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Operational Policy for the Children and Young People

with Diabetes Multidisciplinary Team (MDT), Leeds

Children’s Hospital

Revised January 2014

This operational policy was agreed by the Leeds Children’s Diabetes Team on 30/01/2014 Date for review: December 2014

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Table of contents

Title Page Introduction 3 Aims & Philosophy of Care 3 Leadership arrangements and responsibilities 4 Trust Management of Paediatric Diabetes 5 Membership arrangements 5 Specialist Training for CYPD MDT members and Extended members 8 Service Specification 9 Outpatient Services 10 CYPD MDT Functionality 12 Treatment 14 Admissions Information 16 Patient and Carer Feedback and Involvement 16 Training of Patients 17 Appendices

Best Practice Criteria are in italics

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Introduction The Children and Young People with Diabetes team centralised at the Children’s Day Hospital at St James University Hospital for all administrative and outpatient requirements in April/May 2011. Inpatients are based on ward L30, L40 and L9 at the Leeds Children’s Hospital at Leeds General Infirmary. Young people over the age of 16 years are admitted to the adult wards at St James Hospital. The service provides support for all children and young people (C&YP) diagnosed with diabetes from birth until 19 years of age and is dependent on requirements of the individual and their family. It serves a population of 800,000 in Leeds and provides both a tertiary service to the Yorkshire and Humber of 5.2 million as well as taking referrals from outside the region. The service is an integral part of the Yorkshire and Humber Children and Young People with Diabetes Network.

Aims and Objectives of the CYPD Team The Children and Young People’s Diabetes team aim to provide consistent co-ordinated care to children and young people with diabetes with the ultimate aim of them managing their diabetes with confidence in all situations. The MDT is committed to:

1. Working with children and young people (C&YP) with diabetes and their families to support them in learning about diabetes and having the confidence to manage it successfully.

2. Providing comprehensive and updated information to the families as part of their educational programme, including interactive group re-education sessions.

3. Involving parents, children and teenagers in the evaluation and organisation of the service.

4. To submit data annually to the NDA. 5. To maintain an up to date database of children under the care of the MDT. 6. To hold alternate monthly governance meetings and high HbA1c review sessions. 7. To continue to be involved in the regional children’s diabetes network and national

and international projects where appropriate. 8. To enable all our patients to participate in research

Philosophy of Care The Children and Young People’s Diabetes team aims to deliver a high quality, patient centred service. Our professional charter summarises what our patients can expect from us:

• We will listen to you and involve you in decision making.

• We will maintain confidentiality.

• We will support you and your family in managing diabetes.

• All children and young people will have a say in decisions about their care and in designing the services they receive.

• We will work in partnership with each child, young person and their family.

• We will always be honest and clear, even if what we have to say may be difficult.

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• Each child and young person will be cared for in an individualised and holistic way.

• The team will follow a policy of consistent ‘Family Centred Care’ where each child and

young person will have their own named nurse.

• The team will offer the best up to date treatment based on current research, which will be delivered to the highest standard.

• We recognise the special and changing needs of children and young people with diabetes.

• We aim to empower every child, young person and their family to make informed choices by giving honest information.

• We aim to support self-management by providing knowledge & skills to each child and young person to help them take control of their own diabetes and integrate it successfully into their daily lives.

• We aim to create a relaxed atmosphere and act as advocates whenever needed.

• We will respect the value and diversity of all children and young people and their families.

• We aim to provide timely access to high quality medical, nursing, dietetic and psychological support.

Leadership arrangements and responsibilities (D12-2A-101) Dr Fiona Campbell is the clinical lead for the children and young people’s diabetes team MDT. The Lead Clinician’s responsibilities include:

To chair the MDT Governance meeting and acting on the minutes.

Attend the Y&H network meetings.

Ensure diabetes guidelines are updated.

Coordinate the regular review of the MDT action log and high HbA1c meetings making sure the minutes are recorded and acted upon.

Review audit programme.

