The report is jointly published by Diabetes UK Scotland and NHS QIS. The Scottish Diabetes Framework Action Plan (June 2006) made a commitment to: …

Review of
the care experience of people
living with diabetes in NHS Dumfries and Galloway

February 15, 2007

Venue: Douglas Arms Hotel, Castle Douglas
Number of attendees: 5

Contents

Background 3

Introduction 4

Objective 4

Summary of Key Findings 5

Appendix 1 - Methodology 9

Appendix 2 - Full text from process maps 11

Appendix 3 - Questionnaire results and analysis 18

The analysis and report is produced by Diabetes UK Scotland in partnership
with NHS QIS The report is jointly published by Diabetes UK Scotland and
NHS QIS Reports will be produced for each health board area and
distributed to key stakeholders throughout Scotland It will be circulated
mainly by email and available on the websites of Diabetes UK Scotland and
NHS QIS
Background

The Scottish Diabetes Framework Action Plan June 2006 made a commitment
to:
9 Improve the communication and dissemination of information about
diabetes in Scotland
91 Provide tools to support the continuous monitoring of diabetes services
for quality
improvement
NHS Quality Improvement Scotland will appoint a co-ordinator to
undertake a round of streamlined visits to all NHS Boards to review
progress in implementing diabetes standards A report of the findings
will be published by September 2007
The Scottish Diabetes Group will work with NHS Quality Improvement
Scotland and Diabetes Managed Clinical Networks to develop and
implement a real-time online diabetes assessment tool to monitor
progress in delivering improved diabetes services The assessment tool
will be in use by March 2008
NHS Quality Improvement Scotland will work with Diabetes UK to review
the care experience of people living with diabetes This work will be
delivered by March 2007
NHS Quality Improvement Scotland will review and update the content of
the diabetes clinical standards in the wider context of their work on
long-term chronic conditions This work will be delivered by September
2008
Introduction

NHS Quality Improvement Scotland NHS QIS commissioned Diabetes UK
Scotland to facilitate the review of the care experience of people living
with diabetes in Scotland A
group of staff from Diabetes UK Scotland were
trained in a process of facilitation specifically designed for the purpose
Working with local healthcare professionals, Diabetes UK Scotland organised
focus group meetings involving people living with diabetes in each health
board area in Scotland These meetings took place between November 2006 and
April 2007

Objective

The purpose of the review is to support the work of the NHS QIS assessment
of the implementation of diabetes standards by ensuring the voice of people
with diabetes and their families is a key contributor to this process This
was to include their perspective on progress in relation to national
framework priorities The process would also inform the prioritisation of
work within the Scottish Diabetes Group and Diabetes UK Scotland

A final report will be produced which will pick out the main Scotland wide
themes and specific health board area feedback will be given within six to
eight weeks of the focus group taking place through the Managed Clinical
Networks MCNs
Summary of key findings

Healthcare professionals working together

Evidence of positive care experiences:

There was praise for healthcare teams both in
primary and secondary care
working well together at diagnosis and treatment Consultants were
praised for offering advice leading to improvements in diabetes control
GPs were on the whole regarded as being aware and informed of diabetes
Diabetes nurses and dieticians were also praised for their excellence in
managing treatment plans and recommending diets

All participants were given regular annual reviews to monitor their
diabetes About half the participants were offered flexible annual review
appointments that allowed for a choice in dates and times

Evidence of negative care experiences:

However there was a concern of initial diagnoses being protracted and being
delayed by diabetes symptoms not being spotted I went to my doctor to ask
about my eyesight changing within a week and a bad case of thrush She
never asked about thirst so I never said

One attendee said: it took 5 months to get a podiatry appointment with
another never having seen a dietician

There was also some concern that diagnosis was delayed by the absence of a
full hospital service at weekends

One participant spoke about how on admission to hospital it took
four days
for diabetes healthcare professionals to be called in to begin
consultations In one case a patient was made to wait almost 8 hours to be
admitted to a ward and was not given anything to eat during that time
When admitted to hospital, some participants were concerned that ward
nursing staff were not aware of the requirements of diabetic patients

