Second English National Memory Clinics Audit Report

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1 Second English National Memory Clinics Audit Report December 2015

2 Funded by: Department of Health Conducted by: Royal College of Psychiatrists Authors: Sophie Hodge & Emma Hailey Correspondence: Sophie Hodge Royal College of Psychiatrists Centre for Quality Improvement 21 Prescot Street London E1 8BB An interactive map and copies of this report can be found on the website: Publication number: CCQI Royal College of Psychiatrists

3 Contents Foreword 4 Recommendations 6 Executive summary 8 Interactive map and website address 9 Introduction 10 Definition of a memory clinic 10 Method 11 Questionnaire development 11 Participants 11 Data collection 11 Data cleaning and quality 11 Results 13 Response rate 13 Service type 13 Funding 13 Capacity 14 Waiting times 17 Timely diagnosis 19 Service provision 20 Involvement of people with dementia and carers in service development 22 Research 24 Membership of the Memory Services National Accreditation Programme 26 References Royal College of Psychiatrists 2

4 Royal College of Psychiatrists

5 Foreword It is a great pleasure to be asked to contribute to this important publication about the profile of memory services in the UK. Dementia is a national priority and memory clinics have a key part to play in the assessment, diagnosis and treatment of people suffering from symptoms which may be due to dementia. Previous work by the Royal College of Psychiatrists has expertly highlighted the current landscape of memory services in the UK and the Memory Services National Accreditation Programme has been instrumental in raising standards across the country. The inclusive nature of the process and transparent publication of findings is a template which similar audits could follow with benefit. We know there is variation in service provision across the country, in particular in waiting times, and MSNAP has been instrumental in bringing this issue to the fore and facilitating individual services to improve the care they provide for people, their families and carers. It is a privilege to be associated with the MSNAP process and I know the results contained in this report will benefit patients throughout the country. Alistair Burns National Clinical Director for Dementia NHS England 2015 Royal College of Psychiatrists 4

6 Royal College of Psychiatrists

7 Recommendations Capacity Between 2013 and 2014, the number of patients seen by memory clinics increased by 31% on average, although available capacity did not increase significantly. It is crucial that resources are allocated appropriately to memory clinics to ensure that all those who need it receive timely assessment, diagnosis and high quality follow-up care. Funding In both 2013 and 2014, budgets ranged from tens of thousands to millions of pounds. For around two-thirds of clinics that provided funding information in both 2013 and 2014, the budget stayed the same or increased between the years, and the remainder had a reduction in their funding. Consideration should be made as to why substantial variation occurs in funding for services. Waiting times The average waiting time from referral to assessment increased from 5.2 weeks in 2013 to 5.4 weeks in 2014, and waiting time from assessment to diagnosis increased from 8.4 to 8.6 weeks. Differences in average waiting times between services also increased, with the wait between receipt of referral and first assessment being as little as one week and as long as 32 weeks. Length of wait from referral to first assessment is too great in some areas and needs to be addressed, with additional resources where necessary to reduce longer waits to acceptable levels. Psychosocial interventions Cognitive Stimulation Therapy (CST) and life story work are available to people with dementia in around two-thirds of memory clinics. Education and support for carers is available to almost all clinics. These figures did not increase greatly between 2013 and CST is an intervention recommended by NICE and all memory clinics should aim to provide or gain access to this therapy Royal College of Psychiatrists 6