Produce annual report and workplan

Additional role - LTHT clinical lead for Transition

Collaborating with higher education institutions to coordinate Continuing professional development in diabetes

Overseeing the professional development of multidisciplinary team members

Maximise the opportunities for the team with the introduction of Best Practice Tariff and Peer review.

Editor of Diabetes Care for Children & Young People. Deputy lead Clinician To provide cover for the Lead clinician at all times

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Trust Management of Paediatric Diabetes (D12-1D-101) The Trust group responsible for the co-ordination and care of children and young people with diabetes is the Children’s Directorate at Leeds Teaching Hospitals Trust led by Dr Michael Richards, Clinical Director, and Debra Wheeler, Directorate Manager.

Role Team Member

Lead Consultant for CYPD Fiona Campbell

Lead Nurse for CYPD Wendy Sewell

Lead Nurse for Transition Julie Cropper

Lead Nurse for Education Carole Gelder

Lead Paediatric Dietitian for CYPD Frances Hanson

Lead Psychologist for CYPD Kate Hall

Lead Consultant for care of adults with diabetes

Ramzi Ajjan

Trust Lead for point of care testing (or representative)

Paula Marchetti

Manager of Children’s Services Debra Wheeler

The accountability of this group is to the Children’s Clinical Service Unit governance structure. The meetings are quarterly and minutes are documented electronically for governance purposes. The division is then accountable to the Trust Board.

Terms of Reference are in Appendix F.

Membership arrangements (D12-2A-103, 105)

Core Team Team member Role Cover

Fiona Campbell (FC)

Lead Clinician James Yong

James Yong (JY) Paediatric Consultant Fiona Campbell

Wendy Sewell (WS) CDNS-Team leader/relaxation therapy

JC/CG

Carole Gelder (CG) CDNS-Educational lead WS/JC

Caroline Mullier (CM)

CDNS-IT lead CG/MH/JE

Julie Cropper (JC) CDNS-Transition Lead WS/CG/JP/MB

Jane Exall (JE) CDNS-Research lead CG/MH/CM

Carol Bacon (CB) CDNS- Type 2/Safeguarding WS/JC

Melani Hill (MH) CDNS-School Liaison CG/CM/JE

Jayne Poole (JP) CDNS-Transition JC/MB

Michelle Barber (MB)

CDNS - Children/Transition JC/JP/CB

Frances Hanson (FH)

Paediatric Dietitian Laura McDowall/ Kirsten Foster (mat leave cover)

Laura McDowall (LM)

Paediatric Dietitian Frances Hanson

Julie Hobbah (JH) Secretary and admin support None

Libby Adams (LA) Admin assistant 15 hours None

Rebecca Waldron (RW)

Psychologist Kate Hall

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Kate Hall (KH) Psychologist Rebecca Waldron

Extended Team

Ramzi Ajjan (RA) Adult Diabetologist Peter Grant

Jemma Jones (JJ) S/N Ward L30 Katie Lambert

Claire Hazelgreaves (CH)

Sister Ward L9/40 Siobhan Conlin

Roger Parslow (RP) Paediatric Epidemiology Carolyn Stephenson

Anne Phillips (AP) Senior lecturer, Univ of York Carole Gelder

Daisy Smith (DS) Data base administrator None

Diabetes Team: (D12-2A-103) The team consists of: 2 Consultant Paediatricians Dr Fiona Campbell 0.5 WTE Dr James Yong 0.5 WTE 9 Childrens Diabetes Nurses Specialist (CDNS) 6.12 WTE Wendy Sewell (Team Leader) 0.84 WTE Carol Bacon 1.0 WTE Carole Gelder (Clinical educator) 0.6 WTE Julie Cropper 1.0 WTE Jane Exall 0.6 WTE Melani Hill 0.5 WTE

