wales national audit n… · memory clinic and memory assessment services august 2014 . 2 contents...
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Wales National Audit Memory Clinic and Memory Assessment Services August 2014
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Contents
Recommendations 3 Executive Summary 5 Introduction Definition of a memory clinic 7 Method Questionnaire development 8 Identifying eligible services 8 Data collection, cleaning and quality 8 Results Response rate 10 Service type 10 Capacity 11 Waiting times 14 Timely diagnosis 15 Service provision 16 Involvement of people with dementia and carers in service development 17 Research 18 Funding 19 Young onset dementia 20 Acknowledgments 22 References 23 Appendix : Summary of workshop discussions 24
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Recommendations The following recommendations are based upon the audit results and subsequent discussion at a one-
day national workshop that was attended by 63 professionals representing memory clinics across
Wales (see Appendix).
Timely diagnosis of dementia requires sufficient resources to meet growing demand. Few existing
memory clinics have the capacity to cope with the numbers of new patients needing assessment and diagnosis, especially if more people are to be diagnosed at an early stage of the illness and the present diagnosis rate in Wales (38.8%) is to improve rapidly, to at least match that of other parts of the UK. Plans need to be made to deal with this increasing workload and additional resources may be needed. Health Boards should consider whether staff are being used most efficiently in other related services, whilst not diverting valuable resources away from effective post-diagnostic support and therapies.
Waiting times to be seen in memory clinics need to be kept under regular review, with a national performance target of consistently meeting the Memory Services National Accreditation minimum standard of 6 weeks. Arranging appropriate investigations at the time of referral should be encouraged, to shorten the time between referral and telling the diagnosis to patients.
Relationships with GPs and other referers should be developed, to encourage them to refer
patients on at the earliest opportunity (whilst at the same time ensuring high quality, appropriate referrals) and to promote high quality post-diagnostic care. Community-based clinics will be less stigmatising and more acceptable to some patients. GPs with an interest in dementia and appropriately qualified hospital staff should be encouraged to become more confident and competent to diagnose typical dementia and to manage it appropriately, so avoiding need for referral of all patients to memory clinics.
Appropriate follow up and support after dementia diagnosis is essential, or timely diagnosis serves little purpose. A key contact who is “multi-skilled and multi-roled” and who stays with the patient and family throughout the course of the illness is desirable. Consideration needs to be given to whether memory assessment services take on this responsibility, or whether they act as a source of expert advice and signposting to appropriate services.
Easy access to NICE recommended interventions, including anti-dementia drugs and non-drug
interventions such as cognitive stimulation therapy, should be readily available to all who might benefit.
Opportunity to take part in research should be encouraged and all memory services should more
actively engage with research centres and encourage patient and carer involvement. A regular all-Wales newsletter detailing research opportunities should be considered.
Young onset dementia services have developed in very different ways in different localities and
there is a need to consider greater equity of access to appropriate support services across Wales, and across all age groups.
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Demonstrating service quality and improvement relies on availability of accurate data. Routine
collection of a small core dataset that is common to all memory services (e.g. date referral
received; date patient first seen; whether dementia diagnosed and, if so, its severity and staging)
would help to monitor and promote service development without need for any significant extra
resources. Standardised measures for ‘staging’ of dementia – mild, moderate, severe – need to be
agreed and used routinely. A small number of Read Codes should be used routinely when memory
clinics communicate dementia diagnoses to GPs to encourage accurate registration.
National audits of memory clinic services should be conducted annually or at least bi-annually and
this may require administrative staff time to undertake the necessary data collection. Future audits
should ensure tight definitions of interventions, aim to capture more data about the patient
journey after diagnosis and better capture information about staffing of memory clinics and issues
of rurality.
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Executive summary An audit was conducted of memory clinics in Wales in March - May 2014, using a similar audit tool to
that used for the national audit in England in 2013. All 28 NHS memory clinics in Wales responded, a
response rate of 100%. Subsequently, the results were discussed at a multi-professional workshop and
recommendations made.
Key findings
86% memory clinics are provided as part of a wider service such as a Community Mental Health
Team for Older People (CMHT-OP), as opposed to a stand-alone clinic.
All memory clinics operated 37 to 40 hours per week, Monday to Friday, with some also able to
provide a pathway to more intensive support services that can respond out-of-hours.
In the last 12 months, memory clinics each assessed an average of 299 new patients (6.5 per
week) and saw an average of 697 patients in total, though some services estimated numbers as
data are not recorded routinely.
On average, people wait 5.2 weeks from the point of referral to receiving their memory
assessment, and an additional 9.6 weeks from the point of having the assessment to receiving
the diagnosis.
Under half (42%) people diagnosed with dementia over the last 12 months were in the early
stages of the condition, though estimates ranged widely between clinics (from 3% to 86%).
All clinics provide home-based assessments and access to education & support for carers and most
(93%) said they have access to specialist post-diagnostic counselling. All can initiate anti-
dementia medication and also review medication, but only a minority (37%) provide access to
cognitive stimulation therapy – an evidence-based intervention recommended by NICE.
People with dementia and/or carers are involved most often in giving feedback on service
quality (68% of clinics) and helping to support other people with dementia and carers (62%).
However, fewer than half of services involve them in the appointment of new staff (21%),
planning changes to service organisation (33%) and staff training (21%).
