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1
Diabetes Patient Education -
present and future for
Thames Valley
October 2015
2
Contents
1.0 Executive Summary
Page 3
2.0 Introduction and Background
Page 4
3.0 Commissioning
Page 6
4.0 Best Practice for Providers
Page 11
5.0 Conclusion
Page 12
Useful Resources
Page 14
Acknowledgements
Page 15
Appendices (1-6)
Page 16
3
1. Executive Summary
This report has been commissioned as part of the Thames Valley Strategic Clinical Network
(TVSCN) Long Term Conditions Programme- supporting the adoption of person centred care
through care planning, based on the House of Care framework (HoC). This includes a core
principle that people who are informed about their health are more confident in their self-
management decisions. This entails a broader approach for patient information and support
than may be currently provided or commissioned.
This report responds to the current patient, provider and commissioner concerns that there
is an absence of comprehensive mapping and commissioning of the wide range of education
and support needed for effective self-management. The current situation for diabetes
patient education is described and the demands and expectations for a new perspective and
paradigm for diabetes self-management education are given.
The current focus and work of the TV SCN provides an ideal opportunity to meet these
challenges and make a significant contribution to the national agenda of scoping and
creating a template for appropriate Key Performance Indicators (KPIs) and Service
Specifications across all three levels of education for self-management.
The report covers the background and recent publications and guidance from the NHS and
other bodies. It includes the rationale behind commissioning diabetes patient education and
issues that need to be considered. It makes recommendations for commissioners and
providers of education to ensure that best practice self-management is commissioned and
provided.
This report should be considered in conjunction with the individualised Thames Valley and
Milton Keynes CCG reports highlighting specific local considerations.
The Thames Valley View
“I am delighted to be asked to promote the Thames Valley SCN report on Patient Education
for patients with diabetes. The ambition of those producing the document was to support a
more consistent approach to the provision of patient education for diabetes across Thames
Valley.
Perhaps most important is the priority placed on the information given at the time of
diagnosis (a lost opportunity for many at the moment) and the emphasis on the referral
process to structured education programmes as being an active process both on the part of
the referrer and the provider. Whilst the document is primarily intended for commissioners,
I would recommend any provider to familiarise themselves with its content so that they can
best prepare their service for the demands that the informed commissioner of the future is
likely to make particularly around improved data gathering and outcome measures.”
Dr Kathy Hoffmann
Bucks CCG Diabetes Clinical Lead
Clinical Expert Thames Valley Care and Support Planning Hub
4
2. Introduction and background
This report outlines the current national landscape of diabetes adult patient education and
future demands and expectations. It will highlight to commissioners and providers the
national guidelines, demographic issues, and best practice that will make future provision
‘fit for purpose’. One size will not fit all and a variety of models will accommodate the needs
of people with diabetes with regards to different learning styles, delivery mechanisms (one-
to-one, groups, face to face, distance learning, online, blended learning which can be a
mixture of different mechanisms) and stage of diagnosis.
This review of diabetes adult patient education is part of a much larger piece of work which
is to promote self management of diabetes (and other long term conditions) through care
planning across the whole Thames Valley Strategic Clinical Network area using the national
Year of Care1 model. The diagram below shows the House of Care with its various
components.
En
ga
ged
,in
form
ed p
atie
nt
HC
P c
om
mitte
d to
pa
rtners
hip
work
ing
Organisational processes
Commissioning- The foundation
Collaborativecare
planning consultation
Send test results
beforehand
Know your population
Consultation
skills / attitudes
Senior buy-in &
local champions to support & role
model
Integrated,
multi-disciplinary team & expertise
Information/
Structured education
‘Prepared’ for
consultation
Emotional &
psychological
support
Quality
assure and measure
Procured time for
consultations, training, & IT
Identify and fulfil
needs
IT: clinical record of care planning
An integral and vital part of the House of Care is the ‘Engaged, informed patient’ and this
report explores what this means in practice. The informed engaged patient needs access to
lifelong learning about their condition. This would include the patient being able to:
• Obtain and understand their bio-medical status (their test results) so that they can
then make and implement decisions for their own self-management.
1 Year of Care: http://www.yearofcare.co.uk
5
• Access diabetes information and support. This means that the Health Care
Professional working with them in the consultation needs to know what information
and support might be available locally.
• Access a wider range of self-management support, which would not necessarily be
condition specific, and that the options offered would be noted in the patient
record.
Recently the All-Party Parliamentary Group (APPG)2 for Diabetes embarked on an
investigation into the state of diabetes education and support and brought together current
evidence on the barriers to the provision and uptake of diabetes education. It produced five
wide-ranging recommendations, which are listed in Appendix 1. Their specific
recommendations for health care professionals and commissioners will be expanded in this
report.