Caroline Mullier 0.48 WTE Jayne Poole 0.5 WTE Michelle Barber 1.0 WTE

2 Dietitian Frances Hanson (Band 7) 1.0 WTE Laura McDowall (Band 6 ) 1.0 WTE

Mat Leave from Dec 2013 2 Clinical Psychologist Rebecca Waldron 0.4 WTE Kate Hall 0.6 WTE 1 Secretary/administrator Julie Hobbah 0.8 WTE Administrative assistant Libby Adams (Band 2) 15 hours Medical Trainees Aoife Kelleher (AK)

Suma Nanjundappa (SN) Bindu Avatapalle (BA) Nadia Amin (NA)

In-patient Staff on Ward L30 and L40 with specific interest in diabetes. Responsibilities of Core Nurse Members:

Contribute to multidisciplinary team and patient assessment/care.

Provide specialist educational and training support to patients and parents, promoting holistic care.

Provide link nurse responsibilities to their named patients, contributing towards high HbA1c meeting and informing team of specific problems.

Liaising with key workers including schools on behalf of their patients.

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Contribute towards the efficient management of the team, completing templates and utilising new ideas and research as discussed by the team.

Contribute towards audit.

Acting as advice and expert resource for other professionals.

Provide link to towards and actively involve the education of new patients, parents and staff.

Responsibilities of core dietitians

Contribute towards the multidisciplinary discussion and patient assessment/care.

Provide expert dietetic advice and support to other health professionals.

Lead on education of patients, parents and staff on CHO counting and dietetic issues generally.

Advice for schools as necessary particularly in relation to school menus.

Maintain up to date knowledge base and understanding all aspects of diabetes care and how it relates to dietetics and healthy living.

Responsibilities of psychologists

Specialist assessment of mental health in CYP and their families and provision of direct psychological interventions in relation to psychosocial aspects of living with diabetes

Signposting and referral on to local and regional mental health and social care services

Coordination of annual screening for emotional well-being in CYP and their families

Provision of consultation and advice to MDT members and other professionals from external agencies in relation to psychosocial adjustment

Ongoing service development in line with relevant policies/guidance to enhance the overall psychological care provided to families

Development of information resources available to children and families in relation to emotional well-being

Development of care pathways with the wider MDT to provide integrated care. For example, as part of the MDT pathway for newly diagnosed patients, we meet all families at diagnosis and provide individual follow-up and input to the newly diagnosed group

Participation in service evaluation and audit to further improve psychological care and incorporate patient-rated experience

Collaboration with the wider MDT and local professionals to develop research that will contribute towards the evidence-base

Provision of teaching and training on psychosocial aspects of care to local professionals

Contribute towards the regional network for clinical psychologists in paediatric diabetes to further standardise and enhance care

Responsibilities of administrator

Act as consultant/team secretary.

Support the team in organising meetings, liaising with parents etc.

Make sure the diabetes letter templates are updated.

Maintain diary of events, staff holidays etc.

Responsible for booking of clinic appointments.

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Diabetes (adult and children) database administrator

To work with the paediatric team to submit to NDA

To provide monthly updated reports from the Diabetes templates.

To work with IT to update templates.

Specialist Training for CYPD MDT members and Extended members (D12-2A-108,109, 110, 111; D12-1D-107)

CDNS (D12-2A-108) All nurses have considerable experience in all aspects of diabetes and CGM/pump training. The whole team attended insulin pump training by Medtronic, Roche, Animas and Ypsomed. Homecare management of childhood diabetes certificate (Birmingham) WS, JC, CG, JE, CB, MH, FH M level CYP module at York University JC, FH, CB, JE, JY, AK, NA, SN & MH & MB currently doing Pump training course (Leeds University) CB Post Graduate Certificate Genetic Health Care - Plymouth University JC Insulin Pump Module - York University JY & AK, MB to undertake Non-medical prescribing - Leeds Metropolitan WS, JC, CG, MH, CB, JE, CM currently doing, MB to do Teaching skills for HCP - Sheffield Hallam University WS, FH Transition Module - York University JC, AK GCP Training All MDT members CG co-ordinates the CYPD, Transition and IPT modules at the University of York and has attended the level M insulin pump training module university of Warwick and MSc in health professional education. JC receives regular updates on Monogenic diabetes research. All members of the team are expected to contribute to the teaching at York University

