National Managed Clinical Network for Children with Exceptional Healthcare Needs (NMCN CEN)

Transcription

1 National Managed Clinical Network for Children with Exceptional Healthcare Needs (NMCN CEN) Annual report 2011/ Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 1

2 Executive summary Stakeholder engagement In 2011/2012 the number of parents and professionals involved in the work of the National Managed Clinical Network for Children with Exceptional Healthcare Needs (NMCN CEN) increased from 852 to The website of the NMCN CEN is an essential tool in communicating events, workshops and best practice documents with stakeholders and was visited by around 500 unique visitors each month. Engagement with emergency care professionals has improved in professionals from the Scottish Ambulance Service and 19 professionals working at NHS24 have been involved in workshops and events organised by CEN and are now on the CEN contact list. Engagement with Early Years practitioners (including staff working in Neonatology and Health visitors) has been low and this is the target for improvement over the next year and included in our Communication Strategy. Feedback from parents and professionals on the work of the network for 2011/2012 include: CEN is a really family focussed can do network. Thank you. Very productive MCN; improving service provision for C/YP and families Particularly like hearing the perspective of parents and their involvement in the CEN network I have been to a couple of CEN days and have found them to be very informative and relevant. CEN website is very useful. Keep up the great work I am very impressed by the passion of all involved in the organisation and the huge data collection and information gathered and used Conference The Annual Conference in September 2011 focussed on the Emergency Care for Children with Exceptional Healthcare Needs. The CEN Conference received 163 registration requests by September There were 33 cancellations for a variety of reasons including other work commitments, travel restrictions and illness; this allowed us to accept all remaining 130 registrations. There were 114 attendees from across Scotland on the day. 79% rated the presentations as excellent; 21% as good. When asked if the conference and presentations would influence their practice in relation to emergency care 56% of attendees replied that it would have a large influence, 41% some influence and 3% no influence. Recommendations from the conference were followed up. This includes CEN supporting the pilot of the Electronic Key Information Summary (ekis). One of the aims of ekis is to improve information sharing and communication for children with complex and exceptional healthcare needs. Data collection In 2011/2012 the NMCN CEN worked closely with professionals in all health board areas to update information kept on the Support Needs System (SNS) or to support the collection of local information on children with exceptional healthcare needs. The Complex Care Group of the Scottish Government recognised the importance of accurate data collection on the demographics of children with exceptional healthcare needs and they provided one off funding for administrative support to allow three health boards (Borders, Dumfries and Galloway, Forth Valley) to update their SNS system. The data recorded on SNS has now further increased (Fig. 1) and in February 2012 around 80% of the Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 2

3 children and young people (0-19) meeting the exceptional healthcare needs criteria were recorded on SNS or a local database kept in collaboration with NMCN CEN. The total number of children with exceptional healthcare needs in Scotland was estimated at 394. The NMCN CEN is working closely with ISD to link SNS data to data on hospital admission rates and patterns. Total number of children meeting the CEN criteria on SNS 300 Number of children meeting CEN crietria on SNS Aug-09 Feb-10 Aug-10 Feb-11 Aug-11 Feb-12 Date of ISD extract of SNS Figure 1. Increased data recording on the Support Needs System (SNS). CEN Pathway of Care The retrospective audit of the CEN Pathway of Care was completed (Nov 2011). The patient journeys of 27 children meeting the exceptional healthcare needs were studied from their admission to hospital to their discharge from hospital (admission between ) at Royal Hospital for Sick Children, Yorkhill (Glasgow); Royal Hospital for Sick Children, Edinburgh; Royal Aberdeen Children s Hospital. 14 out of 27 children/young people with exceptional healthcare needs were in hospital for more than 6 months. All 7 children who had been in hospital for more than 12 months required 24/7 ventilation support. In many cases discharge was delayed due to one or more of the following reasons: 1. Home care package not agreed due to parental concerns and expectations 2. Funding for home care package requiring negotiation/agreement 3. Delay in recruitment and/or training of staff 4. Home environment requiring adaptations 5. Delay in the provision of equipment 6. The required respite care was not available 7. Delays in discharge from hospital were also observed when the child needed to be transferred home to another health board. Key recommendations include: Early identification of a child meeting the CEN Exceptional Healthcare Needs criteria will assist the planning of both hospital care and community care for these children and will highlight the support that is needed for the family. It is essential that early support for families is available to discuss expectations, possibilities and limitations in the home care and respite care that can be provided for a child with exceptional healthcare needs. This will support discharge planning and will facilitate the discussion and agreement of a home care package. The CEN network has incorporated the recommendations of this report in next years work plan. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 3