Over half of memory clinics had recruited patients into at least one research project within the
past 12 months (57%) and/or said that they asked people to register their interest in taking part
in research (54%).
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On average, staffing of memory clinics cost £153,906 each per year, but this figure varies
widely. The average staff cost across Wales per new patient seen is estimated to be £559.
Stand-alone young onset dementia (YOD) services have been developed in five of the seven
Health Boards. The criterion for acceptance of patients varies and there is wide variation in the
proportion of people estimated to have YOD living in each Health Board who are currently
known to services. At least £901,000 is being dedicated to YOD staff costs across Wales each
year, with one Health Board accounting for half the total spend, despite not being involved with
initial assessment and diagnosis. When adjusted to reflect the estimated numbers with YOD,
the average funding per YOD patient per year in Wales is about £1000, or over ten times that
spent on people with dementia of any age.
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Introduction
Dementia care improvement is core business for all Health Board’s, Local Authorities and partner
agencies and it is now recognised as a first order priority across physical and mental health care and
social services. Most Health Boards now operate executive level Dementia Boards/Groups to help
coordinate wide ranging improvement strategies across all clinical specialities and settings, with an
integration of national clinical audit and 1000Lives improvement methods for reliable implementation
of evidence based interventions and processes for cognitive impairment.
The National Dementia Vision for Wales in 2011 highlighted the need to prioritise improvement in
early diagnosis of dementia and timely interventions, together with improving access to better
information and support for people with the illness and their carers, and improved training for those
delivering care, including research. The 1000Lives programme for improving dementia care identified
Memory Assessment Services to be the first point of contact, with the aim of reducing time between
onset of symptoms of dementia and the diagnosis being communicated. However, the Alzheimer’s
Society ‘Mapping the Dementia Gap 2013’ report based on GP QOF data found that dementia diagnosis
rates in Wales were just 38.8%, compared with 48% in England and 63.2% in N. Ireland.
In November 2013, the Royal College of Psychiatrists published the results of the National Audit of
Memory Clinics in England, funded by the Department of Health. The present report aims to provide a
benchmark for Memory Clinics in Wales in April 2014 and allows individual services to compare their
activity with others across Wales and England and guide their future development and resource use.
Definition of a memory clinic
As with the English audit, ‘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, nor on the preferred
service model, core functions or essential components. In Wales, ‘memory clinic’ is generally favoured,
as all services provide essential post diagnostic interventions in addition to baseline assessment and
diagnosis.
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.”
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Method
Questionnaire development
The questionnaire used the same questions and phrasing as that in the Memory Clinic Audit in England
in 2013, thus allowing for direct comparisons. These questions were in turn based on the same
domains that were used in the previous 2011 NHS Information Centre Audit in England. There were
also some additional questions about issues of relevance in Wales, including the availability of Welsh
language assessment and the provision of stand-alone services for younger onset dementia. The
questionnaire length was kept to a minimum to avoid overburdening services.
Identifying eligible services
Memory clinics were difficult to locate as there was, until now, no national list, or a recognised
moniker for such services (memory clinic; memory service; or cognitive disorders clinic; are
some such titles). Consequently, services were contacted through the following means:
1. In September 2013, all members of the Wales Old Age Section of the Royal College of
Psychiatrists were contacted by email and asked to arrange for the questionnaires to be
completed locally.
2. In March 2013, contacts in each Health Board identified by the Wales Centre for Mental Health
Services Development at the 1000 Lives Improvement Service of Public Health Wales were
emailed with information and a copy of the questionnaire, and asked to arrange for the most
appropriate staff to complete it for each memory clinic or team.
3. A brief presentation was made on 18th March 2014 at the Dementia Care Improvement
National Collaborative Meeting attended by representatives from all Health Boards.
All Health Boards responded and, in total it is reported that there are 28 memory clinics in Wales,
covering the whole of the country.
Data collection, cleaning and quality
Data collection for the audit was conducted in March – April 2014. Health Boards that had not replied
by the deadline of April 17th were re-contacted and asked to do so by April 30th.
After data collection, any extreme outliers and null responses were identified and the responder
contacted to ask for clarification. Where no answer was received, the data were removed from the
calculations. Provisional results were then presented at a national workshop attended by 63 memory
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clinic staff on July 9th and delegates were given opportunity to correct any data that they considered
was inaccurate or misrepresented their service. Some of the clinics emphasised that some data were
best estimates as exact figures were not available. The workshop was facilitated to co-produce
recommendations on improving timely diagnosis and the future development of memory clinics for
inclusion in this report.
As part of data collection, all responders were asked to state what source of information they mainly
used in completing the questionnaire. Most stated that they derived data from examination of records
for the purpose of this audit, or provided data based on best estimates and clinical impression based
on experience of working in the service. About half the respondents also used data that the service
already compiled. These figures are comparable to the main source of information that had been used
when completing the questionnaires in England.
Data are presented by Health Board, as well as for Wales as a whole, together with the comparable
data from England. ONS mid year population estimates for 2013 for Welsh Health Boards for people
aged 65+ years and estimated numbers of people with dementia (diagnosed/on QoF dementia register
and undiagnosed) are shown below. These data are used subsequently to produce ‘rates’ of activity to
aid comparison between Health Boards.
