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Diabetes UK survey of people with diabetes

and access to healthcare services 2009

AimThe mission of Diabetes UK is to improve the lives of people living with diabetes. One of the organisationskey aims is to improve diabetes services, and track progress towards meeting the national frameworkstandards for diabetes. This survey supports this aim by finding out what services people with diabetes haveaccessed in the last 12 months.

MethodA paper questionnaire was sent to 156,038 adult members of Diabetes UK in April 2009. Separatequestionnaires were sent to adults aged 18 and over (150,577) and children and young people aged 0-17years (5,461). Questionnaires were collected until July 2009. They were scanned and then analysed using astatistical package for social statistics (SPSS).

11% adults responded (15,885) 12% children and young people responded (661)

Part 1 presents findings from the adults and Part 2 for the children and young people. Where comparisonsare available, we have provided the results from the 2006 survey to demonstrate progress over time.

Note: The base numbers refer to the number of people who gave a response to that particular question.

Results

Part 1 adultsEarly identification (base:1737)Key ask: Defuse the diabetes time bomb and identify diabetes early.

Thousands of people are living in the UK with undiagnosed diabetes. The longer they are unaware of theircondition, the more likely it is that they will have to cope with serious complications [1]. Increasing rates ofobesity are contributing to the growing numbers of people with Type 2 diabetes and it is estimated that by2025 there will be 4 million people living with diabetes in the UK [2].

What the survey askedWe asked members, who were diagnosed in the last 12 months, how they were diagnosed with havingdiabetes. The results are shown in the table on the following page.


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50

40

30

20

10

0

Awareness of diabetes symptoms before diagnosed

Highlyaware

14

P

ercentageofrespondents

2009% 2006%(base:1737) (base:1458)

From a test because of some other condition or problem 37 41

Through a routine test offered by GP or practice nurse 18 23

Other 18 9

Going to the doctor with symptoms of diabetes or asking for a test 16 23

Following an eye test 6 2

Following a medical 5 2

Over half of those who were diagnosed in the last 12 months had little awareness or were completelyunaware of the symptoms of diabetes before they were diagnosed as shown below:

Emotional and psychological supportKey Ask: All people with diabetes should have access to appropriate emotional and psychological supportto effectively self-manage their condition to achieve well being.

Living with diabetes is a long-term challenge that puts considerable pressure on the individual, theirfamilies and carers. People need support to help manage their condition. This could range from talking

to others about living with the condition to gaining specialist support in dealing with emotional issuessuch as anxiety, depression and the effects of stress and illness on relationships [1].

People with diabetes may have emotional or psychological support needs resulting from living withdiabetes or for other reasons. Coming to terms with the diagnosis, the development of a complication,the side effects of medication, or dealing with the daily responsibility of self-managing diabetes can taketheir toll on emotional well being. In some cases this can lead to depression, anxiety, eating disorders orphobias. Poor emotional well being can impact on both quality of life and a persons ability to selfmanage their diabetes.

What the survey found

In the last 12 months, 42% of members surveyed said they would have liked to talk to someone abouthow they were feeling to help them cope with having diabetes (base:12,414).

Aware

12

Neither awareor not aware

19

Unaware

16

Veryunaware

40


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Of those that wanted emotional support, the majority wanted to talk to a healthcare professional as wellas family and friends: 87% a healthcare professional 12% family 10% friends 9% support group 2% other

Of those who wanted to speak to a healthcare professional, 74% were able to do so (base:3325).

Education for self-careKey ask: All people with diabetes should have access to appropriate structured and ongoing educationto effectively self-manage their condition.

Self-care is the cornerstone of diabetes care. When it comes to managing the condition, it is estimatedthat about 95% is done by the individual with diabetes. However many people do not know enoughabout the key elements of diabetes to help them manage their own condition, and educationprogrammes can help people to feel more in control of their diabetes. Structured education is a key wayof supporting self-care and should be tailored to their individual needs [1].