The distribution of diabetes services in the area was a concern for
patients Services were thought to be concentrated towards the east and
despite the provision of a new hospital in Stranraer, Dumfries was not
aware of distance or issues

The turnover of Diabetes Consultants in the area was raised as a concern by
people; one participant had 8 appointments to see the consultant and had
seen 6 different ones There was no consistency of information and advice
from each of these six consultants on each visit

Information

Evidence of positive care experiences:
Participants observed that relevant healthcare professionals had up-to-date
information and current results available at consultations

Any information about diabetes and complications was regarded as useful
Information was
mostly made available at diagnosis and occasionally at
other times However, some people reported that they had not received
information sources that would benefit their understanding of diabetes at
all There was a concern that too much information was given at diagnosis:

I was in such a shock that Im not sure what info was given

Participants were keen to have more understanding on diabetes including
results and targets, practical information and more understanding of what
could be normally expected Where the good analysis and recommendations
were given attendees reported that it lead to improved control

The introduction of the diabetes structured education programme DAFNE was
welcomed and for those about to join looked forward to it There was a
desire that these structured education programmes should be made more
widely available

As a member of Diabetes UK and a reader of Balance - no shortage of
information

Evidence of negative care experiences:

Responses from the Survey indicated that patients were generally not given
records of results to keep from tests

On the occasions when patients were given test
results as figures it was
often not enough to inform patients fully about their diabetes management

Positive stories and unmet needs

Evidence of positive care experiences:

Participants reported good communications with healthcare professionals was
resulting in staff being approachable and consequently bringing
improvements in control and patient confidence

Local DSN has said that I can contact her at any time if I have a
problem and she is encouraging

Love my DNS and dietician for information and help and treatment

Very good internal assessment by new consultant and subsequent
improvement in control

Evidence of unmet needs:

Relationships with diabetes consultants was a concern to some patients, one
locum was thought to treat consultations with little respect and laughed
during appointments Another patient who wanted more information when she
was diagnosed was told she was asking for too much at that time

One participant was keen to have more support for her weight management,
however advice varied and there was a long queue for the weight clinic

|
|
|Recommendations for areas to take forward |
| |
|Improve patient focussed delivery of information and results |
| |
|Role out structured education programmes |
| |
|Improve geographical delivery of diabetes services |
| |
|Ensure non diabetes staff have sufficient knowledge to identify |
|and respond to the needs of people with diabetes |
| |
|Improved inpatient care |
Appendix 1 - Methodology

Introduction

Focus groups were held with patients from each NHS board area This
required recruitment to achieve as wide a representation of people living
with diabetes as possible This meant engaging with local health care
systems, in particular MCNs, specialist clinics, primary care staff and
public involvement workers
Recruitment was also sought through the Patient
Focus Implementation Group a sub group of the Scottish Diabetes Group, NHS
QIS patient representatives public partners, local Diabetes UK members
and voluntary groups and local media

Process

At each focus group, the format and purpose of the meeting was introduced
by Diabetes UK Scotland staff: overall purpose of the focus group; what the
diabetes standards are; how the QIS process works; and how the meeting
would be reported

Participants were thanked for coming along and were invited to introduce
themselves to each other as the evening progressed Diabetes UK Scotland
staff clarified their roles for the evening: to present as facilitators and
not as spokespeople for Diabetes UK Scotland, to manage timing and
structure so that the objectives are achieved: and to collect the
information that comes from the group There was no expectation that
participants had a common experience of services; each experience is valid
and important and people should feel able to contribute openly and honestly
without fear of repercussion or identification

The wider context of the meeting was explained by how the evidence / data
associated with peoples
experiences would be captured, - through
individual questionnaires and group work - and how the outcomes would be
fed back to the National Health Service In order to establish a suitable
environment for the process to succeed ground rules for working with the
group were agreed, ie confidentiality, no rights and wrongs, let everyone
contribute, etc The participants were then invited to complete a
questionnaire

