NPDA First Year of Care PREM National Report
Source: data.gov.uk (2024-11-27)

NPDA First Year of Care PREM 2023/24. Published in November 2024, this national report presents findings of the 2024 Parent and Patient Reported Experience Measure surveys (PREMs). These surveys assessed various aspects of children and young people's, and their parents’ and carers’, experiences of diabetes care within the first year of care.

The surveys were available online from 24 July 2023 to 23 January 2024. Children and young people receiving care from a paediatric diabetes team, and their parents and carers, with a diabetes duration of 6 to 18 months were invited to participate. This round of PREM surveys received a total of 2712 responses, with 726 responses from children and young people, and 1986 responses from parents and carers.

While it is important to acknowledge the high levels of satisfaction with care reflected in the findings, this report also highlights areas for improvement in care following diagnosis, offering specific recommendations to commissioners, regional diabetes networks, and paediatric diabetes units (PDUs) to address variations in patient and parent experiences.

Audits 
RCPCH
NPDA
National Paediatric 
Diabetes Audit
First Year of Care Parent and 
Patient Reported Experience 
Measures (PREMs) 2024
July 2023 – January 2024
Royal College of 
Paediatrics and Child Health
RCPCH

Living with diabetes can be challenging, 
particularly around the time of diagnosis, 
not just for the child but also for their parents 
and family. Understanding these challenges 
is crucial for improving care and advising 
support networks and funding bodies. 
This Parent and Patient Reported Experience 
Measure (PREM) aims to capture these 
experiences in a comprehensive and 
meaningful way.
Both children and young people and their parents 
and carers showed overwhelming positivity about 
their relationship with paediatric diabetes teams, 
with 99% reporting positive relationships with 
their team. Paediatric Diabetes Units should be 
congratulated and highly commended for this.
However, there are areas which need addressing 
such as the understanding of DKA, free access 
to technologies and the availability of the whole 
paediatric diabetes multidisciplinary teams 
(MDT) at clinic visits. Furthermore, this PREM has 
uncovered the significant impact on parent/carer 
employment following diagnosis in a child, and a 
worrying influence on disrupted sleep in parents 
and carers.
This PREM sets the stage for a thoughtful, 
comprehensive assessment that respects 
the lived experiences of both children and 
young people and their parents/carers, aiming 
to improve their quality of life and the care 
they receive. It remains important that we 
acknowledge that excellence in care is a 
two-way process and it is vital that we listen 
and learn from the lived experience. 
Professor Justin Warner
NPDA Clinical Lead
Extended analysis:
Extended analyses of the 2023 First Year 
of Care PREM, acknowledgements, and a 
glossary of terms used in this report are 
available on our PREM reports page. 
Quantitative data has been made available 
where there were more than 10 responses 
to either the Parent and Carer or Child and 
Young Person questionnaire. This can be 
downloaded on our data files page.
Further information:
Further information on the background, 
aims, and scope of the NPDA is available at: 
https://www.rcpch.ac.uk/work-we-do/
clinical-audits/npda/about
Foreword
© 2024 Healthcare Quality Improvement Partnership (HQIP)
Cite as: National Paediatric Diabetes Audit: First Year of Care Parent and 
Patient Reported Experience Measures 2023, RCPCH: London, 2024.
The Royal College of Paediatrics and Child Health is a registered charity 
in England and Wales (1057744) and in Scotland (SCO38299)
Contents
Introduction	
3
Participation	
4
Key messages and recommendations	
5
Diabetic ketoacidosis (DKA) at Diagnosis	 5
Structure of Care	
5
Availability of Specialist Advice	
6
Multidisciplinary Input	
7
Access to Technologies	
8
Information for Schools and Colleges	
9
Relationship with the Diabetes Team	
9
Impact on Employment	
10
Stress and Sleep	
11
Overall PREM Score	
12
Quality Improvement Resources	
12
2
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

