Scottish Paediatric Endocrine Group (SPEG) Clinical Network ANNUAL REPORT 2015/16

Transcription

1 Scottish Paediatric Endocrine Group (SPEG) Clinical Network ANNUAL REPORT 2015/16 Lead Clinician: Dr John Schulga Programme Manager: Hugh Kennedy

2 Contents Executive summary... 1 Introduction... 2 Aim/ Purpose/ Mission Statement of network... 2 Report against Workplan... 4 Plans for the year ahead Network governance Detailed Description of Progress over Reporting Period Workplan 2016/ Appendix 1: Network membership Appendix 2: Finance

3 Executive summary The Scottish Paediatric Endocrine Group (SPEG) has been designated as a National Managed Clinical Network since April The network encompasses endocrine and growth disorders in children and young people up to the age of 16 years. These children and young people may require specialist intervention which can be provided locally as well as in specialist centres. The vision of SPEG is that by collaboration and multi-disciplinary working, there will be a significant and continued improvement in the outcomes of children and young people with endocrine conditions. Between April 2015-March 2016 the network has matured and developed significantly. This report provides an overview of key achievements and plans for 2016/17. Achievements include the development and review of a number of patient information leaflets for both children and teenagers as well as new clinical guidelines; obtaining feedback from patients/parents regarding the clinical services; continuing to deliver against our education strategy and now starting to measure some of our agreed quality indicators. There has also been continued development of the SPEG website as the main source for all SPEG information for both professionals and patients and carers. Plans for 2016/17 include continuing to develop national guidelines; looking at alternative ways of collecting patient/carer feedback; continuing to complete our national register; measuring agreed indicators and developing additional quality indicators which may further highlight key areas for improvement on service delivery. Education remains a priority for the Network; building an extensive range of resources for both specialists and non-specialists across tertiary, secondary and primary care. Family engagement will also be a priority, a second Growth Hormone Family Event has been organised for May 2016, and there will be an audit of two patient information leaflets. Finally, SPEG will undergo review in , to ensure that it continues to meet its objectives and Scottish Government s core principles for networks. 1

4 2 Scottish Paediatric Endocrine Group (SPEG) National Managed Clinical Network: Annual report Introduction The Scottish Paediatric Endocrine Group (SPEG) Managed Clinical Network (MCN) was nationally designated in April Prior to this SPEG was an informal clinical network which met on a regular basis to discuss and agree on clinical issues, areas of research and to provide ongoing education. Paediatric Endocrinology is concerned with disorders of hormonal development and function. These include disorders of growth, puberty, and endocrine glandular disorders in glands such as the thyroid and adrenal glands. It is also concerned with disorders of bone and mineral metabolism. Endocrine disorders are wide ranging, can affect children of all ages and can be primary or secondary to other conditions. Many endocrine conditions can be managed by a general paediatrician with an interest in paediatric endocrinology. The management of rare or more complex conditions requires more specialist care at tertiary centres with direct access to specialist laboratory, radiology and other services. The current model of service delivery for specialised endocrine care involves a range of Multi-Disciplinary Teams (MDT) specialists including doctors, nurses, dieticians, clinical psychologists and biochemical laboratory and diagnostic imaging services. These services are mainly delivered from three regional centres with the majority of specialist care provided by specialist MDT in Glasgow and Edinburgh. With appropriate support from these specialist teams, children are managed in local centres in District General Hospitals with outreach by the tertiary centres through a system of shared care and/or joint clinics. The network supports paediatric endocrine services in improving standards of clinical care of children through the establishment of continuous education and training, guideline development, and quality improvement systems. Paediatric Endocrine Services are currently delivered in all health board areas in Scotland, with tertiary support from three regional centres (Aberdeen, Edinburgh and Glasgow). Paediatric Endocrinologists from RHSC Glasgow provide shared care support to Ayrshire & Arran, Clyde, Lanarkshire and Forth Valley health board areas. Paediatric Endocrinologists from RHSC Edinburgh provide shared care support to Dumfries & Galloway, Inverness, Fife, Tayside and Borders health board areas. Paediatric Endocrinologists from Aberdeen provide shared care support to Elgin. The network continues to develop; its role is to strengthen and develop specialist services for children with endocrine conditions across Scotland. Aim/ Purpose/ Mission Statement of network The overall key aims and objectives of the network are as follows: Establish and maintain effective systems and processes to support continuous quality improvement (CQI) including data collection and reporting, audit and research. Develop standardised care (protocols, guidelines and investigations) and referral pathways for specific conditions, promoting equity of care across the region and supporting District General Hospitals enabling care to take place locally, including joint/outreach clinics. Identify training needs and facilitate the design, development and delivery of education and training both for those directly involved in the client group as well as general paediatricians, AHP s and primary care colleagues. Promote local multidisciplinary meetings with access to teleconferencing to overcome difficulties in attending.

