National Audit (UK & ROI) of Adolescent

Health Care and Transition in

Endocrinology 2016 Report

Prepared by Helena Gleeson

Abstract Background Transition is an important part of endocrine care. The last national audit in 2006 identified the existence of clinics to support transition in the majority of larger centres. For transition to be effective it is recognised that aspects of health care supporting transition need to be “young person friendly” as defined by the You’re Welcome Quality Criteria. Aim Using questionnaires transition service provision was explored from the perspective of paediatric and adult providers and also from that of young people and their parents. Results 39 trusts took part across the UK and ROI. Adolescent health care and transition in endocrinology in 36 trusts were described from 49 service provision questionnaires completed by providers (24 by paediatric endocrinologists). 233 young people in 24 trusts completed “Mind the Gap” questionnaires and in 20 trusts 199 parents also completed the same questionnaire. 29 out of 36 trusts provided a clinic structure to see young people undergoing transition, only 8 out of 24 paediatric services and 11 out of 25 adult services made use of this structure to see young people presenting in the adolescent or young adult age group. Some transition arrangements were condition specific. The mean number of the 16 “young person friendly” criteria achieved was 8 (range 3-12). The criteria less frequently achieved were:- young people receive a hand-held summary at the time of transfer to adult care; clinic takes place outside school/college hours; young people actively involved in service design, development and evaluation; and service provides sign posting and information about other local services for young people. Despite the criteria most frequently achieved being assisting young people in taking responsibility and giving them the opportunity to be seen on their own, at the age of 18 or older 34% reported being seen on their own and 21% contacting the hospital independently. Young People (35%) themselves identified a gap (difference between best and current care) in all aspects, this was greatest in criteria related to environment and process compared with criteria related to the provider, one provider criteria that had a more marked gap was having “staff who they could talk to about sensitive issues”. Parents (45%) identified similar issues but also wanted “opportunities to meet parents” and also “for them to have time alone”. Conclusion Although most services have an infrastructure to support transition, criteria associated with a “young person friendly” service are not being met. Young people and parents in comparison with other aspects of care are satisfied with provider characteristics and therefore focus should be placed on issues relating to environment and process.

Introduction Transition is on the national agenda as an area in health and social care in need of improvement. This year (2016) saw the publication of NICE guidance. Transition is an important part of life long endocrine care. Although there are few data looking specifically at transition in endocrinology, there is evidence that young people are at risk of drifting away from adult service around the time of transfer. The previous transition audit in endocrinology in 2006 concluded that “Transition services are established in many larger units, current guidelines are not always adhered to, provision of specialist paediatric endocrine clinics for all groups remains variable”. Since that time there has been a focus on improving adolescent and young adult care in general, often described as developmentally appropriate health care, recognising the differing physical, psychological, social and educational and vocational needs. You’re Welcome Quality Criteria for Young People Friendly Health services was first published by the DoH in 2007 and adapted for hospital services in 2011.

Aims

1. To explore current service provision for transition across paediatric and adult services 2. To describe the current workforce supporting transition 3. To understand if other young people presenting in adolescence are being offered similar care to

young people undergoing transition 4. To determine whether the You’re Welcome Quality Criteria are being met by services 5. To explore what criteria were in place for transition and transfer 6. To record good practice, understand barriers and identify plans for further development 7. To record current levels of young person independence in healthcare 8. To identify the top ten areas of service provision most important for young people and parents 9. To explore the areas of service provision most in need of improvement for young people 10. To explore the areas of service provision most in need of improvement for parents

Methods Existing questionnaires were adapted for use in this audit. Paediatric and adult endocrinologists were contacted via email and telephone through SfE and BSPED networks. Teaching and larger trusts were prioritised for inclusion but all trusts were eligible to take part. Each centre gained Caldicott Guardian approval before participation. Each trust taking part were allocated a unique number. The service provision questionnaire was circulated in electronic format. Paper copies of the young person and parent questionnaire were sent to each centre with stamped addressed envelopes so that the participants could return the questionnaire independently after completion.

Analysis

Service Provision Questionnaire The questionnaires were analysed as follows. When the responses to questions reflected practice within the paediatric or the adult service or the opinion of paediatric or adult providers paediatric questionnaires (PQ) and adult questionnaires (AQ) were analysed, this is indicated in the text. For questions describing transition in the trust either a single questionnaire was used if only one

completed or when two consultants in the trust had completed a service provision questionnaire responses were combined, taking the “best” answer when there was disagreement. “Best” answer was taken as the answer most in keeping with best practice. If a numerical value was entered data are represented as mean and range. After all questions there was an opportunity to provide free text comments. These were analysed for themes, in some questions the number of times that a theme was repeated was recorded. Young Person and Parent Questionnaire The questionnaire has two components: 1. gathering details about the young person and 2. “Mind the Gap” questionnaire. The “Mind the Gap” questionnaire contain multiple statements reflecting three areas:- environment, process and provider characteristics. The participant scores the multiple statements out of 7 (1 strongly disagree – 7 strongly agree) as to whether the statement describes their “Best Service” and for the same statement also to score whether it describes their “Current Service”. The difference between the score for “Best Service” and score for “Current Service” represents the “Gap”. Including all young people and parents the mean “Gap Overall” for each statement was calculated. Excluding all young people and parents recording a “Gap” of 0 and including only those in the analysis the mean “Gap Actual” for each statement was calculated.