4 Education How does it feel? The DVD How does it feel on the emotional impact of tube feeding (launched Feb 2010) continues to be used across Scotland and copies are requested regularly by a range of professionals. By the end of 2012 the impact of the How does it feel project will be evaluated. How do you want me to talk to you? The DVD and Workshop How do you want me to talk to you? Recognising the Challenges in Communicating with Children with Exceptional Healthcare Needs (launched May 2011) aims to address staff feelings of anxiety and insecurity around communicating with children who do not use verbal communication. 13 people (including healthcare staff, education facilitators, voluntary sector staff and parents) were trained to facilitate this workshop. We organised 14 workshops in collaboration with the trained facilitators across Scotland (January-May 2012). 329 people registered for the workshops and 240 people attended. These workshops reached a large new audience as 80% of the participants had not attended a CEN event previously. Feedback on the workshops: Made me reflect on my own practice, realise that I am not alone in my insecurities but showed me that we all have the skills to promote good communication with children with complex needs. This course has given me new ways to look at my practice. Well presented, I have learned a lot today. Very refreshing and thought provoking. In addition to these workshops, the workshop materials and DVD were also incorporated into other education and training events across Scotland. Learning Needs Analysis and Education Strategy A Learning Needs Analysis was completed in January The parents and professionals Survey Monkey questionnaires were sent out to all network contacts. The 26 responses from parents highlighted that they had undertaken a diverse range of training and their learning needs are specific to their child s condition and their own individual situation. The main reasons impacting on parents ability to access training was childcare for their child. Parents suggested that they would find it helpful if the NMCN CEN could play a bigger role in advertising and signposting training available to parents. There were 316 responses from professionals who identified a range of learning needs and this highlighted the diversity of subject areas that professionals require to ensure up-to-date knowledge and skills in supporting children and young people with exceptional healthcare. 95% of professionals replied that they found the educational resources developed by CEN very helpful or helpful. The NMCN CEN Education Strategy and Action Plan has been developed, this incorporates the findings and recommendations from the Learning Needs Analysis. Early support and parental expectations Parents in the NMCN CEN Service Users Working Group told us they found the first year after their child was born or diagnosed with complex needs the hardest time of their life and found it difficult to cope. In response the network identified early support and parental expectations as the priority for educational development for 2012/13. The NMCN CEN will develop a booklet and an accompanying learning activity for professionals and have meetings with early years practitioners and the GIRFEC team, which will feedback into the next annual NMCN CEN conference on early support for families with a child with complex needs (27 September 2012 in Edinburgh). Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 4

5 Introduction Following a review of the specialist services in Scotland by the National Steering Group for Specialist Children's Services in 2007/08 a recommendation was made to strengthen and invest in specialist services for children with complex needs. Complexity of need can arise from a number of underlying conditions and the defining criteria would be the multiplicity and severity of the child's health conditions, requirement for an exceptional degree of co-ordination of services and high complexity of clinical need. As part of the National Development Plan for Children's Services funding was agreed for the development of a National MCN for children and young people with exceptional health care needs. NSD are the fund holders and the network has been hosted in the MCN Office for NHS Lothian since April Aim/ Purpose/ Mission Statement The purpose of the NMCN CEN is to provide information to parents/carers and professionals and discuss issues and improvements to the services provided to children with exceptional healthcare needs. The work is underpinned by evidence based, professionally developed and agreed clinical pathways and protocols. The work the NMCN is doing is in line with the Scottish Government Getting It Right for Every Child (GIRFEC) aims. The NMCN CEN aims are to: Ensure a comprehensive and systematic identification and mapping of children within Scotland Define who the network is for and facilitate discussions with social work, education and health Be a focal point for children, young people and families for information and discussions to influence how services are provided Be a focal point for health professionals and others together, to review and improve service provision Offer an opportunity for an evidence based approach to co-ordination of services to be provided in every Health Board area Develop a clear and uniform process for provision of service, and appropriate service models Identify workforce needs - training and capacity The definition for Children with Exceptional Healthcare needs was agreed in September 2009 and is as follows: CEN assessment criteria: The six impairment categories used for assessing the children and young people are: learning and mental functions communication motor skills self care hearing vision Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 5

