Paediatric Diabetes Service Operational Policy

Transcription

1 Paediatric Diabetes Service Operational Policy Department / Service: Paediatric Diabetes Service Originator: Dr John Scanlon Diane Cluley PDSN Accountable Director: Dr Andrew Short Approved by: Paediatric Clinical Governance Committee Date of approval: 6 th February 2014 Extension approved on: 22 nd July 2015 First Revision Due: 6 th February 2017 Target Organisation(s) Worcestershire Acute Hospitals NHS Trust Target Departments Paediatrics Target staff categories All staff caring for children-young people with diabetes Policy Overview: This policy aims to provide a comprehensive overview of all aspects of the service provided across Worcestershire for Children and young people with diabetes. Key amendments to this Document: Date Amendment By: Policy approved by Paediatric Clinical Governance Committee Minor amendments to staff numbers and whole time equivalent hours to reflect current staffing for service delivery on page 3. Dietetic services page 7. Grammar altered to reflect two members of staff now involved. n attending families and High HbA1c guideline on page 7 changed to reflect new two separate guidelines and relevant numbers now in place rather than the original joint single guideline. Diane Cluley & Dr John Scanlon Page 10 Referral to other services, again grammar altered to reflect two people in post and updated WTE Document extended for 12 months as per TMC paper approved on 22 nd July 2015 TMC WAHT-PAE-090 Page 1 of 15 Version 1.2

2 Contents page: 1. Introduction 2. Scope of this document 3. Definitions 4. Responsibility and Duties 5. Policy detail 6. Implementation of key document 6.1 Plan for implementation 6.2 Dissemination 6.3 Training and awareness 7. Monitoring and compliance 8. Policy review 9. References 10. Background 10.1 Equality requirements 10.2 Financial Risk Assessment 10.3 Consultation Process 10.4 Approval Process Appendices Supporting Documents Supporting Document 1 Supporting Document 2 Equality Impact Assessment Financial Risk Assessment WAHT-PAE-090 Page 2 of 15 Version 1.2

3 1. Introduction The purpose of this document is to provide a comprehensive written guide of services offered to children and young people with diabetes in Worcestershire. It also intends to clarify individual roles within the team and responsibilities. The service currently supports 280 children and young people (CYP) up to years of age within Worcestershire but also including a small number of Warwickshire and other out of area CYP. This policy combines existing service delivery guidelines 2. Scope of this document This policy describes a current overview of the Paediatric Diabetes Service delivery. 3. Definitions Children and young people CYP Paediatric Diabetes Specialist Nurse PDSN 4. Responsibility and Duties This operation policy lays out the core principles and delivery of service for the key members of the Diabetes Team. Team members include: 2 Consultant Paediatricians with a special interest with diabetes (almost 1WTE for diabetes). WTE 4.2 Paediatric Diabetes Specialist Nurses (PDSN s), WTE 1.1 paediatric diabetes dietitian and WTE 0.8 psychologist. It also includes service delivery for medical/nursing staff that comes in to contact with children and young people with diabetes for out of hours advice, inpatient management or the hospital at home service (Orchard service). 5. Policy content Referral and initial treatment Any CYP up to their 18 th birthday, suspected of having diabetes, should be referred to the on call Consultant Paediatrician or Registrar on the same day at their local hospital A & E or paediatric unit (Worcester Royal Hospital or the Alexandra Hospital) for prompt further investigation and treatment. Failure of same day referral will be reported and investigated as a clinical incident. There will be some 17 year olds whose GPs deem very grown up and who would prefer to be referred directly to the adult diabetes service in the county. Investigation will be commenced as in the current guideline: WAHT-PAE-063 Guidance on the management of Children and Adolescents with newly diagnosed Type 1 diabetes. If not in diabetic ketoacidosis (DKA), the CYP will continue to follow the planned pathway in this policy. If the CYP is in diabetic ketoacidosis the guideline: WAHT-PAE-037 British Society of Paediatric Endocrinology and Diabetes (BSPED) Recommended DKA guidelines will be used until stable. CYP with only slightly raised blood glucose levels will be discussed with the consultant paediatrician and will be investigated, and treated if necessary, on an outpatient basis. This will WAHT-PAE-090 Page 3 of 15 Version 1.2