5 Develop and deliver a stakeholder communication and engagement strategy to support effective internal and external communication including the development and sharing of protocols and information leaflets, encouraging family and patient support group engagement and the development of a website. Facilitate links with other specialties. The designation objectives for the network are: To enable timely and effective care for paediatric endocrine patients across Scotland according to evidence-based, nationally-agreed procedures and guidelines. To enable provision of care for paediatric endocrine patients in as cost effective manner as possible. To establish and maintain effective systems and processes to facilitate and provide evidence of continuous improvement in the quality of care (CQI). To promote equity of access and service delivery at the most appropriate point of contact. To facilitate effective service interfaces and support good practice in multidisciplinary and interagency working both within the NMCN and associated service delivery. To facilitate the various strands of user involvement in service delivery and future planning of services. To engage with NHS managers and planners to support service development, improvement and redesign. To meet the core principles specified within extant SGHSCD guidance on managed clinical networks, currently CEL (2012) 29. 3

6 Report against Workplan Data In the past year, four of the SPEG quality standards have been measured. 1. Audit the use of CAS as a register of patients seen in the endocrine service (SPEG Quality Standard CG2) There has been a significant increase in the number of patients with endocrine disorders registered on CAS since last year. There are currently 1247 patients registered on the SPEG CAS Instance. This is an increase of 793 as at last year s annual report (63%). The network is resourcing additional work to support the data capture at Greater Glasgow and Clyde and it is anticipated that next year s report should see a much more accurate reflection. The following table shows the breakdown of patients registered at each Health Board. 4

7 Patient breakdown displayed geographically Numbers of patients in Scotland (in blue) with Endocrine conditions registered on CAS on a health board basis compared to the childhood population of these Health boards. 5

8 The table shows a wide variation when comparing numbers registered and childhood population. This suggests that it is likely that the data is not complete in CAS, possibly except for Tayside. NHS GGC and NHS Grampian are the most obvious examples of this anomaly. The chart below depicts the gender breakdown of the patients registered on the CAS. 2. Children and young people with endocrine disorders have access to the local DGH endocrine team. (SPEG Quality Standard SS1). Both reports below show that the majority of patients are being treated locally. 6

9 Table showing patient health board locations and treatment centres 7

10 Heat map depicting percentage of patients being treated in each Health Board area against their home health board 8

11 Break down of number of patients registered on the CAS with each condition the report below shows a large number (26.5%) of null values. This is unusual as most of the patients being presented at an endocrine clinic would have an initial suspected endocrine condition which could be recorded in the main condition field within CAS. Once a final diagnosis was made that would be recorded in the sub-condition fields. An exercise is scheduled to identify these exceptions and clean this data up. 9

12 Short Stature is the most common presenting condition from the data above, and it has been further analysed into sub-condition as follows:- 10

13 3. Turnaround time for reporting of 17-OHP result from central lab to local centre (SPEG Quality Standard RR4). Results below:- SPEG MCN Run Charts of Turnaround times of samples collected for 17-OHP January 2015 to March 2016 The top table represents the percentage of samples that meet the target (7 days) based on the timeline between the sample being taken at the local lab and the results being available at the tertiary lab. The bottom table is based on the timeline between the samples being recieved at the tertiary lab and results being available. The top table numbers could be increased if local labs became slicker at sending them to tertiary labs. The tertiary labs only run this test weekly as the condition they are testing for is so rare. Running them twice per week could increase the numbers reaching target. 11