What the survey askedWe asked those surveyed in 2009, whether they had attended a course to help them manage theirdiabetes in the last 12 months. 36% said they had attended a course to help them manage theirdiabetes since they were diagnosed (base:14,263). Of those that hadnt, 39% said that they would like toattend a course to learn more about how to manage their diabetes (base:8574); this was compared to29% in 2006. In 2006 only 10% had attended a course in the previous 12 months.

Treatment and careKey Ask: People with diabetes and their carers must be supported to self manage, by having access to atleast an annual review.

It is essential that people with diabetes monitor their health to prevent some of the complicationsassociated with diabetes. This involves testing blood glucose, blood pressure and blood fat levels as wellas having foot examinations and eye screening for retinopathy.

What the survey foundIn the last 12 months, the respondents have received the following tests:

100

80

Tests and investigations

Bloodpressure

99

Percentageofrespondents

HbA1c

97

Cholesterol

96

Eye test witha digital

camera

95

Bare feetexamined

92

Urine testfor protein

87


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Planning your careKey ask: People with diabetes and their carers must be supported to self-manage their diabetes. Theyshould have access to at least an annual review and be actively involved in planning their own Year ofCare, reflecting their personal needs and priorities.

Care planning is a process that allows people with diabetes to have active involvement in deciding,agreeing and planning how their diabetes is managed. It gives people with diabetes the chance to share

information with the healthcare team about issues and concerns, their experience of living with diabetesand to get help with accessing the services and support they need. They then jointly agree the priorities,goals and actions to take in response to the needs identified.

What the survey found60%, of members surveyed, said that they had discussed their goals in managing their diabetes in thelast 12 months (base:13,882). Only 39% were given their test results before their diabetes check up(base:13,986).

Access to specialist servicesKey Ask: People with diabetes need the support of specialists at the right time to deliver care.

Diabetes is a complex condition which requires the support of a wide range of healthcare professionalswith different skills and approaches and who are located in a wide range of settings such as primary,community, secondary and social care.

What the survey askedWe asked how they felt about the current level of contact with healthcare professionals they received andif it was right for them. One third of respondents felt that they would like more contact with theirdietitian, and one fifth said they would like more contact with their diabetes specialist nurse. The overallresults are shown in the table below:

100

80

60

40

20

0

Tests and investigations

Diabetesspecialist

nurse


03

77

20

I would like more contact

About right

I would like less contact

Dont know

Footspecialist

1

9

65

26

Diabetesdoctor

17

70

23

Psychologicalsupport

2

41

34

23

Eyespecialist

04

87

9

Dietitian

2

15

51

32


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Stays in hospitalKey Ask: General ward staff must have regular training and assistance from the diabetes specialist team tosupport them in caring for people with diabetes as inpatients. This will help make sure that medication andmeal times are appropriately co-ordinated, and that diabetes-related emergencies are effectively handled.

For a long time there have been issues surrounding inpatient care for people with diabetes such asdisempowerment, distress, a lack of staff knowledge (particularly in the management of acute diabetescomplications), issues with food, meal-times and medication timing, mismanagement of medicines, and a lackof available information. It is vital that these issues are addressed to make sure that people with diabetes receivehigh quality care.

People with diabetes have reported feeling disempowered. Their right to control and manage their conditionwas taken away in spite of the fact that, often, they have the most knowledge about managing their diabetes(including managing incidences of hypo and hyperglycaemia). Their diabetes control has deteriorated and theyhave felt fear and worry as a result of their inpatient care.

What the survey found17.5%, of members surveyed, had stayed overnight in hospital in the last 12 months (base:13911).

Members reported that there are still issues regarding their medication; one in 10 people were not able to taketheir medication in the way that they would have preferred to (see table below).

100

80

60

40

20

0

Access to telephone support

Yes in theevenings

11

Percentageofresponden

ts

Yes atnight

8

Yes atweekends

9

Dontknow

3

Few members surveyed had the phone number of a doctor or nurse that they could contact about theirdiabetes out of hours (during weekends and after 6pm on week nights). See the chart below for details:

No contactnumber

85

100

80

60

40

20

0

During your most recent stay in hospital overnight, how often were you ableto take your diabetes medication in the way you wanted to?