4 include CYP with Type 2 diabetes, various genetic abnormalities and syndromes of which diabetes is a part. Copies of all policies are available on the intranet and as hard copies in the ward information folders. The consultant with a special interest with diabetes or another member of the team will be contacted within 24 hours of admission to discuss management. The CYP will be seen by a member of the multidisciplinary paediatric diabetes team on the next working day. The CYP will have contact with the dietitian within a week of diagnosis. Written information will be given regarding the principle of healthy eating and diabetes by the PDSN s early on in contact with the CYP. Early discharge is encouraged unless there are social or home issues. It should be confirmed that support is available from the PDSNs or Orchard Service prior to discharge. Daily contact either as a visit or telephone call as appropriate will be maintained for 7 consecutive days by Orchard service/pdsns. Ongoing initial education will be delivered by the PDSNs and dietitian over the next 4-8 weeks at a pace to suit individual family abilities. This will include written information on relevant topics given in an A4 folder entitled Living with diabetes. This folder also contains information on the local Diabetes team and how and who to contact for advice. All families in the South and rth West of the county will also be offered initial home visits by the consultant paediatrician with a special interest in diabetes. Follow up after this period will be based on the Best Practice Tariff of 4 multidisciplinary clinics per year together with an additional 8 contacts by telephone or home visit. For an overview algorithm of the care pathway for newly diagnosed and continuing care for CYP with diabetes see appendix 1 WAHT-PAE-090 Page 4 of 15 Version 1.2

5 Worcestershire Acute Hospitals NHS Trust Care Pathway Algorithm for Children and Young People with suspected Type 1 Diabetes Suspected Diabetes in Community Symptoms : Polyuria, polydipsia, Tiredness and Weight loss Procedure : Capillary blood glucose Suspected diabetes with random Blood Glucose of 11mmol/l. Check blood or urine ketones and refer as suspected DKA urgently to Acute Paediatric Unit. Observe for symptoms of nausea/vomiting, abdominal pain and signs of Kussmaul breathing, drowsiness or confusion. Refer immediately (same day) to on -c all senior paediatrician and consider ambulance admission to A&E if necessary. Child with probable ketoacidosis and in need of emergency medical attention in Acute setting. Start investigations and treatment as per Local Guideline for Newly diagnosed T ype 1 diabetes. Discuss with senior member of the paediatric diabetes MDT within 24 hours of admission Child is ketoacidotic Confirm ketoacidosis state with blood gases as per New diagnosis / DKA Guideline Child is not ketoacidotic Treat immediately in accordance with BSPED/Local DKA Guideline. Commence subcutaneous insulin injections as per Newly Diagnosed Type 1 Diabetes Guideline Contact from PDSN/Orchard Service daily for first week of diagnosis post discharge Transition & education programme as per Guideline ONGOING EDUCATION AND REVIEW SYSTEMS Guideline for Clinic n attenders MDT Clinic 4x Year offered Home visits & telephone contact a further 8 contacts per year Extra Curricular Events: Xmas party, Activity Weekend, Teenage Sailing day. Annual Review including Retinopathy s eparate service age 12 years onwards Parent support group Guideline for High HbA1c support Education in group or individual every year (CASC ADE, Goals of Diabetes) Seen by a member of the Paediatric Diabetes MDT within the next working day (Consultant or PDSN) Initial structured education begins, hospital or home management where possible as per Guideline for newly diagnosed Type 1 Diabetes. Orchard service to support when appropriate. WAHT-PAE-090 Page 5 of 15 Version 1.2