8 Royal College of Psychiatrists

9 Executive summary An audit was conducted of memory clinics in England between 15 September and 31 October out of 222 memory clinics in England responded, a response rate of 82%. Key findings Service model 36% clinics are stand-alone memory services Funding Each clinic spent on average 557,000 in 2014 Working hours Average operating hours are 38 per week Clinics offer on average 18 assessments per week Assessments On average, clinics assessed 576 people over 12 months Clinics saw on average 1579 patients in total (including Appointments assessment and follow-up) over 12 months Average waiting time from referral to assessment was 5.42 weeks Waiting times Average waiting time from assessment to diagnosis was 8.55 weeks Timely diagnosis 52% patients received an early diagnosis 95% clinics provide home based assessments 85% clinics have access to specialist post-diagnostic counselling 99% clinics are able to initiate anti-dementia medication Service provision 99% clinics are able to monitor anti-dementia medication 68% clinics have access to Cognitive Stimulation Therapy 98% clinics have access to education and support for carers 63% clinics have access to life story work Service user and People with dementia and carers are most likely to be carer in giving feedback on the service, and least likely involvement to be in helping to deliver staff training 85% clinics ask people with dementia if they would like to register their interest in participating in research Research 83% clinics recruited people with dementia to at least one MSNAP Membership research study in % clinics were members of the Memory Services National Accreditation Programme 2015 Royal College of Psychiatrists 8

10 Interactive map Our interactive online map can be found on our website, displaying: waiting times research involvement MSNAP membership Additional copies of the report may also be downloaded from the website Royal College of Psychiatrists

11 Introduction In 2011 the NHS Information Centre published their report Establishment of Memory Services - Results of a survey of Primary Care Trusts, final figures, 2011 which investigates memory clinics in England, following on from a recommendation in the English National Dementia Strategy in 2009 to commission these clinics. The audit collected data on spending, aspects of service provision, and accreditation by the Memory Services National Accreditation Programme (MSNAP). In 2012 David Cameron launched the Prime Minister s Challenge on Dementia, which laid out a number of key recommendations for dementia diagnosis and care in England, including the recommendation to Ensure that memory clinics are established in all parts of the country and drive up the proportion of memory services that are accredited [by MSNAP]. The Royal College of Psychiatrists was then commissioned to conduct a further survey of memory clinics in England in order to report on the progress of these services against the ambitions in the Prime Minister s Challenge on Dementia. This survey, conducted in 2013, found that many aspects of service, such as waiting times and funding, varied greatly across the country, and that patient numbers had increased fourfold between 2011 and In 2014 the Royal College of Psychiatrists was commissioned to repeat this survey to monitor progress against the 2013 audit, and against the Prime Minister s Challenge. The results of this survey are included in this report, and comparison is drawn with the results from the previous audits. Definition of a memory clinic Memory clinics and memory services were referred to interchangeably throughout the process in order to be as inclusive as possible. This was done deliberately because there is currently no agreement about what such services should be called and many would identify themselves as one but not the other. The following definition was used for the purpose of this survey: A memory clinic/service is defined as a multidisciplinary team (either NHS or private) that assesses and diagnoses dementia, and may provide psychosocial interventions for dementia. This can include Community Mental Health Teams for Older People Royal College of Psychiatrists 10

12 Method Questionnaire The same questionnaire was used as in the 2013 audit, with extra guidance added for clarification to some questions that were commonly misunderstood previously. In addition, in the 2013 audit many questions were forced response which caused some confusion, so the majority of questions in the 2014 audit were optional to answer. This increased the number of non-respondents for each question but it was hoped this would mean only quality data were supplied. Participants As in the previous audit, memory clinics were contacted directly as there were a number of questions to be included in the questionnaire for which it was felt that memory clinics themselves would have access to the most accurate data. A number of Trust audit leads were also included in the invitation in order to make them aware of the survey. The same database of contacts identified for the 2013 audit was used for the 2014 audit. During 2014, a mapping project was undertaken by the Royal College of Psychiatrists Centre for Quality Improvement to identify all memory clinics in the UK and this revealed a small number of additional services that had not been included in the last audit. This brought the total to an estimated 222 memory clinics in England. Data collection Data collection for the second national memory clinics audit began on 15 September 2014 and ended on 31 October 2014, via an online questionnaire. Data cleaning and quality After data collection any extreme outliers and null responses were identified and the responder was contacted to ask for clarification. Where no answer was received, the data were removed from the calculations. As part of data collection, responders were asked to state what source of information they mainly used in completing the questionnaire (shown in Table 1). In 2014, more services used Royal College of Psychiatrists