14 4. There are shared care protocols and care pathways in place to support all children and young people with an endocrine condition who may require immediate treatment in an emergency situation (SPEG Quality Standard SS6) - Where appropriate, children with life-threatening endocrine disorders will have an emergency management plan that is shared by the family and /or carers and all health professionals. This will be updated on a regular basis. A medical alert Hazard Alert Sheet for Adrenal Suppressant patients has also been developed and finalised in liaison with the Scottish Ambulance Service (SAS) and held on their database. An audit has been carried out to ensure that all young people in Scotland with adrenal insufficiency have both an Emergency Care Plan (ECP) and a Hazard Alert Sheet. Results are as follows:- Health Boards who have responded Number of patients with Adrenal Insufficiency Number of these patients issued with an ECP Number of these patients with Hazard Alert Sheet on SAS 12 Fife Tayside Lothian Grampian Forth Valley Highland Lanarkshire Ayrshire The network will investigate why in some centres, not all patients have a Hazard Alert Sheet and also endeavour to collect information to those boards that have not yet responded. Finally, the network has produced a report analysing the results on Congenital Hypothyroidism Newborn Screening, based on data received from the Scottish Bloodspot Screening Laboratory. Findings show that during the period 2015/2016, 49,596 infants were screened. Off those who tested positive, 100% met the NBS target of being seen and management started within the 14 days standard. Of those whose initial test showed a borderline bloodspot TSH result, 100% received a follow-up test and those who screened positive were seen and management started within the standard of 21days. Patient Centred Care/ Family Engagement The SPEG Nurse Group continues to produce and review patient information leaflets for various conditions. A number of information leaflets relating to various endocrine tests have also been produced. All of these leaflets have been finalised, awarded a crystalmark from the Plain English Society and have been formatted using NSS Communications standards. They are all available on the SPEG website and are currently being printed for distribution to families and local teams. The network plans to review the value of some of these leaflets to families during the forthcoming year. The SPEG Transition sub-group have also developed and produced two patient information leaflets for teenagers which have gone through the same process. The SPEG QI sub-group have developed and agreed an information leaflet for parents/carers/patients regarding placing patient details on the Clinical Audit System (CAS). This

15 gives them information about CAS and the reasons why the patient data is being recorded. It also gives them the opportunity to opt-out and not have the patient information held on this system thus adhering to NHS Scotland s Information Governance Guidelines. A Patient Experience Questionnaire was developed as part of the Better Together Project to collect patients views and experiences at outpatient clinics. The purpose of gathering this feedback was to collate the feedback from across Scotland and identify areas of the service that families felt could be improved, with the aim of highlighting these areas to service providers. From the results conclusions drawn were that the vast majority of families felt that they were happy with the clinical service their child received. Examples of comments included that families felt that there was no delay in starting their child s treatment, their clinic experience was good had received enough information about their child s condition from the patient information leaflets and had good support from the endocrine staff. The only proviso that they felt could be improved was that most of them were unaware of psychology services. The Family Event Planning sub-group have organised a second family day focussing on Living with Growth Hormone Therapy at Edinburgh Zoo on Saturday, May 21 st There are 148 people registered for the event. This is following a successful first event held on 8th June 2014 at the same venue. The day will again involve a mixture of education workshops and fun for the families. The event will also be used to capture families concerns and needs which will be used to improve the quality of services to patients and their families and will be evaluated. This family day will be held annually looking at various conditions and will become an integral part of the SPEG MCN. SPEG are continuing to encourage parents and carers to be part of a parent/carer subgroup to feed into the SPEG Steering group. An additional parent representative has been recruited to the network adding to the parent representative and voluntary group representative we already have on the steering group. The network office has updated the 'getting involved leaflet which has been awarded a crystalmark and reformatted according to NSS Communications standards. This leaflet is currently being printed and will be distributed to families in clinics to encourage them to become involved in the network. Professional Education Education remains a priority for the network. The Education sub-group chaired by Dr John Schulga developed an Education Strategy based on the results of a Learning Needs Analysis (LNA) carried out during This strategy is available on the SPEG website has been used to navigate the educational events held by SPEG which include:- A National Endocrine Study Day organised for May 26 th This follows a successful study day held in October This event is aimed at general paediatricians and primary care and is part of a 5 year rolling programme to cover common endocrine conditions. The outcome of the first event on October 2013 was that resource materials were produced in order to be able to deliver growth workshops across Scotland in a standardised way. These materials are being used to develop learnpro modules for growth and maturation which are planned to be used as training materials for general paediatricians and primary care. There has already been some early development work started An annual scientific meeting was well attended in January The objective of this meeting is to provide updates regarding the latest research and development on treatments and management of various endocrine conditions. Highlights from the evaluation show that 30% of health professionals attending rated the event as good whilst 67% rated it excellent whilst 52 % rated it effective and 45% very effective. 13