6 A child or young person (up to the age of 19) is defined as having exceptional healthcare needs if they: have severe impairment recorded in at least 4 categories together with enteral/ parenteral feeding OR have severe impairment recorded in at least 2 categories and require ventilation/cpap AND the impairments are sustained and ongoing or expected to be lasting for more than 6 months. Prevalence In February children with exceptional healthcare needs (around 80% of the total number of children meeting the criteria) were recorded on the SNS or a local database kept in collaboration with NMCN CEN. The total number of children with exceptional healthcare needs in Scotland was estimated at 394 (Feb 2012). NHS board area Number of children (aged 0-19) in 2010 Number of children that meet CEN criteria in SNS. Data collected by ISD ( ) CEN confirmed or estimated Ayrshire &Arran 82, Borders 25, Dumfries & Galloway 31, Fife 83, Forth Valley 70, Grampian 123, Greater Glasgow and Clyde 268, Highland 67, Lanarkshire 134, Lothian 183, Orkney 4,393-1 Shetland 5,405-1 Tayside 89, Western Isles 5,609-2 TOTAL 1,175, Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 6

7 The prevalence of enteral/parenteral feeding; ventilation/cpap and severe impairments in children with exceptional healthcare needs is as follows: 92% Enteral/parenteral feeding 13% Ventilation 9% CPAP 91% Severe learning and mental function impairments 91% Severe communication impairments 88% Severe motor skill impairments 97% Severe self care impairments 14% Severe hearing impairments 43% Severe vision impairments The definition severe was used as detailed in the SNS system. The percentages are based on local data collected in 2010/2012 in Lothian, Greater Glasgow and Clyde, Highland, Tayside, Ayrshire and Arran. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 7

8 Plans for the year ahead Please detail the network s plans for the year ahead. Please align these plans to the network s designation objectives and the relevant quality dimensions. Network objectives for the year ahead will be agreed in the mid-year performance review meeting with NSD. NMCN CEN Workplan April 2012-April 2013 (Approved by CEN Steering Group on 14 December 2011) 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 dates Description of progress towards meeting objective Outcome / evidence 1. PERSON CENTRED: Providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions CEN Key Objective 1: Encourage and facilitate the involvement of families, children and patient support groups in the network and engage them in service improvement RAG status CEN Work Plan task 1: Organise 2-3 Service Users Working Group meetings a year and have ongoing and phone contact with parents. ongoing CEN Work Plan task 2 Involve parents in the planning of the annual conference on early support and parental expectations, a topic prioritised by parents and professionals. Parents will be involved in presentations and discussions at the conference. Jan 2012-Sept 2012 Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 8

9 Objective Planned start/ end dates Description of progress towards meeting objective 2. SAFE: Avoiding injuries to patients from care that is intended to help them. Promote best clinical practice. Outcome / evidence RAG status CEN Key Objective 2: Develop the Pathway of Care for children with exceptional healthcare needs and audit the Pathway. CEN Work Plan task 3: Continue to develop and update the information in the Pathway of Care and extend the Pathway to include information about early support and ongoing support in the community. The Pathway of Care Working Group will support implementation of the Pathway of Care and will promote best clinical practice incorporating the GIRFEC/Care Co-ordination principles. Ongoing 3. EFFECTIVE: Providing services based on scientific knowledge CEN Key Objective 3: Agree data collection, audit, and research to provide a basis for further service improvement and in monitoring clinical outcomes. CEN Work Plan task 4: Organise data projects in 4 health board areas to extend and further improve the use of SNS. April August 2012 CEN Work Plan task 5: Collect and analyse data on hospital admissions for children with exceptional healthcare needs in 2010 and 2011 and report on the admission patterns and reasons for admission to hospital. July 2012-April EFFICIENT: Avoiding waste, including waste of equipment, supplies, ideas, and energy CEN Key Objective 4: Identify training needs and facilitate the design, development and delivery of education and make this training available across Scotland. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 9