13 existing data or examining records to supply the information required than in 2013, and fewer services estimated their response based on a clinical impression. It is possible that the 2013 audit prompted teams to begin collecting these data routinely, and this has remained in practice. Table 1: Main source of information used when completing the questionnaire Data that service already compiles 99 (55.6%) 100 (60.6%) Examination of records for the purpose of this audit 16 (9.0%) 23 (13.9%) Clinical impression based on experience of working in the service 63 (35.4%) 42 (25.5%) 2015 Royal College of Psychiatrists 12

14 Results Response rate 182 out of an estimated 222 memory clinics in England responded: a response rate of 82%. Memory clinics from 60 NHS Trusts completed the survey. Service type Table 2: Types of memory clinic Stand-alone memory clinic 54 (34.4%) 51 (36.17%) Part of a wider service (such as a CMHT-OP) 103 (65.6%) 90 (63.83%) Non-response The proportion of memory services that are provided as stand-alone clinics remained similar between 2013 and A greater number of clinics chose not to answer this in the 2014 audit; perhaps due to uncertainty about the structure, or changes in services. Funding Table 3: Average memory clinic funding per year Average funding per year 622, ,492 Range 25,000-5,000,000 10,000-3,200,00 Median 445, ,000 Mode 800, ,000 Non-response Table 4: Comparison of funding in clinics that provided funding information in both 2013 and 2014 Average change in funding ,646 Median change in funding ,706 Maximum increase + 2,950,000 Maximum reduction - 3,948,269 Excluded cases Royal College of Psychiatrists

15 As the non-response rate was so high in both years, these data should be treated with caution. It appears that average funding reduced between 2013 and 2014 by 65,000 per service. Comparing only those clinics that provided data in both 2013 and 2014 (n=59), however, the average change in funding was an increase of 1,646. It is possible that clinics were more likely to provide funding information in 2014 if their budget had increased rather than if it had decreased. 64% of these clinics saw their funding increase or remain the same between 2013 and 2014, whilst the remaining 36% had their budget reduced. The service with the largest increase had almost 3million additional funds in 2014 compared to 2013, whilst the service that faced the largest reduction lost almost 4million from its budget. Whilst it is impossible to comment on the circumstances of individual clinics that vary in terms of the population served and models of working, it appears that some services have had substantial increases in funding whilst others have had significant cuts. In order to provide high quality services that provide a universal standard of care, funding needs to be examined and made more equitable. Capacity In this section the survey asked about the number of hours the clinic operates, the maximum number of new patients that could be seen, and the actual number seen in each clinic. Table 5: Memory clinic operating hours per week Average Range Median Mode Non-response 2 16 As with 2013, the average, median and mode working hours reflect a standard 9-5, Monday- Friday working week. 9.0% of clinics open for more than 40 hours per week, which may reflect working as part of a larger team (for example a community mental health team) that operates extended hours or weekend opening. In addition, some memory clinics may offer extended hours in order to increase the number of assessments they are able to undertake. Table 6: Maximum number of new patients that can be assessed each week Average Range Median Mode Non-response Royal College of Psychiatrists 14

16 Percentage of memory clinics Table 7: Total number of new patients that were assessed in the last 12 months Average Range 70 2, ,046 Median Mode Non-response 3 18 Table 8: Total number of patients who attended the clinic in the last 12 months (including new assessments) Average 1, ,579.2 Range 81 7, ,364 Median Mode Non-response 9 22 Figure 1: Total number of patients seen per year, including assessments and follow-up appointments 35% 30% 25% 20% 15% 10% 5% 0% Number of patients seen per year On average, memory clinics each assessed 576 new patients and saw 1579 patients in total in the 12 months prior to the audit. As seen in Figure 1, the most common number of patients seen per clinic, per year was between 500 and 999 (32.2%). A small minority saw more than 4000 patients per year (4.6%). Examining Figure 2, it can be seen that there was a dramatic increase in patient numbers between 2011 and 2013 and the average number of patients attending each clinic or Royal College of Psychiatrists