Always oralmost always

Perc

entageofrespondents

Sometimes

12

Rarely or never

11

I was too ill or did not want totake my own diabetes medication

5

73


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One third of respondents rarely or only sometimes received meals at suitable times for their diabetes(see table below).

One third of respondents reported that the choice of food was either rarely or only sometimes suitablefor their diabetes (see table below).

User involvementKey ask: Effective diabetes networks, and their equivalents, must be established to help facilitate highquality care. They must have patient and public involvement and representation so that people withdiabetes have a stronger voice in determining how services are structured and more patient-centred.

People living with diabetes have valuable insights into how services can be improved to deliver bettercare. User involvement activity should aim to ensure that decisions about the commissioning, design,running, monitoring and evaluation of diabetes services include the views of people living with diabetes.

100

80

60

40

20

0

During your most recent stay in hospital overnight, how often was thetiming of meals suitable for your diabetes?



Sometimes Rarely ornever

15

Did not eathospital food

2

56

Dont know

2

25

100

80

60

40

20

0

During your most recent stay in hospital overnight, how often was thechoice of food suitable for your diabetes?



Sometimes Rarely ornever

14

Did not eathospital food

3

61

Dont know

1

22


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What the survey foundOnly 6%, of members surveyed (base:14388), have ever been involved in decisions about how diabetesservices should be organised. Of those who said No or Dont know, 21% would like to be involved(base:12211).

Improving diabetes servicesThis table shows what respondents say would most improve their diabetes services (base:13276):

%

1 24 hour telephone helpline for diabetes 37

2 I would like to see the same doctor each time 33

3 Improve access to information about my own diabetes 23

4 Improve access to education courses about diabetes 22

5 Improve the knowledge of hospital staff (not the diabetes team) when in hospital 22

6 Reduce waiting time between diabetes check ups 21

7 Better access to advice/appointments about my diet 21

8 Better communication and liaison between primary and specialist services 18

9 Improve access to emotional and psychological support 16

10 Improve access to information about local services 15

11 Reduce waiting time for foot screening 14

12 Reduce waiting time for eye screening 13

13 Improve access to blood glucose testing strips 10

14 Reduce cancellation of appointments 10

15 Having my annual diabetes check up in one location 8

16 Reduce waiting time for kidney screening 8

17 Improve access to insulin pumps 7

18 Having my diabetes check up nearer home 5

In 2006, the top five improvements were:1. see the same doctor each time2. more podiatry care3. improve information4. improve access to dietary advice5. regular appointments for care.

DiscriminationKey Ask: Currently around 800,000 people in the UK are on insulin, all of whom are likely to experienceunfair and unnecessary discrimination throughout their lives many in ways that affect their livelihoodand quality of life.

What the survey askedThe members surveyed were asked if they had experienced any discrimination in various settings. Thesurvey found:2% have experienced discrimination in an educational institution (base:12026)7% have experienced discrimination in the workplace (base:11639)

4% have experienced discrimination in social activities (base:12454)8% other (base:10419).

9% were concerned that others knowing about their diabetes may affect their future career plans(base:12260).


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Part 2 Children and young peopleThis part of the report will give the findings from the survey of children and young people aged 0-17.

Most children and young people with diabetes have Type 1 diabetes. The management of diabetes forchildren and young people is more complex and different from adults. Better management and controlwill help reduce and delay the development and impact of long-term complications. It will also result ingreater satisfaction with services, improve school performance and reduce hospital admissions [3].

Learning more about diabetes

What the survey asked:

Children and young people were asked if they were able to find out up-to-date information aboutdiabetes when they wanted to, if they had attended a course and how involved they had been inplanning their diabetes care.

79% of children and young people were able to find out up-to-date information about diabetes whenthey wanted to, 15% didnt know and 6% said no (base:656).