Medical (D12-2A-109) FC has considerable experience in diabetes and contributes towards the University of York Children and young people’s Diabetes (CYPD) and Insulin Pump (IPT) modules. FC has been on pump training course run by Medtronic. JY has training as a paediatrician with a special interest in diabetes and contributes towards the University of York Children and young people’s Diabetes (CYPD) and Insulin Pump (IPT) modules.

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Dietitian (D12-2A-110) FH has specific expertise in paediatric diabetes and trained as part of a research team on the Kick Off study. FH has completed the CYPD module. FH has completed the M level CYP module at York, and MA module in structured education related to diabetes, from Sheffield Hallam. FH has attended pump training course. LM is new in diabetes post but has considerable experience in paediatric dietetics. She has completed the pilot e-learning module for HCP education in paediatric diabetes LM has deferred her place on CYP module until 2015 after returning from mat leave

Education Training Sessions (D12-2A-111) All clinical core members have attended workshop sessions on ‘Developing and Delivering Diabetes Self-Management Education’ over the past year. Supporting Young Adults with Diabetes Workshop Attended by FC, JC, JY, MB, JP, SN, AK, RA

Ward nurses and doctors (D12-1D-107) Training for ward staff on topics such as DKA, safe use of insulin and insulin pump therapy is provided on a quarterly basis by CDNS. CG provides 1 day a week of specific training in diabetes on the paediatric wards 3 ward liaison nurses have completed the University of York CYP module

Service Specification (D12-1D-102) This has been developed by the regional children’s network. The intention is to review this with our Leeds CCG children’s commissioner so that the elements of the BPT are incorporated. (see appendix A). During daytime hours access to expert advice on diabetes management is available to patients and carers through the paediatric diabetes team. An advice line staffed by CDNS covers 17:00-20:00 on Mondays to Fridays, with Paediatric Diabetes Consultant cover provided 24 hours a day by Dr Fiona Campbell and Dr James Yong on a 1 in 2 rota. We also provide medical advice for other healthcare professionals throughout the region. The initial contact for out-of hours advice after 20:00 is through junior medical staff and senior ward nursing staff on Ward L30, and this is escalated to the consultant on call if further advice is required. Advice Line Rota & contact sheet in Appendix P

Treatment Planning Discussion (D12-2A-104) All children and young people with a new diagnosis of diabetes are discussed with the consultant on call for diabetes immediately after an assessment is made by the admitting general paediatric team to plan on going management. There are guidelines available on the Trust intranet to guide management of a child or young person with a new diagnosis of

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diabetes and for the management of DKA. The patient is then reviewed on the wards within 1 working day by a member of the specialist paediatric diabetes team. All patient contacts are documented on the Diabetes Management System.

Outpatient Services (D12-1D-103, 104, 105; D12-2A-112, 113, 114, 116, 117) Access to Core Children and Young People’s Diabetes MDT Members for Follow-up Patients (D12-2A-112) Outpatients is based at the Children’s Day Hospital at St James Hospital. Present arrangements Dr Campbell Transition clinic 16-19 year old clinic - Wednesday am Young person’s clinic 0-16 years - Thursday & Friday am Regional/Supra regional clinic - 3 Thursdays/month pm Dr Yong* Young person’s clinic 0-16 years - Monday & Tuesday pm Transition clinic 16-19 year old clinic - Wednesday am Regional/Supra regional clinic - 3 Thursdays/month pm Type 2 Diabetes clinic - 1 Friday/month am (*When not when covering wards for the week) Dr Ajjan Transition clinic 16-19 year old clinic - Wednesday am (1st & 3rd weeks every month) Patients are offered at least four clinic appointments a year with the CYPD MDT team. All appointments are 30 minutes and the patient has an opportunity to see consultant and/or registrar, CDNS and dietitian. A quarterly report and performance dashboard is submitted to the Leeds CCG children’s commissioner. Data is entered straight onto the Diabetes Management System (DMS) to document appointments and this is formatted to provide the clinic letter to GPs and summary to the patient. Annual screens are arranged at suitable times for each patient and those over 12 years of age have an annual retinopathy screen booked at the same clinic appointment. At the end of each clinic an action log is filled detailing non-attendance, outpatient tasks and details of inpatients. It is aimed to discuss patients with challenges if the named nurse is not available for the clinic then she will check the action log/database within a week to see what advice was given and with plan to follow up between appointments.