Results Description of Trusts

39 trusts completed questionnaires as part of the audit. Adolescent health care and transition in endocrinology in 36 trusts were described from 49 service provision questionnaires (24 by paediatric endocrinologists). Young people in 24 trusts completed 233 “Mind the Gap” questionnaires and in 20 trusts 199 parents also completed a questionnaire. The majority of trusts provided paediatric and adult care, three trusts were children’s trust and two were adult trusts. The survey captured three out of four children’s trusts, one specialist cancer trust, three out of eight London teaching trusts and thirteen out of twenty teaching trusts and ten other trusts were large or medium trusts from across England. From other countries in the UK three trusts in Wales and four trusts in Scotland one trust in the ROI took part. One trust in NI also took part although only young person and parent questionnaires were included.

Region Centre Name Trust Service

Provision Young Person

Parent

North East Newcastle Newcastle upon Tyne Hospitals NHS Foundation Trust Adult 9 9

North West Liverpool Alder Hey Children's NHS Foundation Trust Paediatric 8 10

North West Liverpool Aintree University Hospitals NHS Foundation Trust Adult 5 5

North West Manchester The Christie NHS Foundation Trust Both 2 2

North West Manchester Central Manchester University Hospitals NHS Foundation Trust

Both 4 6

Yorkshire & Humberside

Huddersfield Calderdale and Huddersfield NHS Foundation Trust Adult

Yorkshire & Humberside

Hull Hull and East Yorkshire Hospitals NHS Triust

1

Yorkshire & Humberside

Leeds Leeds Teaching Hospitals NHS Trust

1 1

Yorkshire & Humberside

Sheffield Sheffield Children’s NHS Foundation Trust Paediatric 7 7

Yorkshire & Humberside

Sheffield Sheffield Teaching Hospitals NHS Foundation Trust Adult 1

West Midlands Birmingham Birmingham Children’s Hospital NHS Foundation Trust Paediatric 20 17

West Midlands Coventry University Hospitals Coventry and Warwickshire NHS Trust Both 21 19

West Midlands Shrewsbury The Shrewsbury and Telford Hospital NHS Trust Paediatric

East Midlands Leicester University Hospitals of Leicester NHS Trust Adult 18 15

East Midlands Northampton Northampton General Hospital NHS Trust Paediatric

East Midlands Nottingham Nottingham University Hospitals NHS Trust Paediatric

East of England Cambridge Cambridge University Hospitals NHS Foundation Trust Both 13 12

East of England Norwich Norfolk and Norwich University Hospitals NHS Foundation Trust

Adult 1 1

East of England Welwyn Garden City

East and North Hertfordshire NHS Trust Adult

Thames Valley Oxford Oxford University Hospitals NHS Foundation Trust Both 13 12

London London St George's Healthcare NHS Trust Paediatric

London London King's College Hospital NHS Foundation Trust Both 8 8

London London Barts Health NHS Trust (Barts and the London) Paediatric (2)

1

South West Bath Royal United Hospitals Bath NHS Foundation Trust Both 2 2

South West Bristol University Hospitals Bristol NHS Foundation Trust Both

South West Exeter Royal Devon and Exeter NHS Foundation Trust Adult 4 2

South West Truro Royal Cornwall Hospitals NHS Trust Paediatric

Wessex Portsmouth Portsmouth Hospitals NHS Trust Adult

Wessex Southampton University Hospital Southampton NHS Foundation Trust Paediatric

Kent, Surrey & Sussex

Brighton Brighton and Sussex University Hospitals NHS Foundation Trust

Adult

Scotland Aberdeen NHS Grampian Both 7 7

Scotland Edinburgh NHS Lothian Adult 17 7

Scotland Glasgow NHS Greater Glasgow & Clyde Both 14 12

Scotland Stirling NHS Forth Valley Both

Wales Cardiff Cardiff & Vale University Health Board Both 7 7

Wales Carmarthen Hywel Dda Health Board Adult

1

Wales Glamorgan Cwm Taf University Health Board Adult

NI Belfast Royal Victoria Hospital

31 16

Description of patient group

The majority of the 36 service saw young people with pituitary, thyroid, adrenal (including congenital adrenal hyperplasia (CAH)) and gonadal conditions and late effects. Over 83% of services saw young people with bone conditions and disorders of sexual development (DSD), over 72% saw young people with Turner Syndrome (TS). 47% of services saw young people with Klinefelter syndrome and Prader Wili Syndrome (PWS).