Historically in diabetes care, there has been an emphasis on structured education,
supported by the evidence of its value in improving health. This evidence has been
referenced in a document from Diabetes UK, entitled Diabetes education: the big missed
opportunity in diabetes care which provides an overview of patient education and includes a
range of approaches to support patients to access self-management education at different
stages of the patient journey and in a variety of formats. However, this recognises that
structured education, by itself, does not meet all the needs of people living with diabetes.
Moreover, provision of education data is incomplete and inconsistent in the UK, which is
itself telling of the priority given to education. Patient feedback confirms that education is
rarely offered which may be due to beliefs that it ‘does not really work, is never going to be
attended by many people and is expensive.’ However, feedback from both the APGG for
Diabetes and Diabetes UK suggests that patients do want education and do understand that
it can make a difference. However, barriers, such as impersonal referral processes; locations
and timings of courses and culturally appropriate provision, need consideration to improve
uptake.3
The document, based on the Scottish NHS model, gives a new paradigm for understanding
diabetes education:
• Level one: information and one-to-one advice when diabetes is diagnosed
• Level two: ongoing learning that may be quite informal, perhaps through a peer
group.
• Level three: Structured education with a clear curriculum and teaching philosophy
that is delivered to a group of people, with quality assurance of teaching standards.
Commissioning has only addressed level three in the past and this change of emphasis in
supporting people with diabetes through all three levels of education needs to be
considered. A seamless delivery of services that meets the patient’s educational needs with
regard to that individuals’ own readiness and time scales and in formats that suit their
learning preferences is a new challenge for commissioning.
2https://www.diabetes.org.uk/Documents/Reports/APPG%20Diabetes%20Report_FINAL.pdf
3 Diabetes education: the big missed opportunity in diabetes care Diabetes UK, 2015
6
3. Commissioning Rationale
There has always been an acknowledgment of the need for patient education within
diabetes care. A 2012 Systematic Review4 of diabetes education that demonstrated
improvement in health outcomes and reduction in the onset of serious complications has
reinforced the recommendations from national bodies, formalised guidance and incentives,
outlined below:
o 5 Year Forward View:5 - “Many (but not all) people wish to be more informed and
involved with their own care, challenging the traditional divide between patients and
professional, and offering opportunities for better health through prevention and
supported self-care” (Page 6)
“We will do more to support people to manage their own health – staying healthy,
making informed choices of treatment, managing conditions and avoiding
complications. We will invest significantly in evidence-based approaches such as
group-based education for people with specific conditions and self management
educational courses, as well as encouraging independent peer to peer communities
to emerge” (Page 12)
o NICE: Structured Patient Education is approved by NICE (TAG60)6 and is Statement 1
of the Diabetes Quality Standards (QS6)7.
o CCG Outcomes Indicator Set8: The CCG indicator 2.5 (the number of diabetes
patients offered structured education within 9 months of diagnosis in 2011/12)
o QOF9: Referral to diabetes structured education within 9 months of diagnosis carries
11 QOF points but supports the attainment of a further 85 QOF points from the
wider health outcomes impact.
3.1 Cost Benefits
In the longer term, the reduction in healthcare costs and the benefit for patients of delaying
or preventing long term complications is very significant. In the short term there are also
potential cost savings through changes in prescribing costs: participants who attend
structured education courses often wish to reduce the amount of medication they are using
and understand that this may be possible through making different self management
choices. The X-PERT programme has demonstrated through its annual audits that savings in
prescribing costs can be made.10
In order for this potential to be optimised there does need
4 Steinsbekk A, Rygg LO, Lisulo M et al (2012). Group based diabetes self-management education
compared to routine treatment for people with Type 2 diabetes mellitus. A systematic review with
meta-analysis. BMC Health Services Research 12; 213 5 https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
6 https://www.nice.org.uk/guidance/ta60
7 https://www.nice.org.uk/guidance/qs6
8 http://www.england.nhs.uk/resources/resources-for-ccgs/ccg-out-tool/ccg-ois/
9 https://www.nice.org.uk/search?q=diabetes
10 http://www.xperthealth.org.uk/home/download
7
to be good communication between the providers of structured education and primary care
regarding an individual’s attendance at a course and subsequent review of treatment.
3.2 Changes in Patient Education Delivery
The 5 year Forward View indicates a wider understanding of the educational needs for self-
management whereas the other three recommendations and incentives above have
concentrated on Structured Education (Level Three) provision.