6 24 hour Telephone Advice Service CYP and their families can contact the PDSN s during normal working hours 9-5pm Monday to Friday. All CYP and families have written information on the locality service and contact telephone numbers. There are many days when the PDSN s provide a later service to accommodate after school visits and group structured education and therefore are available for later calls. Out of hours there is a clear message for CYP to contact their local Children s ward, which has clear guidelines to ensure consistent appropriate advice both for urgent and more permanent/long term insulin adjustment. Guidelines to refer to: WAHT-PAE-039 Paediatric Diabetes Sick Day Management/hyperglycaemia and Ketosis in the community WAHT-PAE- 038 Nursing Protocol for insulin adjustment in the community Open access to the Paediatric Unit at each site All CYP have open access to the paediatric ward on the appropriate locality site when emergency issues potential or actual arise after assessment by prior telephone call. Three Monthly Reviews Three monthly reviews at the multidisciplinary clinic are offered to all CYP. This includes HbA1c measurement and discussion of target blood glucose levels and HbA1c. Insulin adjustment and dietary advice as necessary and timely lifestyle advice, dependant on the CYP stage of development. Agreed goals regarding management are made. Copies of the clinic letter are always sent to parents and serves as their personal health record. Annual Reviews In addition to the service for three monthly reviews there is further review of self care. This is also carried out by the PDSN s when contacting in the community. Annual blood screening takes place in accordance with the National Paediatric Diabetes Audit Standards. There is a foot examination and blood pressure is measured. As of January 2013 there is now more formal assessment of psychological well being with the use of two specific CYP questionnaires. For children aged 12 years and above urine for microalbuminuria screening, and confirmation of retinopathy screening also takes place. Retinopathy screening is a separate service, and children are referred to this by the PDSN s on diagnosis. Feedback to the Consultant paediatrician will then occur. School care plans are routinely done by the PDSN s at the time of need and updated on a yearly basis. Copies of these are contained in the nursing notes. Dietetic Services The two dietitians attend the multidisciplinary clinics across the County. There is cover from their dietetic colleagues at times of absence. The dietitians also invite the CYP once a year for a more formal dietary assessment. The principle paediatric diabetes dietitian has been in post since August It is hoped that her post will allow for group education sessions regarding carbohydrate counting and participation in our current structured education programme. However annual appointments this year have been taking up the majority of her time to achieve the best practice tariff. There has been limited WAHT-PAE-090 Page 6 of 15 Version 1.2

7 attendance at these appointments by families and this area of care will need to be reviewed more formerly later this year. n Attending families and High HbA1c Guidelines for both areas are in place: WAHT-PAE-102 Failure to attend guideline WAHT-PAE-103 High HbA1c guideline Hypoglycaemia There is currently a guideline to support staff in the correct management. WAHT-PAE-083 Management of Hypoglycaemia Surgery Guideline to support all professionals involved in place: WAHT-PAE-073 Management of children and adolescents with Diabetes requiring surgery Schools A joint guideline had been created with the support of Worcestershire County Council to encourage good practice and clarify the roles of all parties. This is available on the County Council schools health and safety Web site called Edulink as well as within our own organisation. WAHT-PAE- 085 Supporting children in schools Joint document with Worcestershire County Council PDSN s actively support and train school staff to deliver care and support to children with diabetes within nursery, school and college settings. Cover or absence The two consultants with a special interest in diabetes try to liaise and plan cross cover for annual leave, etc. All of the general paediatricians in the county are competent in the management of routine diabetic emergencies (DKA, severe hypos, etc.). However, they will occasionally contact the paediatrician with a special interest in diabetes, or colleagues at Birmingham Children s Hospital in more unusual situations. Structured Education Semi-structured education is offered at diagnosis using a checklist proforma within the nursing notes documentation. This is consolidated with written information given in a timely way within an A4 folder for families called Living with Diabetes. This folder can also act as their personal care record and families are encouraged to keep the copies of their clinic letters within this folder. Historically, educational issues (age adapted) have always been a part of routine outpatient appointments in the county (with notable success in relation to reducing admissions with severe hypoglycaemia by ensuring that discussions take place about alcohol and diabetes in all patients by 14 years of age). Ongoing education and topics are documented using the Goals of Diabetes. This is an age banded educational tool that identifies education given and also assesses self management in relation to individual developmental milestones. This is held in the nursing notes but can be completed by any of the team at the multidisciplinary clinic or at any other contact such as a home visit by the PDSN s. WAHT-PAE-090 Page 7 of 15 Version 1.2