10 Objective CEN Work Plan task 6: Summarise the training need identified by professionals and parents. Implement the education strategy by developing materials and/or organising events to support learning related to the identified learning needs. Planned start/ end dates April April 2013 Description of progress towards meeting objective Outcome / evidence RAG status CEN Work Plan task 7: Develop training materials for professionals about early support and parental expectations. April September EQUITABLE: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status CEN Key Objective 5: Ensure effective systems and processes are in place to identify stakeholders and engage stakeholders from across Scotland in the ongoing development of the network. CEN Work Plan task 8: Update the Stakeholder analysis and communication strategy. CEN Work Plan task 9: Improve stakeholder involvement of new and existing stakeholders through presentations, newsletters and regular updates on the CEN website. Work together with other NMCNs, networks, and organisations including SCYPPN Palliative Care network; GI network; Paediatric Ventilation Network; Nursing Continuing Care Forum, Neonatal nursing network. April April 2013 Ongoing Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 10

11 Objective Planned start/ end dates Description of progress towards meeting objective Outcome / evidence 6. TIMELY: Reducing waits and sometimes harmful delays for both those who receive care and those who give care RAG status CEN Key Objective 3: Agree data collection, audit, and research to provide a basis for further service improvement and in monitoring clinical outcomes. CEN Work plan task 10: Work together with Complex Care Group of the Scottish Government to collect data on home care packages for children with complex needs across Scotland and the use of the CCHAT assessment tool. Make recommendations for improvements around the timely and equitable provision of home care packages for children with complex needs. April June 2012 Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 11

12 Network governance NMCN CEN Lead Clinician from April 2009-September 2011 was Dr Patricia Jackson, Consultant Paediatrician employed by NHS Lothian. From September 2011 the NMCN CEN Lead Clinician is Dawn Moss, Nurse Consultant Vulnerable Children, NHS Borders. Her post is backfilled for 2 sessions a week to allow her to work for the NMCN CEN. NMCN CEN Manager is Dr Marit Boot, who has a PhD in Biomedical Science, senior management experience both in the Scottish Government and the NHS. Her post is part-time 2.5 days a week hosted by NHS Lothian in the NHS Lothian NMCN Office. The NMCN CEN is supported by a network administrator Anna Gardiner. The administrator is line-managed by the NMCN CEN manager. The NMCN CEN manager is linemanaged by Sally Egan, the Child Health Commissioner, NHS Lothian. Sally Egan is based in Strategic Planning NHS Lothian and provides the Lothian NMCN Office with essential contacts in the Child Health Commissioners Group, Strategic Planning Departments, and Scottish Government. Weekly meetings between the NMCN CEN Manager and NMCN CEN Lead Clinician and regular e- mail updates ensure effective management of the network work plan and objectives. The NMCN has 4 Working Groups (see below) that meet up 2-4 times a year and the chair of each of the Working Groups is a member of the Steering Group. The Chair provides feedback on the work of the Working Groups to the Steering Group. The work of all the working groups is part of the work plan as detailed in the Service Level Agreement agreed with NSD. In November and May the NMCN CEN provides a report with an update on the progress against the work plan for the Steering Group, NSD and the Scottish Government. All network members can ask for a copy of these reports and the year report is made available on the NMCN CEN website. Service Users Working Group Education and Training Working Group Steering group Pathway Implementation Working Group Data and Audit Working Group Figure 1. Steering Groups and Working Groups of the NMCN CEN 2011/2012. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 12

13 Remit of the Steering Group The remit of the steering group is to support and steer the development of the National Managed Clinical Network for Children with Exceptional healthcare Needs and the related services in Scotland by a. Developing the strategic direction of the CEN NMCN b. Agreeing objectives of the CEN NMCN c. Agreeing priorities for the annual work plan d. Monitoring and evaluating progress e. Actively promoting the concept of the network f. Actively involve other networks g. Promoting and facilitating information collection, audit and stimulate research h. Look into opportunities to influence policies and strategies NMCN CEN Working Groups: Service users group: Views of parents and carers of children and young people about the current services and possible improvements Data and audit group: Collecting data and performing audit on the services for children with exceptional healthcare needs as well as looking at research in this area Education and training group: What type of training is needed to improve services? Pathway Implementation group: How can we promote the implementation of the steps of the pathway and increase awareness of the resources that are available as part of the online CEN pathway? The NMCN CEN works closely with other existing networks in areas of mutual interest to avoid duplication of effort. The NMCN CEN works closely with the Scottish Children and Young People Palliative Care Network (SCYPPN). The NMCN CEN Lead Clinician is involved in work of the SCYPPEX subgroup and helped to develop the Children and Young People Acute Deterioration Management (CYPADM) form. The NMCN CEN links with a number of networks including the CCN network, Speech and Language Therapist Network, Physiotherapist Network, Ventilation network, GI network and West of Scotland Paediatric Gastroenterology, Hepatology and Nutrition Managed Clinical Network (WoSPGHAN). The NMCN CEN Lead Clinician and Manager present the work of the network at meetings and provide updates to keep the Child Health Commissioners Group, the Child Health Support Group and Scotland s Commissioner for Children and Young People informed about the progress of the network. There is regular communication with these groups which ensures effective engagement. The network aims to keep the Regional Planning Groups informed about its work and is looking with NSD and other NMCNs at possible ways to improve the communication with the Regional Planning Groups. Lothian NMCN Office Managers from the Lothian NMCN Office meet with managers from both the Glasgow NMCN Office and the Tayside NMCN office to discuss national data systems and share approaches and information. Managers from the Lothian office are involved in meetings with NES about the Managed Knowledge Network. Within the Lothian NMCN Office Marit Boot leads on discussions with NSD and Finance, Lorna Hall leads on discussions with NES and Margaret Kelman is on the working group of the National Patient experience project. Network and NMCN Lothian Office mid-year reports, year reports and joined network office meetings provide feedback on the work of the NMCNs to all stakeholders. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 13

