DIABETES INTELLIGENCE REPORT

A look into the concerns of over 20,000 people affected by diabetes in the UK.

With Insights from: Bayer • Boehringer Ingelheim • Bristol-Myers Squibb • GlucoRx

JDRF • Johnson & Johnson • NHS • Roche • Sanofi • Spirit Healthcare

20,000 PATIENT VIEWS

12 EXPERT INSIGHTS

5 MINUTES OF FACTS

1/14

Glucose meters & testing image of monitors

• Over 50% had a HbA1c reading of 7.5 or higher.

• Of meter users - 80% of respondents received a

free meter. 20% paid for a meter, of which 70%

bought their meter from a local pharmacy.

• 65% of free meter users were given their meter by a

healthcare professional.

• 17% of free meter users received their meter via a

Diabetes.co.uk promotion.

• 88% of meter users have test strips prescribed by

their local health authority.

• 72% of test strip purchases are made from

pharmacies.

• 48% of diabetics have anxiety about having test

strip prescriptions restricted.

Hypos

• 58% of diabetic respondents have hypos weekly,

monthly or every few months.

• 18% of diabetic respondents have a serious hypo

every few months.

• 64% feel anxiety over having some form of hypo.

Patient Care

• 41% of carers felt they receive adequate

professional and emotional support.

• 60% of carers reported anxiety and worry about

being unable to care for their patient.

• 54% of carers would use a support forum to share

experiences with a carer peer group.

• Online diet logs were the diabetes support

technology favoured by carers.

Respondent overview:

57% FEMALE

89% TAKE MEDICATION TO MANAGE THEIR DIABETES

47 Years oldAVERAGE AGE

83% WHITE/CAUCASIAN

40% of diabetes patients TYPE 1 DIABETES

13% SMOKE OVER 10 CIGARETTES

PER DAY

59% of diabetic respondentsTYPE 2 DIABETES

8/10 RESPONDENTS HAVE DIABETES

“It’s important for patients and their healthcare providers that a range of meters are available so individual

patient requirements can be truly met, for example, the accuracy of a meter is going to be critical for someone

self-adjusting their insulin dosage. Putting patients at the heart of the NHS is everyone's priority. Patients need

access to a range of monitoring devices and strips so informed decisions can be made between the individual

and their healthcare provider”. 1 Ros Barker, Strategic Marketing Manager, Diabetes Care, Bayer

2/14

About Diabetes.co.uk

Diabetes.co.uk is a privately owned website and forum

that provides support and education to people with

diabetes. The Diabetes.co.uk website attracts over

750,000 unique visitors and more than one million total

visitors (40% repeat visits) each month.

Diabetes.co.uk's reach also includes over 135,000

registered members who have opted-in for a twice

weekly e-newsletter, more than 100,000 Likes on the

Diabetes.co.uk Facebook page with extremely high

levels of engagement, over 8,500 followers on Twitter

and 90,000+ forum users.

Diabetes.co.uk has a range of innovations coming to

market, from structured online education, an innovative

type 2 testing subscription service and a new mobile

app called DiabetesPA for diabetics to independently

manage their condition.

For more information and to stay up to date with the

latest news, please visit www.diabetes.co.uk

This report in 30 seconds…

Diabetes.co.uk set out to discover two things:

• What are the most signifi cant challenges for people

affected by diabetes in the United Kingdom?

• How effective is the current education support for

people with diabetes?

Diabetes.co.uk invited people by e-newsletter to

respond to a 52 question survey. Within 4 weeks, over

20,000 people contributed. The highest responded

question was "How much do you worry about

having hypos?". 64% of respondents stated that

the most signifi cant challenge they face is a fear of

hypoglycemia.

In the last year, we also found that 19% of patients

(type 1 and type 2 diabetes) had experienced having

their glucose monitoring supplies either restricted

or refused. For the UK, this restriction is rooted in

vague NICE guidelines, which leave space for different

interpretation by local health providers.

Although guidelines are vague, this research found

successful examples of approaches that have driven

down costs for providers and improved test strip access

for patients.

The NHS, Glasgow and Lewisham Clinical

Commissioning Group’s (CCG’s) are acknowledged as

leaders in creating a restriction free environment. The

pharmaceutical industry is focused on improving access

for patients. For example, Sanofi and Boots increased

access to blood glucose meters and test strips through

a joint working program that reduced test strip prices

for the customer.