Additional Contacts (D12-2A-116) In addition to clinic appointments patients are offered at least eight additional contacts for check-ups, telephone support, school visits, emails, trouble shooting and advice.

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Each patient has a CDNS as a key worker and they are responsible for ensuring that additional contacts are offered. There is a nurses meeting every 8-12 weeks when new patients and any patients who we have worries about are discussed. During this meeting each CDNS will review their caseload and review if and what type of additional contacts need to be offered at that time to ensure that at least 8 additional contacts are offered in a year. Data is also collected quarterly for the Best Practice Tariff and displayed on a performance dashboard and this helps us review if each patient is being offered the expected number of additional contacts per year.

HbA1c Measurement (D12-2A-113, D12-1D-105) At each clinic all patients have their weight, height and BMI measured. The clinic nurse takes a blood sample for point of care testing of IFCC HbA1c measurement before the patient is seen at every clinic visit. All results are available for consultation and uploaded on to the DMS system.

Minimum Consultation Period (D12-1D-103) 30 minutes is given for each MDT outpatient consultation to allow time for interpretation of results and discussion. Young people in transition clinic are offered the chance to be seen on their own before a joint consultation with their carer. Appendix L - Anonymised Clinic Template

Availability of information in an outpatient environment (D12-1D-104) All patients have their meters and pumps downloaded for the results to be discussed with them in clinic. The main systems that we use in clinic are Diasend and Carelink Pro. UK NEQAS (D12-1D-105) The point of care HbA1c DCA2000 machines are tested and calibrated daily. WE comply with the UK NEQAS standards.

Dietetic Assessment (D12-2A-115) Patients are seen on the wards at diagnosis, and soon after at Diabetes Centre to continue education. Patients may contact a Dietitian by phone or email for advice between clinic appointments. Food information and Carb counting resources are available on the Upbete web site. Additional appointments are offered for carb counting refreshers, exercise and weight management, for coeliac diagnoses, for optimising pump therapy. Our Dietitians provide support and guidance to the team in all aspects of food and its role in diabetes. Both dietitians have been involved in the development of the food sections as part of the structured education for both inpatients and outpatients Laura McDowall has developed lesson plans for Type 2 education over 4 sessions Each patient is offered at least 1 additional appointment per year with one of our paediatric dietitians and over the past year letters offering this have been sent out to every patient. In the first 9 months of this financial year 135 one to one appointments had been made

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Psychological Assessment (D12-2A-114) 2 psychologists, Rebecca Waldron and Kate Hall, have joined the CYPD MDT over the past year. Other members of the MDT discuss children individually with the psychologist; common reasons for referral include lack of motivation, needle phobia, family stress in dealing with diabetes and personal difficulties complicated by the diabetes and affecting its management. All children and young people and their parents are now being assessed annually using the perceived stress scale (PSS), patient health questionnaire (PHQ-2), Mood and Feelings questionnaire (MFQ) and Identifying any problem areas in diabetes; Teen Version (PAID-T) screening tools, to identify any needs for further input by a clinical psychologist.

Did Not Attend Policy (D12-2A-117) All families that do not attend and have not cancelled clinic are contacted by a CDNS and a new appointment is sent. Repeated non-attendance is discussed at an MDT action log meeting, any safeguarding concerns are recorded and a letter is sent to the family about non-attendance. A copy of our DNA policy is which takes into account local safeguarding children’s board (LSB) policy can be found in Appendix G.