16 The event was attended by 52 people, 35 feedback forms were completed (68%). The feedback received was split into the professional groups below. 14

17 The relevance of this CPD activity to the delegate s educational needs and the overall quality of education were thought to be of a high standard with each element being rated in the top two fields by over 95% as evidenced in the charts below. Relevance to Educational Needs 15

18 Overall Quality of Education offered 87% of attendees deemed the printed learning aims/objectives to be met with only 3% feeling that they were only partially met. 10% failed to provide an answer. All responders (100%) felt the event met their expectations. The following comments were made: Superb Meeting Excellent format. Good mix of longer sessions & short talks. Great subject mix. Well organised meeting, excellent as usual Great course with lots of relevant topics As seen above, the delegates were a good mix of different disciplines and overall, the majority (83%) felt that there was no bias or conflict of interest evident in the course. 16 There were two clinical and academic meetings throughout the year, which were also well attended. Videoconferencing facilities were available for these meetings. There were two Regional Education Sessions held in the West of Scotland. These sessions were hosted by local teams in district general hospitals and were clinically based around case presentations and case discussions. There has been a Nurses LNA developed and actioned. This was circulated to nurses across Scotland and focused on neonatal, school, community and general paediatric nurses as well as specialist endocrine nurses. The results will be used to develop a Nurse Education Strategy and Programme which will be implemented in 2016/2017.

19 Guidelines-Effective care The SPEG protocols sub group have developed two further guidelines, Obesity and Adrenarche and these have been endorsed by the steering group and published on the SPEG website. Two other guidelines have been developed through joint working with other networks and are currently in draft stage, septo-optic dysplasia (with VINCIP MCN) and hypoglycaemia acute management at presentation (with IMD MCN). The SPEG Transition sub group have also developed and published a Growth Hormone in transition position statement for adolescents on growth hormone therapy. Timely Care All areas in Scotland now have joint endocrine outreach clinics, so that patients can be cared for and seen nearer to home. Care pathways and guidelines have been developed to ensure that optimal care is provided for all patients, avoiding the need for delays due to appointments being made in tertiary centres, when patients can be seen locally. Plans for the year ahead The Network has identified a number of priority areas for 2016/17: Patient Centred Care- the Network plans to encourage more user involvement by developing a user sub-group that will report to the steering group on a regular basis. The network will continue to develop patient information leaflets for various endocrine conditions and also audit the impact of a few patient information leaflets that have been distributed to families. Patient /carer /patient feedback remain a priority and this will be gathered from the Growth Hormone Families Day and also by exploring the patient opinion website. Safe the network will continue to deliver against its education strategy through the continuation of existing programmes i.e. the annual education day, the annual scientific event, clinical academic meetings and local education sessions. New projects are also planned. A nurse education programme will be implemented. Learnpro modules are currently being developed for growth and maturation training. Effective guidelines for septo-optic dysplasia and hypoglycaemia will be finalised and published. The Congenital Hypothyroidism guideline will be reviewed and updated. Future protocols/guidelines/pathways to be written in line with the guidelines group workplan include Neonatal Thyrotoxicosis, Precocious Puberty and Vitamin D deficiency. Transition services will continue to be developed in all centres. Finally plans are in place to standardise the guideline development process within SPEG. Efficient-there will be the continued use of the CAS system and Tableau software to measure Quality Standards CG2 and SS1. Turnaround times for reporting 17-OHP from regional biochemistry laboratory will continue to be monitored and reviewed as will ensuring whether there are shared care protocols and care pathways in place to support all children and young people with an endocrine condition who may require immediate treatment in an emergency situation. Finally, the network will continue to look at the follow up of infants diagnosed with congenital hypothyroidism through newborn screening. 17 Equitable/Timely-shared care protocols will be developed to enable care to take place more locally. The SPEG website and Managed Knowledge Network will also continue to be developed and