26% (base:649) have been on a course to learn about managing their diabetes, 73% said they hadntand 2% didnt know (in 2006, 11% had been on an education or training course).

In the last 12 months, children and young people described the extent to which they had been able totalk about their goals in caring for their diabetes at their check ups: (base:654) 20% - rarely or not at all 41% - some of the time 39% - almost always

Talking about how you feel

What the survey asked:We asked if children and young people had wanted to talk to someone in the last year, for example, ifthey had felt upset or not able to cope with their diabetes. We asked them who they had wanted totalk to and if they had wanted to talk to a healthcare professional, had they been able to do so.

50% (base:653) said that in the last year, they had felt like talking to someone when feeling upset or notable to cope with their diabetes. (In 2006, 66% said they had received emotional support. 57% receivedthis help from family and friends, 50% from their childrens nurse, and 29% from their childrens doctor.)

Most children and young people surveyed wanted to talk to family members about how they werefeeling as the results below show: (base:324) 64% family

35% doctor, nurse or other professional 27% friends 8% support group 7% other

83% of children and young people were able to talk to a doctor if they wished (base:109).

Access to specialist servicesKey ask: All children and young people should have the right to receive the vital checks required forgood diabetes management; currently only 2.6% do so (National Diabetes Audit, 2007-8).

What the survey asked:We asked children and young people which healthcare professionals they had seen when they attendedtheir diabetes clinic, if they had access to support and advice outside of their clinic appointments and, forthose aged 12 and over, if they had received an eye test for retinopathy.


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The table below shows how often children and young people were able to see the following healthcareprofessionals when they attended their diabetes clinic:

Always % Sometimes % Never % 2006 %

Diabetes doctor (base=656) 79 21 0.5 84

Diabetes nurse (base=656) 72 28 0.8 75Dietitian (base=650) 16 67 17 62

Psychologist (base=611) 0.5 12 87 6

85% (base:657) felt able to talk to any member of their diabetes team for advice and support outside oftheir appointments, 6% were not able to and 9% didnt know. (95% felt able to talk to any member ofthier diabetes team in 2006.)

86% (base:373) of those aged 12 years or older, had had an eye test, during which a photograph of theback of their eye was taken in the last 12 months. (In 2006, 74% had had an eye test, and 79% of thosehad been screened with a digital camera.)

Improving diabetes servicesThis table shows what children and young people say would most improve their diabetes services(base:615):

%

1 Improve communication between specialist diabetes teamand schools to help manage diabetes better 56

2 I would like to see the same doctor each time 30

3 Improve access to courses on diabetes 31

4 Improve access to insulin pumps 29

5 General hospital staff need to know more about diabetes (not the diabetes team) 27

6 Better communication between GP and specialist services 22

7 Reduce waiting times between diabetes check ups 21

8 Improve access to dietary advice/ appointments 17

9 Being able to talk to a doctor, nurse or other professional to help me cope with my diabetes 16

10 Improve access to information about local services 12

11 Better access to a children's diabetes nurse 12

12 Better access to blood glucose testing strips 7

13 Fewer cancelled appointments 7

The improvements children and young people would most like to make are the same as the results in2006. Improved access to pumps and seeing the same doctor every time are still in the top five. In 2006,the top five were as follows:1. Improve communication between schools and specialist diabetes teams.2. Reduce waiting times in clinics.3. Improve access to insulin pumps.

4. More emotional support.5. See the same doctor each time.


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Transfer from childrens to adult servicesKey ask: The transition between paediatric and adult services should take place at the appropriate time.It should be negotiated with each individual young person and planned around their needs.

What the survey found:40 respondents have been transferred to adult services in the last 12 months. We wanted to find out

how those children and young people found their transfer. See the table below for the results (base:40):

Description of transfer Strongly Agree Neither agree Disagree Stronglyagree % % or disagree % % disagree %

I felt that transfer was the rightmove for me at the time 35 40 8 10 8

I was familiar with the adultstaff before I transferred 33 23 8 25 13

I knew enough about how to

manage my diabetes beforeI transferred 45 33 10 10 3

I knew enough about thepracticalities of the transferbeforehand (eg where to gofor my appointments, who Iwas going to see and howto make appointments) 41 31 10 8 10

In 2006, 60% said the transfer was at an appropriate age, 57% said it was planned and explained, and37% said that specialist staff were available during the transfer, for both children and adults.