17 organisation continued to rise, albeit at a slower rate, between 2013 and Clinics in 2014 saw on average 30.9% more patients than in 2013 and conducted 6.0% more assessments. Figure 2: Average number of patients accessing memory clinics per organisation (Trust) and memory clinic between 2008 and /9 2009/ /11 Patients per clinic Patients per organisation However, capacity in memory services did not increase significantly between 2013 and 2014, with clinics able to assess on average 18.3 new patients per week in 2014, as compared with 18.0 in This equates to memory clinics offering an average of only 16 additional assessments each per year. As with 2013, the figures varied greatly between clinics. Some of the variance may be explained by differences in population size but there is also likely to be variance in resources or referral patterns. One clinic saw over 14,000 patients in total, while another saw only 13, which suggests differences perhaps in service configuration and specificity Royal College of Psychiatrists 16

18 Number of memory clinics Waiting times Table 9: Waiting time between memory clinic receipt of referral, and assessment Average 5.20 weeks 5.42 weeks Range 1 25 weeks 1 32 weeks Median 4 weeks 5 weeks Mode 4 weeks 4 weeks Non-response 1 0 The average waiting time for an assessment increased from 5.2 weeks in 2013 to 5.4 weeks in Whilst this may not be a significant increase, the longest waiting time recorded in 2014 was 32 weeks as compared with 25 weeks in In some areas, patients waited only one week for an appointment and inequality remains across all areas. Visit our interactive map at to find out what the waiting time was in your area. The standard set by the Memory Services National Accreditation Programme states that people should wait no more than 6 weeks between referral and their first assessment. 73.6% services are currently within this target, a slight reduction on 2013 (75.7%). Figure 3 demonstrates that the vast majority of services have waiting times less than 12 weeks. Figure 3: Number of weeks wait between memory clinic receipt of referral and first assessment Number of weeks Royal College of Psychiatrists

19 Number of memory clinics Table 10: Waiting time between assessment and receipt of diagnosis Average 8.36 weeks 8.55 weeks Range 0 21 weeks 0 40 weeks Median 8 weeks 8 weeks Mode 8 weeks 10 weeks Non-response 1 1 The average waiting time between the first appointment and receiving a diagnosis also increased slightly between 2013 and Again, this varies greatly from zero weeks (delivering a one-stop shop where the diagnosis is given the same day as the assessment) to 40 weeks wait, with the average at 8.6 weeks. The wait between assessment and diagnosis can depend on factors such as waiting for test results from other departments or for a diagnostic appointment with a specific person (often a consultant psychiatrist) who may have limited sessional time in the clinic. As with waiting time for assessment, Figure 4 reveals that most memory clinics are able to deliver diagnosis within 12 weeks of assessment. Figure 4: Number of weeks wait between the person s first assessment and receiving a diagnosis Number of weeks As seen in Table 11, the average total wait between referral and diagnosis is 13.9 weeks, a slight increase from weeks in 2013, with the wait for diagnosis accounting for approximately two-thirds of that time. However, the total time varies from 2 to 56 weeks. Figure 5 demonstrates the spread of waiting times and shows that the vast majority of clinics fall between 2-24 weeks wait from referral to diagnosis. Furthermore, 80.2% clinics deliver a diagnosis within 18 weeks of referral Royal College of Psychiatrists 18

20 Number of memory clinics Table 11: Number of weeks wait between memory clinic receipt of referral and the person receiving their diagnosis Average weeks weeks Range 0 36 weeks 2 56 weeks Median 13 weeks 13 weeks Mode 8 weeks 12 weeks Figure 5: Number of weeks wait between memory clinic receipt of referral and the person receiving their diagnosis Number of weeks Timely diagnosis Table 12: Percentage of people diagnosed in the last 12 months who were diagnosed in the early stages of dementia (according to thresholds defined by the assessment tool used) Average 49.3% 51.7% Range 4 100% 1-100% Median 50% 50% Mode 80% 60% Non-response The percentage of people diagnosed whilst in the early stages of dementia increased modestly from 49% in 2013 to 52% in It is encouraging that several clinics gave very high estimates as to their rate of timely diagnosis, however some clinics are still seeing the majority of people presenting with moderate to severe dementia and there is room for improvement in this area which could be aided by education of referrers and the public Royal College of Psychiatrists

