly) helps the practice to demonstrate that they are fulfilling their QOF requirement in maintaining their dementia register. In regards to data entry for reconciliation, ensure that practices have a named lead to ensure timely transfer of 29 updated diagnosis data received from WHCT onto QOF registers and assure systematic reconciliation. 29

30 Section 3 Systems and Processes in secondary care Model, administrative processes and waiting times

31 The WHCT referral and diagnostic pathway Within the Older Adult Mental Health service (OAMHS) provided by WHCT, investigation and diagnostic confirmation of dementia occurs within the Early Intervention Dementia Service (EIDS) and also in the Community Mental Health Team (CMHT). The service particulars and data described in this section of the report refers to EIDS. Commissioned in 2010, the EIDS was established as a diagnostic service for dementia in those at the early stages of cognitive decline, as this cohort of people was thought to have the most to gain from advice and support to slow the progress of cognitive and functional decline (through cognitive enhancers). It is an ageless service, accepting referrals from both the under 65 s and over. A home service is available to the housebound. EIDS does not accept referrals for assessment and diagnosis for those where some element of complexity is already present i.e. organic and functional illness. In the current service model this patient category are expected to be referred to the CMHT for this purpose. According to staff the share of all referrals received EIDS and CMHT was approximately 25% and 75% respectively. Once a referral is received by the EIDS, this is followed by a pre-assessment home visit by a memory nurse allocated to the referring GP surgery. The pre-assessment appointment prepares the person to adjust for the possibility of a diagnosis of dementia and is an opportunity to reflect on what this would mean for them in line with good practice. The service specification stipulates a response time of 18 weeks from referral to treatment, with first contact (preassessment) within 7 working days from receipt of referral and first assessment completed within 4 weeks from first contact. When a diagnosis is confirmed, post diagnostic counselling is offered and includes information on support services and advice on key issues to plan for (e.g. lasting powers of attorney etc.). The person is also offered up to 14 sessions of cognitive stimulation therapy. For those in whom this is appropriate, cognitive enhancers are prescribed within 2 weeks of diagnosis, under the direction of the consultant either in the service or by the GP. These are reviewed by the nurse in clinic and once the patient is stable, continued by the GP under a shared care protocol. A Living well with dementia course is offered to the patients and their carer and covers coping strategies, support for families where links are made with dementia advisors in the community. EIDS is an accredited service by Memory Services National Audit Programme (MSNAP), with dedicated and passionate staff committed to continuous improvement of the service 31

32 EIDS service activity The data presented in this section pertains to activity data from 01/04/16 31/03/17 for the Early Intervention Dementia Service (EIDS) only. It is therefore only a partial view of referral and diagnosis activity for SWCCG as it excludes activity from GP referrals into the CMHTs. Only 49% (280) of the 576 referrals received by the service convert to a first appointment. Of the referrals received, 18% (106) are declined as inappropriate for EIDS. We were told that these are not in fact rejected by EIDS but redirected to CMHT as these patients had a level of complexity which excluded them from the EIDS service criteria. This leaves 190 referrals (33%) unaccounted for in the high attrition levels (51%). It is recommended that reasons for attrition is audited. EIDS service statistics Referral date= 01/04/16 31/03/17 Referrals received 576 Referrals declined 106 First appointments 280 Waiting list for first appointment (31/03/17) 112 First appointment DNA rate 7% Routes of entry: It is our observation that the level of complexity and risk is insufficiently defined in current referral protocol/template to give clarity to the referring GP which service to refer the patient to. The apparent lack of clarity on the routes of entry into the EIDS and CMHT, risks referrals falling between the gap of these services. Patients discharged 526 Open pathways (not discharged as of 31/03/17) Inappropriate referrals: Discussions with staff highlighted poor quality GP referrals as a key contributory factor citing that up to 25% of referrals were incomplete and required further information. Self-referrals are not accepted as a deliberate measure to encourage GPs to complete investigations (e.g. blood tests) prior to referrals in line with QOF requirements. This approach may inadvertently be a barrier to future referral. The following is recommended in the future service model: One diagnostic service with one single route of entry to enable all referral activity for memory assessment to be accounted for. Ensure that triage to the most appropriate service takes place once the referral is received to reduce the possibility of re-referral. A more open memory assessment service able to access primary care records to gather past medical history etc., to improve flow of patients into the service. A referral protocol with a templated referral letter is jointly developed with active primary care clinical input, to reduce inappropriate referrals for more efficient use of the memory service resources. This should include an agreed cognitive assessment tool (such as GP-COG) in primary care (ideally electronic within the GP clinical system) to improve the quality of screening and referrals. Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team