Levels One and Two fall outside the purview of current standards or guidelines, but their
provision provides an opportunity to reinforce the importance of education as an integral
and essential part of diabetes self management, that can then increase the understanding
for the need of and uptake of Level 3 structured education.
Traditionally commissioners have commissioned one group education programme at level 3
for Type 1 and Type 2 diabetes respectively. However, consideration now needs to be given,
not only to all levels of education but the provision of educational opportunities that
incorporate different patient learning styles. For more information on these potential
opportunities see Appendices 2 and 3.
In order to meet the new challenges in providing consistent and appropriate education at
each of the levels, there will be a requirement for robust data, agreed targets and a patient-
centred approach that incorporates the principles of the informed patient in line with The
House of Care. To commission the support and information needed for people with diabetes
the following will be required:
3.3 Underpinning Requirements for all levels of education
• All data and records to be accessible to all stakeholders; in accordance with
governance protocols. Moreover, a central point of access will ensure consistency
and strategic oversight.
• Information on total population and specific demographics including ethnicity, hard
to reach groups.
• Prevalence and incidence of diabetes in the population (actual and predicted)
• Estimation of numbers of people with diabetes who have previously received
education
• Outcomes data from any existing commissioned programmes (if available)
o Supporting data to demonstrate robustness and appropriateness of these
outcomes
o Further data to demonstrate value for money
The three levels may appear hierarchical and there is indeed a goal of achieving level 3
structured education, which is seen as the ’gold standard’ and is currently associated with
the best outcomes.11
However, although QOF currently awards points on early referral
11
Diabetes education: the big missed opportunity in diabetes care, Diabetes UK, 2015
8
(within 9 months of diagnosis) to Level 3, it can be argued that early access to levels one and
two can actually improve engagement and uptake of Level 3 education.
We also need to recognise that not everyone will be ready or able to access Level 3
education within the time frame suggested by QOF: commissioners should not limit access
to Level 3 programmes within specified time frames. In particular, there may be an
increased motivation to learn more about managing the condition if changes of medication
are needed or at the early onset of complications. This changing motivation may not be
systematically understood or utilised and could increase uptake of education at all levels,
but particularly at Level 3.
The pathway for supporting an individual is described in Appendix 2, How to meet Levels 1, 2
and 3 – an example pathway for someone with newly diagnosed diabetes. Many of the
interventions associated with improved diabetes outcomes, such as smoking cessation,
weight management and increasing physical activity, may also need to be accessed during
the pathway. Local authorities that fall outside the purview of the CCG may undertake the
provision of these services. However, the signposting of such services is beneficial and
should be mapped accordingly at each level.
The levels are further expanded below with recommendations at each level, outlining what
should be provided to ensure consistency of best practice: Examples and considerations for
all three levels are found in Appendix 3
3.3.1 Level one: information and one-to-one advice when diabetes is diagnosed
– Give a definitive diagnosis with initial information, including assurance that
further education and support will be provided, which makes it clear that
diabetes is a serious lifelong condition that can be managed successfully.
– Assess the presence of depression or mental health and the need for further
support. 12
– Allocate adequate appointment time for this first appointment.13
Commissioner Recommendations:
• Ensure that initial information sheets or packs provide consistent information across
the entire commissioning area and, if necessary, commission.
• Provision of health care professional training that incorporates the necessary skills
and knowledge around the initial diagnosis:
o including awareness of mental health issues
o appreciating the value in allocating appropriate time for appointments
12
Park M, Katon WJ, Wolf FM. Depression and risk of mortality in individuals with diabetes: a meta-
analysis and systematic review. General Hospital Psychiatry 2013;35:217-25
Shaban C, et al. The role of psychological assessment in patients with newly diagnosed Type 1
diabetes. Diabet Med 2002; 19 Suppl 2): 98. 13
Dr Jen Nash, Dealing with diagnosis of diabetes. Practical Diabetes 2015; Vol 32 No 1: 19-23
9
3.3.2 Level two: ongoing learning that may be quite informal, perhaps through a peer group.
– The current situation includes support from voluntary organisations including
Diabetes UK, JDRF (Juvenile Diabetes Research Foundation) and the Diabetes
Research & Wellness Foundation. This includes events, websites, leaflets and
peer support programmes.
– Social media such as online forums, blogs, provide support that is hard to
monitor.
– In order to monitor this support and ensure that it is fit for purpose within the
learning pathway, it could be incorporated into the Care Planning consultation
and records. Good quality Level 2 support may lead patients to decide that they
do not require Level 3 structured education. This would be particularly true for
those who do not wish to engage with the current provision of structured
education in the group education model, which should also be recorded in their
notes.