20 updated to give stakeholders access to these documents and all other relevant SPEG information. Finally, the network will relaunch the newsletter and develop a formal communications and engagement strategy. A more detailed report is supplied in the Workplan shown after the workplan. Network governance The network is overseen by a multidisciplinary steering group. The purpose of the SPEG Steering Group is to support and steer the development of the network and ensure that progress continues against the agreed workplan throughout the year. The Steering Group meets three times each year and is chaired by Dr Chris Kelly, Consultant Endocrinologist from NHS Forth Valley. Steering Group members also have a key role to play in ensuring effective two way communication between the Network and the local teams of clinicians. As of 1 st April 2014 SPEG is under the management of the National Network Management Service in National Specialist Screening Division. Through the management structure and terms of reference for the network Steering Group and sub-groups, SPEG meets the core principles of managed clinical networks as set out in CEL (2012) 29. Workplans and reports are published on the network website, and any documents produced by the network are publically available for clinicians and patients to view. 18

21 Detailed Description of Progress over Reporting Period SCOTTISH PEDIATRIC ENDOCRINE GROUP Network Aims MANAGED CLINICAL NETWORK WORKPLAN To promote service delivery at the most local point of contact supported by agreed clinical standards and service model To facilitate effective service interfaces and support good practice in multidisciplinary and interagency working in the establishment of a NMCN and the service delivery associated with it. To facilitate the various strands of user involvement in service delivery and future planning of services (including detailed public involvement framework) as indicated in HDL MCN guidelines and other associated MCN best practice documentation. To provide effective governance framework for all strands of clinical practice including indicators of improved clinical effectiveness and research and development practices through establishment of the network. RAG status key RAG status RED (R) AMBER (A) GREEN (G) Description Little/no progress been made to date to achieving network objective/standard Significant progress been made to date to achieving network objective/standard, however further work is required to fully achieve the network objective The network has been successful in achieving the network objective/standard Objective Planned start/end Responsible Description of progress Outcome/ RAG 19

22 dates towards meeting objective evidence status Patient Centred: Providing Care that is responsive to individual preferences, needs and values and assuring that patient values guide all clinical decisions. Family Involvement Improved engagement with patients and carers April 2015 ongoing Network members Getting Involved leaflet finalised. Network members contacted to nominate possible representatives from each region. Available from Network Office. G One parent and one voluntary group member previously recruited to steering group. One additional parent recruited as network member and allowing initiation of family support subgroup A Gathering of Patient Experience information April 2015 ongoing Network Office/Nurses Sub Group Patient/family feedback gathered using "Better Together" project to gather feedback at clinics from questionnaires. Information has been collected and analysed Results show that overall families satisfied with endocrine service. Report available from Network Office G Development of information leaflets for parents/carers/patients/education on April 2015 ongoing Network Office/Nurses Sub Group 20 Various leaflets produced, reviewed and endorsed- Information for parents/carers on the following endocrine Available from

23 conditions covered by the network. conditions:- Adrenal Insufficiency-a guide for parents Adrenal Insufficiency a guide for school nurses and teachers Adrenarche patient information booklet Precocious Puberty in girls-a guide for parents Steroid Replacement Management Plan-for parents MCN Office and posted on SPEG website. G Information for parents and carers on the following endocrine tests:- Arginine, GnRH, Synacthen, Prolonged hcg, Insulin Tolerance Test. Information for teenagers:- Adrenal Insufficiency-a guide for teenagers Steroid Replacement Management Plan-for teenagers. Info available from network office. Organisation of a Family Day for patients, carers and their families April 2015 ongoing Network Office/Family Event Support Group 2 nd Family Event for GH patients organised for May 21 st G Safe: Avoiding injuries to patients from care that is intended to help them Objective Planned start/ end Responsible Description of progress towards meeting objective Outcome/ evidence RAG statu 21

