1. National Managed Clinical Network (NMCN) Progress NDP Implementation Group 10 March 2010

2. National Delivery Plan for Children and Young People’s Specialist Services in Scotland (2009) (NDP) Increased utilisation of MCN model –Shared good practice –Service development –Data gathering and audit –User engagement Support creation of 4 National MCN’s –Cystic fibrosis –Rheumatology –Endocrinology –Complex health needs

3. NMCN role in supporting improvement in quality of patient care What Generic HDL’s Service specific Review findings Draft NSAG applications NDP Standards How and when Generic SLA’s Role of NSD Lessons learned Service specific NDP proposals Workplan

4. Cystic Fibrosis NMCN Organisation: –Lead clinician and Manager appointed by December 2009 –Steering group membership and structure agreed January 2010 Workstreams: 1.Data/Information 2.Evidence base for change 3.Service improvements/Education &training 4.Policy/planning Formal launch event – 7 May 2010

5. Rheumatology NMCN

6. Organisation: –Successful Network Launch April 2009 in Glasgow –Annual Network meeting - 2010 to be held in Inverness –Steering Group established and dates for this year confirmed –Terms of reference agreed –6 Workstreams Communication Group –Logo competition held among patients. Network Logo and acronym agreed. –Website now live, some content still to be added –First newsletter almost ready to go out. Service Mapping Group –Detailed mapping of services and staffing around Scotland undertaken and now completed – site visits by Lead clinician and manager –Working with local teams to support implementation of posts funded by Y1+2 of NDP –Revisit mapping once NDP funded posts have been filled

7. Standards and Guidelines Group –BSPAR (UK) JIA Standards of Care adopted by network –Joint meeting held with members of Uveitis network: –Joint Guidelines for Management of JIA associated uveitis developed –Survey of Joint Injection Practice around Scotland - to be presented at annual meeting to inform development of a pathway Transition Group –Work has begun on a medication booklet Dataset and Quality Outcomes Group –Dataset agreed within network –Standardised clinic data gathering sheet/ Standardised scoring card developed and in use in most network clinics –Multidisciplinary teams in all network centres, informed by an appropriate range of care pathways and protocols

8. Education and Training Group –JIA event for nurses/AHPs planned for Autumn, original January date rescheduled due to study leave problems –LNA to be completed for all professional groups –MKN site under development Patient Involvement Group –Well established links with Scottish Network for Arthritis in Children (SNAC) with representative on Steering Group –Working with SNAC to improve access for all families –Supported SNAC in organisation of parent information day November 2009 –Families Event organised for Crieff Hydro in April 2010 – will encompass education –Independence break for younger teenagers with arthritis in network held September 2009 and again 2010 –Other patient groups as well as JIA

9. Endocrine NMCN

10. Organisation –Successful launch event May 2009 in Edinburgh –Steering group established and dates agreed for the rest of the year –Communication strategy / stakeholder analysis complete –Service directory complete User Involvement –“Getting Involved” leaflet done and now available across all endocrine clinics. Aim to have a data base of people who wish to be involved. –Voluntary sector representation on the steering group Patient Information –Review underway of all the patient information currently used across Scotland with a view to developing a comprehensive, standardised range. Priorities are Congenital Hypothyroidism, Precocious puberty, Steroid replacement.

11. Quality Indicators –Quality Indicators finalised and linked to ISD and Newborn Bloodspot work –Baselines established for Congenital Hypothyroidism (CHT) using existing CHT database Education –Existing SPEG incorporated into NMCN as Education Workstream -audit and research. Education event on growth and maturation held in Dec – further education events planned across the country. –Learning needs analysis underway – end March 2010. –Telemedicine RHSCG to host weekly education meetings. Attendance monitored as a quality indicator. Weekly case discussions between RHSCG and RHSCE. Protocols / Guidelines –Questionnaire issued to Biochemistry labs and clinicians to ascertain current diagnostic criteria and protocols in use and gaps- end of March 2010

12. Children with Exceptional Healthcare Needs NMCN

13. Service users: parents and carers Voluntary sector Nursing staff Paediatric consultants NMCN Therapists CHP Regional Planning Groups Education Councils Scottish Government NSD Psychology Social work Research Management Launch event June 2009 105 Attendees

14. Service users working group –Care co-ordination possibilities and issues –Training to improve communication between parents/carers and professionals –Education on the emotional issues related to feeding support – event held 24 February 2010 –Educational DVD produced and available on website –What support is needed to keep CEN children at home Data working group –Identifying children who meet criteria - CEN assessment criteria agreed 24 Sept 2009 following pilot –Data collection permissions –Core data set –Contacts in each health board to facilitate data collection

15. Education and training working group –CEN Education day on practical and emotional issues related to feeding support –CEN Education module on the emotional issues related to feeding support –Improved communication between parents/carers and professionals –GP training to help keep children with exceptional healthcare needs at home Pathways of care working group –Care co-ordination pathways and regional differences –Good practice documents on enteral feeding and competency based training –Pathways and good practice overview, what is available and where? Research and audit working group –What audit tools are available –What audits are needed in the services for CEN children

16. Challenges –NDP processes and timescales, role of networks –Impact on Network objectives of delays in appointing NDP posts –Data collection – access and resource –Major time and work pressures on many network members making it difficult to find time to progress areas of work –Local financial pressures - support for Network members to fulfil responsibilities and for staff to attend meetings and education events –Education and support required for staff appointed to new posts is a burden on network resources –Lack of personnel for backfill of Lead Clinicians time (SPARN) –Engaging effectively - Social Work (CEN), GP, parent/ professionals across Scotland –Improving services for children defined by complexity of care rather than diagnosis (CEN). Children & Young people with CF

17. Opportunities Awareness raising for professionals and patients/families. Involvement brings fresh ideas, audit and education projects Websites – sharing of information and contacts Links to other Networks and shared offices–effective use of resources, shared ideas, support Improved communication – families and professionals Motivation – harness enthusiasm - families and professionals – making a difference Influence future of MCN’s - new structures, processes and ways of working Service delivered by trained specialist multidisciplinary teams in all network centres, informed by an appropriate range of care pathways and protocols Development of an appropriate sustainable service model for the delivery of equitable, accessible care throughout Scotland Children & Young people with CF