Commissioner Recommendations:
• Map and create a live directory of local and national services, for diabetes
specific and lifestyle interventions: including online, electronic media, group,
peer and any other appropriate delivery mechanisms, to signpost quality
providers.
• Record-keeping within the Care Planning consultations should monitor
signposting and access to Level 2 education.
3.3.3 Level three: Structured education with a clear curriculum and teaching philosophy that
is delivered to a group of people, with quality assurance of teaching standards.
– NICE has created guidance that includes criteria for Level 3 structured education (see
Appendix 4). The NICE guidance does not limit structured education to purely group
education. The issues for commissioners are the assessment of current provision of
‘structured education’ and whether it fits both with the criteria given by NICE and
the needs of their local population.
– There are a number of programmes, such as DAFNE, for Type 1, and DESMOND and
X-PERT for Type 2 that provide group structured education on a national level. In
addition, other national programmes engage patients outside a group setting. These
programmes may already be locally commissioned and may be provided by NHS or
private concerns, and they certainly provide a benchmark both for audited outcomes
and cost benefits when considering the provision of any new services. These
different models provide an opportunity for commissioners to consider the best fit
of national vs local programmes, NHS vs private providers when assessing value for
money within local priorities and demographic profiles.
– Furthermore, in addition to current provision of updates or refreshers within
national programmes, it should not be assumed that attendance at a Level 3 course
is the end of the journey. As stated in TAG 60: “structured patient education is made
10
available to all people with diabetes at the time of initial diagnosis and then as
required on an on-going basis, based on a formal, regular assessment of need”. 14
Commissioner Recommendations:
• Check current providers of Level 3 self-management education have demonstrated
that their programme meets the NICE criteria (see Appendix 4) or can provide
QISMET (Quality Institute for Self Management Education and Training) 15
certification. Refer to Appendix 5: Commissioners’ Checklist: Meeting the NICE
criteria
QISMET is an independent organisation which provides a process and tools which
gives assurance that a provider is delivering a quality service which includes meeting
the NICE criteria. It is important to note that the structured education criteria also
include ongoing education so ensure that this is included via update or refresher
sessions.
(The CCGs within Thames Valley and Milton Keynes currently commission a range of
quality programmes which are either national programmes that aim to meet the NICE
criteria or local programmes which have been QISMET certificated. There is just one CCG
area with a locally developed programme which has not yet been through the QISMET
certification process. Further information about these programmes and any
recommendations will be included in the individual CCG reports.)
• Map and create a live directory of local and national services that meet NICE criteria,
including online, electronic media, group, peer and any other appropriate delivery
mechanisms, to signpost quality providers. Ensure that this resource is itself
signposted and available for Care Planning consultations. (Appendix 6 gives an
example of a matrix which can be completed to show how the different levels of
education plus the different delivery mechanisms can be viewed at a glance. This
could be used as a template for the use of individual CCGs to capture the availability
of their own educational opportunities)
• Consider different contracting arrangements and ensure that procurement and
tender requirements conform to any published guidance and meet the appropriate
NICE criteria.
• Ensure that record-keeping within the Care Planning consultations monitors
signposting and access to Level 3 education, and then as required on an on-going
need.
• Ensure that the patient outcomes data from any existing commissioned programmes
are appropriate to the local needs and targets, such as biomedical results/weight
loss. Ensure that the audited data demonstrates robustness and appropriateness of
these outcomes, and allows benchmarking for future provision16
14
https://www.nice.org.uk/guidance/ta60 15
QISMET: http://qismet.org.uk/files/1313/8511/2281/QISMET_DSME_Standard_14_11_11.pdf
16
Diabetes UK has examples of areas achieving good outcomes:
https://www.diabetes.org.uk/Professionals/Resources/Diabetes-self-management-education/
11
• Produce a service specification for Level 3 education, that establishes key
performance Indicators, including but not limited to: referral rates, booking process
and timelines, overall course attendance, conversion rates of referral to attendance,
decline and DNA rates, patient satisfaction and other patient outcomes. (see the
tool kit for an example of a service specification) 17
• Consider the use of benchmarking either informed by existing local provision or by
experiences from other areas to inform best practice. (Nationally, it is estimated that
approximately 50% of those referred to structured education attend. This has been
extended in areas of good practice.18
)
• Consider the need for other models within Level 3 education, that meet the NICE
criteria for structured education,
o to respond to local demographics;
o to allow for different learning preferences;
o to meet the needs of those who require other delivery mechanisms to group
education
4. Best Practice for Providers
The new landscape with its description of three education levels widens the possibilities for
delivery and content of programmes and raises issues for providers both to ensure they are
meeting NICE criteria, with new programmes, and to incorporate the delivery mechanisms
that will increase uptake and appeal to the widest population. Equally, the increasing
prevalence of diabetes leads to a further demand on educational resources at all levels but
particularly at level 3.
