National Peer Review Report: Wales Paediatric Diabetes 2014

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National Peer Review Report: Wales Paediatric Diabetes 2014 An overview of the findings from the 2014 National Peer Review of Paediatric Diabetes Services in Wales 1

Contents 1.0 Introduction... 3 1.1 The Peer Review Process-Wales... 3 1.2 The Paediatric Diabetes Measures... 4 1.3 The Peer Review Process... 4 1.4 Configuration of Services... 4 2.0 National Paediatric Diabetes Service Summary... 4 3.0 Compliance with measures... 6 4.0 Immediate Risks (IRs) and Serious Concerns (SCs) identified at Peer Review... 8 4.1 Key Themes... 8 5.0 Compliance against all Paediatric Diabetes measures... 10 Hospital Measures... 10 MDT Measures... 10 2

1.0 Introduction This report summarises the findings of the first national round of external peer review visits to Children and Young People Diabetes Services (CYPD) in Wales during 2014. A total of 13 services were assessed in that period. The findings are based on peer review visit reports that were completed between November 2014 and March 2015. All paediatric diabetes services undertook a self-assessment of their own service and were then subject to an external peer review visit by the National Peer Review Programme. The report principally summarises the numerical data contained within the Diabetes Quality Improvement Network System (DQuINS) that records the level of compliance by individual services against the measures for paediatric diabetes against two areas: Hospital Measures for CYPD Services Children and Young People Diabetes MDT In addition, the peer reviewers specific comments are referenced regarding the qualitative information gathered from the peer review visits. The identification of good practice for dissemination and recommendation is a vital positive component of the peer review process. This report therefore highlights examples of good practice that have been identified during this programme. The report also identifies the key messages that have emerged from the reviews and highlights some of the challenges facing the providers of services for patients with paediatric diabetes, and commissioners, as they strive to ensure the delivery of effective and high quality care. It should also be noted that the peer review programme uses clinical lines of enquiry against clinical outcomes drawn from the National Paediatric Diabetes Audit when reviewing a service. The outcomes of the audit should be read in conjunction with this report 1.1 The Peer Review Process-Wales A comprehensive peer review was carried out in the latter part of 2014 going into 2015 and in total thirteen paediatric diabetes units covering the whole of Wales participated in the review; giving a 100 percent involvement from all units. The request from NHS Wales to review the units followed a successful comprehensive peer review of all paediatric diabetes units across England. To enable the peer review process to happen it was necessary for commitment and support from the health boards, clinicians and service users across Wales. An enthusiastic and committed group of key stakeholders assisted the peer review process to happen, the overwhelming response enabled increased dissemination of good practice and improved network relationships to further develop. The contribution from all of the key stakeholders following each review gave rise to a robust feedback and report. Key themes started to come up early on in the peer review visits such as staffing issues for members of all of the multi-disciplinary team involvement in the care of children and young people with diabetes and the lack of a 24 hours expert on-call telephone for advice. The key themes were discussed with each health board. The involvement from the key stakeholders was important and necessary in order for the peer reviews to happen and in turn start the vital conversation of service improvement for paediatric diabetes across Wales. 3

1.2 The Paediatric Diabetes Measures The Measures used in the 2014 National Peer Review Programme were developed by an expert group of diabetes clinicians drawn from each of the 10 regional Paediatric Diabetes Network in England. The measures were developed by drawing from a number of key reference documents- these are: NICE recommendations Best Practice Tariff standards Yorkshire and Humber Paediatric Diabetes Network Pilot Measures West Midlands Quality Review Service quality standards for paediatric diabetes The measures are available on request or can be found of the resources page the DQUINS site. http://www.dquins.nhs.uk/index.php?menu=resources 1.3 The Peer Review Process The National Peer Review Programme aims to improve care for patients involved in Paediatric Diabetes and their families by: Ensuring services are as safe as possible; improving the quality and effectiveness of care; improving the patient and carer experience; undertaking independent, fair reviews of services; providing development and learning for all involved; encouraging the dissemination of good practice. The outcomes of the National Peer Review Programme are: Confirmation of the quality of services; speedy identification of major shortcomings in the quality of services where they occur so that rectification can take place; published reports that provide accessible public information about the quality of services; timely information for local commissioning as well as for specialised commissioners; validated information which is available to other stakeholders. The details of the process are provided in the handbook for peer review which is available on request or on the resources page of the DQuINS website: www.dquins.nhs.uk 1.4 Configuration of Services There are 13 centres included in this report under 6 health boards. 2.0 National Paediatric Diabetes Service Summary This report presents an overview of the peer review visit findings from the National Peer Review Programme for Paediatric Diabetes services in Wales. 4