Some services provided care for young people with other conditions: paediatric services (PQ) - obesity n=18, eating disorders n=8 and chronic fatigue syndrome n=1; adult services (AQ) - obesity n=7, eating disorders n=4 and chronic fatigue Syndrome n=2. Other endocrine conditions commented on in free text were polycystic ovarian syndrome and other endocrine gynaecological issues, genetic endocrine tumour syndromes, gender identity disorders, hyperinsulinism and thalassaemia.

Number of Young People Transferring

20+

15+

10+

5+

<5

To explore current service provision for transition across paediatric and adult services

29 out of 36 trusts were offering joint appointments. The services offering single and multiple joint appointments were transferring in excess of 15 patients a year where as those offering direct transfer were transferring around 5 patients a year. The services offering joint appointments 50% took place in adult services. In 14 services this clinic takes place every 3 months, other services held the clinic more frequently. The average for clinic frequency was every 2 months. Average age for entry was 15 years of age (range 10-17). Only one service ran at the same time as the diabetes transition service.

There were variations across different conditions. In 6 of the 29 services joint appointments were only available for certain groups of young people. In the free text it was commented that some young people with certain conditions were more likely to have separate specialist services or different transition pathways (more or less ideal) within the same trust or travelling to other trusts. This most frequently affected young people with late effects in 12 services but also young people with TS (10 services), DSD and bone conditions (both 6 services). There were other initiatives supporting transition and transfer. Some of which were only available for young people with certain conditions, for example, late effects, bone conditions and TS 1. Leaflet n=16 (included leaflets with contact details, about GH

therapy, “ready steady go”, condition specific and patients support groups)

2. Structure Transition Programme n=6 3. Meetings n=5 (included pre clinic meetings for young people and

parents and those for health care professionals either departmental or regional)

4. Visits n=3 (included informal visits to the unit or wards) 5. Website n=2 (included websites from patient support groups) 6. Social Network n=2 Other initiatives:- Clinic prompts; provision of contact details

36 services

23 multiple joint appointments

9 also offered overlap appointments & 1 direct

transfer

6 single joint appointments

Also offered overlap appointments

7 direct transfer

To describe the current workforce supporting transition These staff groups were identified as being involved in the process of transition. The majority of trusts had involvement of paediatric and adult consultants and nurses, although adult nurses were less likely to be present in clinic and have transition in their job plan. Only 73% of the consultants completing the questionnaire had transition in their job plan and reported that 24% of nurses did (PQ/AQ). Access to psychology was available in a third and gynaecology/urology in half of services. A youth worker and a transitional care coordinator was available in around a third of trusts. Only a third had paediatric trainees present in clinic and a half had adult trainees. In free text comments about other team members/specialties involved include: members from the genetics, haematology, oncology and reproductive endocrinology team; an auxologist and an occupational therapist and physiotherapist for young people with osteogenesis imperfecta. Some team members were only available for certain groups of young people, for example, transitional care coordinators involved in late effects and psychology available for young people with DSD. The transitional care coordinator role was taken on in one centre by the departmental secretary and in another by the paediatric endocrine nurse. One trust had a generic transition nurse.

Involved (% in job plan)

Present in Clinic (% in job plan)

Included in job plan

Paediatric endocrinologists 36 (78) 34 (82) 28 (19/24 PQ)

Adult endocrinologists 33 (70) 31 (74) 23 (17/25 AQ)

Paediatric nurses 29 (40) 21 (57) 12 (7/24 PQ)

Adult nurses 22 (27) 12 (50) 6 (5/25 AQ)

Psychologist 13 (31) 2 (100) 4

Gynaecologist/Urologist 19 (21) 7 (57) 4

Youth Worker or Play Specialist 13 (8) 1 (100) 1

Transitional Care Coordinator 14 (21) 3 (100) 3

Paediatric Trainees 20 14

Adult Trainees 22 18

To understand if other young people presenting in adolescence are being offered similar care to young people undergoing transition

19 out of 24 paediatric endocrinologists reported that they would see other young people in clinics with younger children and 17 out of 25 adult endocrinologists would see them with older adults. However 8 paediatric services made use of adolescent or transition clinics and 11 adult services made use of adolescent and young adult or transition clinics to see this age group. (PQ/AQ)

To determine whether the You’re Welcome Quality Criteria are being met by services

Services on average achieved 8 of the 16 criteria for young person friendly criteria, range 3 to 12.