Population* of Wales, all persons aged 65 and over, Wales Health Boards, 2013
65-69 70-74 75-79 80-84 85-89 90+ Total
Abertawe Bro Morgannwg University Health Board 30800 23300 18900 13800 8100 4500 99,400 Aneurin Bevan University Health Board 34300 25800 20400 14300 8500 4700 108,000 Betsi Cadwaladr University Health Board 47000 34700 27400 20100 12300 7000 148,500 Cardiff & Vale University Health Board 22000 16300 13700 10500 6500 3700 72,700 Cwm Taf University Health Board 17300 12600 10100 6800 4100 2200 53,100 Hywel Dda University Health Board 27300 20100 15900 11500 7200 4000 86,000 Powys Teaching Health Board 10300 7700 6000 4400 2700 1600 32,700
TOTAL
600,400
*Produced by Public Health Wales Observatory, rounded to the nearest hundred.
Numbers of people with dementia, Wales Health Boards, 2013
No. on QoF dementia register (no. with a
diagnosis) 2013
Estimated no. with dementia (diagnosed & undiagnosed) 2013
% people with dementia with a diagnosis in 2013
Abertawe Bro Morgannwg University Health Board 3041 7244 42.0 Aneurin Bevan University Health Board 3212 7701 41.7 Betsi Cadwaladr University Health Board 4336 12691 34.2 Cardiff & Vale University Health Board 2485 5445 45.6 Cwm Taf University Health Board 1440 3715 38.8 Hywel Dda University Health Board 2170 6267 34.6 Powys Teaching Health Board 977 2467 39.6 All Wales 17661 45529 38.8
From Mapping the Dementia Gap 2013, Alzheimer’s Society 2013.
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Results
Response rate
28 memory clinics/memory services from all 7 Health Boards in Wales completed the survey: a
response rate of 100%. The locations of memory clinics in each Health Board were as follows:
Abertawe Bro Morgannwg (Swansea 1; Swansea 2; Swansea 3; Swansea 4; Neath; Port Talbot; Bridgend)
Aneurin Bevan (Caerphilly; B Gwent; Newport; Monmouth; Torfaen)
Betsi Cadwaladr (Gwynedd & Anglesey; Wrexham; Conway & Denbighshire)
Cardiff & Vale (Cardiff Memory Team)
Cwm Taf (Cynon Valley; Merthyr Tydfil; Rhondda; Taf Ely)
Hywel Dda (Llanelli; Dinefwr; Carmarthenshire; Ceredigion)
Powys (Ystradgynlais; Montgomeryshire; Brecon & Radnorshire)
Powys services are currently provided by three different Health Boards, who operate different service
models in each of the three Shires. The data for Powys residents has been disaggregated from each
Health Board’s audit return and is shown in the tables for the ‘County of Powys’, but is subject to error
and wide variation given the different data recording systems and methods of operation across the
County.
Service type Table 2: Types of memory clinic
AB UHB
ABM UHB
BC UHB
C&V UHB
CT UHB
HD UHB
Powys Wales England
Stand-alone memory clinic
3 1 4 (14.3%)
54 (34.4%)
Part of a wider service (such as a
CMHT-OP)
5 7 4 5 3 24 (85.7%)
103 (65.6%)
Most clinics (85.7%) are part of a wider Mental Health team/ service for Older People, except for long-
established stand-alone memory clinics in two Health Boards (14.3%). In England, just over a third of
the services that responded were stand-alone memory clinics, though many more were provided as
part of a wider service.
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Nearly all memory clinic services are classified as Local Primary Mental Health Services (under Part 1 of
the 2010 Mental Health (Wales) Measure), but there are some exceptions e.g. patients in North Powys
are classified under Part 2, with receipt of Care of Treatment Plans.
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 3: Memory clinic operating hours per week AB UHB
(n=5) ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys UHB (n=3)
Wales England
Average (hr/week)
38.0 37.8 38.3 40 40 38.0 32.1 37.7 37.6
Range (hr/week)
37.5-40 37.5-40 37.5-40 - 40-40 37.5-40 18.75-40
18.75 – 40
4 – 77
The working hours reflect a standard working week, with the memory clinic services operating
between 7-8 hours a day Monday-Friday. Several Health Boards commented that memory clinics
provide a pathway to more intensive support services that can respond out-of-hours if necessary.
Table 4: Maximum number of new patients that can be assessed each week
AB UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys UHB (n=3)
Wales England
Average maximum no. per clinic per week
13.6 6.4 18 30 6.2 6.4 9.5 10.1 (median 8)
18 (median 15)
Range 6 – 18 4-7 14 - 24 30 4 – 9 2 - 12 7-12 2-30 2-102 Non-response 1 1 Maximum no. new patients able to be seen in HB per year
3128
2061
2484
1380
1141
1472
1311
12977
Ratio of maximum no. able to be seen to estimated no. of new dementia cases per year (in brackets)
2.51 (1245)
1.34 (1540)
0.98 (2538)
1.27 (1089)
1.54 (743)
1.17 (1253)
2.66 (493)
1.43 (9106)
-
Maximum no. able to be seen per 10000 population aged 65+
290 207 167 190 215 171 401 217
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On average, each clinic was able to assess, at a maximum, 10.1 new patients each week, but there was
a very wide range, from 2 to 30. Some of the variance may be explained by the different population
sizes served by each clinic – for example Powys is estimated to have less than one fifth of the numbers
with dementia to be found in Betsi Cadwaladr.