A total of 13 Paediatric Diabetes Units were assessed against two sets of measures (Hospital measures and MDT measures) Across all teams, combining the measures: 0 teams achieved 90% 2 teams achieved 80% 4 teams achieved 70% 11 low performing teams with 50% or below. A number of teams had Immediate Risks and Serious Concerns identified at peer review. These have been reported to the relevant Trust CEO s and should have been acted upon immediately. 5 teams had an immediate risk identified in their peer review report All teams had serious concerns identified in their peer review report 5

3.0 Compliance with measures Table 1 SA and PR Compliance Hospital MDT SA PR SA PR Princess of Wales Hospital, Bridgend 43% 43% 62% 53% Neath Port Talbot Hospital, Baglan 71% 57% 55% 60% Singleton Hospital, Swansea 57% 57% 55% 53% Gwent Diabetes Service 86% 43% 97% 80% Ysbyty Gwynedd Hospital, Bangor 86% 86% 52% 50% Glan Clwyd District General Hospital, Rhyl 43% 43% 45% 57% Wrexham Maelor Hospital, Wrexham 43% 43% 48% 53% University Hospital of Wales, Cardiff 71% 43% 59% 57% Royal Glamorgan Hospital, Llantrisant 43% 43% 50% 63% Prince Charles Hospital, Merthyr Tydfil 43% 29% 73% 70% Bronglais Hospital, Aberystwyth 43% 43% 77% 70% Withybush General Hospital, Haverfordwest 57% 43% 73% 67% Glangwili General Hospital, Carmarthen 57% 57% 61% 50% Median 57% 43% 59% 57% Figure 1 Figure 1 above shows the difference between self-assessment and peer review compliance for 2014. There is a median average drop of 14% between SA and PR for the hospital measures and 2% for the MDT measures. 6

Figure 2 Figure 3 7

4.0 Immediate Risks (IRs) and Serious Concerns (SCs) identified at Peer Review No. of services with IR at PR % of Services with IR at PR No. of services with SC at PR 5 38% 13 100% % of Services with SC at PR 4.1 Key Themes Immediate Risks There were 5 Teams that had immediate risks across the 13 Hospitals. Neath Port Talbot Hospital, Baglan Singleton Hospital, Swansea Glan Clwyd District General Hospital, Rhyl Prince Charles Hospital, Merthyr Tydfil Bronglais Hospital, Aberystwyth The content of these IRs fall into one of the below categories Lack of protected time for the dietitian to cover Paediatric Diabetes. The absence of protected time means that the dietitian cannot see the newly diagnosed patients and without this vital input, it can potentially increase the risk of harm for the patient due to a lack of treatment discussion. The lack of a Paediatric Diabetes Specialist Nurse (PDSN) Serious Concerns All 13 teams had serious Concern. Staffing There is not enough PAs dedicated for the Consultant Paediatrician and no formal cover arrangements Lack of cover for other MDT members Single Handed PDSNs with high workload No or limited access to psychologist to support the children, young people and their families with diabetes The lack of whole time equivalent (WTE), for the Paediatric Dietitian and the pressing issue that the time is not protected nor is there cover arrangements for the dietitian to cover paediatric diabetes safely and effectively. 8