Criteria Yes % NK

Transition Young people receive a hand-held summary at the time of transfer to adult care

6 17

Accessibility Clinic takes place outside school/college hours 8 22

Monitoring, Evaluation and Involvement of Young People

Young people are actively involved in service design, development and evaluation

10 28 2

Publicity Service provides sign posting and information about other local services for young people

11 31 5

Transition Service has a written transition policy 12 33 1

Transition There is a template for the transfer of medical information between the paediatric and adult services

12 33

Publicity Service makes confidentiality clear and right to be seen alone 13 36 6

Transition Transition process starts in early adolescence 11-13 years 13 36 1

Transition Individualized transition plans are routinely used 18 50 1

Transition There is a monitoring system for "did not attend" instances for 1st and 2nd appointments in the adult service

20 56 5

Staff training, skills , attitudes and values

Staff in the clinic receive basic adolescent health training 22 61 4

Publicity Care is delivered in a suitable environment 23 64 2

Transition Young people routinely receive copy clinic letters addressed to them

25 69 1

Transition Transition issues of parents are routinely assessed and addressed

32 89

Accessibility Young people are given the opportunity to be seen alone 35 97

Transition Young people are actively encouraged and assisted to take responsibility

35 97

To explore what criteria are in place for transition and transfer Mean age stated for starting transition was 14 (range 10 - 18) years and ended at the mean age of 20 (range 16 - 25) years. Mean age stated for transfer was 17 (range 15 - 25) years. Other criteria for transfer are detailed below, fewer adult endocrinologists felt that patient readiness and completion of growth and puberty were important criteria compared with paediatricians.

Trusts n=36

Paediatric endocrinologists (PQ)

n=24

Adult endocrinologists (AQ) n=25

Patient Readiness 29 20 15

Completion of Growth & Puberty

24 18 11

Need for introduction of certain medications

10 6 4

Need for GH testing 9 6 5

Completion of GCSES 2 2 0

In the free text comments on timing of start and end of transition and time of transfer reflected a flexible individualised approach including shared decision making and a range of factors.

Condition factors: Type of condition, age at referral to paediatric service, stage of puberty, stage and stability of treatment, whether there are outstanding investigations

Transition/service factors: Other health transitions, paediatrician decision, uncomfortable in children’s service, transfer into joint clinic or after one joint appointment, confident in adolescent clinic, transfer or after first visit to adult clinic, comfortable/confident with adult team, fully integrated into adult clinic

Independence in healthcare factors: Level of engagement in healthcare, making independent decisions, condition knowledge, evidence of self management, evidence of lone consulting or consulting with minimal parental support

Developmental factors: level of maturity, presence of learning difficulties

Education & Employment factors: Avoidance of examination times, finishing college, moving for work and university, completing university; in employment

Social factors: Comfortable Interacting with society, left home, in an established relationship

To record good practice, understand barriers and identify plans for further development

33 services felt that there was evidence of good practice. The themes from the comments included:-

Providers: Good working relationship between paediatric and adult teams Certain attributes which were felt to facilitate the process and perceived to reduce anxiety in young people and parents e.g. enthusiastic, trusting relationship, approachable, friendly, small. Consultant delivered with good tertiary links allowing care to be delivered locally Nursing involvement and the role of a coordinator

Clinic practice: Small clinics allowing adequate time in appointments e.g. 30 minute appointments and also for post clinic discussion Continuity of care Opportunities to be seen alone Flexible appointment booking Avoidance of clinic cancellations

Environment: Introduction to the adult setting Availability of dedicated adolescent or young person friendly areas

Information transfer: Benefits of services being co-located allowing ease of transfer of health records.

Transition process: Early introduction of the concept of transition Gradual transition process Young people and parents being involved and kept informed and know what to expect after transfer Individualised plans

Model of transition: Joint appointments, flexible approach, having transition service spanning both paediatric and adult services.

Young person and parent involvement in design of service

One stop and/or MDT clinics for specific conditions Compared with transition for young people with diabetes more paediatric endocrinologists felt that transition in endocrinology was less developed than diabetes (n=17) compared with adult endocrinologists (n=11). 34 services however identified the following barriers to further development. 1. Lack of psychosocial support n=20 2. Lack of time n=20 3. Lack of educational resources n=15 4. Lack of support from trust n=13 5. Lack of support from adult services n=2 6. Lack of support from paediatric services n=1 Some other barriers included:-

Lack of funding (n=9) to provide additional time in job plans or additional staff, in particular these staff were identified as being important to have available more nursing support (n=6), more psychology support (n=4), coordinators (n=2), secretarial support (n=1) and dietetic support (n=1). The additional staff could potentially organise and support transition, chase non attenders,

provide emotional support, deal with young people’s queries, assist with booking appointments and support out of hours provision.

Lack of consultant time (n=10) to have more frequent clinics, develop the service and/or resources, discuss and progress individual patients, facilitate training.

Lack of age appropriate environment particularly in adult services (n=5) and lack of clinic space was also raised as an issue (n=4).

Lack of coordination between paediatric and adult services, commitment from the adult team, motivated colleagues in both paediatric and adult services (n=4).

Lack of skills in adult services to look after young people with complex needs and childhood endocrine conditions (n=2).

Other competing clinical issues were raised (n=1) and resistance from management around clinic templates (n=1) and general tardiness to get things done (n=1).

Small numbers of patients requiring transition making further development more challenging (n=4).