Memory clinics do not only see new patients with dementia – common differential diagnoses are mild
cognitive impairment (MCI) and mood disorders – and so services need capacity to cope with at least
twice the numbers indicated by local dementia incidence figures.
When numbers of new patients able to be seen in each Health Board each year are compared to the
estimated number of new dementia cases each year (based on Dementia UK, 2007 and Matthews &
Brayne, 2005), only two Health Boards currently have a ratio >2. This implies that very few clinics have
sufficient capacity to cope with the numbers of new patients needing assessment and diagnosis. The
Alzheimer’s Society in Wales is campaigning for a 66% dementia diagnosis rate across all areas with a
commitment to reach 75% by 2017. This would require significant additional investment in memory
clinic services.
Table 5: Total number of new patients that were assessed in the last 12 months
AB UHB (n=5)
ABM UHB* (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys HB* (n=3)
Wales England
Average per service
371 244 505 1349 105 159 133 299 median 211
544 median 445
Range 151 – 621
75-350 409-686 1349 89-131 67-211 76-190 67-1320 70 – 2100
Non-response 0 2 0 0 0 0 1 3
Total per UHB 1854
1283(+)
1515
1349
420
793
266(+)
7480
-
Total as % of estimated number with dementia (in brackets)
25.6 (7244)
16.7+ (7701)
11.9 (12691)
24.8 (5445)
11.3 (3715)
12.7 (6267)
10.8+ (2467)
16.4 (45529)
-
No. of new cases assessed per 10000 population aged 65+
172 129+ 102 186 79 92 81+ 125
* As some clinics were unable to identify the number of new patients seen in the past 12 months, the
figures for ABM and Powys are underestimates.
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Table 6: Total number of patients who attended the clinic in the last 12 months (including new assessments)
AB UHB (n=5)
ABM UHB* (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys HB* (n=3)
Wales England
Average per service
952 439 1445 2300 155 277 661 697 median 500
1206 median 887
Range 489 – 1286
318-500 1220-1850
2300 131-192
147-450
500-823 131-1850
81-7802
Non-response 0 4 0 0 0 0 1 5
Total per UHB
4759
1318+
4336
2300
622
1384
1323+
16042
Total as % of estimated number with dementia (in brackets)
65.7% (7244)
17.1%+ (7701)
34.2% (12691)
42.8% (5445)
16.7% (3715)
22.1% (6267)
53.6%+ (2467)
35.2% (45529)
No. of new cases assessed per 10000 population aged 65+
441 133+ 292 316 117 161 405+ 267
* As some clinics were unable to identify the total number of patients attending in the past 12 months,
the figures for ABM and Powys are underestimates.
On average, memory clinics each assessed 299 new patients and had a total of 697 patients attending
over the last year. However, a few clinics were not able to provide exact figures and so their numbers
are estimates. Again, it can be seen from the ranges that the figures vary hugely between clinics and
between Health Boards, even when the different population sizes served by each clinic/Health Board
are taken into consideration.
Timely dementia diagnosis is only of value if it is followed by on-going support to patients and carers,
but it is not yet agreed whether this should be the continuing responsibility of memory clinics , or of a
named keyworker, or of primary care staff (with expert advice available as needed from memory clinic
staff). Currently there seems to be a very wide range of practice, with the ratio of follow up patients to
new patients ranging from about 4:1 to <1:1.
Different models of on-going support and care need to be examined. For example, in ABM there are
Dementia Coordinators (Band 4) who act as a key contact with the patient/family and stay with them
throughout the course of the illness. Similarly C&V are exploring the potential role of named Dementia
Navigators (Band 6) who will act as first point of contact to patients/families after diagnosis,
signposting them to the most appropriate service or source of support as new issues arise. An
alternative model is the Memory Service ‘Duty Desk’ that operates in AB.
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Waiting times Table 7. What is the average weeks’ wait…?
AB UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys UHB (n=3)
Wales England
… Between receipt of referral & assessment starting
3.2 (range 2.5-4)
4.1 (range 1-9)
10.7 (range 7.5-16)
10 (+)
3.5 (range 2-8)
6.7 (range 2-12)
3.7 (range 3-4)
Mean 5.2 (median 4; range 1 -16)
Mean 5.2 (median 4; range 1-25)
… Between first assessment & receiving a diagnosis
7.0 (range 5-10)
7.0 (range 6-12)
13.3 (range 5-24)
6 8.7 (range 4-11)
17 (range 10-39)
6.3 (range 6-7)
Mean 9.6 (median 8; range 4-39)
Mean 8.4 (median 8; range 0-21)
No response 1 1
The primary purpose of memory clinics is to promote the timely diagnosis of dementia. The 1000 Lives
Dementia Programme ‘Intelligent’ Target One focuses on reducing the time between onset of
symptoms and diagnosis being communicated and this depends on early recognition, timely referral
and prompt assessment and investigation. The Alzheimer’s Society in Wales is campaigning for a
maximum waiting time of 12 weeks from people seeing their GP to diagnosis.
Despite the increasing volume of patients being referred, the average time between memory services
receiving a referral and starting assessment is 5.2 weeks, with the maximum waiting time being 16
weeks. However, nearly one third of clinics in Wales are still currently failing to meet the standard set
by the Memory Services National Accreditation Programme that states that people should wait no
more than 4-6 weeks between the receipt of referral and their first appointment.