21 Service provision Figure 6: Percentage of memory clinics that provide various features of service provision 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Home based assessment Access to specialist postdiagnostic counselling Initiation of anti-dementia medication Review of antidementia medication Access to cognitive stimulation therapy Access to education and support for carers Access to Life Story work Figure 6 demonstrates that clinics overall were able to offer more aspects of service in 2014 than in Almost all clinics prescribed and monitored anti-dementia medication in 2013 so these figures did not rise notably in However, access to specialist post-diagnostic counselling was available in 85% clinics in 2014 as compared with only 74% clinics in Access to Cognitive Stimulation Therapy (CST) and life story work did not change significantly between 2013 and 2014; these activities remained available in around twothirds of clinics. Given that CST is a NICE-recommended psychosocial therapy, it would be expected that this intervention would be available in a greater proportion of clinics. Table 13: Number of people who used specialist post-diagnostic counselling, per clinic, in the last 12 months Average Range Median Mode 20 0 Non-response Royal College of Psychiatrists 20

22 It appears that the number of people using specialist post-diagnostic counselling reduced by around 20% between 2013 and 2014, however interpretation of these data should be done with caution as there is disagreement over what constitutes specialist post-diagnostic counselling. This intervention should be delivered by a qualified counsellor for people with rarer diagnoses or particularly adverse reactions to the diagnosis. However many clinics interpreted this as routine advice and support delivered by the memory clinic team following diagnosis, so the numbers may be somewhat distorted. Table 14: Number of people who used Cognitive Stimulation Therapy, per clinic, in the last 12 months Average Range Median Mode 0 0 Non-response Although the proportion of clinics offering CST courses has not increased, it appears that the number of people attending them has. Within the clinics offering this intervention, in 2014 an average of 64 people used CST, compared with 54 people in 2013, an increase of 19%. However there was also a high rate of non-responders to this question, suggesting that not all clinics keep figures of people that attended the course. If delivered by a third party, it may be difficult for the clinic to access these data. Table 15: Number of people who used education and support for carers, per clinic, in the last 12 months Average Range Median Mode 0 50 Non-response 8 57 The number of carers accessing education and support rose by 8% between 2013 and 2014, which is in line with the fact that the number of clinics offering this service rose from 94% in 2013 to 98% in It is essential that carers receive adequate support both to maintain their own health and support their caring abilities Royal College of Psychiatrists

23 Involvement of people with dementia and carers in service development As seen in Figures 7-11, the proportion of clinics in 2014 that do not involve people with dementia and carers in service development has decreased compared to However, it also appears that more clinics in 2014 opted to involve either people with dementia or carers only, but not both. The proportion of clinics that both parties in service development decreased between 2013 and 2014 across all aspects surveyed. As with 2013, in 2014 the area in which both people with dementia and carers were most likely to be was giving feedback on service quality, and the aspect they were least likely to be in was helping to deliver staff training. It is encouraging to see that a greater proportion of people with dementia or carers were in peer support work in memory clinics in 2014 (Figure 11). 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Both people with dementia and carers Appointment of new staff People with dementia only Carers only Neither people with dementia nor carers Figure 7: Percentage of memory clinics which involve people with dementia and carers in the appointment of new staff 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Both people with dementia and carers Feedback on service quality People with dementia only Carers only Neither people with dementia nor carers Figure 8: Percentage of memory clinics which involve people with dementia and carers in delivering feedback on service quality 2015 Royal College of Psychiatrists 22