This national report covers the 
experience that children and 
young people and parents and 
carers receive in their first year 
of care for diabetes, as they 
interact with the NHS through 
attending Paediatric Diabetes 
Units (PDUs). 
The PREM surveys were open to 
children and young people who 
have had diabetes for between 6 
and 18 months, and their parents 
and carers. The surveys were 
available online between 24th July 
2023 and 23rd January 2024. 
The National Paediatric Diabetes Audit 
(NPDA) is commissioned by the Healthcare 
Quality Improvement Partnership (HQIP) 
as part of the National Clinical Audit and 
Patient Outcomes Programme (NCAPOP). 
HQIP is led by a consortium of the Academy 
of Medical Royal Colleges, and the Royal 
College of Nursing. Its aim is to promote 
quality improvement in patient outcomes, 
and in particular, to increase the impact that 
clinical audit, outcome review programmes 
and registries have on healthcare quality in 
England and Wales. 
HQIP holds the contract to commission, 
manage, and develop the National Clinical 
Audit and Patient Outcomes Programme 
(NCAPOP), comprising around 40 projects 
covering care provided to people with a wide 
range of medical, surgical and mental health 
conditions. The programme is funded by 
NHS England, the Welsh Government and, 
with some individual projects, other devolved 
administrations and crown dependences.
Introduction
'Patient experience' is what the process 
of receiving care feels like for the patient, 
their family and carers. It is a key 
element of quality, alongside providing 
clinical excellence and safer care… If 
safe care and clinical excellence are the 
‘what’ of healthcare, then experience 
is the ‘how’. Starting with the patient, 
listening to their needs, and designing 
the experience to meet these needs is 
achievable and results in an environment 
where individual patients feel cared 
for and supported.
The Patient Experience Book (2013), 
NHS Institute for Innovation and 
Improvement
Collecting PREMs data complements the routine collection 
of other health checks and diabetes outcomes by:
Enabling children and young people with diabetes 
and their families to provide anonymous feedback 
on what they value about their care and how it 
could be improved
Assessing whether care provided is meeting 
standards considered important by children and 
young people with diabetes and their families
Providing local teams with insights into the 
experiences of the families they serve that can be 
used to improve engagement with outcomes 
1
2
3
Parent and Patient Reported Experience Measures (PREMs)
3
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

Participation Demographics:
The demographics of children and young people represented in the 2023 First Year of Care PREM 
is similar to those included in the 2021 PREM* apart from age, which tends to be younger. 
Participation 
There were 2712 PREM responses received, of 
which 726 were from children and young people 
and 1986 from parents and carers. 
Based on the number of parent/carer responses, 
this represents approximately 34% of the total 
number of eligible (newly diagnosed) children 
and young people over the data collection period.
Of the 172 PDUs included in the NDPA and 
eligible to participate, 170 (99%) achieved at 
least one response to either the child/young 
person or the parent/carer survey.
Wales
11 PDUs
41 CYP responses
134 parent/carer responses
England
159 PDUs
685 CYP responses
1852 parent/carer responses
Figure 1: Participation in the 2023 First Year 
of Care PREM in England and Wales.
84% 
13% 
1% 
0% 
1% 
Mother
Father
Grandmother
Grandfather
Other guardian
Gender
50% 
49% 
32% 
Male
Female
Gender not listed/
Prefer not to say
Type of 
diabetes
96% 
3% 
1% 
Type 1
Type 2
Other
**parent/carer survey only
*Note: The 2023 NPDA PREM only included children and young people in their first year of care following diagnosis.
The 2021 NPDA PREM included all children and young people with diabetes, regardless of the duration post diagnosis. 
Ethnicity
80% 
7% 
4% 
6% 
1%
2% 
White
Asian
Black
Mixed
None of the above
Prefer not to say
Relation 
of responder
to child
** 
Age
7% 
17% 
32% 
39% 
5% 
3 years or younger
4 – 7 years old
8 – 11 years old
12 – 16 years old
17 years or older
23%
28% 
47% 
6 – 8 months
9 – 11 months
12 – 18 months
Time since 
diagnosis
4
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

37%
38%
46%
38%
48%
38%
52%
46%
43%
44%
39%
48%
41%
51%
38%
46%
20%
18%
15%
14%
11%
10%
10%
8%
  London
  North East and Yorkshire
  North West
  Midlands
  South East
  East of England
  Wales
  South West
Key Messages and
Recommendations
Diabetic Ketoacidosis (DKA) is a life-
threatening complication of diabetes 
where there is a severe lack of insulin 
in the body.  
15% are unaware of whether they 
or their child had DKA at diagnosis. 
The rate of DKA at diagnoses 
reported by respondents was 
44%, which is higher than the rate of 
DKA at diagnosis in the NPDA Report 
on Care and Outcomes 2022/23 
(23.3% in 2022/23). There was regional 
variation (Figure 2).
Parents/carers and children and young people are happy 
with the age appropriateness of the clinic waiting area 
(93% and 87% respectively). 
Most respondents prefer to sometimes see all members 
of their diabetes team together, while a small percentage 
prefer to always see the members of the diabetes team 
individually (Figure 3).
KEY MESSAGE 01
KEY MESSAGE 02
Diabetic Ketoacidosis (DKA) at Diagnosis
“Did you/your child have DKA at diagnosis?”
Structure of Care
“Does your clinic have an area for your child to wait that is appropriate for their age?”
“How do you prefer to see your diabetes team?”
Recommendation 1
Ensure families are educated about the importance of understanding the process of DKA, 
as this can be a life-threatening complication. Resources should be created to support 
families at diagnosis in understanding DKA and these should be clearly signposted.
Action by: National Children and Young People’s (CYP) Diabetes Network and PDUs.
"Every time I have an 
appointment, it’s with the entire 
diabetic team and I find it a bit 
scary to open up completely to 
my doctor about my problems."
Figure 2: Parent and carer responses to the question “Did your child have 
diabetic ketoacidosis (DKA) at diagnosis?” by NHS region in England and Wales.
No	
Yes	
I'm not sure
5
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