CYPD MDT Functionality

Key Worker policy (D12-2A-107) Each patient has a named nurse (key worker) assigned at diagnosis, before discharge, or when their care is transferred to our CYPD team. The named nurse for each patient is documented on the electronic Diabetes Management System (DMS) under core data and patients and their families are given their contact numbers as well as those for the advice line and out of hours emergency advice. Young People’s Diabetes Nurse Specialists (YPDNS) are the named nurse for patients between 16-19 years old, and this is part of the transition process if the young person and their family are in agreement.

Referral, Pathways and Facilities Any child suspected of having a new diagnosis of diabetes should be referred immediately to the service and seen the same day at Leeds Children’s Hospital. GPs may discuss cases in normal working hours with on call diabetes staff at the Diabetes centre. Out of hours all calls (GP and A/E) are directed to the on call general paediatric service and may be admitted initially by the on-call general paediatric consultant. There is a guideline on the intranet for the management of the newly diagnosed child with diabetes with advice given to contact one of the diabetes consultants on call. Children where possible are admitted to ward L30 where nurses are trained in all diabetes management including the use of insulin pumps or ward L40 or L9 for injected insulin. All new patients are discussed with a senior member of the CYPD team within 24 hours of presentation and they are reviewed within 1 working day by a member of the diabetes team. A plan is then drawn up regarding appropriate therapy with the family. All newly diagnosed children are seen by a diabetes nurse specialist and dietitian before discharge. The teams’ preferential therapy is for a basal bolus insulin regimen and the introduction of insulin pumps quickly when it is thought suitable and the family are deemed able to manage.

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A structured education programme is followed with a patient information folder and online key topics (see templates) which are completed following discharge at home. In-patient facilities on L30 are single rooms and used where possible for all patients admitted for diabetes management. Each room has on suite facilities. The ward has resuscitation facilities, trained paediatric specialist nurses and offers 24 hour medical cover as part of the general paediatric team. Those with severe DKA considered to need intensive care would be admitted to the regional PICU within Leeds Children’s Hospital. HDU facilities are not available as yet. All new patients are contacted daily following discharge (except at weekends) and have a home visit within 24-48 hours by the CDNS. One combined visit by the CDNS and dietitian will be made within 4 weeks of discharge where possible. Since April/May 2011 outpatient facilities have been sited at the St James’s Children’s Day Hospital Facility (1st Floor) and the Children’s Diabetes Team Administrative base and Learning Centre are sited adjacent to outpatients (see Learning centre). All children are offered 3 monthly appointments to an outpatients MDT clinic or more frequently as required.

Informing the GP of the Diagnosis and Initial Prescribing (D12 -2A-106) A discharge advice note is issued electronically by the ward discharge team and a CDNS will contact the GP before discharge to inform them of the new diagnosis of diabetes and with information about the equipment list and medication prescribed.

Individualised Objectives (D12-2A-118) Objectives that are individualised for each child and young person are agreed and reviewed regularly. Examples of this are life-style goals, target blood glucose levels, advice on insulin adjustment, and management of high and low blood glucose levels which are reviewed regularly at their MDT clinics. Written information summarising insulin dose changes is given to families before they leave clinic. After clinic, they also receive an updated care plan in a letter with a written summary of their agreed objectives. Each patient goes through a structured education program at diagnosis and further education sessions are offered to individuals when it is identified that further learning is needed in a particular area.