14 NMCN CEN Year report Detailed progress May 2012 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 dates Description of progress towards meeting objective Outcome / evidence RAG status 1. PERSON CENTRED: Providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions CEN Key Objective 1: Encourage and facilitate the involvement of families, children and patient support groups in the network and engage them in service improvement CEN Work Plan task 1: Organise 2-3 Service Users Working Group meetings a year and have ongoing e- mail and phone contact with parents. CEN Work Plan task 2: Involve parents in the planning of the annual conference on Emergency care, a topic prioritised by parents and professionals. Parents will be involved in presentations and discussions at the conference. ongoing Service Users Group meeting in Edinburgh (June 2011). This meeting influenced the conference planning and the discussion about early years and early support was included as a priority for discussion at the Steering Group (Aug 2011). A Service Users meeting in Inverness (Aug 2011) organised in collaboration with the Child Health Commissioner of NHS Highland focussed on emergency care and also highlighted the importance of early support Service Users Meeting in Edinburgh (Nov 2011) was used to discuss the development of new educational materials focussing on early expectations and early support and how parents and professionals can be involved. Jan 2011-Sept 2011 Parents were involved in planning the conference presentations and discussion session. Two parents presented at the conference and shared their own experiences and views on the work of the NMCN CEN. Conference speakers were suggested by the Service Users working group and Education Working Group Early (years) support discussed with Steering Group and has now been agreed as next priority for NMCN CEN conference and education project. Parents involved in the development of new educational resource on parental expectations/early support Conference 8 September 2011 included presentations by parents. Conference speakers were suggested by Service Users and Education Working Group members. The conference topic was agreed as a priority for discussion by parents. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 14 Green Green

15 Objective Planned start/ end dates 2. SAFE: Avoiding injuries to patients from care that is intended to help them Description of progress towards meeting objective Outcome / evidence RAG status CEN Key Objective 2: Develop the Pathway of Care for children with exceptional healthcare needs and audit the Pathway. CEN Work Plan task 3: Continue to develop and update the information in the Pathway of Care. The Pathway of Care Working Group will support implementation of the Pathway of Care and will promote best clinical practice incorporating the GIRFEC/Care Coordination principles. Ongoing Regular updating of documents on the Pathway of Care. Presentations were given at local meetings to raise awareness of the pathway and support the implementation of the pathway. Pathway Implementation Working Group meeting (Oct 2011) discussed further possibilities to raise awareness of the Pathway and looked at ways to extend the Pathway to incorporate good practice documents for care in the community based on the GIRFEC principles. The Pathway of Care was visited over 1400 times (May 2011-May 2012). The Paediatric Enteral Feeding Guidelines; Breaking Bad News Guidelines and Discharge Planning documents were downloaded the most ( times each per month). New documents regularly added to the CEN Pathway of Care. Green 3. EFFECTIVE: Providing services based on scientific knowledge CEN Key Objective 3: Agree data collection, audit, and research to provide a basis for further service improvement and in monitoring clinical outcomes. CEN Work Plan task 4: Collect and analyse data on hospital admissions for children with exceptional healthcare needs and report on the admission patterns and reasons for admission to hospital. CEN Work Plan task 5: Organise two meetings with healthcare professionals working in emergency Jan September 2011 April September 2011 The data projects the NMCN CEN completed across Scotland have improved the use of SNS, from 86 to 275 children meeting the criteria registered on SNS. Hospital admission patterns for 2008 and 2009 were provided by ISD but as SNS data was limited these results are considered preliminary. The SNS use has increased in 2010/2012. The next data on hospital admission in 2010 are expected to be statistically relevant and interesting. Hospital admission data at ISD is delayed because of changes to hospital databases across Scotland. Data now expected July Two meeting with emergency care professionals took place: one in Glasgow and one in Edinburgh. The feedback was used to invite speakers for the conference and plan the In Feb children and young people with exceptional healthcare needs recorded on SNS (compared to 86 in Aug 2009). Linking SNS to hospital admission data has given interesting preliminary results about the hospital admission patterns of this group of children, as presented at the CEN Conference by Dr Rachael Wood (see CEN website) Outcomes of the conference included: 79% of the attendees rated the presentations as excellent. Green Green Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 15