Where do children and young people receive their care after transfer? 95% of those transferred receive their care at the hospital, 2.5% at the GP surgery and 2.5% in a

different location (base:40)

Managing diabetes at schoolKey ask: Children and young people with diabetes must be supported to manage their diabetes atschool. No child should be excluded from any aspect of school life including extra-curricular activities.

Schools must ensure children with diabetes have a safe environment and have access to medication andhealth monitoring in school. They should have trained staff to deal with emergencies, to assist with oradminister insulin injections and blood glucose tests if the children are not able to do those things forthemselves. Children must also have access to food and hydration as required.

What the survey asked:We asked children and young people about their experiences of managing their diabetes at school. Aswell as overall, we analysed the results separately by school age to see if there were differences betweenprimary schools and secondary schools. The children and young people were grouped into primaryschool age (4 to 10 years) and secondary school/college age (11 to 17 years). There were 206 primaryschool aged children and 448 secondary school aged children and young people who responded.

The results are shown on the following page.


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Do you need help with blood glucose testing?50% of primary school children and young people said yes and 5% of secondary school children andyoung people said they need help.

Who gives you the help you need? (base all ages:128) 53% someone at school 42% parent

2% friend 2% relative 0.7% other

By age group:

Primary school age (base:101) % Secondary school age (base:21) %

64 someone at school helps me 67 parent helps me

39 parent 24 someone at school

3 relative 5 friend

2 friend 5 other

Do you need help with insulin injections?68% of primary school children and young people and 12% of secondary school children and youngpeople said yes.

Who gives you the help you need? (base all ages:194) 66% parent 29% someone at school

3% relative 1% friend 0.5% other

By age group

Primary school age (base:133) % Secondary school age (base:55) %

63 parent helps me 89 parent helps me

39 someone at school 13 someone at school

5 relative 2 friend

2 friend 2 other

Does anyone at school give you help or support if you have a hypo? 91% - primary school children said yes (base:202) 65% - secondary school children and young people said yes (base:443)

Do you think school staff have had enough training in diabetes? 35% - primary school children said yes (base:202)

13% - secondary school children and young people said yes (base:446)


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Is there a back up person at school to help you when your regular carer is away?

Yes % No % Not applicable %

Primary school age (base:202) 68 22 10

Secondary school age (base:440) 32 30 38

Has either of your parents had to give up work or reduce their work hours because ofyour diabetes? 35% of all children and young people said yes (base:632)

By age group: 46% of primary school children (base:193) 29% of secondary school children and young people (base:432)

Is there a private area where you can do your blood tests and injections if you prefer? 77% of all children and young people said yes (base:649)

By age group 76% of primary school children (base:203) 78% of secondary school children and young people (base:441)

Can you eat or drink in class if you need to? 88% of all children and young people said yes (base:652)

By age group 94% primary school children (base:204) 85% secondary school (base:441)

Has a healthcare plan been written on how to manage your diabetes while at school? 54% of all children and young people said yes (base:650)

By age group 81% primary school children (base:202) 41% secondary school children and young people (base:441)

Are you confident that the healthcare plan is put into practice?Of all the children and young people who responded: (base:356) 21% very confident 32% confident 30% neither confident or not confident

10% unconfident 7% not confident at all

By age group

% primary school children % secondary school childrenand young people and young people

Very confident 28 18

Confident 36 31

Neither confident or not confident 25 32

Unconfident 6 13

Not confident at all 4 7


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Discussion and conclusionSince our last survey in 2006, there has been some progress in the quality of care accessed by people withdiabetes. An example is the increase in those receiving care services such as HbA1c and eye tests.However there are still gaps. In particular there is a lack of awareness of the symptoms of diabetes amongthose newly diagnosed, which demonstrates the need for more local awareness raising.