Support for Children in Education (D12-2A-128) CDNS will visit schools to discuss the care of each newly diagnosed child in conjunction with parents and arrange appropriate support and training for the supervision of or administration of insulin. A letter is sent to the head teacher at diagnosis explaining the importance of optimal diabetes management and the potential impact on cognitive performance. Each child and young person has an individualised school care plan agreed with school staff that includes details such as storage of medicines while at school, responsibilities for giving or supervising injections and guidelines on care of children with diabetes and what to do in the management of diabetic emergencies. The Local Education Department at Leeds City Council were involved in the development of the school care plan template and the annual workshop. This workshop is run by the diabetes team and relevant members of the education department to update current school staff. The Local Education Department have a regular interface with the CYPD team.. Appendix E contains the School Education book.

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Transfer of Young People to Adult Care (D12-2A-129) The concept of transition is introduced from 13 years of age as recommended by RCN guidance. Patients are transferred to the transition clinic at the age of 16 years. This is held weekly at the children’s day hospital and every 1st and 3rd week of the month a joint clinic is held with an adult diabetologist, Dr Ajjan. After their 18th Birthday young people are seen in the joint clinic to help familiarise themselves with the adult team and Dr Ajjan will lead their last appointment before transfer to adult services. Transfer occurs to the young adult clinic usually by 19 years of age but this is flexible and dependent on individual need. The young person and their family is involved in the decision about transfer to adult care. Their GP is informed by letter about our intention to transfer and are always welcome to discuss the young person. Contact arrangements immediately after transfer to the young adult clinic remain with the CYPD diabetes team until after their first appointment in the young adult clinic. Our Transition policy is in Appendix O.

Treatment

Adherence to guidelines (D12-2A-122) The team work within the NICE guidelines (2004:080 and ISPAD (2006/7)/BSPED (2011) in all aspects of diabetes management including the use of insulin pumps as agreed by the Yorkshire and Humber Network. All guidelines (DKA, hypoglycaemia, cerebral oedema, newly diagnosed child with diabetes, surgical management of child with diabetes) are reviewed annually and available on the intranet for all staff involved in the management of children with diabetes.

High HbA1c policy >75mmol/mol (D12-2A-123) There is an agreed structured high HbA1c policy (see appendix) in which the named CDNS reports back to the high HbA1c meeting regarding progress. High HbA1c meetings are held every alternate month to discuss all patients with a HbA1c >75mmol/mol in a MDT setting. Some additional management options from the high HbA1c policy include regular telephone contact, increased clinic visits if this agreed with the parents and team, psychological assessment, continuous glucose monitoring (CGM) and in-patient admission if deemed appropriate.

Annual Screening (D12-2A-124) The MDT follows NICE guidelines 2004:08 (CG015 - Reviewed 2010) on screening. At every clinic appointment weight, height, BMI, blood pressure and HbA1c is recorded. At a young person’s annual review, their progress and educational understanding is reviewed including advice regarding foot health, smoking, contraception and sexual health where appropriate. All children over 12 years are referred to retinopathy screening. Where retinopathy is identified, timely and appropriate referral to ophthalmology is provided by the regional screening programme, Urine is sent for a microalbuminuria screen and bloods for coeliac screen, renal function tests, thyroid function and lipid profile screening as necessary. All results are recorded on the data base and patients informed promptly.

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Insulin Pump patients (D12-2A-125) The Leeds Diabetes team have a very active pump programme and follow a specific pathway regarding the introduction of insulin pump therapy. Currently over 50% of our patients with type 1 diabetes are using insulin pump therapy. All patients who fulfil the NICE clinical guidelines CSII-TA151 are offered the option of insulin pump therapy. The discussion about pumps is documented on the DMS.

Stage 1. Team discusses possibility of pump or parents/child requests pump. The advantages and disadvantages are explained and commitment and competency assessed. The diabetes team, parents and child have to agree that the pump is worth trying before proceeding. Pump literature is provided. Advised on cost of pump and importance of using it properly.

Reviewed by phone and in clinic 1,2 and 4 week then 3/12 FU.. Given leaflet on adjusting basal rates and fine tuning pump settings. Encouraged to download pump.