16 Objective care to discuss issues related to emergency care and look at possibilities for service improvements. Planned start/ end dates Description of progress towards meeting objective Outcome / evidence RAG status discussion session and desired outcomes of the conference. 97% attendees (to whom this was applicable) said the conference would influence their practice in relation to emergency care. 4. EFFICIENT: Avoiding waste, including waste of equipment, supplies, ideas, and energy CEN Key Objective 4: Identify training needs and facilitate the design, development and delivery of education and make this training available across Scotland. CEN Work Plan task 6: Develop an Education strategy to identify training needs and agree what educational material and workshops need to be developed. CEN Work Plan task 7: Develop training materials and workshop aimed at improving communication How do you want me to talk to you? Recognising the challenges in communicating with children with exceptional healthcare needs. June March 2012 May May 2012 The Education Working Group of the NMCN CEN did a survey for professionals and parents to collect information about their educational needs. The outcomes of the survey (Feb 2012) were the basis of the Education Strategy. Draft education strategy was discussed and approved at Steering Group (April 2012). The Communication workshop How do you want me to talk to you? has been successfully developed and piloted in June Pilot feedback was used to adapt the workshop to suit both less and more experienced staff. A Train the Trainers day on 3 November 2011 was organised to train 13 facilitators who are facilitating 14 half day workshops in their area. 14 workshops across Scotland were organised between January-May 2012 and 329 healthcare professionals registered for the workshops. Education Strategy was discussed and approved at Steering Group meeting. Workshop materials developed and available on website, over 500 DVD copies requested. Train the Trainers day 13 facilitators trained to deliver workshops across Scotland. 14 workshops organised across Scotland and 329 healthcare professionals registered for the workshops. The workshops were rated as excellent (on average 4.3 out of 5). Report on CEN website 5. EQUITABLE: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status CEN Key Objective 5: Ensure effective systems and processes are in place to identify stakeholders and engage stakeholders from across Scotland in the ongoing development of the network. Green Green Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 16

17 Objective CEN Work Plan task 8: Update the Stakeholder analysis and develop a communication strategy. CEN Work Plan task 9: Involve new and existing stakeholders through presentations, newsletters and regular updates on the CEN website. Work together with other NMCNs, networks, and organisations including SCYPPN Palliative Care network; GI network; Paediatric Ventilation Network; Nursing Continuing Care Forum. Planned start/ end dates August April 2012 Description of progress towards meeting objective Outcome / evidence RAG status Additional stakeholders have been identified based on the next priority for the NMCN CEN. These new stakeholders are being contacted and involved in the work of the NMCN CEN. The second draft of the stakeholder analysis and communication strategy was approved at the Steering Group meeting (Dec 2011). Ongoing The NMCN CEN sent an electronic news update in June and December This resulted in an increase in visitors to the website. On average 500 unique visitors to the CEN website each month. CEN worked closely with the Palliative Care network and executive group SCYPPEX on CYPADM. Members of the GI network, Paediatric Ventilation Network; Nursing Continuing Care Forum provide regular updates to the Steering Group. The NMCN CEN is now closely working with the Early Years Network as early support for families, early intervention and prevention, and involving neonatology have been identified as the next priority for the network. CEN is involved in Scottish Government Complex Care Group. 6. TIMELY: Reducing waits and sometimes harmful delays for both those who receive care and those who give care CEN Key Objective 2: Develop the Pathway of Care for children with exceptional healthcare needs and audit the Pathway. CEN Work Plan task 10: Perform retrospective audit of Pathway of Care for 20 children and initiate the prospective audit of the Pathway of Care aimed to analyse co-ordination of care/girfec, discharge planning May April 2012 Retrospective audit of Pathway of Care is completed in Glasgow, Edinburgh and Aberdeen children s hospital. Audit was performed on 27 cases. Final report made available in November 2011 (on website). The Pathway of Care group agreed the Pathway of Care should be extended to include early intervention and Stakeholder Analysis and Communication Strategy agreed (Dec 2011). Now over 1300 people on the CEN contact list including staff working at NHS24, ambulance services, the Early Years Network and the regional neonatal MCNs. NMCN CEN involvement in CYPADM form (Children and Young People Acute Deterioration Management) NMCN CEN Manager is the Chair of Early Years Network Reference Group. NMCN CEN is evaluating national pilot of CCHAT tool used to assess complex care home care packages for children with complex needs. 27 Audit forms completed and evaluated. Final report on Pathway of Care Audit available from November Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 17 Green Green Green