The report then highlights the differences in

education and support across Europe, with Germany

being identifi ed as a leader in diabetes structured

education. While some UK programmes may be failing

to gain traction, many of the companies approached

for comments and recommendations suggest that

improved education, joint working and innovative new

products on the market could help to improve health

outcomes and reduce costs.

Enjoy the report...

3/14

Diabetes.co.uk asked people to contribute to a 52

question survey. Within 4 weeks, over 20,000 people

contributed. PatientsCreate took the key insights to

Bayer, Boehringer Ingelheim, Bristol Myers Squibb, GlucoRx,

JDRF, Johnson & Johnson, NHS, Roche, Sanofi and Spirit

Healthcare to get their views.

64% of respondents fear having a hypo.

This fear may contribute to respondents deliberately

running high sugar levels whilst at work, driving and

taking part in sport. Learning how to monitor these

sugar levels can sometimes mean more frequent

testing.

One of the most alarming survey fi ndings is that 19%

of patients with type 1 and type 2 diabetes had, in the

last year, experienced having their glucose monitoring

supplies either restricted or refused!

Furthermore, 48% of all respondents stated moderate

or strong anxiety regarding restricted or reduced

access to test strips.

Kris Wood, 27: “I have taken part in various type

1 clinical trials, which has meant I've received a

higher level of care than most people, from 24 hour

phone access to a consultant in the 12 months fol-

lowing my diagnosis, which was really impressive!

My Diabetes Specialist Nurse tends to change a lot

but they are usually really helpful. My current DSN

recommended me the latest glucose meter, which

I’m glad to have. I’ve seen fi rst-hand a variation in

the quality of care that you receive depending on

where you are in the UK. When I lived in Newcastle,

there were never any problems collecting medicine

and test strips from my pharmacist. Since mov-

ing to London, there’s always a delay or something

missing in my prescription when I try to pick it up”.

Theodore Eversole, 66: “I am very active, I work

full time, and I drive every day. I’ve had diabetes

for over ten years and I’m very passionate about

the self-management of my diabetes. I have often

taken part in various trials. I have a good relation-

ship with my GP who told me that testing 3–4 times

per week is suffi cient. However, I am worried that a

restriction in my test strips could affect my ability

to self-manage my condition and to remain active”.

Patient stories

4/14

The annual cost of blood glucose test strips for the

NHS stands at £150 million, representing 1.1% of

the total spend on diabetes and its complications. 5

Unfortunately, in an increasing number of incidences,

short-term fi nancial savings by local decision makers

are threatening self-management of diabetes. For

example, restrictions regarding access to blood glucose

test strips or inconsistent formulary processes/

decisions surrounding the type of blood glucose meter

made available to patients.

As Angela Magny, Public Affairs Manager, Roche Diabetes

Care pointed out that a key element of the variation in

strip restriction is the adoption of local formularies

by CCGs for blood glucose monitoring. Although NICE

published guidelines on the development of local

formulary guidelines in December 2012, they failed to

adequately cover medical technology, including the

products used to self-test blood glucose.

Examples have been found from Greater Glasgow and

Clyde SIGN guidelines that state in bold headlines:

“This is a guideline for what is minimally acceptable

clinically. If a patient, no matter the treatment group,

wishes to monitor more frequently they should be

supported to do so (within reason)”. Lewisham CCG has

recently written to all GP’s stressing, “It is essential that

supplies of blood glucose testing strips for people with

type 1 diabetes are NOT RESTRICTED”. 6

Although there is no standard policy in place, and NICE

guidelines are open to interpretation, positive examples

of policy at a local level is a step in the right direction.

With access to test strips causing concern for

patients in the UK, is the NHS to blame?

The charity Diabetes UK illustrated that there are few

examples of NHS policies, which make it clear that people

with type 1 diabetes should be prescribed suffi cient

testing strips for their clinical needs as specifi ed by the

Department of Health letter 2 earlier this year and in line

with Diabetes UK’s position statement. 3

Over the last two decades it has been fi rmly

established that tight glycemic control is associated

with a signifi cant reduction in serious long-term

diabetes related complications. Self-monitoring of

blood glucose (SMBG) is an effective tool in the self-

management of glucose levels in people with type 1

diabetes and people with type 2 diabetes using insulin

therapy. It helps people with diabetes using insulin

achieve tight glycemic control and to identify low

blood glucose levels before the development of severe

hypoglycaemia and the need for medical attention. 4

Diabetes.co.uk's survey suggests that self-monitoring

of blood glucose levels should be regarded as an

integral part of treatment for everyone with type 1

diabetes, and access to blood glucose testing strips

and meters should not be restricted.