Stage 2 Attends group or 1:1 pump training session and is fitted with pump and has 2-3 day saline trial. Dietary review Decides on whether to proceed and chooses pump and added to waiting list

Stage 3 Attends diabetes day unit for group or 1:1 start on pump. Follows training programme over 2 days.. (see Pump Book)

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Insulin Pump Workbook for Children and families: This has been prepared by the Leeds Team for the Y&H SHA and is in use in centres around the country. It was designed for use by parents, teenagers and staff when introducing the insulin pump.

Admissions Information

Review of Children and Young People Admissions (D12-1D-106) All in-patients admissions are discussed at the weekly MDT Action Log meetings. This is to share information across the team and discuss the management of these children and young people. Actions identified and taken are documented on the Action Log.

Patient and Carer Feedback and Involvement

Patient and Carer Information (D12-2A-120, 121) Provision of patient written information 1. At time of diagnosis the patient are given a diabetes workbook containing information on

key areas of management including:

Brief description of the condition and its impact

Treatment

Management of high & low blood glucose

‘Sick day Rules’ – management during illness

Lifestyle advice

Nutritional advice

Possible complications

Travel advice

Local support groups

Where to go for further information including websites 2. Patients/Parents are sent a summary of their OPD discussion (A5 card) in clinic with

agreed aims and objectives. 3. There is a personal website for children and young people (www.upbete.co.uk). 4. Selective information on meter and pump downloads are given on request at clinic

appointment.

Web site: The Leeds team have a web site and support service for children with diabetes (www.upbete.co.uk) This contains resource library with all down loadable information as well a forum, news items etc.

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Training of Patients

Education (D12-2A-126,127) The aim of the Leeds team is provide consistent high quality education from the time of diagnosis such that the individual can eventually manage their diabetes with confidence and fit it into their lives. Education is tailored to both the individual diagnosed with diabetes and to the family and other relatives where necessary and schools/cubs etc. An outline of the structured education programme is attached in Appendix I. Ward staff will start the education programme on injection technique, blood testing and basic carbohydrate counting. The diabetes team will see the patient within 24 hours (except at weekends) and initiate the formal structured programme. The Diabetes Management System templates contain the different sessions and they are signed off after satisfactory completion. All patients are given a Diabetes workbook at diagnosis covering specific aspects of diabetes management and an explanation of the cause of diabetes. Structured education will continue at home and specific topics such as travel etc will be covered when necessary. At diagnosis, all children and young people and their family are seen by a dietitian on the wards Topics such as healthy eating and the principles of carbohydrate counting are taught with opportunities to practice this before discharge home. Completion of these sessions are documented on the electronic Diabetes Management System. The Leeds team is involved with Myknowledgemap and University of Leeds Education Unit in developing a personalised and age appropriate learning web programme, Upbete (www.upbete.co.uk), for all children with diabetes and this was launched in January 2012. The Childrens diabetes team resources are all available to download from this site. A series of ongoing structured education sessions for different age groups are being developed by the diabetes team as part of the regional network initiative. Examples of teaching plans are available on the network drive and are linked to key stages in school.

Learning Hub The Diabetes team have space next to outpatient and their administrative offices to develop an educational and learning facility for children, families and staff. This has been funded via the Special Trustees and families who have raised money. It consists of:

1. Large teaching room for group teaching, meetings etc with white board and projection facilities, tables chairs etc..

2. One small teaching room for individual teaching with computer and projection facilities.

3. Space for breakout sessions and relaxing 4. Coffee/Tea facilities.

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Appendices Appendix A Service specification Appendix B Intra net based Diabetes protocols. Appendix C Protocol Book. Appendix D Pump workbook. Appendix E School Education book Appendix F Terms of Reference Appendix G DNA Policy Appendix H High HbA1c Policy Appendix I Structured Education Programme Appendix J CPD/PDP for MDT members Appendix K BPT Dashboard Appendix L Anonymised Clinic Template Appendix M PREMS Appendix N NPDA 2011/12 data in 2013 report Appendix O Transition policy Appendix P Advice Line Rota & contact sheet

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