Certain groups of young people were considered to pose specific challenges:-

29 services felt that this included young people with complex needs including learning disability and neurodisability and also those with complex psychosocial issue. The comments suggested this was related to appropriate clinic environment, coordinating different agencies, managing parent expectation particularly if admission required to adult services, no community paediatrician equivalent to coordinate care in adult services, difficult to address needs with the time constraints of a busy adult clinic, little support from multiprofessional care (PT,OT, psychology) in adult services.

7 services felt that this included young people with visual impairment.

Young people with specific conditions:- DSD including CAH with poor adherence and TS, PWS, hypopituitarism including those with brain tumours, rare disease in general, short stature and severe obesity.

Young people in particular circumstances:- travelling long distances for specialist care particularly if they require psychological support, those attending multiple clinics requiring multiple health transitions particularly if in different centres, for example, genetic conditions such as NF1 and VHL, late effects, those attending secondary and tertiary services and lack of information transfer, those requiring admission to adult services, those requiring ongoing rehabilitation.

Young people with poor clinic attendance and those with parents who are reluctant to relinquish control.

24 services were planning further development. More paediatric endocrinologists were planning further development (n=17) than adult endocrinologists (n=11). (PQ/AQ). Further developments included:

Reviewing current transition practice (n=5) focussing on patient needs and shared decision making and making incremental improvements.

Restucturing clinics (n=4) to have more dedicated condition specific clinics and age based clinics and joint clinics and transition clinics for diabetes and endocrinology running at the same time

Developing and/or embedding a transition policy and individualised care plans (n=3) including a national transition policy and individualised care plan in Scotland.

Increasing availability of resources for YP (n= 8) including hand held, IT based, credit card sized.

New staff recruitment – planned paediatric consultants (n=3) and adult consultants (n=2) and increased nurse time (n=1) – hoped for increased adult time (n=1) and more nursing support (n=2).

Arranging meetings to discuss further development (n=1) and building a case for further development (n=2)

Changes to service location likely to facilitate further development (n=1).

Acquiring patient satisfaction data (n=1).

Description of Young People & Parents 233 (121 male) young people at 24 trusts completed a median number of 10 (range 1-31) questionnaires.

Average age 17.8 years (range 9.7-29.9) (3 missing). o 64 were aged under the age of 16 o 70 were aged between 16 and 18 o 96 were aged 18 or older .

199 carers (189 were parents; 157 were female) at 24 trusts completed a median number of 8 (range 1-20) questionnaires. Average miles travelled 18 (range 1-280) (58 missing) 11/230 young people were not in EET

105 were in mainstream school

2 were in a school for special needs

46 were going to college

3 were in vocational training

24 were going to university

20 were employed

1 was home tutored

15 were other

6 were unemployed looking for work

5 were unemployed because of ill health

3 was unspecified Young people scored themselves at 71.5 out of 100 for how well they felt over the last week (6 missing)

Those under the age of 16 scored 71

Those between 16 and 18 scored 79

Those aged 18 or older scored 66.5 53% felt they could do all activities, 29% felt that some to all were hard.

124 felt they could do all activities o 34/64 of under 16s o 40/70 of those aged between 16 and 18 o 49/96 of those aged 18 or older

41 felt they could do almost all

40 felt some were hard

18 felt most were hard

9 felt all were hard

1 was unspecified

To record current levels of young person independence in healthcare

Being seen alone Organise Own Medication Contacts hospital

All Under 16

16 to under 18

18 and older

All

Under 16

16 to under 18

18 and older

All Under 16

16 to under 18

18 and older

No 150

56 (87.5)

50 (71.4)

42 (43.8)

45 16 (25.0)

10 (14.3)

19 (19.8)

162

58 (90.6)

55 (78.6)

47 (49.0)

Rarely 20 5 (7.8)

8 (11.4)

7 (7.3)

4 3 (4.7)

1 (1.4)

28 2 (3.1)

6 (8.6)

20 (20.8)

Sometimes 18 4 (5.7)

14 (14.6)

25 11 (17.2)

3 (4.3)

10 (10.4)

10 1 (1.6)

1 (1.4)

8 (8.3)

Mostly 14 2 (2.9)

12 (12.5)

62 17 (16.6)

22 (31.4)

23 (24.0)

8 1 (1.6)

2 (2.9)

5 (5.2)

All the time 30 3 (4.7)

6 (8.6)

21 (21.9)

89 16 (25.0)

31 (44.3)

41 (42.7)

22 2 (3.1)

5 (7.1)

15 (15.6)

Unspecified

1 8 1 3 3 3 1 1

To identify the areas most important for young people and parents Out of 7 all statements scored 4 or higher for being important for “Best Service”, the top 10 statements rated most highly by young people as being associated with “Best Service” were :-

Area Statement Score

Provider Has staff who are very knowledgeable about my condition and the latest treatments 6.37

Provider Provides me with honest explanations of my condition and treatment options (including side-effects) 6.32