24 dates s The network will develop an Education Strategy to ensure a high standard of education and training for all health professionals involved in the care of children with endocrine conditionsthis will include:- Identifying training needs and facilitate the design, development and delivery of education and training Promotion of national and local multidisciplinary meetings with access to teleconferencing to overcome difficulties in attending Promote opportunities to develop knowledge, skills and competencies both for those directly involved in the client group as well as general practitioners, AHPs and primary care colleagues April 2015 Ongoing Education sub- group Continued Implementation of the Education Strategy. The education strategy has been agreed, and approved, and is used to navigate the educational events held by SPEG. An annual national education day for general paediatricians and primary care organised for May A national annual scientific meeting of SPEG MCN members was held on Jan for clinicians working in endocrinology. Regular Clinical and Academic Meeting (CAM)held twice per year Final programme and plans available from Network Office Programme and Evaluation available from Network Office G G G Development of learnpro modules on growth and maturation training for primary and secondary care cliniciansthis is work-in-progress. Training materials have been developed meetings with learn-pro arranged to transfer materials to learn-pro training modules A 22

25 Regional Education Sessions held in Lanarkshire and Ayrshire, to be held twice a year in each region, hosted by local teams in rotation West of Scotland have held 2 Regional Sessions to date A Effective: Providing services based on scientific knowledge Development of education programme for nurses Nurses LNA performed to determine nurses educational needs Nurses LNA and analysis available from Network Office A Objective Planned start/ end dates Responsible Description of progress towards meeting objective Outcome/ evidence RAG status The network will continue to standardise care of children with endocrine conditions by developing nationally agreed clinical guidelines. 2015/16 Ongoing Protocols/Guideline s group Protocols/Guidelines/Pathway s completed and available on SPEG website:- o Management of Childhood Obesity On SPEG Website G The network will work to agreed guidelines and protocols to ensure all patients receive the same standard of care for their condition regardless of where they live The network is committed to continuous quality improvement of o Adrenarche Protocols/Guidelines/Pathway s in draft and awaiting completion:- o Septo Optic Dysplasia o Hypoglycaemia acute These have been progressed with engagement and joint- A 23

26 patient care. The network will measure the outcomes of the endocrine services across Scotland against agreed standards of care. management at presentation working with VINCYP and IMD networksdrafts available The network will have as one of its main aims, a culture of ongoing research involvement and reporting on research activity, aiming to further improve endocrine care. 2 x annually Ongoing Education Sub- Group Clinical & Academic Meetings (CAM) will focus on research and guideline development. 2014/15 meeting dates arranged, all with V/C. G Efficient: Avoiding waste, including waste of equipment, supplies, energy and ideas. Objective Planned start/ end dates Responsible Description of progress towards meeting objective Outcome/ evidence RAG status The network will measure the outcomes of the endocrine services across Scotland against agreed standards of care The Endocrine Clinical Audit System (CAS) will continue to be developed as a means of recording and auditing services outcomes. Network has reviewed and adapted British Society of Paediatric Endocrinology Standards (BSPED) of Care and developed and agreed Quality April ongoing QI/IT sub-group 4 QI s have been measured Audit the use of CAS as a register of patients seen in the endocrine service (SPEG Quality Standard CG2)- 2. All children and young people with endocrine disorders have access to the local DGH endocrine team.(speg Quality Standard SS1)- See main G

27 Indicators for each standard. 3. Turnaround time for reporting of 17-OHP result from central lab to local centre (SPEG Quality Standard RR4) body of report for data 4. There are shared care protocols and care pathways in place to support all children and young people with an endocrine condition who may require immediate treatment in an emergency situation (SPEG Quality Standard SS6) - Two questionnaires have been developed to audit the use and usefulness of patient information leaflets. 1)Adrenal Insufficiency- Information for School Nurses and Teachers 2)Adrenarche-Information for Parents/Carers A report on Congenital Hypothyroidism newborn screening results has been produced by the SPEG network based on information received by the Scottish Bloodspot Screening Laboratory. These are available from the Network Office. Available from Network Office G G 25