Multiple alternative providers of education at all three levels are emerging nationally.
Providers should be aware of the recommendations for commissioners outlined in this
report and be able to respond appropriately.
Commissioners will be recommended to commission level 3 diabetes structured education,
but they may not specify a particular programme. This may be an opportunity for providers
to choose to deliver the programme(s) which best meet the needs of their population but
also to consider the skill mix, capacity and competencies of their own workforce.19
These
programmes may be nationally or locally developed and must be demonstrated to meet the
NICE criteria.
Providers may also wish to consider their current level one and two provision and identify
any gaps as well as potential partners to fill these gaps, such as other providers, including
corporate partners, local charities and supermarkets.
17
Suggestions for Key Performance Indicators and data collection have been given in the toolkit for
optimal delivery of structured education for Type 2 diabetes produced by the South London Health
Innovation Network (HIN) and the London Strategic Clinical Network(LSCN) http://www.hin-
southlondon.org/system/resources/resources/000/000/047/original/Structured_Education_Toolkit_(Fin
al).pdf 18
Improving the management of diabetes care: A toolkit for London clinical commissioning groups,
London Strategic Clinical Networks, May 2015 NHS England 19
Diabetes Education Network (DEN) Educator Competencies www.diabetes-education.net
12
Successful providers have incorporated the following aspects into their service:
• Diabetes self management education lead
• Quality trained administration to enable robust recruitment and record keeping
• Participant reminders
• Prompt discharge information, including declined, for appropriate follow-up and sign
posting
• Access to courses for participants which includes consideration of timing, offering
evening and weekend choices, location, venues, languages, public transport and
parking.
• Quality referrals:
o Access of patient to appropriate bio-medical results, understanding of and
agreement by patient to participate
o Awareness training for referrers including the possibility of observation of
courses
o Monitoring expected incidence and referral rates, benchmarking and feeding
back this information to referrers including attendance rates of their referrals
• Giving the option for self-referral for participants as well as opt-in and choice of
venue and date for attendance rather than being allocated an appointment.
• Taster sessions for those who are unsure they wish to attend.
• Other options for decline or DNA’s at level 2 or 3 that all signpost back to Level 3.
• User feedback and testimonials
• Utilise Best Practice guidance20
• Have an established protocol if a patient is ‘not ready’, with further offers; re-
signposting and keeping the door open, particularly to capture increased motivation
with medications change or early onset of complications
5. Conclusion
Thames Valley and Milton Keynes have shown a commitment to person-centred care
through the adoption of the HoC framework and are now breaking new ground in their
consideration of the whole spectrum of education needed to support the ‘engaged,
informed patient’
This new understanding of the whole spectrum of education as outlined in levels 1, 2 and 3
challenges commissioners and providers to re-examine their approaches to education. This
report gives more explicit guidance about what this could look like in practice. It needs to be
acknowledged that this is an evolving approach and that further work is continuing at a
national level particularly to fully describe the details of Level 2.
The work stream initiated by the Long Term Conditions Expert Hub of the Thames Valley
SCN provides the CCGs of Thames Valley and Milton Keynes with a forum to capitalise on
and be forerunners in designing the necessary models that will evolve from this new
national thinking.
20
Structured Education for Type 2 diabetes: A Toolkit for optimal delivery, Health Innovation Network
13
Further issues for consideration by CCGs:
• There are a lot of existing programmes that may seem fit for purpose for level 2 and
3 (see Appendices 3 and 6) and emerging programmes that might be suitable. In this
fast-moving area and to ensure best fit, an invitation to express interest may
highlight innovative solutions and further questioning will establish if emerging
programmes can meet the locally agreed priorities.
• To ensure compliance with NICE criteria for level 3, any proposed programmes
should have:
o Documented outcomes which may include bio-medical outcomes but may
equally be outcomes which demonstrate increased confidence in self
management.
o A process to guarantee that outcomes will continue to be achieved.
� A useful question to ask is how often and in what format will audit
data be available to inform decision-making so that desired targets
can be monitored and maintained?
Although the NICE criteria and the above requirements pertain to level 3 programmes,
they would provide a useful guide to the questions that should be included when
considering commissioning of level 2 programmes or models.