18 Objective and discharge delays. Planned start/ end dates Description of progress towards meeting objective Outcome / evidence RAG status continuing support in the community as well as updated with information relating to GIRFEC implementation. It was agreed a prospective audit will not be performed as the focus should be on how recommendations for improvement from the retrospective audit could be implemented. Results of audit presented at a number of meetings including the SACCH meeting for Community Child Health (March 2012). Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 18

19 Appendix 1: Network membership The network now has over 1300 contacts. Below are the members of the Steering Group and Working Groups. Steering Group Dawn Moss Lead Clinician NMCN CEN, Nurse Consultant NHS Borders, Chair (Sept 2011 onwards) Marit Boot Manager NMCN CEN Ciara McColgan Paediatrician NHS Greater Glasgow and Clyde, contact West Scotland Regional Planning group, Chair Data and Audit Working Group Sophie Pilgrim Director Kindred/SNIP, Chair of Service Users Group Laura Somerville Consultant Paediatrician NHS Greater Glasgow and Clyde, Chair Pathway of Care Implementation Working Group Elaine Berry Senior Social Worker Edinburgh City Council, representing Councils and Social work Karen Sinclair Nurse Consultant NHS Greater Glasgow and Clyde, Palliative Care (SCYPPCN) Catriona Johnson Programme Manager NSD Sally Egan Child Health Commissioner NHS Lothian, Lothian NMCN Office Line-manager Anne Wilson Development Officer, Action for Sick Children Scotland Niina Kolehmainen Researcher University Aberdeen, Occupational Therapy Network Jackie Young Nurse Consultant NHS Fife, Nurse Continuing Care Forum Alison Rennie Paediatrician, NHS Greater Glasgow and Clyde Maire McCormack Head of Policy, Scotland's Commissioner for Children and Young People Arlene Honeyman Senior Social Worker, CHAS Nancy Little Speech and Language Therapist NHS Fife, Speech and Language Therapy Network Jackie Crum Consultant Paediatrician NHS Grampian, NOS Planning Group Phil Davies Respiratory Consultant NHS Greater Glasgow and Clyde, Ventilation Network SPRING Claire Edwards Training Consultant, Chair pathway of Care Working Group Laura Wiggins Lead Paediatric Physiotherapist NHS Greater Glasgow and Clyde, Physiotherapy Network Andrew Barclay GI Consultant NHS GGC, GI Network Mary Cloughley Head teacher, Hampden School, representing Education Margaret McFadden Head teacher, Croftcroighn School, representing Education Gillian Munro Policy Officer, Scotland's Commissioner for Children and Young People Lorraine Clydesdale Telemedicine Nurse Specialist NHS 24 Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 19