33 Pre-diagnostic pathway Staff reported that the service has a low staff turnover and is adequately staffed; the service had a good reputation and staff retention was good. The IST was told that none of the nurses in the EIDS have had advanced practitioner training. First assessment appointment is consultant led and clinic based with the ACE-II being the structured assessment tool of choice. The exception is in the frail and housebound where the history suggests a strong possibility of dementia. In these cases, an all-in-one assessment and diagnostic appointment is undertaken by the nurse with consultant input. We heard that these were becoming increasingly common. EIDS and CMHT services cannot refer directly to neurology should this input be required in the assessment process. The current model, requires the GP to make this referral, which lengthens the assessment pathway for the individual and is not good practice. WHCT EIDS Staffing establishment aligned to SWCCG Consultant psychiatrist 0.7 Clinical psychologist 1.0 Band 6 nurse 6.0 Occupational therapist 3.4 Staff in post (WTE) Medical trainee 0.63 Support worker/hca 0.93 Admin 2.6 Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team Diagnosis is made based on CT scan and diagnostic history. CT scan is the routine form of imaging used and most SWCCG GPs have their patients scanned prior to referring them for memory assessment in view of the known long waits to diagnosis. The waits for scan results vary between CCG localities and can be between 4-8wks. The following actions are recommended to help to achieve a leaner more streamlined pathway to reduce waits: Joint work to be undertaken between primary and secondary care to streamline the pathway, reducing the number of steps to diagnosis Develop the skill base of its nursing staff to promote greater diagnostic autonomy commensurate with their banding an additional efficiency that would improve waits in the service Put in place neuroimaging protocols to be consistently applied across the county, to prioritise imaging requirements in line with NICE Clinical guideline 42 (see slide 22). Neuroimaging should take place in the memory assessment service when this is required to reduce potential waste by primary care, through repeat or the need for different neuroimaging in the diagnostic process. 33

34 Waiting times from referral to first appointment EIDS Referral date = 01/04/16 31/03/17 The graphs confirm that there are long waits in the service and substantial variation in the time that people wait before their first appointment. Most patients received their first assessment appointment within 3-4mths, whilst some patients waited in excess of 6mths for their first appointment (top left graph). This is not in line with the current service specification standard of 28 days, but broadly confirms the account provided by staff of the current pathway in that following a pre-assessment within 6 weeks of referral, a first assessment appointment follows between 4-8 weeks later. We heard from staff that the preassessment appointment required a significant time investment in allaying patient concerns relating to the stigma associated with a diagnosis. Of those who are still waiting as of 31 st March (open referrals in the top right graph) most have been waiting up to 5 months, a small number have been waiting for almost a year. The service needs to understand who the patients are that are still waiting, particularly those beyond 12 weeks and the reasons why. The routine home based pre-assessments across a large geographical area could be impacting negatively on the service clinical capacity and flow through the system and this should be reviewed in line with the current capacity constraints. It is recommended that a needs based approach is considered in the level of home based pre-assessments currently undertaken to maximise service capacity. The routine use of a patient tracking list (PTL) should be implemented to ensure there is visibility of all waits and assure that patients are being seen in order, except for patient choice. The IST can further advise on how to introduce manage PTLs. 34 Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team