• The CCG’s within the Thames Valley area might like to consider the possibility of
economies of scale by working with neighbouring areas/different programmes
particularly when considering commissioning new programmes or technologies. This
would be a new and innovative way of collaborating, which has not yet been
exploited in the UK but might offer considerable opportunities for cost benefits.
• While some areas will have a service specification for level three education, none has
been developed for levels one or two. Diabetes UK intends to further investigate
what might be included in level 2 provision and evidence of its effectiveness.
However CCG’s might like to consider the development of a service specification that
incorporates all three levels and provides a comprehensive overview of the
educational pathway.
14
Further resources for Thames Valley and Milton Keynes CCGs:
Individualised reports to complement this overarching report are being produced which will
clarify each CCG’s immediate priorities.
The hierarchy of these priorities will be:
• The provision of comprehensive level 3 education which demonstrably meets
the NICE criteria, including admin support;
• Mapping and identifying the available education for all 3 levels;
• Provision of Level 1 patient information and support and HCP training;
• Strategies to ensure robust recording within care planning to record patient
preferences and uptake of education and to minimise inappropriate referrals;
• Assessment of, and signposting to, quality options for Level 2 education
opportunities
Useful Resources
• For further information on Thames Valley initiatives for Utilising the “ House of Care”
and patient-centred care: http://tvscn.nhs.uk/domains/long-term-conditions/
• Toolkit produced by the South London Heath Improvement Network (HIN) and the
London Strategic Clinical Network (LSCN), which addresses the causes of low uptake
of structured education and provides guidance on how to make high quality
structured education easily accessible to people with type 2 diabetes. This includes
sections for commissioners, providers, suggested KPIs and an example of a service
specification.
http://www.hin-
southlondon.org/system/resources/resources/000/000/047/original/Structured_Edu
cation_Toolkit_(Final).pdf
• A patient education commissioning information pack, produced by the SE Coast SCN,
includes a section on optimising capacity and a list of patient education programmes
with their characteristics:
http://www.secscn.nhs.uk/files/1914/2781/4737/SEC_CVD_SCN_Diabetes_Patient_
Empowerment_Structured_Education_Commission.pdf
• Diabetes UK Diabetes Self-Management Education:
www.diabetees.org.uk/structured-education
Information about patient education options, available resources and improving
access
• Educator competencies: Diabetes Education Network (DEN) www.diabetes-
education.net
15
• Successful Diabetes - SD Signposts is a listing of diabetes-specific and general health
and well-being support organisation to help people choose reliable self-help. It can
also be helpful for commissioners who are creating a local self-help menu. The
download also includes information and assessment about learning styles, to
enhance effective choices.
http://www.successfuldiabetes.com/living-with-diabetes/sd-downloads
Acknowledgements
This report has been commissioned by Julia Coles, Senior Clinical Network Manager,
Strategic Clinical Network – Thames Valley and Milton Keynes and the Long Term Conditions
Expert Hub, on behalf of Thames Valley and Milton Keynes CCGs.
This report has been prepared by Suzanne Lucas (Lucas Life and Health Limited) with much
appreciated support from Rosie Walker (Successful Diabetes www.successfuldiabetes.com )
and Abi Odubayo Networks Assistant, Strategic Clinical Network and Senate – Thames Valley
16
Appendices
Appendix 1
All Party Parliamentary Group for Diabetes (2015) Taking Control: Supporting people to
self-manage their diabetes
The APPG has found wide variation in the provision of educational opportunities available
and makes the following recommendations:
Recommendations
1. The 2015–16 NHS England Planning Guidance should ensure that all areas have plans in
place to ensure that all people with diabetes have the skills and confidence to manage their
diabetes by 2020. By copying best practice it is realistic for every area to:
a. Commission convenient and high quality structured education courses and top-up
modules for all who wish to go on one when the benefits of a course have been
clearly explained to them.
b. Offer other learning opportunities about diabetes and support through peers,
groups, taster sessions and online courses and communities.
These need to be made available and clearly communicated to people.
To make this happen, the following steps need to be taken:
2. IT systems need to be integrated to enable better data collection, electronic referrals and
provision of patient feedback. These make it possible to ensure wide coverage, increase
uptake, and drive service improvement. An electronic administration system can also inform
commissioning decisions about location, timings and marketing that are determining factors
for driving attendance.
3. Commissioners and healthcare professionals should understand and promote the benefits
of education for people with diabetes. This requires healthcare professionals to be better
trained in the advantages and objectives of diabetes education and have current knowledge
of the programmes available locally.
4. National partners should work together to develop a shared approach to paediatric
diabetes education for children, young people and families and throughout transition to
adult services. This has the potential to reduce duplication and make it more
straightforward for clinical teams to deliver high quality education.