Several clinics commented that the waiting time is very dependent on staff availability and a vacant
post results in an immediate lengthening of the waiting list. Giving follow up appointments to patients
after initial diagnosis also means that there are fewer clinic appointments available to assess new
patients and so their waiting time becomes longer.
The time between the first assessment and diagnosis was on average 9.6 weeks, though most clinics
estimated their responses based on their impression of working in the service. This period will often
include receiving a brain scan, blood tests and sometimes more detailed neuropsychological
assessment and then a wait for the diagnosis to be delivered, which is most often done by senior
medical staff in a second clinic appointment. Sometimes diagnosis cannot be made immediately and
reassessment after a few months is needed.
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For some patients the time between assessment and diagnosis can be reduced if blood tests and brain
scan are ordered at the time of referral and so available at the time of first visit, in which case it may be
possible for the diagnosis to be delivered on the same day, without any additional appointments or
tests.
Timely diagnosis Table 8: Percentage of people diagnosed with dementia in the last 12 months who were diagnosed in the early stages
AB UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys HB
(n=3)
Wales England
Average per service
14 61 56 75 23 27 75 41.7 median 55
49.3 median 50
Range 12.5 – 15
60-65 30-86 75 3-55 15-50 70-80 3-86 4-100
Non-response 2 2 0 0 1 1 1 7
Almost half of diagnoses were said to have been given to those in the early stages of dementia, which
is promising. However, no services routinely recorded staging of dementia at diagnosis and
interpretation of ‘early stages’ was likely to have varied a lot.
There is a continuing need to raise public awareness of dementia and to de-stigmatise the condition, so
that referral when symptoms first emerge becomes the norm, allowing people early access to
medications which may slow down the progress of the disease and the opportunity to plan for the
future whilst capacity is maintained.
There is also a need for general practitioners and general physicians and psychiatrists to become more
confident about case finding for dementia and more knowledgeable about the process of assessment
and skilled in communicating a dementia diagnosis to patients and families. This in turn will help to
improve the prescription and monitoring of anti-dementia drugs and inappropriate use of anti-
psychotic drugs.
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Service provision Table 8: Services provided
AB UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys HB (n=3)
Wales England
Home based assessment
YYY YY
YYYY YYY
YYY Y YYYY YYYYY YYY 100% 92%
Access to specialist diagnostic counselling
YYY YY
YYYY YYN
YYY Y YYYY YYYYN YYY 93% 73.6%
Initiation of anti-dementia drugs
YYY YY
YYYY YYY
YYY Y YYYY YYYYY YYY 100% 98%
Review of anti-dementia drugs
YYY YY
YYYY YYY
YYY Y YYYY YYYYY YYY 100% 97.8%
Access to cognitive stimulation therapy
YYY NN
YYNN NNN
YYN Y NNNN YYNN? NNN 37% 66.3%
Access to education & support for carers
YYY YY
YYYY YYY
YYY Y YYYY YYYYY YYY 100% 93.8%
Access to Life story work
YYY YY
YYNN NNN
YYN Y YYYY YYNNN NNN 57% 62.9%
Welsh language assessment available
YYY YYY
YYYYY YYY
YYY Y YYYY YYYYY YYY 100% -
Y=service available via local clinic; N=service not available via local clinic; ?=non-response All clinics are able to provide home assessment when needed, as well as initiation and review of anti-
dementia medication as recommended by NICE. All clinics also stated that they provided access to
education and support for carers and most (93%) stated that they have access to specialist post-
diagnostic counselling, although this question may have been misinterpreted as meaning provision of
general support and advice following a diagnosis. Certainly, informal family carers provide a large
proportion of care for people with dementia and it is therefore crucial to provide education for all
carers to enable them in their role, and support to ensure that carer burnout does not occur. However,
there is also a need to provide specialist post-diagnostic counselling by a trained counsellor, for people
who have rarer diagnoses, familial conditions, or a particularly adverse reaction to the diagnosis.
Availability of such specialist counselling is less common.
Only slightly more than one third of clinics have access to Cognitive Stimulation Therapy (37%), a NICE
recommended group psychological intervention for dementia, designed to improve or maintain
cognitive function. Just over half of clinics said they have access to Life Story Work (57%), although it is
not clear how formalised or extensive this is, as some clinics interpreted this as giving patients and
carers the Alzheimer’s Society ‘This is me’ leaflet available in the Information Packs given at time of
diagnosis. Welsh language assessment was available in all clinics, but usually by involving a Welsh-
speaking colleague from another service. Cognitive assessments in Welsh are now available.
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Involvement of people with dementia and carers in service development There is a requirement for service user/carer representation on all Local Mental Health Partnership
Boards, which operate at Health Board level. Beyond this, are people with dementia or their carers
involved in service development activities at service/clinic level?
Table 9. Involvement of people with dementia and carers in service development activities in each clinic (PWD only=P; Carer only=C; Both=B; Neither=N; Missing=?).