24 Figure 9: Percentage of memory clinics which involve people with dementia and carers in planning changes to service organisation and delivery 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Both people with dementia and carers Planning changes to service organisation and delivery People with dementia only Carers only Neither people with dementia nor carers Figure 10: Percentage of memory clinics which involve people with dementia and carers in staff training 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Both people with dementia and carers Staff training People with dementia only Carers only Neither people with dementia nor carers Figure 11: Percentage of memory clinics which involve people with dementia and carers in helping support other people with dementia and carers 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Helping support other people with dementia or carers Both People with people with dementia dementia only and carers Carers only Neither people with dementia nor carers Royal College of Psychiatrists

25 Research Table 16: Number of memory clinics which ask people with dementia to register their interest in participating in research studies Asks people with dementia to register interest 130 (73.0%) 140 (85.4%) Does not ask people with dementia to register interest 48 (27.0%) 24 (14.6%) The data in table 14 demonstrate that a greater proportion of clinics in 2014 ask people with dementia to register their interest in taking part in dementia research than in 2013 (85% compared with 73% respectively). Involvement in research was a key commitment in the Prime Minister s Challenge on Dementia and is also included in the Memory Services National Accreditation Programme standards, so it is encouraging to see that a greater proportion of clinics are in However, as seen from table 15, the proportion of clinics that actually recruited people to at least one study has decreased slightly. The average number of studies each clinic recruited to also decreased from 3.55 in 2013 to 2.98 in It is hoped that services such as Join Dementia Research run by the National Institute for Health Research will help memory clinics to effectively recruit people with dementia to relevant research studies, and that this will boost the number of people recruited through memory clinics in the future. Table 17: Number of research studies each memory clinic recruited patients to in the past 12 months Average Memory clinics that recruited people to at least one 118 (84.3%) 153 (82.5%) study Range Median 2 2 Mode 1 2 Non-response In Figure 12 the spread of recruitment to research can be seen; 66% of clinics recruited to between 1 and 4 studies while a handful recruited to more than Royal College of Psychiatrists 24

26 Number of memory clinics Figure 12: Number of different research studies that recruited patients through memory clinics in the last 12 months Number of research studies Royal College of Psychiatrists

27 Membership of the Memory Services National Accreditation Programme Details of membership of MSNAP were taken from the membership list on the MSNAP website and it was noted which of the responders were members of the programme, and their accreditation status. MSNAP is a quality improvement programme which reviews memory clinics against a set of evidence-based standards, and supports clinics to achieve accreditation. Table 18: Percentage of memory clinics that are members of the Memory Services National Accreditation Programme Members 60 (33.7%) 88 (47.2%) Non-members 118 (66.3%) 94 (52.8%) Breakdown of memory clinics by accreditation status Accredited as excellent 15 (8.4%) 35 (19.7%) Accredited 12 (6.7%) 19 (10.7%) In review stage (not yet accredited) 27 (15.2%) 20 (11.2%) Affiliate member (part of network but not reviewed) 6 (3.4%) 10 (5.6%) MSNAP membership increased from around a third of English memory clinics in 2013 to almost half in 2014, and there has also been an increase in accredited services between 2013 and Since membership of, and accreditation by, MSNAP, is a recommendation in the Prime Minister s Challenge on Dementia, it is good to see that both domains have increased. However there still remains over half of memory clinics that are not members of the programme and may benefit from joining Royal College of Psychiatrists 26

28 References Establishment of Memory Services, Final results of a Survey of PCTs (2011). NHS Information Centre Join Dementia Research Living well with dementia: A National Dementia Strategy (2009). Department of Health h_ pdf Memory Services National Accreditation Programme (MSNAP) Memory Services Register NICE Clinical Guideline CG42: Dementia: Supporting people with dementia and their carers in health and social care (2011). National Institute for Health and Care Excellence Prime Minister s Challenge on Dementia (2012). Department of Health h_ pdf Royal College of Psychiatrists

29 2015 Royal College of Psychiatrists 28

30 Royal College of Psychiatrists Centre for Quality Improvement 21 Prescot Street London E1 8BB Royal College of Psychiatrists 2015 Royal College of Psychiatrists

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