The absence of a '24 hour on-call' advice system for Paediatric Diabetes in order that families can contact 'expert' advice when they need support. The lack of multi-disciplinary (MDT) clinics to enable a full consultation and treatment pathway to be started. Insufficient capacity in clinic to offer 30 minute appointments, with a need for additional clinics a year in order to meet the standard for 30 mins consultations and see everyone 4 times per year with a recorded HbA1c. The lack of Point-of-Care testing delays treatment planning The deficiency of a young adult's transition service Reported lack of time, outside of patient contact, for all members of the multi-disciplinary team to attend appropriate training sessions specific to the care of children and young people with diabetes. Good Practice Cohesive team working, enabling the best use of all of the skills within the MDT. Excellent input into education by PDSNs, using different ways of delivery i.e. in school, groups or 1:1's. Virtual Clinic service on email Educational family events Patient support groups. The teams being progressive and recognising the benefits of monitoring treatment i.e. use of CGM's. Extensive school visiting programmes, with attention given to individualised care plans and the emotional wellbeing of the child in schools. Establishing of electronic databases 9

5.0 Compliance against all Paediatric Diabetes measures Hospital Measures Measure Number and Short Description SA PR W12-1D-101 Trust Wide Management Group for Children and Young People's Diabetes 54% 42% W12-1D-102 Service Specification for Twenty-four Hour Advice Service 15% 8% W12-1D-103 Minimum Consultation Period 69% 67% W12-1D-104 Availability of Information in an Outpatient Environment 100% 83% W12-1D-105 Point of Care Testing for HbA1c 77% 67% W12-1D-106 Review of Children and Young People Admissions 15% 17% W12-1D-107 Paediatric Ward Staff Training 69% 58% MDT Measures Measure Number and Short Description SA PR W12-2A-101 Lead Clinician and Responsibilities 100% 83% W12-2A-102 Children and Young People's Diabetes Network Attendance 71% - W12-2A-103 Children and Young People's Diabetes MDT Team Membership 31% 17% W12-2A-104 Treatment Planning Discussion 23% 33% W12-2A-105 Cover Arrangements for Team Members 54% 17% W12-2A-106 Informing the GP of the Diagnosis and Initial Prescribing 85% 92% W12-2A-107 Key Worker policy 38% 50% W12-2A-108 W12-2A-109 W12-2A-110 Specialist Training for Children and Young People's Diabetes Core Nursing Members Specialist Training for Children and Young People's Diabetes Medical Members Specialist Training for Children and Young People's Diabetes Dietetic Members 62% 92% 85% 92% 75% 58% W12-2A-111 Educational Training Sessions 100% 92% W12-2A-112 W12-2A-113 W12-2A-114 W12-2A-115 W12-2A-116 Access to Core Children and Young People's Diabetes MDT Members for Follow-up Patients Access to Core Children and Young People's Diabetes MDT Members for Follow-up Patients - HbA1c Measurement Access to Core Children and Young People's Diabetes MDT Members for Follow-up Patients - Psychological Assessment Access to Core Children and Young People's Diabetes MDT Members for Follow-up Patients - Dietetic Assessment Access to core Children and Young People's Diabetes MDT Members for Follow-up Patients - Additional Contact 54% 42% 69% 58% 15% 0% 46% 33% 44% 33% W12-2A-117 Did Not Attend (DNA) Policy 46% 58% W12-2A-118 Individualised Objectives 62% 42% W12-2A-119 Outcome of Patient Reported Experience Measures 77% 100% 10

W12-2A-120 Record of Care 69% 67% W12-2A-121 Provision of Written Patient Information 92% 75% W12-2A-122 Clinical Guidelines 58% 75% W12-2A-123 W12-2A-124 Policy for the Management of Patients whose HbA1c Rating is Greater than 75 mmol/mol Policy for the Screening of Children and Young People with Type 1 Diabetes 31% 33% 92% 100% W12-2A-125 Policy for Patient Choice of Insulin Pump Therapy 62% 75% W12-2A-126 Diabetes Self-Management Education 8% 8% W12-2A-127 Teaching Principles of Meal Planning 85% 92% W12-2A-128 Support for Children in Education 100% 100% W12-2A-129 Transfer of Young People to Adult Care 54% 42% W12-2A-130 Participation in the National Paediatric Diabetes Audit 100% 100% W12-2A-131 Presentation and Review of Audit Activity 30% 42% 11