Environment

Provides appointments at times that are convenient for me (and my family) 6.07

Provider Treats me as an individual and understands my specific needs 6.06

Environment

Does not waste my time at clinic* 5.95

Provider Allows me to make my own decisions about health-care options in my own time* 5.83

Provider Has staff who know how to talk to young people 5.79

Provider Is interested in me as a person and not just my condition* 5.76

Process Helps me to prepare for/adapt to my move to adult services (if I still have my condition as an adult) 5.69

Provider Allows me to decide who should be in the consultation/examination room* 5.68

Out of 7 all statements scored 4 or higher for being important for “Best Service”, the top 10 rated statements rated most highly for parents as being associated with “Best Service” were :-

Area Statement Score

Provider Provides me and my son/daughter with honest explanations of my son/daughter’s condition and treatment options (including side-effects) 6.63

Provider Has staff who are very knowledgeable about my son/daughter’s condition and the latest treatments 6.54

Provider Has staff who know how to talk and listen to young people 6.48

Provider Treats me and my son/daughter as individuals and understands our specific needs 6.33

Process Provides information to other professionals involved in my son/daughter’s health-care (e.g. family doctor)* 6.33

Provider Has staff who understand the realities of being a young person* 6.28

Process Helps me and my son/daughter to prepare for/and adjust to their move to adult services (if they still require ongoing care when they are older) 6.27

Process

Has a named member of staff who is responsible for co-ordinating the different aspects of my son/daughter’s care and who we can contact if we have a problem* 6.25

Provider Has staff who understand the realities of being a parent of a young person with a chronic condition* 6.18

Environment

Provides appointments at times that are convenient for me and my son/daughter 6.16

*indicates statements that differ between young people and parents.

To explore the areas of service provision most in need of improvement for young people

The mean “Gap Overall” for all statements for young people was 0.78. Excluding young people who were satisfied with the service (Gap=0), an average 35.4% (range 24.9-43.8) of young people identified a gap which is represented by the “Gap Actual” line (mean gap 2.07).

ENVIRONMENT PROCESS PROVIDER Using red as indicating gap above average and therefore requiring the greatest improvement. All environment areas and four out of five process areas required improvement including three of the top ten areas “Does not waste my time at clinic”, “Provides appointments at times that are convenient for me (and my family)” and “Helps me to prepare for/adapt to my move to adult services (if I still have my condition as an adult)”. The only provider characteristic requiring improvement were “Has staff who I can talk to about sensitive or difficult issues (even when they have nothing to do with my condition)” and young people who have identified a gap “Allows me to decide who should be in the

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Area Statement Gap

O Gap

A Gap

%

Environment Does not waste my time at clinic 1.12 2.45 43.8

Environment Has a physical environment that caters for my age group (e.g. appropriate decoration, magazines) 1.12 2.53 42.5

Environment Displays relevant information in waiting areas for me to read and/or take away 1.01 2.21 42.9

Environment Provides appointments at times that are convenient for me (and my family) 1.00 2.24 42.9

Process

Provides me with information about other people and organisations who can support me (e.g. specialist career counsellors, benefit advisors) 0.94 2.23 40.3

Process Lets other people know how my condition s affects me (e.g. teachers, lecturers, employers) 0.89 2.51 33.9

Environment

Provides opportunities for me to meet other young people with my condition (e.g. waiting areas that are just for young people and their families) 0.84 2.15 37.3

Process Helps me to plan for my future 0.81 2.01 38.6

Provider Has staff who I can talk to about sensitive or difficult issues (even when they have nothing to do with my condition).* 0.80 2.20 34.8

Process Helps me to prepare for/adapt to my move to adult services (if I still have my condition as an adult) 0.79 1.94 36.1

Provider Has staff who understand the realities of being a young person 0.75 2.00 35.6

Provider Allows me to decide who should be in the consultation/examination room 0.74 2.33 30.0

Provider Has staff who know me well 0.71 2.19 30.9

Provider Treats me as an individual and understands my specific needs 0.64 1.86 33.1

Provider Is interested in me as a person and not just my condition 0.64 1.79 34.3

Provider Has staff who are very knowledgeable about my condition and the latest treatments 0.63 1.64 36.9

Provider Allows me to make my own decisions about health-care options in my own time 0.62 1.81 33.1

Process Provides information to other professionals involved in my health-care (e.g. family doctor) 0.57 1.86 29.6

Provider Provides me with honest explanations of my condition and treatment options (including side-effects) 0.57 1.78 30.9

Provider Has staff who know how to talk to young people 0.56 1.76 30.5

Provider Gives me opportunities to be seen in clinic without my parents (if I want to) 0.53 2.02 24.9

Average 0.78 2.07 35.4

To explore the areas of service provision most in need of improvement for parents

The mean “Gap Overall” for all statements for parents was 1.01. Excluding parents who were satisfied with the service (Gap=0), an average 43.7% (range 29.6-53.8) of parents identified a gap which is represented by the “Gap Actual” line (mean gap 2.21).