Process Mapping

Process mapping is a group activity that allows people to map out the step-
by-step experience of a user as they are passed, by care providers, through
the care system The end product is a visual representation of that
experience within which its inherent gaps, delays, duplications, etc can be
readily identified The activity allows the care experience to be shared
and built on by a group of people who have an understanding of that
experience It can be a powerful way of users and carers working together
to develop mutual understanding of the realities of both giving, and
experiencing, care in a complex system or between systems

It allows people to have a shared view from which decisions can be made to
change processes in order to provide a more streamlined,
efficient,
supportive and effective experience for users

The aim of this activity is to involve people in reflecting on their
personal experiences from a particular perspective throughout the various
stages of their journey of care Whilst participants are working together,
it is their individual experience that is captured Therefore there is no
need to share stories out loud unless they want to The importance is that
they are able to add their experiences and recommendations to the map
anonymously

There were three maps, each working from a different perspective
Participants were divided into three groups

Map A - Healthcare professionals working together
Map B - Information
Map C - Positive stories and unmet needs

Each map had seven steps as shown:

The participants were then given their own supply of post it pads Yellow
positive experience, Green negative experience They were asked to write
down their own experience, needs, and recommendations, etc along the
various steps representing their diabetes care journey The various stages
of the map were displayed in a line and positive experiences went on the
top of the map and negative on the bottom The facilitators demonstrated
the map process and confirmed everyone was clear with the procedure As
soon as the activity was started the facilitators circulated to ensure
everyone understood what was being asked of them, checked it was going well
and that everyone was contributing The participants then circulated round
each map to get the opportunity to contribute to each one

After the maps were complete
the facilitators explained that they would
collate all the data from the questionnaires and process maps and the
information gathered at the meeting would be combined with information from
other health board areas into a full report after the last meeting in April
2007 Facilitators confirmed the findings would be published and how people
could access copies The process also included an opportunity for people
living with diabetes to sign up to be more involved with their MCN, to
receive a copy of the local report and to participate within Diabetes UK
Scotland Evaluation forms were distributed and people were asked to
complete them before they left to help Diabetes UK Scotland learn from how
they work with people to get this kind of information People were invited
to stay if they had a burning issue which they had not had a chance to air
There was a flip chart for additional issues to be collated

Appendix 2 - Full text from process maps

Do the professionals involved in your care give you a record of your
results to keep

|Yes |1 |
|No |4 |
|base |5 |

Most people attending were not given a record of
their results to keep

In your experience, do the professionals involved in your diabetes care
have up to date information and current results when you visit them?

| |Yes |No |Not |Dont Know|unanswered |base |
| | | |applicable | | | |
|GP |4 |
|No |0 |
|Unanswered |1 |
|base |4 |

All participants said that they had annual reviews that looked at eyes,
feet, blood results, blood pressure, urine tests and a general discussion
about how you are feeling

If not, how long has it been since your last annual review?

|Months | |
|15 |0 |
|1518 |0 |
|1824 |0 |
|24 |0 |
|base |0 |

Flexibility of annual review appointments

Were you given a choice of the timing of your annual review?

|Yes |2 |
|No |2 |
|Unanswered |1 |
|base |4 |

Half those present said that they were given flexibility in the timing of
their review

If for some reason the appointment time or date you were given was
unsuitable, how long were you given to wait for your next visit?

|Months | |
|3
|0 |
|36 |0 |
|612 |0 |
|12 |0 |
|base |0 |

Diabetes Education

Are you aware of a planned programme of education about diabetes in your
area?

|Yes |2 |
|No |3 |
|base |5 |

Almost half the participants were aware of diabetes education programmes in
their area

Has this diabetes programme been offered to you?

|Yes |2 |
|No |3 |
|base |5 |

Have you completed such a programme?

|Yes |1 |
|No |4 |
|base |5 |

If yes

was this education programme delivered to you as part of a group?