AB UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys HB (n=3)
Wales England
Appointment of new staff
NNN NN
NNNN NNN
BCN C NNNN BCNNN CNN Both 7% PWD only 0%
Carer only 14% Neither 79%
Both 21% PWD only 8% Carer only 8%
Neither 63%
Feedback on service quality
BBB BB
BBBB BBN
BBN B NNNN BBBCN CNN Both 61% PWD only 0% Carer only 7%
Neither 32%
Both 83% PWD only 10% Carer only 3%
Neither 3%
Planning changes to service organisation and delivery
BCC PN
NNNN NNN
SNN C NNNN CCBN? CNN Both 7% PWD only 4%
Carer only 22% Neither 63%
No response 4%
Both 50% PWD only 6%
Carer only 14% Neither 30%
Staff training CCC CN
NNNN NNN
CNN N NNNN BNNN? NNN Both 4% PWD only 0%
Carer only 18% Neither 75%
No response 4%
Both 20% PWD only 5% Carer only 7%
Neither 68%
Help support other service users /carers
BBC PN
CCCC NNN
BBC N NNNN BBBC N
BCN Both 29% PWD only 4%
Carer only 29% Neither 39%
Both 47% PWD only 6%
Carer only 20% Neither 27%
The area with most involvement from people with dementia and carers (68%) is feedback on service
quality, which is likely to be done by satisfaction survey. The area with least involvement is staff
appointments and training, whilst nearly two thirds involved people with dementia and/or carers in
helping support other people with dementia and carers.
Only one third of services said that they involve carers in planning changes to dementia care service
organisation and delivery beyond Local Mental Health Partnership Board level, and people with
dementia were said to be rarely involved. However, this does not take into consideration the statutory
requirement to consult with patients and carers when service reorganisation is being planned, as this is
usually done through patient and carer representative organisations.
18
Research
Improved training and research involvement is identified as one of four priority areas for improvement
in the National Dementia Vision for Wales and memory clinic involvement in research was included as
a key commitment in the Prime Minister’s Challenge on Dementia. It is expected that memory clinics
should actively promote the opportunity to become involved in a research project to all people with
dementia. In support of this, NeuroDem Cymru has developed a register to increase the possibilities for
research into dementia in Wales.
Table 10 Does the person/clinic ask people to register interest in research…? AB
UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys UHB (n=3)
Wales England
% clinics asking people to register interest in research
100%
62.5% 100% 0
0 20%
33%
54%
73%
Number of studies recruiting patients in last 12 months
0-3 0-2 3-4 10 0
0-2 0-2 0-10 0-44
15 (54%) memory clinics said that they asked people to register interest in research and 12 of these
had subsequently recruited patients within the last 12 months. Of the 13 clinics that did not ask for
people to register their willingness to be approached about research, only 5 had recruited any patients.
The clinic with the greatest research activity (in C&V) did not register potential interest of patients and
carers in research as they ask all suitable patients if they are willing to become involved in relevant
projects when they are recruiting volunteers.
19
Funding Staff costs of memory clinic services (excluding any costs of staff specific to young onset dementia)
were provided by each Health Board. These data should be treated with caution as some Health Boards
did not include costs of administrative/secretarial support costs and they exclude all ‘corporate’ and
overhead costs, such as estate costs etc. Estimated costs in Powys were provided by the three
responsible Health Boards and there is the possibility of some ‘double-counting’. There was also a
disagreement about estimated costs in Cwm Taf.
Table 11: Memory clinic funding per year (staff costs) AB UHB
(n=5) ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys (n=3)
Wales England
Estimated funding per UHB per year
£1,433,823
£494,452
£631,000
£467,000
£492,385
£603,000
£187,721
£4,309,381
Average funding per service per year
£286,765 £70,636 £210,333 £467,000 £123,096 £120,600 £62,574 £153,906 £622,621 (median £445,685)
Range
£180,000 - £387,344
£36,392 - £123,269
£117,000 - £268,000
£467,000 £97,161 - £153,408
£92,000 - £149,000
£35,000 - £104,721
£35,000 - £467,000
£25,000 - £5,000,000
Cost per patient in UHB with dementia (no. in brackets)
£197.93 (7244)
£64.21 (7701)
£49.72 (12691)
£85.77 (5445)
£132.54 (3715)
£96.22 (6267)
£76.09 (2467)
£94.65 (45529)
Cost per new patient seen
£721
£385
£417
£331
£1,172
£760
<£639
<£559
£1145
The total staff costs of memory clinic services in Wales is £4.3 million, with each service costing on average £153,906 per year, although this ranged from £35,000 (a single nurse in a rural area with a small population) to £467,000 (a multidisciplinary team in a mixed urban/rural area with a large population). The estimated average funding per service in England is four-times greater (£622,621). The cost per new patient seen varied over three-fold between Health Boards, from £331 to £1172, with average spending across Wales being less than £559, that is about half that spent per patient in England. There is a need to undertake national benchmarking of staffing (and grades) to quantify and understand the variability between Health Boards. For example, Dementia Coordinators are employed in different areas on Band 4 and Band 6, but their different roles and responsibilities are not immediately clear.
20
Young onset dementia (YOD) services
People who develop young or early onset dementia (YOD) are more challenging to diagnose and may
have distinct needs and face different challenges. In recognition of this, the Welsh Government gave
recurrent funding to each Health Board in 2011 to develop new YOD services across Wales.
Table 12: Does your service have a stand-alone clinic for YOD? How many people are currently known to have YOD and how many have been newly referred in the past 12 months?