ENVIRONMENT PROCESS PROVIDER Using red as indicating gap above average and therefore requiring the greatest improvement. All environment areas and six out of seven process areas required the improvement including three of the top ten areas “Has a named member of staff who is responsible for co-ordinating the different aspects of my son/daughter’s care and who we can contact if we have a problem”, “Helps me and my son/daughter to prepare for/and adjust to their move to adult services (if they still require ongoing care when they are older)” and “Provides appointments at times that are convenient for me and my son/daughter”. The three areas specifically for parents “Provides opportunities for me to meet other

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parents of young people with similar conditions”, “Helps me to support my son/daughters independence” and “Gives me opportunities to speak to health professionals alone about my needs as a parent” all required improvement. Parents who have identified a gap “Allows my son/daughter to decide who should be in the consultation/examination room” was identified as a provider characteristic requiring the improvement.

Area Statements Gap O

Gap A

Gap %

Environment Displays relevant health-related information in waiting areas for me and my son/daughter to read and/or take away 1.60 2.93 53.8

Process

Provides me and my son/daughter with information about other people and organisations who can support us (e.g. specialist career counsellors, benefit advisors, parent support groups) 1.51 2.76 52.3

Process Lets other people know how their condition affects my son/daughter (e.g. school teachers, lecturers/employers etc) 1.42 2.77 48.7

Environment

Provides opportunities for my son/daughter to meet other young people with similar conditions (e.g. waiting areas just for young people/families with similar conditions) 1.29 2.48 51.8

Process

Has a named member of staff who is responsible for co-ordinating the different aspects of my son/daughter’s care and who we can contact if we have a problem*P Only 1.25 2.72 44.2

Environment Provides opportunities for me to meet other parents of young people with similar conditions *P Only 1.22 2.37 50.3

Process Helps me and my son/daughter to plan for their future 1.21 2.24 51.3

Process

Helps me and my son/daughter to prepare for/and adjust to their move to adult services (if they still require ongoing care when they are older) 1.19 2.42 46.2

Environment Provides appointments at times that are convenient for me and my son/daughter 1.17 2.39 48.2

Process Helps me to support my son/daughters independence *P Only 1.17 2.26 48.2

Provider Gives me opportunities to speak to health professionals alone about my needs as a parent *P Only 1.10 2.68 40.2

Environment

Has a physical environment that caters for my son/daughter’s age group (e.g. appropriate decoration, appropriate magazines) 1.09 2.26 47.7

Environment Does not waste my and my son/daughter’s time at clinic 1.07 2.41 43.7

Provider Has staff who know me and my son/daughter well 0.93 2.09 43.2

Provider Allows my son/daughter to decide who should be in the consultation/examination room 0.90 2.32 38.2

Provider

Has staff who I can talk to about sensitive or difficult issues (even when they have nothing to do with my son/daughter’s chronic condition) 0.86 2.13 39.2

Process Provides information to other professionals involved in my son/daughter’s health-care (e.g. family doctor) 0.85 1.99 40.2

Provider Gives my son/daughter opportunities to be seen in clinic alone (if they want to) 0.85 2.16 38.2

Provider Treats me and my son/daughter as individuals and understands our specific needs 0.82 1.88 42.2

Provider Has staff who understand the realities of being a parent of a young person with a chronic condition 0.80 1.81 43.2

Provider Is interested in me and in my son/daughter as people and not just their chronic condition 0.80 1.91 40.2

Provider Has staff who understand the realities of being a young person 0.78 1.69 44.7

Provider Has staff who know how to talk and listen to young people 0.73 1.67 42.7

Provider

Provides me and my son/daughter with honest explanations of my son/daughter’s condition and treatment options (including side-effects) 0.63 1.78 34.2

Provider Has staff who are very knowledgeable about my son/daughter’s condition and the latest treatments 0.58 1.69 33.7

Provider Allows my son/daughter to make their own decisions about health care options in their own time 0.50 1.61 29.6

Average 1.01 2.21 43.7

Compared with young people responses a larger percentage of parents identified gaps and both “Gap Overall” and “Gap Actual” was greater than in young people. Areas identified as requiring the greatest improvement were similar the only difference across “Gap Overall” and “Gap Actual” were that young people wanted “staff who they could talk to about sensitive issues”.

Best Service Gap Overall Gap Actual

Statements Young Person

Parent Young Person

Parent Young Person

Parent

Environment 5.21 5.30 1.02 1.24 2.32 2.47

Process 5.34 6.02 0.80 1.23 2.11 2.41

Provider 5.85 6.14 0.65 0.82 1.94 2.01

All 5.58 5.91 0.78 1.01 2.07 2.21

Summary

Majority of services particularly those transferring more young people offered single or multiple joint appointments

However these services:- o Lack of availability to all young people in some clinics, joint clinics only available to certain

conditions. o Lack of flexibility as 6 of the 29 joint clinics were only offering a single joint appointment. o Lack of flexibility as the clinics were infrequent occurring on average every 2 months.