5. The clear benefits to people’s health of attending education courses mean that the
Government should give people a legal right to time off work to attend education courses
about their diabetes that their healthcare team believe are appropriate to their needs.
17
Appendix 2
How to meet levels 1, 2, 3 – an example pathway for someone with newly diagnosed
diabetes
Level 1
Diagnosis confirmed and explained in one to one consultation with HCP, including medical
examination and medication prescription as necessary;
For Type 1, involvement of specialist team to initiate insulin and provide 1-1 support for the
first few weeks, according to local protocol and NICE guidelines;
For Type 2, at least 2 x 30 minute sessions with Practice Nurse and dietitian, to explain more
detail and answer questions, give relevant information about support organisations and
ways of getting support locally; encouragement to find out more and how to do this;
explaining ongoing care, treatment and education pathway;
For both: Referral to level 3 education as appropriate for individual, and in keeping with
local protocols
Level 2
This is the on-going encouragement to continue learning; explanation of care planning
approach, with prior sharing of results. At each one to one and care planning consultation,
prioritising questions and focusing on skills and behaviour development, problem solving,
goal setting and action planning will all help learning;
Level 2 is not just diabetes learning: general health and wellbeing promotion is also
important, especially for those with other conditions as well as diabetes. Also level 2 is an
ideal opportunity to engage with emotional and psychological wellbeing as well as physical,
which can have a profound influence on diabetes self management;
Provide a ‘signposting menu’ of self-help options, which can be national and / or local, to
encourage on-going learning. Discussion of what individuals plan to use or have found
helpful, as part of on-going care planning & in one to one consultations;
Referral to level 3 education as appropriate, if not already in place
Level 3
Attendance or participation in a suitable programme which meets the criteria for structured
education, provided at least, but not limited to, the timescales recommended by NICE
18
Appendix 3
Different methods, with examples, of delivery of education within all three levels – the
considerations include cost, accessibility, ease of use, meeting needs, local vs national
availability, quality assurance, audit and admin requirement.
Method of Delivery Considerations Levels:
Face to Face – one to one
T1 and T2
Generally at first point of
diagnosis: GP
surgery/clinic/hospital
Very personal approach which can focus on individuals’
questions; personal learning needs and can be assessed and
documented promptly.
Lack of peer interaction, and ‘educator’ may not be
consistent or up-to-date
1
Self directed
Online / Electronic –
(internet or PDF- based
materials, webcasts, books,
podcasts, videos, DVDs,
CDs)
Flexibility and convenience, choice of materials and styles;
Signposting required to flag quality providers
Feedback from reports of usefulness
No formalised referral process
Hard to assess, measure or audit learning or response to
content;
1 and 2
Self-directed with
additional educator
support
Online/electronic/distance
delivery, (could be any of
above with additional
planned educator contact)
T2: DIABETES MANUAL
PROGRAMME
12 week, home-based
programme using a
‘workbook’ manual and
relaxation CD, with 3 x 10
minute telephone support
contacts, scheduled within
the 12 weeks
www.successfuldiabetes.co
m
HELP-diabetes.org.uk
(under development)
Convenience: timing, style and location
Ability to document learning and audit;
Personalised training with clear goals and expectations
No formalised referral process
May complement group education for those not
able/desiring group meetings
2 and 3
19
Self directed (group)
Online – interactive (eg
internet-based learning
programmes facilitated by
educator)
Convenience and flexibility with no time-dependence or
travel
Online group-based learning is known to be effective.
Signposting required to flag quality providers: need for a
robust virtual learning environment (VLE) or platform with
carefully created learning materials and activities.
2 and 3
Face to Face – group
National Programmes:
T1: DAFNE:
5 days
www.dafne.uk.com
T1: BERTIE
1 session x 4 weeks
http://www.rbch.nhs.uk/bd
ec2/bertie.shtml
T2: X-PERT
6 sessions x 2.5 hours pw
www.xperthealth.org.uk
T2: DESMOND
1 session x 6 hours or 2 x 3
hours
www.desmond-
project.org.uk
Peer learning and interaction is valuable;
Time and cost efficient – information given to many at the
same time;
Enjoyable activities and meets a variety of learning styles
Not suitable or appealing to everyone: other
programmes/delivery methods may be required in addition.
Venue and accessibility, including hard to reach groups.
Evidence-based
National Programme
Learning can be assessed and measured, documented for
successful outcomes audit;
Initial set-up costs include materials and educator training.