AB UHB (n=5)
ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=3)
HD UHB (n=5)
Powys (n=3)
Wales
Stand-alone YOD clinic 5 7 3 1 2 18 (64%)
No stand-alone service 4 5 1 10 (36%)
No. of YOD patients currently known
341 81 135 110 35 86+** 36 824+
No. newly referred in past 12 months
204 61 86+* 24 14 82+* 11 482+
Estimated no. of YOD patients in UHB area
(DSDC 2003)
173 150 206 125 88 111 40 893
* data unavailable from one clinic ** data unavailable from two clinics
Stand-alone YOD services have been developed in five of the seven Health Boards, although the
criterion for acceptance of patients varies. Not all accept people with likely alcoholic dementia, or
those with dementia arising after stroke or trauma. Some require people to be under the age of 65
years at time of referral, whereas others accept people whose symptom onset was before age 65, and
yet others are more flexible and include some over age 65 who are still working or have younger
children. An agreed all-Wales criterion for acceptance by YOD services would help promote equity of
provision and avoid uncertainty about when YOD services should become responsible for patients.
The Dementia Service Development Centre (DSDC) estimated the number of people with YOD in each
Health Board in 2003 (totalling 893 across Wales) and these figures are unlikely to have changed
greatly in the past 10 years. The Alzheimer’s Society quotes figures that are more conservative (total of
806 across Wales). Based on these figures, there is wide variation between Health Boards in the
proportion of people estimated to have YOD living in the area that are currently known to YOD
services. In AB UHB, the number of YOD patients known to the service is double that expected,
whereas in CT UHB less than half the expected number are known.
21
The Health Boards that had stand-alone YOD services were asked about what they provided.
Table 13: If stand-alone YOD service, does it provide…
AB UHB
ABM UHB
BC UHB
C&V UHB
CT UHB
HD UHB
Powys
Pre-diagnostic counselling Y Y Y N - - Y/N
Initial assessment and diagnosis Y Y Y N - - Y
Post diagnostic counselling and support Y Y Y Y - - Y
YoD Dementia Support Worker Y N Y/N Y - - Y/N
YoD Education and support group for
carers
Y Y Y/N Y - - Y/N
Y-Yes. N-No
One YOD service was not involved with initial assessment and diagnosis, but all provided post-
diagnostic counselling and support. A YOD support worker operated in 5 of the seven Health Boards
and was involved with running specific education and support groups for carers of people with YOD.
Table 14: YOD service funding per year (staff costs) AB UHB
(n=5) ABM UHB (n=7)
BC UHB (n=3)
C&V UHB (n=1)
CT UHB (n=4)
HD UHB (n=5)
Powys (n=3)
Wales
Funding of dedicated YOD staff costs/year
£122,760 £92,895 £176,000 £450,342 £0 £59,159 ? £901,156+
Cost per patient estimated to have YOD (patient nos. in brackets)
£709.60 (173)
£619.30 (150)
£854.37 (206)
£3602.74 (125)
£0 (88)
£532.96 (111)
£? (40)
£1009.13+ (893)
The costs of staff dedicated to working with YOD services were provided by each Health Board. This
shows that at least £901,000 being spent on YOD staff across Wales each year, which is almost twice
the funding provided by Welsh Government for this purpose in 2011. However, the amount of
spending varies hugely between Health Boards, with one Health Board (C&V) accounting for half the
total spend, despite not being involved with initial assessment and diagnosis (this Health Board
operated an improvement programme with reinvestment of ‘Out of Area’ spending on placement of
people with YOD back into local services). There is no identified funding dedicated to YOD services in
CT as they operate an integrated service for all age groups.
When adjusted to reflect the estimated numbers with YOD, the average funding per YOD patient per
year in Wales is about £1000, which is over ten times that spent on people with dementia of any age.
This raises issues of equity between age groups.
22
Figure. Estimated funding on staff in each Health Board for each person with dementia of any age and
for each with young onset dementia estimated to be living in the area.
Acknowledgements We are grateful to the Royal College of Psychiatrists’ Centre for Quality Improvement for permission to
use the English National Memory Clinics Audit Tool and Report and to all the staff of the Welsh
Memory Clinics who contributed data and took part in the Memory Clinic Workshop in July 2014.
Thanks also to Professor Bob Woods, University of Wales Bangor School of Psychology, for advice and
support, including co-facilitating the workshop event.