Introduction to adult environment as well as adult team as 50% of joint clinics took place in adult services. This was identified as good practice as some services.

Not all young people meet the adult service prior to transfer. 7 of the 36 services offer/provide direct transfer with no opportunity to meet the adult service even through overlapping appointments prior to transfer is an acceptable model.

Small numbers of young people in a service requiring transition were more likely to undergo direct transfer and this was also identified as a barrier to service development. Paediatric diabetes transition services were considered more developed and could provide an opportunity to support the paediatric endocrine transition service, only one service ran the endocrine transition service at the same time and two other services were considering it.

Young people presenting to paediatric and adult services in the majority of services are being seen in less age appropriate clinics with younger children and older adults. There was a lack of age banded clinics described in either paediatric or adult services.

Initiatives supporting transition were limited. Only 6 centres offered a structured transition programme and not to all young people with all conditions.

Job planning needs improvement. Under 75% of consultants and 25% of nurses had transition included in their job plan. Lack of nursing support was seen as a barrier to service development.

Access to psychology remains low. Only present in a third of services. Lack of psychosocial supported was identified as a barrier to service development by 20 services.

A key recommendation in the NICE guidance that all young people should have a named worked was identified as an area in need of improvement by 44% (MtG) of parents.

Issues are raised around training. Over a half of services did not have paediatric and adult trainees involved in transition clinics.

Criteria for transition and transfer as defined by age reflect lack of understanding that transition is a process spanning from early adolescence (10-13) to early adulthood (20-24) and transfer is an event. Only 36% (YW) of services report transition beginning in early adolescence.

Criteria for transition and transfer as recorded in comments demonstrates an understanding that timing is flexible and individualised and multifactorial including those related to condition,

service, independence in healthcare, stage of development, education and employment and engagement with wider society.

The majority of services felt that their service represented good practice and two thirds of services were planning further development, including hand held summaries and developing and embedding transition policies and plans currently achieved by 50% (YW) or less of services.

Barriers however are present and with lack of psychosocial support and lack of consultant time and lack of funding to increase support from other members of the multidisciplinary team being the most frequently cited.

Young people with complex needs were identified as posing a particular challenge. A focus is needed to support adult services in ensuring that care for young people with complex needs including learning disabilities is covered through the various agencies.

Young people attending clinics in multiple specialties were identified as posing a particular challenge. Standards of care should be developed for young people attending multiple appointments.

Services are on average only achieving 50% of criteria indicating young person friendly services, this included only 28% (YW) of services actively involving young people in service design, development and evaluation.

Despite over 90% (YW) of services supporting young people to become independent 51% of 18 and older have rarely or never been seen alone and 70% have never or rarely contacted the hospital independently.

Young people and parents rate provider characteristics as more important than process and environment. Provider characteristics were also the least in need of improvement. The only provider characteristic identified as in need of improvement by 35% of young people was “staff they could talk to about sensitive or difficult issues”. This emphasises the importance of training provided for staff in 61% (YW) of services.

Although environment is rated as least important for best service compared with provider characteristics and process, the most improvement is required in this area. The most important environment statement was providing appointment at convenient times which was identified as an area in need of most improvement by 43% of young people and 48% of parents.

After environment, process was the next area most in need of improvement. The most important process statement was helping with preparation for adult services which was identified as an area in need of most improvement by 36% of young people and 46% of parents. As previously mentioned only 6 services had a structured transition programme.

Although 89% (YW) of services routinely addressed transition issues of parents, all statement reflecting transition issues of parents were rated above average in need of improvement.

Environment

Mind the Gap – Needs Improvement You’re Welcome - % Met

Does not waste my time at clinic Clinic takes place outside school/college hours – 22% Provides appointments at times that are

convenient for me (and my family)

Has a physical environment that caters for my age group (e.g. appropriate decoration, magazines)

Care is delivered in a suitable environment – 64%

Provides opportunities for me to meet other young people with my condition (e.g. waiting areas that are just for young people and their families)

Displays relevant information in waiting areas for me to read and/or take away

Service provides sign posting and information about other local services for young people – 31% Service makes confidentiality clear and right to be seen alone- 36%

Process

Mind the Gap – Needs Improvement You’re Welcome - %Met

Provides me with information about other people and organisations who can support me (e.g. specialist career counsellors, benefit advisors)

Service provides sign posting and information about other local services for young people – 31%

Lets other people know how my condition s affects me (e.g. teachers, lecturers, employers)

Transition process starts in early adolescence 11-13 years – 36% Individualized transition plans are routinely used – 50%

Helps me to plan for my future

Helps me to prepare for/adapt to my move to adult services (if I still have my condition as an adult)

Parents

Mind the Gap – Needs Improvement You’re Welcome - %Met

Provides opportunities for me to meet other parents of young people with similar conditions

Service routinely addressed transition issues of parents – 89%

Helps me to support my son/daughters independence

Gives me opportunities to speak to health professionals alone about my needs as a parent