|Yes |1 |
|No |0 |
|base |1 |

was this education programme delivered to you as an individual?

|Yes |0 |
|No |1 |
|Base |1 |

How long did the education programme last

|1 day |0 |
|2 days |0 |
|3 days |0 |
|4 days |0 |
|5 days |1 |

Can you give examples of how the course has helped your understanding and
control of diabetes?
Diabetes Information

Would the following type of information be useful for understanding
your
diabetes and its complications?
| | | | |
| |Yes |No |base |
|Diet |5 |0 |5 |
|Tablets |2 |2 |4 |
|Insulin |4 |1 |5 |
|Feet |4 |1 |5 |
|Blood Tests |4 |1 |5 |
|Glucose |4 |1 |5 |
|Eyes |4 |1 |5 |
|Sex |3 |2 |5 |
|Exercise |5 |0 |5 |
|Diabetes for |4 |1 |5 |
|beginners | | | |
|Publications for |1 |2 |3 |
|children | | | |
|Understanding |4 |1 |5 |
|diabetes | | | |
|Hypoglycaemia |4 |0 |4 |
|Weight Management |4 |1 |5 |
|Neuropathy nerves |4 |1 |5 |
|Complications |4 |1 |5 |
|Patient info pack |5 |0 |5 |

Most diabetes information was thought to be useful, particularly
information on blood testing, diet, insulin, feet, glucose, eyes, sex,
exercise, understanding diabetes, hypoglycaemia, weight management,
neuropathy and complications

If you have received this type of information when did you receive
it?

| |At |At |At |Not |Base |
| |diagnosis|annual |another |received | |
| | |review |time | | |
|Diet |3 |0 |2 |0 |5 |
|Tablets |1 |0 |1 |1 |3 |
|Insulin |1 |0 |1 |1 |3 |
|Feet |1 |2 |1 |0 |4 |
|Blood Tests |2 |1 |1 |0 |4 |
|Glucose |1 |0 |1 |1 |3 |
|Eyes |1 |0 |2 |1 |4 |
|Sex |1 |0 |1 |1 |3 |
|Exercise |1 |0 |1 |1 |3 |
|Diabetes for |2 |0 |0 |1 |3 |
|beginners | | | | | |
|Publications for |0 |0 |0 |1 |1 |
|children | | | | | |
|Understanding |2 |0 |0 |1 |3 |
|diabetes | |
| | | |
|Hypoglycaemia |2 |0 |0 |0 |2 |
|Weight Management |1 |0 |1 |0 |2 |
|Neuropathy nerves |1 |0 |1 |1 |3 |
|Complications |1 |0 |1 |1 |3 |
|Patient info pack |1 |0 |1 |1 |3 |
| | | | | | |

Diabetes information, on diet, tablets, insulin, feet and blood glucose
testing were given out at diagnosis and occasionally at other times Very
little information was given out at annual reviews

How relevant was this type of information to your needs?

| |Very |A |Not |Base |
| | |little| | |
|Diet |2 |1 |0 |3 |
|Tablets |1 |0 |0 |1 |
|Insulin |2 |1 |0 |3 |
|Feet |2 |0 |0 |2 |
|Blood Tests |2 |0 |0 |2 |
|Glucose |2 |0 |0 |2 |
|Eyes |2 |0 |0 |2 |
|Sex |2 |0 |0 |2 |
|Exercise |2
|0 |0 |2 |
|Diabetes for |1 |1 |0 |2 |
|beginners | | | | |
|Publications for |1 |0 |1 |2 |
|children | | | | |
|Understanding |1 |0 |0 |1 |
|diabetes | | | | |
|Hypoglycaemia |2 |0 |0 |2 |
|Weight Management |1 |1 |0 |2 |
|Neuropathy nerves |1 |1 |0 |2 |
|Complications |2 |0 |0 |2 |
|Patient info pack |1 |1 |0 |2 |
| | | | | |