8 In addition as from September 2012 a group education programme is running called CASCADE. This was initially a research programme in which The Worcestershire team took part in w the trial is complete, the programme can be used for our own CYP. This programme will be offered to a select group of young people between the ages of years. This involves 4 x two hour sessions each a month apart, and supports a motivational interviewing/psychology based approach to self-management of diabetes. A group structured education programme is also offered for insulin pump start. This involves a full day when starting the insulin pump and 2 further 2 hour follow up sessions for 2-8 insulin pump starts at a time. The aim of these sessions is for families to gain the most out of using the insulin pump, and to encourage self-management where possible in the titration and alterations of doses. New for 2013 a structured education programme for CYP starting on personal continuous blood glucose monitoring/cgm augmented insulin pump therapy. During late transition (16-17 years), if appropriate for the individual young people will be offered the opportunity to attend the adult DAFNE course. This course is for age 17 years and above and a key time to catch young people is the summer before they potentially leave for further education. Continuous Subcutaneous Insulin Infusion (CSII) Currently there is funding this financial year for 30 insulin pumps, and it is likely that this will be confirmed again for the next financial year. Although we have used all our quota of pumps, it is recognised by the team that the PDSN s have reached full capacity regarding how many CYP can be trained in one year. Negotiations with the commissioners have taken place to allow for an increased number of replacement pumps/upgrades also being needed over the next few years. See appendix 2 for flow chart regarding patient journey from assessment to starting an insulin pump and follow up CYP on a pump attend the usual multidisciplinary clinic. They are encouraged to download their insulin pump prior to clinic to help review their self management. Families can be in regular contact with the PDSN service by phone or e mail to assess pump downloads to optimise treatment management in between clinic appointments. Continuous Blood Glucose Monitoring (CBGM) There is a current trial and funding from January 2013 of 3-6 named patients who have a lot of difficulty in managing their diabetes to have continuous blood glucose monitoring initially for 3 months, and to extend if successful. Group education for these clients is currently being formulated and review of this part of the service will happened later in the year. In addition to this professional CBGM is carried out by the PDSN s on occasional CYP for diagnostic monitoring purposes. These occasional sensors are already provided through the paediatric budget. Transition and referral to adult services A transition guideline has been in place to formalise the transition process since September As well as documenting the patient journey there is also a pathway document which is held in the WAHT-PAE-090 Page 8 of 15 Version 1.2

9 nursing records to record education updates, assess if a young person is vulnerable and identify key workers on transfer. WAHT-PAE-086 Transition Adolescents and pregnancy Young women attending our clinics who become pregnant are immediately referred to the adult diabetes and obstetric (and midwifery) services for expert management of their pregnancy. If they are young enough, and choose to return to our service after their pregnancy, that would be possible although that seldom happens! Referral to other services The current paediatric diabetes team Clinical Psychologists are WTE 0.8. The current role started in October 2012 and is to support the team in managing low level psychology issues in an appropriate manner. They will occasionally see families for an assessment or consultation, or in some circumstances for brief, focused psychological interventions although this is a very limited resource and their current hours do not allow for any further patient contact. Referral to the Child and Adolescent Mental Health Service (CAMHS) occurs on a timely and need led basis by the Consultant, PDSN or Clinical Psychologist. The local CAMHS service is improving, but there are still times when we would like referrals to be dealt with more urgently! Podiatry can also be by timely referral from the Consultant or PDSN. Social services are accessed as necessary and the PDSNs actively attend Safeguarding meetings, Looked after child meetings, Child in need meetings and Common assessment framework multiagency meetings as required for individual CYP. WAHT-PAE-090 Page 9 of 15 Version 1.2