35 Waiting times from first appointment to diagnosis Our understanding from clinical staff is that the majority of patients presenting at GP practices with memory concerns are referred to WHCT memory assessment service (EIDS and CMHT). A significant proportion of accepted referrals (42%) are diagnosed at their first assessment appointment (graph on the right). These could be potentially missed opportunities for diagnosis in primary care. An equivalent proportion (around 42%) are diagnosed more than 8 weeks after their first appointment. This represents a long wait of more than 20 weeks from referral to diagnosis when the 3-4month wait to first assessment is included. EIDS Referral date = 01/04/16 31/03/17 Referral status = discharged and first appointment date is not null The service is clearly not meeting the contracted response time of 18 weeks from referral to diagnosis and treatment. The long waits to diagnosis is well known to both the provider and commissioner. Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team EIDS staff reported that patients were aware of the long waits but were happy to wait as they recognised the value and quality of service they received and had a perception that patients did not necessarily want to be rushed through the service. In interviews with the IST, carers and service said that they had noticed cognitive decline long before a dementia diagnosis was eventually formally established. A long wait represents a further delay to diagnosis and potential treatment and support. Contract monitoring arrangements need to be made more robust. It is unclear what level of oversight and accountability is applied to the dementia pathway by commissioner and provider senior management, given that the national 18 week RTT standard for consultant led services applies to MAS services. It is also unclear as to what plans are being put in place to increase the numbers of people diagnosed and starting treatment within 6 weeks in line with NHS shared planning guidance and whether this is deemed to be a priority. To meet this expectation, it is recommended that waiting time standards are specified for each part of the diagnostic pathway, including imaging supported by robust governance and routine senior level oversight. Demand and capacity modelling is required to understand the extent to which the memory assessment service capacity is a barrier to increasing diagnosis rates and confirm sustainable staffing levels required to meet current and future demands in the service, whilst maximising effective use of resources. Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team 35

36 Diagnosis recording Just over half (51%) of referrals accepted into the service are discharged without a recorded diagnosis (pie chart). This does not include data from CMHT. It is recommended that both the EIDS and CMHT confirmation rates are routinely considered together for an accurate view of confirmation rates in the WHCT. 43% of discharged patients in the EIDS are not clustered (bottom right table). Accurate clustering enables commissioners and the Trust to ascertain the level of need in both parts of the service. EIDS Diagnostic confirmation rate Discharged patients referred 01/04/16 31/03/17 The EIDS appears to lack robust processes for data accuracy and completeness. It was reported that it was routine practice in the service for patient outcomes to be for recorded when the patient is discharged. In effect there is a 9-12mth lag before a full set of data is available for each referral, and service outcomes tended to be reviewed annually. However, there are some staff who update the patient record contemporaneously. The Trust therefore indicated to the IST that the EIDS data presented in this report is likely to be incomplete. It is recommended that the memory assessment service puts a much greater focus on getting data right first time as close to real time as possible. It should put in place appropriate protocols and validation processes to ensure the ability to supply timely and robust data on an ongoing basis in line with good corporate governance and the NHS Improvement Standard Operating Framework (SOF). Diagnosis and clustering EIDS Discharged patients referred 01/04/16 31/03/17 Clustered at discharge No cluster at discharge The Trust uses some paper records alongside Care notes which is the main clinical recording system. This system does not allow for ICD10 coded entry. However, according to EIDS and CMHT staff, ICD10 codes and Read/EMIS codes were always clearly stated in the letters communicated to GPs, to confirm diagnosis. This is a critical step in achieving timely and accurately reconciled QOF registers and therefore it is recommended that this process is kept under constant review and audited to ensure to assure reliability. Diagnosis recorded 78 (89%) 10 (11%) No diagnosis recorded 24 (26%) 67 (74%) Cluster status total 102 (57%) 77 (43%) Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team 36

37 Diagnosis According to the current service specification, the EIDS care pathway has been developed to support people in the earlier stages of dementia or mild cognitive impairment. The IST was told by the EIDS staff that mild cognitive impairment (MCI) is not recognised or recorded by the service as confirmed by the breakdown of diagnoses from discharged patients (left graph). MCI was felt to be an unhelpful diagnosis for the individual. EIDS Referral date = 01/04/16 31/03/17 Discharge date after 01/04/16 or null Consequently this category of patients are not readily identifiable in primary care records and there does not appear to be a consistent clear pathway for follow up and ongoing review of this category of patients. It is known that MCI affects up to 20% of people over 65 and a third go on to develop dementia. In the current system, should their cognitive symptoms decline, a re-referral is required back into the service, triggered by their GP or in some cases instigated by the dementia advisor in routine 3mthly reviews, recommending to the GP that a referral is made. The IST spoke with a group of carers in the diagnostic visit and whilst all valued the quality of attention and support they received, some experienced multiple referrals and multiple long waits with their loved one before a dementia diagnosis was eventually confirmed. They said they would have valued the service being able to nail down the dementia diagnosis in a timely way but in some cases cognitive decline was attributed to the normal processes of ageing by some health professionals. Data: Worcestershire Health and Care Trust Analysis: Intensive Support Team 37