So the argument falls back to money?

5/14

What about patients taking full control?

20% of respondents said that they had bought a second

blood glucose monitor (BGM) because the device

provided by their Health Care Professional (HCP) does

not have all the features they would like. The device

provided by the HCP will be their primary device,

providing free access to test strips but they may then

buy a more advanced machine for themselves, which

offers additional analysis and wrap around services.

Jason Lovatt, Brand Lead, Sanofi explained how

“Patients could get additional value from combining

smartphone technology and Blood Glucose Monitoring..

For example, new products leverage smart phone

technology to display and help interpret the trends in

blood glucose levels. This means that the patient can

start to predict trends in order to manage their own

care”. This holds a lot of potential for patients and

HCPs.

Chris Barker, Managing Director, Spirit Healthcare argues

that ultimately monitoring and control should be in

the hands of the patient. He said “things like personal

health budgets could be really useful as it would help

people take more ownership of their condition”.

Is this a UK or European problem?

While the Diabetes.co.uk survey focused on patients

within the UK, we can learn from a broader analysis by

the London School of Economics into Germany, France,

Italy, Spain and the UK.

Estimated diabetic population in each country.7

Total cost of diabetes care in each country.6

Although the data6 shows that Germany has the

highest population and spending on diabetes, it

doesn’t show how “German researchers lead the way

in developing and implementing successful structured

insulin training programmes for both adults and

children with type 1 diabetes. For example, training

has been delivered both within the in-patient settings

immediately after diagnosis, as well as to those who

have had the condition for some time”. (JDRF’s Type 1

Diabetes Research Roadmap).

Thomas Sargant, Territory Account Specialist, Bristol-Myers

Squibb explained how he has seen fi rst-hand that there

are more examples “outside of the UK that focus on

education as a tool of prevention more than simply

medication”. The question then is who should fi x this

problem within the UK, and…

0

1000000

2000000

3000000

4000000

5000000

6000000

7000000

8000000

UK

SPAIN

ITALY

GERMANY

FRANCE

DIABETES POPULATION

0

10000

20000

30000

40000

50000

COST PER CAPITA

UK

SPAIN

ITALY

GERMANY

FRANCE

6/14

So what does the future hold?

The NHS believes in patient self-monitoring. John

Cartwright, Urgent Care Lead, Barnsley Hospital NHS

Foundation explains there is a strong push to “educate

and empower patients to self-manage and access

services in their community, with the aim to improve

the outcome for the patient”. A second but equally

high priority is ensuring that “we manage the diabetes

clinical pathways to reduce the number of unnecessary

visits to the emergency department”. Cartwright, in this

instance, looks to the Trusts to increase support and

education to make this a reality.

Can drug and device companies help?

Jason Lovatt, Brand Lead, Sanofi recommends that the

NHS pursue joint working projects with pharmaceutical

companies. “We are perfectly placed to provide the

necessary education to improve knowledge, blood

glucose control, weight and dietary management,

physical activity and psychological well-being etc.”

A great example is how Roche was the fi rst company to

enter into partnership with a retail pharmacy to stock

blood glucose strips on shelf for customers to buy. This

helped patients who face restrictions or who want to

monitor their blood glucose more closely.

Dr. Partha Kar, Clinical Director, Diabetes & Endocrinology,

Portsmouth Hospitals NHS Trust shared his view that “pharma

are looking for new and novel ways to engage patients,

it makes sense to work together to help improve patient

outcomes”.

Johnson & Johnson gives a valuable example of this in

action; they sponsor workshops around the country

for the top HCP leaders so they can focus on better

patient motivation and positive reinforcement. Martin

Lambert, Johnson & Johnson, Senior Marketing Manager UK

& Ireland states that the focus is “to ensure specialists

are aware of the latest research and innovations coming

to market”. Joint working projects make the most sense

for all stakeholders. Sanofi and Boots provide a great

example of this:

...Are the UK and the NHS playing catch up to the great work in Germany?