28 Equitable: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or economic status Benchmarking Service mapping exercise to be completed and reviewed on a regular basis. April Ongoing Lead Clinician/Network Manager Site Visits completed 2014/2015 for all sites apart from Borders. Data gathered on Service resources/issues and Service map produced to benchmark across Scotland. Report finalised 2015/2016.Plan to visit Borders 2016/2017. Information available from Network Office- G Clear communication between multidisciplinary teams and patients and families. An equality and diversity impact assessment is undertaken every 3 year. This results in changes to delivery to NHS boards. April ongoing April ongoing Lead Clinician/Network Manager Informal communication strategy developed to support effective internal and external communication including Development and sharing of protocols and information leaflets through the SPEG website and other means. All information leaflets for patients or parents/carers and record books will be available, on request, in languages other than English. Consideration is taken to ensure all meetings/events are accessible for those with disabilities and other special needs. Website updated and relaunched Nov used to publicise all work of network. Also to inform of national meetingscontinued to be updated 2015/2016. G 26

29 Transition Transition is a key workstream for the network The network will develop services which demonstrate compassion, continuity of care, clear communication and shared decision April ongoing Transition subgroup Completion and ratification of Adrenal Insufficiency leaflet and Steroid Management Plan for teenagers-awarded crystalmark from Plain English Society and reformatted using NSS Communications standards. Available on SPEG website G making Completion of Growth Hormone in transition position statement standard. Timely: Reduce waits and sometimes harmful delays for both those who receive care and those who give care The network aims to ensure the patient care is delivered as close to home where possible and that waiting times and potentially harmful delays are reduced. April ongoing Protocols/Guideline s group All areas have local clinics and tertiary outreach clinics. Care pathways and guidelines have been developed to ensure that optimal care is provided for all patients, avoiding the need for delays due to appointments being made in tertiary centres, when patients can be seen locally. Available on SPEG website G 27

30 2016/2017 Workplan Scottish Paediatric Endocrine Group Objective Number SMART Objective Linked Dimensions of Quality Planned start/ end dates Detailed Plan Available / Owner Description of progress towards meeting objective as at 31/03/2016 Anticipated Outcome RAGB status SPEG SPEG Deliver equitable care as close to home as possible:- Develop and place on the SPEG website standardised guidelines All centres to have tertiary outreach clinics provided locally Measure QI s to support continuous quality improvement (CQI) 2,3,4,5,6 01/05/ /03/2017 3,4,5,6 01/04/ /03/2017 Yes /Protocols Sub Group Yes /QI Sub Group /Nurses Sub Group/Network Office Some guidelines are currently in draft:- Septo-optic dysplasia Hypoglycaemia Congenital Hypothyroidism 4 QI s have begun to be measured. Promoting equity of care across Scotland and ensuring endocrine patients are treated according to the latest evidence based practice. Evidence provided of Continuous Quality Improvement. SPEG Continued Implementation of the SPEG Education 2,3,5 01/04/ /03/2017 Yes /Education Sub-group Annual education event Staff delivering endocrine services have 28

31 Objective Number SMART Objective Linked Dimensions of Quality Planned start/ end dates Detailed Plan Available / Owner Description of progress towards meeting objective as at 31/03/2016 Anticipated Outcome RAGB status Strategy:- An annual national education day and annual scientific meeting. 2 Clinical and Academic Meetings Development of learnpro modules on growth and maturation training for primary and secondary care clinicians. organised, Initial work has been done on learn-pro West of Scotland has held 2 Regional Sessions to date. Nurses LNA completed and analysed increased skills and knowledge. Regional Education Sessions to be held twice a year in each region, hosted by local teams in rotation Development of education programme for 29

32 Objective Number SMART Objective Linked Dimensions of Quality Planned start/ end dates Detailed Plan Available / Owner Description of progress towards meeting objective as at 31/03/2016 Anticipated Outcome RAGB status nurses. SPEG Further develop communications strategy:- Involve families/ support groups/ other stakeholders in the network through:- Re-issue of getting involved leaflet 1,2 01/04/ /03/2017 Yes /Family Support subgroup/nurses Sub- Group All leaflets developed, approved by network and on SPEG website. Family Event organised Improved stakeholder engagement, reflecting their needs in service decision making. Providing information to patients/parents /carers on their conditions. Development of family support group Hosting a family day. Explore the use of the patient opinion website. Ongoing development of website and relaunch 30

