National Managed Clinical Network (NMCN) Progress

NDP Implementation Group 10 March 2010

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

NMCN role in supporting improvement in quality of patient care

WhatGeneric

• HDL’sService specific

• Review findings• Draft NSAG

applications• NDP • Standards

How and whenGeneric

• SLA’s• Role of NSD• Lessons learned

Service specific• NDP proposals• Workplan

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 change3. Service improvements/Education &training4. Policy/planning

• Formal launch event – 7 May 2010

Rheumatology NMCN

• 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

• 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

• 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

Endocrine NMCN

• 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.

• 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

Children with Exceptional Healthcare Needs NMCN

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

• 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

• 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

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

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