10 Paediatric Diabetes Insulin Pump Pathway Does the patient meet any of the three NICE (2008, TA151) criteria? 1: Attempts to reach target HbA1c of 58mmol/mol leads to disabling hypoglycaemia (see below). 2: HbA1c 69mmol/mol or above with MDI treatment despite the person carefully trying to manage their diabetes. 3: If treatment with multiple daily injections is not practical or not considered appropriate. Disabling hypoglycaemia (TA151): Disabling hypoglycaemia is when hypoglycaemic episodes occur frequently or without warning so that the person is constantly anxious about another episode occurring, which has a negative impact on their quality of life. Impaired hypoglycaemia awareness (Clarke 1995) Hypoglycaemia Fear Survey Worry sub scale (Cox et al, 1987). Initial assessment 1 Baseline information collection HbA1c Hypo awareness questionnaire Fear of hypo questionnaire Document why they meet NICE TA151 criteria 3 Agree and document goals for 6 months HbA1c target Reduction in hypo glycaemic score if appropriate Quality of Life 4 Outline expectations of patients and families 5 Family /CYP to complete online line training and print certificate (Medtronic pump only) 6 Family/CYP to complete dietetic review/carbohydrate counting if required 7 Three dates for pump training agreed in group or individual if circumstances dictate Group or individual session 1 1. Complete audit tool 2. Principles of pump therapy and functionality of pump 3. 2Setting up insulin pump with personalised settings 4. Infusion site management 5. Ketone Management and conversion back to MDI 6. Setting up care link account(medtronic), Pump data downloading (other pumps) 7. Hypoglycaemia management 8. Arrange download and follow up phone/visit for titration and first set change Group or Individual start preparation 1 Order pump via diabetes lead nurse and set up patient account 2 Send GP letter informing of pump start and to obtain prescription for: Ketone strips 10ml vial of chosen insulin Countour test strips Quick acting pen Long acting pen 3 Send patient letter detailing dates of education, pick up prescription and what to do with background insulin dose prior to start. Also to complete online training (Medtronic only) 4 Work out settings via starting dose calculator WAHT-PAE-090 Page 10 of 15 Version 1.2

11 Group or individual session 2 (1 week post pump start) Download pump to assess progress and titrate doses Education on: Advanced bolus options Travel and safety information Basic Guide to exercise Arrange download and phone follow up Group or individual session 3 (4 Weeks post pump start) Download pump and assess progress Education on: How to assess and make changes at home by interpreting reports on data available How to manage alcohol on pump therapy Testing and modifying basal rate Arrange further download and follow up Six month assessment Download Pump at clinic, or families to do before if able. Repeat baseline measurement and complete audit tool HbA1c Hypo awareness questionnaire Have goals been met? Yes continue with pump therapy consider: 1. Time extension to achieve goals 2. Pump holiday to 2 weeks and reassess 3. Return to injections WAHT-PAE-090 Page 11 of 15 Version 1.2