This Report was prepared by:- Prof. Antony Bayer IPCPH, School of Medicine, Cardiff University Director, Memory Team, Cardiff & Vale University Health Board Dr. Leslie Rudd 1000Lives Improvement Service, Public Health Wales Wales Centre for Mental Health Services Development
0
500
1000
1500
2000
2500
3000
3500
4000
AB ABM BC C&V CT HD Powys All Wales
Staff costs per patient
(£)
Health Board
All dementia YOD
23
References
Alzheimer’s Society. Meeting the Gap (2013) http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2165 1000 Lives Plus. Improving Dementia Care (2010). http://www.1000livesplus.wales.nhs.uk/sitesplus/documents/1011/How%20to%20%2815%29%20Dementia%20%28Feb%202011%29%20Web.pdf English National Memory Clinics Audit Report (2013). https://www.rcpsych.ac.uk/memoryclinicsaudit Establishment of Memory Services, Final results of a Survey of PCTs (2011). NHS Information Centre https://catalogue.ic.nhs.uk/publications/mental-health/surveys/est-mem-serv-res-surv-pct- fin-2011/est-mem-serv-res-surv-pct-fin-2011-rep.pdf Mathews FE, Brayne C. Medical Research Council Cognitive Function and Ageing Study Investigators. The incidence of dementia in England and Wales: findings from the five identical sites of the MRC CFA Study. PLoS Med. 2005 Aug;2(8):e193. Epub 2005 Aug 23. Memory Services National Accreditation Programme (MSNAP) www.rcpsych.ac.uk/memory-network Memory Services Register www.rcpsych.ac.uk/memory-services-register National Dementia Vision for Wales (2011) http://www.assemblywales.org/bus-home/bus-chamber/bus-chamber-third-assembly-agendas.htm?act=dis&id=212097&ds=3/2011 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 http://publications.nice.org.uk/dementia-cg42 Prime Minister’s Challenge on Dementia (2012). Department of Health https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf Services for Younger People with Dementia. DSDC Wales (2003) http://dsdc.bangor.ac.uk/documents/service-evaluations/DSDC%20Report%20No.%202_Services%20for%20YPWD.pdf
24
Appendix
Discussion and suggestions made by delegates (n=63) at Conference Workshops (9th July 2014 –
Pavilion, Llandrindod Wells
Timely diagnosis of dementia requires sufficient resources to meet growing demand.
With current resources we cannot ‘future proof’ the memory service. Service demand will far
outstrip supply/resource.
GP’s and General Physicians must be better supported and enabled to identify/screen and
diagnose more patients with dementia (or other cognitive impairment) with referral to
specialist memory services for assessment of complex presenting needs only and for access to
post-diagnostic support and therapies.
GP’s to undertake more follow up work. Memory clinics might align with specific GP surgeries –
all as Part I (MH Measure) services
An option of ‘Once for Wales’ commissioning of memory clinic services could be considered to
help drive standardisation of services and equity of access.
Integration of YOD within memory clinic services is needed for more efficient use of existing
resources.
Health Boards should consider developing ‘Advanced Nurse Practitioner’ roles with nurse led
clinics to help prioritise, develop and expand post-diagnostic interventions (e.g. Cognitive
Stimulation Therapy) and routine follow up at 3 and 6 months.
Greater adoption of nurse prescribing roles should be considered.
Arranging appropriate investigations at the time of referral should be encouraged, to shorten
the time between referral and telling the diagnosis to patients.
A key contact who is “multi-skilled and multi-roled” and who stays with the patient and family
throughout the course of the illness is desirable e.g the ABMUHB model of Dementia
Coordinators (Grade 4) or C&VUHB Dementia Navigators. An alternative model is the ABUHB
Memory Service ‘Duty Desk’. Can other Health Board’s use these models to expand
provision/capacity for ‘key contacts’?
Post-diagnostic interventions are a clear priority for development, based on functioning and
need, rather than diagnosis. A post-diagnostic visit 6 weeks after diagnosis should be a
minimum requirement – for follow up to provide information and to signpost to
support/groups.
The range of post-diagnostic support available should be more equitable across the localities of
Wales – e.g. open access (forget-me-not) memory groups for people newly diagnosed with
cognitive impairment (not diagnosis specific), information/education groups for carers, drop in
centres, social day care (with memory specific days), dementia cafe’s, coffee mornings, walking
groups, access to finance/benefit advice, etc.
A small number of Read Codes should be used routinely when memory clinics communicate
dementia diagnoses to GPs to encourage accurate registration
25
Cognitive stimulation therapy (CST) should be feely available to all who may benefit. Training in
provision of Individual CST is needed for all relevant professionals, including generic community
workers and to interested family members (see http://www.ucl.ac.uk/icst).
Services should more actively engage with active research centres (e.g. Cardiff and Bangor) and
encourage patient and carer involvement. A regular all-Wales newsletter detailing research
opportunities should be considered.
An integrated service model for YOD should be developed. i.e. operate YOD services as
separate clinics but within the wider memory clinic service, rather than as a separate service.
Consider holding YOD clinics in primary care to assist with case finding.
Currently, local services and structures are different and, therefore, very difficult to compare.
We should consider using RCPsych accreditation standards in future audits to better capture
data on the quality of service provision and think about promoting national take-up of RCPsych
accreditation (but cost of £5000 per clinic, or £500 for Associate Status).
Referrals to CMHT for cognitive assessment/dementia diagnosis that are managed by memory
clinics need to be specifically recorded as referrals to memory services.
Routine collection of a small core dataset that is common to all memory services (e.g. date
referral received; date patient first seen; whether dementia diagnosed and, if so, its stage)
would help to monitor and promote service development. This should be incorporated into day
to day work.
Standardised measures for ‘staging’ of dementia – mild, moderate, severe – need to be agreed
and used routinely.
Service audits should be repeated annually, or at least bi-annually. This will require time for
staff to complete the audit to ensure reliable data. Additional administrative help may be
required.
Future audits should ensure tighter definitions of interventions such as ‘life story work’ and aim
to capture more data about the patient journey – what happens post diagnosis?
The audit data should capture/benchmark professional staffing composition (and wte) and
grades/banding, and enable local analysis of how staff time is used.
Issues of rurality need consideration – travel time across large, dispersed populations.