On-going costs include updates of materials and training;
handbooks; admin support for attendance and venues
3
Face to Face – group
Local NHS Programmes:
Private or Not For Profit
Programmes:
from Pharmaceutical,
medical or education
companies or charities
May be based on existing national models or programmes
Can meet local needs with local delivery and potential
patient involvement in development;
Need to meet NICE criteria but possible cost benefit in
relation to licence fees; QA and audit
May be offered by companies for free, cost benefit
regarding training, materials and possibly admin
If cost involved, assess for comparable outcomes to other
programmes
If being marketed as Level 3, critical to assess that NICE
criteria, including audit, are being met
2 and 3
2 and 3
20
Appendix 4
The criteria for structured education:
http://www.ipcem.org/etp/PDFetp/StructuredReport.pdf
A ‘level 3’, or structured diabetes education, programme, should have:
1. a structured, written, curriculum, including learning outcomes for the whole
programme and the sessions within it, quality assurance standards, and evaluation
methods
o This means a written manual of both content and process for the
programme, as well as individual session plans. It needs to be sufficient for
any educator to be able to deliver the curriculum (face to face) or for a
person to follow individually if learning by distance or one-to-one
2. trained educators, specifically for the programme being delivered
o Providing effective learning is a skill. It is not the same as giving a
presentation or lecture and requires, for example, recognition of learning
received as well as delivered, promoting interaction and participation, and
confident group facilitation, where relevant.
o Educators need to be trained in the specific programme by the organisation
providing the programme, with evidence to support this
3. quality assurance, both internally and externally
o Quality assurance ensures that programmes are delivered consistently to
each learner. Internal QA is ‘in house’, by colleagues or peers. External QA is
by invited reviewers, not normally involved in the programme, or by a
relevant external monitoring agency, for example QISMET.
o Internal standards and measures need to be available for assessors to
perform QA, which also includes educator behaviours and environment of
provision, as well as content delivery. External agencies may have their own
quality standard, available in advance, to be applied to the programme.
4. audits
o Regular assessment of, for example numbers referred, attending and the
outcomes related to the aspirations of the programme needs to be
performed, for example, annually or more frequently. Evaluation of their
learning experience by participants can also be audited.
o Note there is a difference between educational outcomes and biomedical
outcomes. Educational outcomes are related to the learning outcomes, for
example, rather than blood glucose levels, although these may also be
measured. Outcomes may also be psychosocial and / or related to the
particular underpinning theory (see below).
o Successive audits can be compared with each other as evidence of continuing
effectiveness
5. An underpinning relevant, evidence-based educational theory and support in self-
management. Its delivery to be dynamic, flexible to the needs of the individual and
involve users in its ongoing development
o The theoretical background to the programme must be articulated, with its
evidence of effectiveness. Ideally, the programme itself should be subjected
to research against no-programme or usual programme, although this is not
always possible. The theoretical basis for the programme must be
21
defendable for the population for whom it is delivered, eg children and young
people, adults, type of diabetes, different ethnicities, etc.
Appendix 5
Commissioners’ Checklist: Meeting the NICE criteria.
1. If the provider has a QISMET certification, then the programme meets the NICE criteria
http://www.qismet.org.uk/certification/dsme-certification/
2. If QISMET certification is not in place, the following criteria of evidence should be readily
available:
Criterion 1:
The written curriculum, showing learning outcomes, quality assurance standards and
measures, and evaluation methods
Criterion 2:
The training programme for educators, including learning outcomes, delivery methods and
their justification, the competencies or learning outcomes for educators and how these are
assessed and maintained
Criterion 3:
The quality assurance policy and documentation, including an external peer review of the
programme.
Criterion 4:
The audit policy (on-going or planned), including previous audit data, showing how the
specific outcomes for the programme are audited, including as appropriate medical,
psychosocial and learning outcomes
Criterion 5:
The documented evidence base for the programme, including any previous, on-going or
planned research showing its effectiveness. An explanation of how the delivery of the
programme meets the theoretical background and the needs of the population for whom it
is provided.
If this information is inadequate or there is any delay in providing it, this will require
further attention and prompt action to ensure that the programme does meet the Level 3
standard.
22
Appendix 6
This matrix shows how all levels of education can be viewed at a glance: it can be a template
for the use of individual CCGs to capture the availability of their own educational
opportunities.
Online / electronic
Face to Face
Group
Example here
One to one – individual
or supported learning
Example here
Examples of Educa on & Wellbeing Opportuni es for Diabetes (Type 1 & 2)
Group
Example here
One to one – individual
or supported learning
Example here
Group
Example here
One to one – individual
or supported learning
Example here
Group
Example here
One to one – individual
or supported learning
Example here
Level 2 (Informal) Level 3 (Structured)
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