33 Objective Number SMART Objective Linked Dimensions of Quality Planned start/ end dates Detailed Plan Available / Owner Description of progress towards meeting objective as at 31/03/2016 Anticipated Outcome RAGB status of newsletter. Continue to develop patient information leaflets and audit impact of 2 existing leaflets SPEG Benchmarkingupdate and maintain Service Directory annually. 01/04/ /03/2017 Yes /John Schulga/Hugh Kennedy Site Visits completed for all sites apart from one and report available. Data gathered on Service resources/issue s and Service map produced to benchmark across Scotland. Plan to repeat exercise Providing equitable care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or economic status 31

34 Workplan Key Please develop and update the table below to include the network s designation objectives and related agreed annual objectives. When planning for the year ahead, please consider the standard statements in the guidance section to inform the development of annual network objectives. RAG status key RAG status RED (R) AMBER (A) GREEN (G) BLUE (B) Description The network is unlikely to achieve the objective/standard within the agreed timescale There is a risk that the network will not achieve the objective/standard within the agreed timescale, however progress has been made The network is on track to achieve the objective/standard within the agreed timescale The network has been successful in achieving the network objective/standard to plan The Institute of Medicine s six dimensions of quality are central to NHS Scotland s approach to systems-based healthcare quality improvement; therefore objectives should be linked to these dimensions: 1. Person-centred: providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions; 2. Safe: avoiding injuries to patients from healthcare that is intended to help them; 3. Effective: providing services based on scientific knowledge; 4. Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy; 5. Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status; and 6. Timely: reducing waits and sometimes harmful delays for both those who receive care and those who give care. 32

35 Appendix 1: Network membership Scottish Paediatric Endocrine Group (SPEG)-Steering Group Name Designation Health Board Area Dr Christopher Kelly (Chair) Consultant Adult Endocrinologist Forth Valley Dr John Schulga (Lead Clinician) Consultant Paediatrician Forth Valley Dr Guftar Shaikh Consultant Paediatric Endocrinologist Greater Glasgow & Clyde Dr Paula Midgley Consultant Neonatologist Lothian Dr Louise Bath Consultant Paediatric Endocrinologist Lothian Dr Colin Perry Consultant Paediatric Endocrinologist Greater Glasgow & Clyde Dr Jane McNeilly Consultant Biochemist Greater Glasgow & Clyde Dr Amalia Mayo Consultant Paediatrician Grampian Dr Nick Conway Consultant Paediatrician Tayside Dr George Farmer Consultant Paediatrician Highland Dr Ian Hunter Consultant Paediatrician Lanarkshire Dr Scott Williamson Consultant Paediatrician Ayrshire Dr Loveline Ayuk Consultant Paediatrician Dumfries and Galloway Dr Graeme Eunson Consultant Paediatrician Borders Barbara Wardhaugh Paediatric Endocrine Nurse Specialist Lothian Ethel McNeil Paediatric Endocrine Nurse Specialist Greater Glasgow & Clyde Jacquie Reid Paediatric Endocrine Nurse Specialist Grampian Jill Gibb Paediatric Endocrine Nurse Specialist Tayside Daniel Purton Paediatric Endocrine Nurse Lanarkshire Angela Toruntay Paediatric Endocrine Nurse Fife Anne Rock Paediatric Endocrine Nurse Ayrshire Emily Gate Paediatric Endocrine Nurse Specialist Highland Julie Lucas Paediatric Endocrine Nurse Specialist Forth Valley Laura Morrison Paediatric Endocrine Nurse Dumfries and Galloway Ruth Magowan Paediatric Endocrine Nurse Borders 33

36 Arlene Smyth Alison Kilgour Family support group representative Patient and carer representative Hugh Kennedy Network Manager National Services Division 34

37 Appendix 2: Finance 3BFinancial Report SPEG receives an annual budgetary allocation of 5000 from NSD to support the Network running costs. The following is a breakdown of the expenditure of the budget for April 2015 March Description Cost Other Provisions 60 Other Printing & Stationary 454 Hire of Rooms for Meetings 833 Travel/Conferences 282 Total