34%
56%
10%
32%
58%
4%
26%
64%
10%
28%
50%
8%
Always together
Sometimes together
Always separately
Always together
Sometimes together
Always separately
Do you see your
diabetes team all
together or
separately?
How would you
prefer to see your
diabetes team?
Figure 3: Preference of appointment structure by respondent, excluding those who answered “I don’t’ know”, in England and Wales.
Figure 4: Availability of diabetes advice in England and Wales, excluding those who answered “I don’t know”. 
This question was only asked of parents and carers. 
For 81% of parents and carers and 
79% of children and young people, 
preference of appointment structure 
matches reality.
82% of parents and carers are always able to contact their diabetes team 
during core 9am-5pm hours, and 71% can always access advice 24 hours 
a day (Figure 4). 
Almost all (97%) of the respondents received face-to-face support. 85% 
of parents and carers and 60% of children and young people received 
support via telephone contact. Over half of parents and carers received 
support via hospital ward visits, home visits, or school visits.
Clinic waiting areas should be age appropriate, and 
diabetes multidisciplinary teams should respect how 
families wish to be consulted. 
KEY MESSAGE 03
Availability of Specialist Advice
“Are you able to contact a member of the diabetes team for advice during core 
team hours and get appropriate advice about your child’s diabetes 24 hours a day?”
“Since diagnosis of diabetes, how have you received support from your diabetes
 team members?”
"I found the 
WhatsApp 
contact in the 
first few weeks
 really helpful." 
Parents and carers	
Children and young people
Yes, always	
	
Yes, sometimes
No, but I don't mind	
No, but I would like them to
I have not had a need to contact them
71%
82%
20%
16%
I am able to get appropriate advice about my child’s diabetes 
from the hospital 24 hours a day
I am able to contact a member of the diabetes team for advice
during core team hours, Monday to Friday 9am-5pm
6
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

Figure 5: Responses to the statement “We are able to see the following members of the team during our appointments with the 
diabetes team” in England and Wales. This question was only asked of parents and carers.
Most parents and carers were able to see a diabetes doctor (82%) 
and a children’s diabetes specialist nurse (84%) at every visit. This 
was less so for dietitians (46%) and for psychologists (11%) who 
they could see sometimes when requested and/or pre-arranged 
(Figure 5). Access to a psychologist at every visit was very variable 
across integrated care boards and local health boards, ranging 
from 0% to 48%.
"I think there 
should be therapy/
access to a 
psychologist for 
parents and children." 
KEY MESSAGE 04
Multidisciplinary Input
“Were you able to see the following members of the team during your 
appointments with the diabetes team?”
Recommendation 2
Families should have 24-hour access to advice by a fully trained and experienced expert 
in managing paediatric diabetes emergencies. Teams should ensure that families know 
how to access this advice.
Action by: Integrated Care Boards across England and Local Health Boards across Wales.
Recommendation 3
All newly diagnosed children and young people and their parents and carers should be 
provided with full multidisciplinary team support, including a diabetes psychologist. 
Action by: Integrated Care Boards across England and Local Health Boards across Wales.
Yes, at each visit	
    Yes, sometimes
Yes, but only when requested/pre-arranged	
    No, but we do want to see one
No, but we would like to be able to
82%
84%
46%
11%
13%
13%
38%
21%
4%
10%
26%
22%
20%
Diabetes doctor
Children's diabetes
specialist nurse
Dietitian
Psychologist
7
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