12 6. Implementation This policy is documenting current practice within the paediatric diabetes service and therefore is already being implemented. 6.1 Plan for implementation Countywide paediatric meetings, Paediatric Staff medical meetings, Diabetes Network meetings 6.2 Dissemination To the Paediatric Diabetes team and associated services coming into contact with CYP with diabetes 6.3 Training and awareness The training needs of the medical staff are identified in their annual appraisals and addressed as necessary with appropriate support for study leave. The training needs of the PDSNs are also identified annually and they are supported in attendance at appropriate meetings (ACDC, ttingham Paediatric Diabetes Conference, Pump training, etc.) All staff will attend mandatory training (listed in Analysis Appendix A of the Trusts Mandatory Training Policy.], which may include occasional, additional child abuse training. 7. Monitoring and compliance Annual audit of hospital and nursing notes: Every six months an audit of the quality of written notes and electronic discharge summaries is performed within the paediatric directorate to assess compliance with both national and trust standards. Occasionally, the patients notes assessed will include CYP with diabetes! A biannual audit of our performance against the National Guidelines for the management of DKA is performed. Other regular audits (e.g. to assess our performance in screening for Thyroid problems, Coeliac disease, microalbuminuria, etc.) are also performed. Recently all newly diagnosed children admitted in DKA are being reported to the PCT/GP commissioning groups as a clinical incident in the hope of reducing this complication of diabetes. WAHT-PAE-090 Page 12 of 15 Version 1.2

13 8. Policy Review The trust has a mechanism for automatic review of all guidelines whereby the main author is reminded of the need to update a guideline that it due for review by and then reminders +++ are sent if necessary! 9. References References: NICE Guidelines for the Management of Type 1 diabetes in children and adolescents DOH 2004 Best Practice Tariff Criteria Nice Guideline CSII therapy TA DOH Code: 10. Background 10.1 Consultation When any policy is written, it is circulated to all stakeholders for review and then discussed at a paediatric department clinical governance meeting before final approval Approval process Once approved at the directorate clinical governance meeting, final approval takes place within the trust s clinical governance committees and the documents are posted on the Intranet by clinical governance and risk management. A brief description of the approval check list is in appendix 1of the trust s clinical governance guidelines Equality requirements A brief description of the suggestions for equality assessment are found in appendix 2 of the trust s clinical governance guidelines Financial risk assessment A brief description of the suggestions for financial risk assessment can be found in appendix 3 of the trust s clinical governance guidelines. WAHT-PAE-090 Page 13 of 15 Version 1.2

14 Supporting Document 1 - Equality Impact Assessment Tool To be completed by the key document author and attached to key document when submitted to the appropriate committee for consideration and approval. 1. Does the policy/guidance affect one group less or more favourably than another on the basis of: Race Ethnic origins (including gypsies and travellers) Nationality Gender Culture Religion or belief Sexual orientation including lesbian, gay and bisexual people Yes/ Comments Age 2. Is there any evidence that some groups are affected differently? 3. If you have identified potential discrimination, are any exceptions valid, legal and/or justifiable? 4. Is the impact of the policy/guidance likely to be negative? 5. If so can the impact be avoided? 6. What alternatives are there to achieving the policy/guidance without the impact? 7. Can we reduce the impact by taking different action? ne It just describes what we do! If you have identified a potential discriminatory impact of this key document, please refer it to Assistant Manager of Human Resources, together with any suggestions as to the action required to avoid/reduce this impact. For advice in respect of answering the above questions, please contact Assistant Manager of Human Resources. WAHT-PAE-090 Page 14 of 15 Version 1.2

15 Policy Supporting Document 2 Financial Impact Assessment To be completed by the key document author and attached to key document when submitted to the appropriate committee for consideration and approval. Title of document: 1. Does the implementation of this document require any additional Capital resources 2. Does the implementation of this document require additional revenue Yes/ 3. Does the implementation of this document require additional manpower 4. Does the implementation of this document release any manpower costs through a change in practice 5. Are there additional staff training costs associated with implementing this document which cannot be delivered through current training programmes or allocated training times for staff t at the moment, but additional medical manpower will be required in due course Other comments: If the response to any of the above is yes, please complete a business case and which is signed by your Finance Manager and Directorate Manager for consideration by the Accountable Director before progressing to the relevant committee for approval WAHT-PAE-090 Page 15 of 15 Version 1.2