Our survey found that adults with diabetes need more support to help them self-manage their diabetes.

They need greater availability of education courses and more active involvement in their care planning.They also need better access to psychological services and wider availability of healthcare professionals,outside of clinic appointments, for advice and support. For some of those who had stayed overnight inhospital in the last year, the timing and choice of food were inadequate and there was a lack of dietaryadvice.

There have been some improvements in services for children and young people since 2006, such asgreater attendance on diabetes courses. However there is still a long way to go to ensure that all childrenand young people have the opportunity to attend a course and get actively involved in making decisionsabout their diabetes care.

The survey results indicate that there is not enough access to healthcare professionals for children andadults with diabetes, in particular to dietitians and psychologists. Compared to 2006, fewer children andyoung people felt they were able to contact their diabetes team outside of their clinics. While only asmall number of respondents had transferred to adult services, they felt that their transition would havebeen easier if there had been more opportunities to meet with the adult diabetes team before theycompleted their transfer. They would like to improve their diabetes service were greater communicationbetween their diabetes team and school, to have greater continuity of care and to improve their access todiabetes education and pumps.

Our findings about how diabetes is managed in school suggest that parents are providing significantsupport to their children, especially for those in primary schools to help with blood glucose monitoringand administering injections. The survey found that some young people at secondary school need

additional support for monitoring and injections from the school they are currently only receivingsupport from family members. It is essential that support is tailored to the individual needs of the child,whatever their age, and is provided by members of staff in school. There is a need for more training ofschool staff and for care plans to be put into practice and used daily in secondary as well as primaryschools.

Recommendations

AdultsEarly identificationWe need to raise awareness of the new Vascular Risk Assessment and Management Programme to

educate the public and increase their understanding of diabetes risk factors. Services must be designedto reach communities that have limited access to mainstream health services to reduce inequalities.To increase accessibility to these services, assessments will need to be delivered through a variety ofsettings, such as pharmacies and local outreach services.

Emotional and psychological supportEmotional and psychological support should be prioritised as an integral part of diabetes care.Training and support should be made available for healthcare professionals to help them to deliveremotional and psychological support. The aim is to implement this as an integral part of healthcareprofessional training.

User involvementWe recommend that all NHS organisations responsible for commissioning or delivering diabetes careshould establish structured, systematic processes to involve people living with diabetes in all relevant areasof work, and to include involvement of the end-user in the planning, commissioning and evaluationof services.


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Care planningThe way in which diabetes care is provided needs to be systematically organised and well resourced tosupport people with diabetes to effectively self-manage their condition, leading to better outcomesthrough a patient-centred approach.

Commissioners of diabetes services need to ensure that dedicated time and funding is in place to providequality-assured care planning training to ensure that healthcare professionals are equipped with the skills,

confidence and support to deliver a collaborative approach to care.

Access to diabetes servicesAll people with diabetes should have access to a contact telephone number available 24 hours a day foremergency support and to reduce hospital admissions.

All people with diabetes in the UK aged 12 and over, need to have their eyes checked at least once ayear for signs of retinopathy. The test should use a digital camera and meet the recommended standardsset by the Diabetic Retinopathy Screening programme or relevant national body in each UK nation.

Access to education to support self-managementAll people with diabetes, whether recently diagnosed or otherwise, should receive the structured

education and support they need to enable them to manage their own diabetes.

Managing diabetes during hospital staysPeople with diabetes in hospital wishing to self-manage should be supported to do so where appropriate.This includes self-administration of medication and access to self blood glucose monitoring equipment.

Wherever possible, people with diabetes should be able to make their own food choices and the timingsof treatments should be appropriately co-ordinated with mealtimes to ensure stable blood glucosecontrol.

At mealtimes people with diabetes should be prioritised so that food and medication timings can be

co-ordinated.