KEY MESSAGE 05
Access to Technologies
“Have you/has your child been offered any of the following diabetes related 
technologies?”
A quarter (23%) of respondents were not offered an insulin pump 
or a hybrid closed loop system, but report that they would like 
to use one (Figure 6). 2.7% of CYP were not offered either flash 
glucose monitors or continuous glucose monitors (CGM) and 
6.6% were not using either flash glucose monitors or CGM.
Children under the age of 12 were more likely than those 
12 years or older to be offered an insulin pump, continuous 
glucose monitor or a hybrid closed loop system.
"I would have preferred 
to receive information 
about insulin pumps." 
Recommendation 4
Diabetes technologies should be offered to all children and young people with 
diabetes in England and Wales in line with the NICE guidelines.
The NPDA will continue to support the provision of data to inform the NHS England Hybrid 
Closed Loop 5-year implementation strategy. 
Action by: Integrated Care Boards across England and Local Health Boards across Wales.
Figure 6: Responses to the question “Have you/Has your child been offered any of the following diabetes related technologies?” 
by technology, in England and Wales. This question was asked of both parents and carers and children and young people. 
PREM data collected July 2023 to January 2024. The National Institute for Health and Care Excellence (NICE) recommended 
Hybrid Closed Loops (HCL) for all children and young people with Type 1 Diabetes in the Technology Appraisal published 
December 2023. In England and Wales, a HCL 5-Year Implementation Strategy was launched in 2024.
Yes, and they use one	
Yes, but they don't want/don't use one
No, but I don't mind	
No, but they would like to use one
68%
40%
41%
72%
25%
16%
21%
26%
7%
17%
13%
16%
32%
14%
36%
4%
23%
2%
7%
23%
Smart insulin pen
Insulin Pump
Flash glucose monitor
CGM
Closed loop system
8
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

KEY MESSAGE 06
KEY MESSAGE 07
Information for Schools and Colleges
“Does your diabetes team ensure that staff at your/your child’s school/college 
have the necessary information about their diabetes in order to help them?”
Relationship with the Diabetes Team
“Thinking about your/your child’s care since you/they were diagnosed, do you 
have a positive relationship with your diabetes team?
The vast majority of parents and carers and children and young people felt that schools and 
colleges were kept well informed with information about diabetes (Figure 7).
99% of respondents have 
positive relationships with 
their paediatric diabetes team 
and 97% receive positive and 
consistent guidance from their 
diabetes team (Figure 8). The 
vast majority (95%) report that 
their diabetes team always 
respects their religious and 
cultural beliefs.
"They have 
supported with 
school day-to-day 
and special events, 
such as residential 
trips."
"They care for me
as a person rather 
than just a client."
Figure 7: Responses to the statement “Our diabetes team ensure that staff at my/my child’s school/college have the necessary 
information about my/their diabetes in order to help me/them”, excluding ‘I don’t know’ and “Not applicable” responses, by 
respondent in England and Wales.
Figure 8: Percentage of respondents answering “Yes, always” or “Yes, sometimes” to each 
statement by respondent in England and Wales, excluding “I don’t know” responses. 
Parent and carers	 	
Children and young people
Parent and carers	 	
Children and young people
77%
19%
3%
1%
70%
22%
5%
3%
Yes, always
Yes, sometimes
No, but I would like them to
No, but I don't want them to
99%
99%
99%
97%
99%
97%
99%
99%
98%
99%
We receive positive and consistent
guidance from our diabetes team
Our diabetes team talks to us in a way
we can understand
Our diabetes team involves us in
decisions about our care and treatment
Our diabetes team understands us and
our individual needs
I have a positive relationship with our
diabetes team
9
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

KEY MESSAGE 08
Impact on Employment
“Have the diabetes care needs of your child impacted your/your partner’s 
employment?”
Parents/carers’ 
employment may be 
disrupted by their child’s 
diabetes care needs. 
30% of parents/carers 
reported that they or their 
partner reduced their 
working hours, and 11% left 
employment (Figure 9). 
Only 29% were asked by 
their paediatric diabetes 
team about financial 
challenges that may 
impact on their child’s 
diabetes management 
(Figure 10).
Figure 9: Responses to the question “Have the diabetes care needs of your child impacted 
on your/your partner’s employment?” in England and Wales, excluding “Not applicable” 
answers. This question was only asked of parents and carers.
Figure 10: Responses to the question “Have your team asked you about any financial challenges 
faced by your family that may impact your child’s diabetes management”, excluding ‘I don’t 
know’ responses, in England and Wales. This question was only asked of parents and carers. 
Recommendation 5
Paediatric diabetes teams should be provided with the skills and training to be able to 
ask each family about any financial challenges they face. Teams should be signposting 
to national and local sources of information and support families with diabetes 
experiencing financial hardship. 
Action by: Diabetes charities, such as Diabetes UK and Breakthrough T1D (formerly JDRF), and 
the National Children and Young People’s (CYP) Diabetes Network
This key message is very positive and does not require a recommendation. Suffice it to say, PDUs 
should be congratulated on their positive relationships with children and young people with 
diabetes and their parents/carers during the early months post diagnosis.
11%
30%
59%
Yes – I/they have left my/their employment
Yes – I/they have reduced my/their working hours
No – My/their employment status is unchanged
29%
39%
14%
18%
Yes
No, but I don't want them to
No, but I would like them to
I don't know
10
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