Chris Barker, Managing Director, Spirit Healthcare explained

how they have piloted free structured educational

courses in the UK. These courses include sessions on

diet, exercise and insulin/drug management, as well

as the use of blood glucose meters. We have had very

positive feedback, however there is a large cohort of

patients with diabetes who are a challenge to engage

with and it is not uncommon for patients to decline

educational courses; so much so that some clinicians

question why they are commissioned in the fi rst place.

In contrast to Germany, where the patients have to pay

for a similar course, attendance rates are much higher.

This could be because people place more value on things

they actually pay for, or because the German structured

educational approach is facilitated by a healthcare

insurance system whose reimbursement to local

healthcare providers depends upon quality skills training

for people with diabetes, their families and carers.

Angela Magny, Public Affairs Manager, Roche Diabetes

Care points out that “one area of diabetes care which

is comparable across Europe is the uptake of diabetes

pumps. Numerous audits have found pump uptake in

the UK is one of the lowest in Europe, with the lack of

access to structured education a signifi cant barrier.

NICE guidelines stipulate that structured education

needs to be a recognised course by the NHS. A lack of

clinical ambition and poor fi nancial incentives have also

been identifi ed as barriers”.

7/14

Case study

Sanofi and Boots created a strong partnership to improve

outcomes and access for patients. Over the Counter (OTC)

sales were supported by both companies offering price

reductions to bring down the cost to consumer.

OTC sales are normally marked up by pharmacies

because they are not getting the dispensing

compensation from the government. This provides a

solid example of key players outside of the NHS taking

the initiative to improve outcomes.

But it doesn’t have to be large partnerships in

order to be successful:

Chris Chapman, National Sales Manager, GlucoRx explained

how they decided to launch a cost effective product

to improve access by setting a lower price point: “We

were the fi rst company to launch a blood glucose meter

and test strips under £10. This reduced price point has

produced savings for the NHS”.

“Pharma are looking for new and novel ways to engage patients, it makes sense to work with the NHS to help improve patient outcomes”However, other industry experts have argued that a

reduction in price may not be the best option for all

patients. Some cheaper products may not have the

same functionality or reliability as some of the more

expensive options.

What about future innovations?

The market could be set to change again in the coming

years. We have identifi ed that the reduced cost of test

strips is a big help to the purchaser and patients alike.

However, not everyone is happy and there is currently a

debate as to the future of the low-cost test strip.

New devices offering additional value might well prove a

most signifi cant game changer for patients, particularly

if that value offers the ability to change behaviour in the

monitoring of blood glucose levels.

This might help reduce the risk of developing

complications and severe co-morbidities.

James Gilpin, 28 “I am very active working full time

and cycling to work daily, which is a 19km round

trip. I have been told by my GP that in order to

receive access to the required number of test strips

needed, I should consider changing my BGM and

start using a cheaper alternative. I was happy to

do this, but I have still found that my doctor makes

it hard for me to access test strips by limiting the

amount I can take away at any one time”.

5.7

8/14

For example, some monitors make it possible to estimate

HbA1c readings. This means patients can check progress

regularly and get feedback, which is more than just a

snapshot of blood glucose results. Other innovations

include the ability to take blood glucose readings with a

mobile device. This has the potential to lead to service-

based systems for patients and HCPs alike.

Other innovations include monitors looking to support

different types of patients. For example, some devices

allow the more engaged patient to make adjustments

based on his or her routine. The devices look for patterns

in blood glucose and compare highs and lows over a fi ve

day window so they can effi ciently fi nd relevant patterns.

For example, if a patient experiences a hypo at a similar

time of day, the device can start to highlight the triggers

such as gym exercise, certain foods or incorrect insulin

dosage. That information prompts the patient to do

something differently. Previously, the HCP would do this

analysis and provide the recommendation.

But not all innovations need to be about devices:

sometimes it’s just about looking at the problem from

a different angle. The case study below isn’t related

to diabetes research but offers a great example of

engaging a community from the bottom up.

Pfi zer wanted to educate more women about the

risks of coronary heart disease. They turned to a

familiar presence: their hairdressers! Their local

research ‘confi rmed that hard-to-reach populations

want health messages brought to them in their

communities,’ so they came up with an innovative

method to achieve this with hairdressers.