Every person with diabetes should have an assessment and care plan for their hospital stay which isregularly updated as appropriate.

Diabetes training should be implemented for all medical and nursing staff to ensure healthcareprofessionals are equipped with the necessary skills.

Children and young peopleLegislationChild health strategies in the UK nations should detail how relevant legislation and guidance will beimplemented in schools, local authorities and health authorities to support children and young people

with long-term conditions such as diabetes.

User involvementUser involvement in service development is needed to ensure service provision meets local need.Healthcare teams and commissioners must ensure they involve children and young people who may haveparticular needs such as individuals with learning disabilities and those whose views are not normallyheard for example, children from the travelling community.

Audit and register participationParticipation in paediatric audits of diabetes care should be mandatory. Dedicated time and resourcesand the availability of appropriate IT systems are required to make sure this can be implemented.National databases of childhood diabetes should be established and maintained in all four UK nations.


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Access to diabetes teams and servicesAs a minimum, children and young peoples specialist diabetes teams should include: doctors, nurses,dietitians, mental health professionals as well as school and social support.

Paediatric diabetes specialist nurses play a pivotal role in care delivery and local service planning mustrecognise the Royal College of Nurses recommendations for the number of PDSNs required to meet theneeds of children and young people with diabetes locally.

All children, young people and their families should have 24 hour access to specialist support foremergency care, including a telephone helpline.

Routine psychological support and counselling, for young people and their families with diabetes, needsto be made available by local diabetes services.

Transparent and consistent protocols for the delivery of insulin pump therapy services should be in placein all localities.

TransitionA local protocol for transition should be developed which recognises that transition is a process not a one

off event. Transition should be tailored to the individual needs of the young person, at a time suitable forthem, and young people should know the adult team prior to transfer to adult services.

Paediatric and adult services should work together to ensure that each young person receives anappropriate transition individually tailored to their specific needs. This should be negotiated with theyoung person and their parents and take place at a time and stage of development appropriate to theindividual young person.

Access to information and educationIt is imperative that children with all types of diabetes and their carers have access to high qualityeducation and information at different stages of their life that meets their needs.

Managing diabetes in schoolsAll schools should be required to have a medicines policy in place and an appropriate system of supportfor children and young people with diabetes and other long-term conditions, including school stafftraining. These actions should be included in official schools inspections.

Paediatric diabetes specialist teams should regularly liaise with local partner organisations involved in thecare of children and young people with diabetes, for example schools.

All children and young people with diabetes should have a healthcare plan for school developed bythemselves and their family in partnership with the paediatric diabetes team and school.

Teaching staff should have a minimum level of understanding about diabetes. Resources such as theMedical Conditions at School Policy Resources pack should form a mandatory part of teacher training.

References1. Diabetes UK. Diabetes: state of the nations 2006, progress made in delivering the national diabetesframeworks. A report from Diabetes UK.

2. Diabetes UK. Diabetes in the UK 2009: key statistics on diabetes. A report from Diabetes UK.

3. DH policy team. Making every young person with diabetes matter: report of the children and youngpeople with diabetes working group. April 2007. Department of health.


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About children and young people members who respondedAre you male or female? (base:660) 54% female (50%, 2006) 46% male (50%, 2006)

Do you have Type 1 or Type 2 diabetes? (base:659) 99.7% Type 1 0.3% dont know

AppendixAbout adult members who respondedNationality of members (base:10,146) 88% england (89%, 2006) 5% wales (5%, 2006) 6% scotland (5%, 2006) 1% northern ireland (2%, 2006)

Age of members (base:15,100) 2% 18-30 (2%18-29, 2006) 12% 31-50 (12% 30-49, 2006) 49% 51-70 (46% 50 to 69, 2006) 37% 71 and over (41% 70 years and older, 2006)

Gender of members (base:14,673) 51% female (50%, 2006) 49% male (50%, 2006)

Ethnicity of members (base:14,485) 95% white (97%, 2006) 2% asian (1%, 2006) 1% other (

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diabetes -x