KEY MESSAGE 09
Stress and sleep
“Compared with your sleep before your child’s diabetes diagnosis, has there 
been a disturbance to your normal sleep pattern, either quality or length of sleep?”
64% of parents/carers report that their sleep is disrupted more than once a week due 
to stress relating to their child’s health (Figure 11). Parents/carers with younger children 
with diabetes have more disrupted sleep (Figure 12). 
Figure 11: Responses to the question “Compared with your sleep before your child’s diabetes diagnosis, has there been 
a disturbance to your normal sleep pattern, either quality of sleep or length of sleep” by reason for disturbed sleep. This 
question was only asked of parents and carers. 
Figure 12: Frequency of sleep disturbance due to “Attending to your child’s 
diabetes health care needs” by the age of the child or young person.
Recommendation 6
PDUs should be aware of the high levels of disrupted sleep following diagnosis of 
diabetes. Studies should be funded to understand the impact of a diabetes diagnosis 
on parent and carer wellbeing, including quality of sleep, and the factors that may mitigate 
this impact, such as diabetes technologies. Families should be offered psychological support 
after a diagnosis of diabetes. 
Action by: Funding bodies such as the National Institute for Health and Care Research (NIHR), 
Integrated Care Boards across England, Local Health Boards across Wales, and the National 
Children and Young People’s (CYP) Diabetes Network.
"It’s been an extremely 
stressful time since 
diagnosis, but we 
couldn’t have got 
through it without the 
Paeds Diabetic Team."
Not during the last month	      Less than once a week	
   Once or twice a week	
3 or more times a week
Not during the last month	      Less than once a week	
   Once or twice a week	
3 or more times a week
9%
8%
9%
25%
29%
7%
12%
14%
22%
19%
27%
32%
25%
24%
70%
58%
47%
35%
24%
0%
20%
40%
60%
80%
100%
3 years or
younger
4-7 years
8-11 years
12-16 years
17-19 years
15%
20%
41%
11%
16%
25%
27%
27%
18%
47%
37%
16%
Attending to your child’s diabetes health care needs
Stress relating to your child's health
Stress not related to your child's health
11
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

Figure 13: PREM scores by PDU in England and Wales. This only includes PDUs with at least 10 responses
An overall PREM score was constructed to facilitate comparison of performance between PDUs. 
This was calculated using the questions that had clear positive or negative response options and 
that measured performance or experience. The overall PREM score is defined as the percentage 
of responses to these questions that were positive. Both the parent and carer and child and young 
person questionnaires were included in this analysis. 
A “perfect” overall PREM score would be 100%, which would be achieved if all respondents responded 
to each question with the most positive possible response. There was an overall average PREM 
score of 75%, compared to 71% in the 2021 PREM (which included all children and young people with 
diabetes, regardless of time since diagnosis). There was little variability in performance, ranging from 
60% to 89% (Figure 13).
The RCPCH Diabetes Quality Improvement Website provides multidisciplinary teams with the tools 
to identify, design and analyse their own interventions specific to the needs of the children and young 
people and their families that they care for.
A slide deck is available on the NPDA PREM reports page for teams to customise with their own results, 
with prompts for team discussions around results, and links to relevant QI resources. 
PREM Scores
Quality Improvement Resources
0%
20%
40%
60%
80%
100%
PDUs	
     Mean
12
First Year of Care Parent and Patient Reported Experience Measures (PREMs)

Royal College of Paediatrics 
and Child Health
5-11 Theobalds Road, 
London, WC1X 8SH
The Royal College of Paediatrics and Child Health (RCPCH) is a registered charity in England and Wales (1057744) 
and in Scotland (SC038299). 
Royal College of 
Paediatrics and Child Health
RCPCH
First Year of Care Parent and Patient 
Reported Experience Measures 2023
Healthcare Quality 
Improvement Partnership (HQIP)
128 City Road
London
EC1V 2NX
©2024 Healthcare Quality Improvement Partnership. 
Published by RCPCH November 2024