Top line – their research showed that salons were a

place where their identifi ed population was spending

time. Knowing this, they trained up hairdressers,

used appointment cards, stickers on mirrors etc.

Hannah Gagen | Patient Engagement & Ext. Affairs

Manager | IBIF | Boehringer Ingelheim Ltd

Conclusion and recommendations

• This paper aimed to hit home simple messages

drawn directly from patients and experts.

• The NHS and partner agencies will need to develop,

review and audit programmes to support and

empower people with diabetes, which include:

• Behavioural change programmes.

• Structured education programmes that don’t

require people to take long periods of time off

work.

• The provision of consistent information for the

better management of diabetes.

• Effective care plans placing an emphasis on

the ongoing discussions between practitioners,

professionals and patients.

• Patient-held accessible records.

• The use of new technologies, including the

Internet.

9/14

Survey methodology

The Diabetes.co.uk 2013 survey set out to build up a

detailed profi le of people with diabetes in the UK. The

survey was opened out to all age groups and those

who had fi rst-hand experience with people who have

diabetes, e.g. parents and carers. With 52 questions

covering a variety of diabetes topics, and over 20,000

responses, the survey presents one of the largest

studies to date.

Survey structure

The Diabetes.co.uk survey features 52 questions

covering profi ling questions focusing on demographic

data of the consumer (date of birth, ag e, gender,

residency and ethnicity), diabetes profi ling (type, regime

etc.), blood testing, glucose meter usage, hypos and

patient care.

Survey delivery

The Diabetes.co.uk 2013 survey was launched via

Diabetes.co.uk’s bi-weekly email newsletter and social

media channels.

Survey results

The survey was completed by 20,000 unique

respondents within the fi rst four weeks of being

launched and offers a wealth of data about patients

with diabetes.

The results presented in this report are based on the

initial 20,000 respondents and provide a summary of

fi ndings, survey questions and responses, in addition

to examples of opportunities for undertaking a deeper

analysis of survey results, including the breakdown

of prescriptions between type 1 and type 2 diabetic

patients.

The following appendix includes data obtained from

the study.

REFERENCES

INTERVIEWS

1. https://www.gov.uk/government/uploads/system/uploads/attachment_data/fi le/214943/Safe-care-of-people-with-type-1-diabetes.pdf (Government Letter) 4th Feb 2013

2. Diabetes UK position statement on access to test strips for patients with type 1 diabetes http://www.diabetes.org.uk/upload/Position%20statements/SMBGType1positionstatement.pdf

3. Cardiovascular - type 2 diabetes. Data focused commentary: Type 2 diabetes: Self-monitoring blood glucose. National Prescribing Centre (2012)

4. Self-monitoring of blood glucose levels for adults with Type 2 diabetes, April 2013, Diabetes UK

5. NICE. Type 1 diabetes: diagnosis and management of type 1 diabetes in adults. Clinical guideline 15.

6. Kanavos, P., Van Den Aardweg, S. and Schurer, W. 2012. Diabetes expenditure, burden of disease and management in 5 EU countries. London School of Economics Health.

Miles Baker, Senior Diabetes Specialist, AstraZeneca

John Cartwright, Urgent Care Lead, Barnsley Hospital NHS Foundation

Hannah Gagen, Patient Engagement & External Affairs Manager, Boehringer Ingelheim Ltd.

Thomas Sargant, Territory Account Specialist, Bristol-Myers Squibb

Robert T. Kocembo, OD, CDE, FCOVD, Board Certifi ed Diabetes Educator, Diplomate of the American Board of Optometry

Chris Chapman, National Sales Manager, GlucoRx

Michael Connellan, Senior Media Manager, JDRF

Martin Lambert, Senior Marketing Manager UK & Ireland, Johnson & Johnson

Partha Kar, Clinical Director, Diabetes & Endocrinology, Portsmouth Hospitals NHS Trust

Angela Magny, Public Affairs Manager, Roche Diabetes Care

Jason Lovatt, Brand Lead, Blood Glucose Monitoring, Sanofi

Chris Barker, Managing Director, Spirit Healthcare Ltd.

Further information

For more information about the Diabetes.co.uk 2013

survey or to discuss new survey opportunities tailored to

your needs, please contact Diabetes.co.uk

Tel: 024 76 712 201

Email: info@diabetes.co.uk

10/14

APPENDIXFear of hypos.

Incretin mimetics (Byetta, Victoza, Bydureon)PumpInjectionsTabletsI don't take medication for my DiabetesWHICH MEDICATIONS DO YOU TAKE SPECIFICALLY FOR YOUR DIABETES?

Type 1 (35 Didn’t take medication) Type 26150 Injections 8584 Tablets

52 Incertin765 Tablets1134 Pump 1175 didn’t take medication1059 Incretin2828 Injections

HOW OFTEN DO YOU TEND TO GET HYPOS (UNDER 4MMOL)?

Type 1 Type 2

0 1000 2000 3000 4000 5000 6000

Never

Once a year

Once every few months

Monthly

At least once a week

Every few days

Daily

0 500 1000 1500 2000 2500

HOW OFTEN DO YOU TEND TO HAVE A SERIOUS HYPO?

Type 1 Type 2

0 500 1000 1500 2000 2500

Never

Less than once a year

Once a year

Every few months

Monthly

Weekly

0 500 1000 1500 2000 2500

HOW MUCH DO YOU WORRY ABOUT HAVING HYPOS?

Type 1 Type 2

Strong anxiety

Some anxiety

Not at all46%

46%

8%

55%

22%23%

11/14

DO YOU INTENTIONALLY RUN YOUR BLODD SUGAR LEVELS HIGH FOR ANY OF THE FOLLOWING ACTIVITIES?

Type 1 Type 2

Other

Sleeping

Shopping

Sport/ Exercise

Driving

0 500 1000 1500 2000 2500 0 100 200 300 400 500 600 700 800

DID YOU BUY THE METER OR DID YOU RECEIVE IT FREE?

0

20

40

60

80

100

I received it free

I bought it

Blood Glucose Monitors

HOW MANY BLOOD GLUCOSE METERS DO YOU REGULARLY USE?

Three or more

Two

One

76.4%21.3%

2.3%

12/14

IF YOU HAD TO BUY YOUR OWN METER, WHERE DID YOU MAKE THE PURCHASE ?

0 500 1000 1500 2000 2500

Other

Other online shop

Diabetes.co.uk shop

Directly from the manufacturer

High street pharmacy

WHICH METER WERE YOU GIVEN BY YOUR HCP?

Glucemen

DiagnoSys True Track

Bayer

Accu-Check

Abbott

True Track Smart System

Sanofi iBG Star

Other

Medisense Optium

Lifescan

Un-answered / Blank 17528

0

200

400

600

800

1000

APPENDIX

Blood glucose monitors

HOW DID YOU GET THE FREE METER?

13/14

APPENDIX

Access to test strips

Type 1 Type 2

0 200 400 600 800 1000 12000 100 200 300 400 500 600 700 800

More than 6 months ago

In the last 6 months

In the last month

In the last week

HOW MUCH DO YOU WORRY ABOUT HAVING YOUR ACCESS TO TEST STRIPS RESTRICTED?

HOW RECENTLY WAS THIS?

HAVE YOU EVER HAD YOUR PRESCRIPTION FOR BLOOD TESTING SUPPLIES REDUCED,DENIED OR WITHDRAWN BY YOUR HEALTH CARE TEAM?

14/14

APPENDIX

Medication and related complications

0 2000 4000 6000 8000 10000Phosphodiesterase-5 (medication for sexual dysfunction)

Anti-inflammatory

Painkillers

Ace inhibitors

Sleeping tablets

Anti-anxiety medication

Anti-depressants

Beta-blockers

Statins

* Multiple answers were provided by the majority of respondents

WHICH MEDICATIONS DO YOU TAKE SPECIFICALLY FOR YOUR DIABETES?*

DO YOU REGULARLY TAKE ANY OF THE FOLLOWING MEDICATIONS?

DO YOU HAVE ANY OF THE FOLLOWING DIABETES RELATED COMPLICATIONS?

0 200 400 600 800 1000 1200 0 500 1000 1500 2000 2500

Type 1 Type 2

Charcot foot

Foot ulcers

Foot or lower leg amputations

Heart disease

Nephropathy (Kidney disease)

Neuropathy (Nerve damage)

Retinopathy (Retinal damage)

Sexual dysfunction

Stroke