20 Data and Audit Working Group Ciara McGolgan Dawn Moss Marit Boot Beth McGeehan Jacqueline Reilly Anne Chowaniec Babs Henderson Lyn Cresswell Zoe Picton-Howell Gordon Linton Niina Kolehmainen Judith Tait Ann Scott Lila Agrawal Caroline Clark Andrew Cooper Nuno Cordeiro Jacqueline Crum Gill Currie Linda Kerr Jane McKenzie Monica McTurk Liling Payne Audrey Toshney Arlene Honeyman Annmarie King Katherine McKay Paediatrician, NHS Greater Glasgow & Clyde (Chair) NMCN CEN Lead Clinician, Nurse Consultant NHS Borders NMCN CEN Manager Nurse Coordinator, Complex Disabilities, NHS Ayrshire & Arran Discharge Nurse Coordinator, Children & Young People, NHS Greater Glasgow & Clyde Associate Specialist, Community Paediatrics, NHS Lanarkshire Carer, Rachel House, CHAS Consultant Paediatrician, RHSC, NHS Lothian Parent, Researcher Edinburgh University Discharge Liaison Nurse, NHS Lothian Researcher University of Aberdeen Team Manager, Child Health, ISD Armitstead Child Development Centre, NHS Tayside Consultant Paediatrician, NHS Lanarkshire Paediatric Consultant, NHS Highland Community Paediatrics, NHS GGC Paediatrician, Rainbow House, NHS Ayrshire and Arran Consultant Paediatrician, NHS Grampian Community Children s Nurse, NHS Highland IP Manager, Child Health, NHS Lothian Lecturer in Biochemistry & Metabolism, Queen Margaret University Chief Speech & Language Therapist, NHS Dumfries & Galloway Principal Officer, Children with Disabilities Team, Argyle & Bute Council Senior Staff Nurse, Paediatric Outreach, NHS Tayside Senior Social Worker, CHAS Paediatric Complex Care Sister, NHS Forth Valley Clinician, NHS Greater Glasgow & Clyde National Clinical Lead for Child Health, Scottish Government Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 20

21 Education and Training Working Group Dawn Moss Chair, NMCN CEN Lead Clinician Nurse Consultant NHS Borders Marit Boot NMCN CEN Manager Anne Wilson Development Officer, Action for Sick Children Scotland Margaret Johnston Paediatrics Nursing, NHS Lanarkshire Zoe Picton-Howell School of Law Edinburgh University, Parent Laura Sommerville Paediatrician Greater Glasgow and Clyde Katherine McKay Clinician, Greater Glasgow & Clyde, National Clinical Lead for Child Health, Scottish Government Thea McMillian Parent Ellen Baird Speech and language therapist, NHS Borders Fleur-Michelle Coiffait Trainee Clinical Psychologist, RHSC, NHS Lothian Claire Edwards Training consultant Karen Sinclair Palliative Care, NHS Greater Glasgow & Clyde Debbie McGirr School of Nursing, Midwifery & Social Health, Napier University Penny Martin Paediatric Physiotherapist, NHS Orkney Irene McTaggart School of Nursing & Midwifery, University of Dundee Alison Morrison Community Child Health, West CHCP Winnie Taylor Head of Speech & Language Therapy, NHS Grampian Fiona Fenton Occupational Therapist NHS Grampian Gemma Passmore Paediatric Physiotherapist NHS Shetland Ashley Prentice Occupational Therapist NHS Borders Joanna Smith Lecturer University of Stirling Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 21

22 Pathway of Care Implementation Working Group Laura Somerville Chair, Consultant Paediatrician NHS Greater Glasgow and Clyde Marit Boot NMCN CEN Manager Dawn Moss NMCN CEN Lead Clinician Jacqueline Reilly Discharge Nurse Coordinator, NHS GGC Gordon Linton Discharge Liaison Nurse, NHS Lothian Pat Rankine Community Children s Nursing, NHS Highland Chris Ridley Care Coordinator, Scottish Government Margaret Johnston Paediatrics, NHS Lanarkshire Alison Morrison Community Child Health, NHS GGC Liling Payne Principal Officer, Children with Disabilities Team, Argyle and Bute Council Morag Curnow Clinical Dental Director NHS Tayside Elspeth Jardine Respiratory Nurse Specialist NHS Greater Glasgow and Clyde Liz Roebuck Consultant Edinburgh Dental Institute NHS Lothian Shiuli Russell SpR Community Paediatrics NHS Greater Glasgow and Clyde Valerie Orr SpR Paediatric Neurodisability NHS Greater Glasgow and Clyde Emma Jeffrey Registrar NHS Greater Glasgow and Clyde Audrey Toshney Nurse Paediatric Outreach NHS Tayside Karen Sinclair Nurse Consultant NHS Greater Glasgow and Clyde Susan Swift Clinical Nurse Manager NHS Grampian Graeme Wright/Morag Curnow Specialist in Paediatric Dentistry NHS Forth Valley Ena Cromar Project Coordinator Children s Disabilities NHS Grampian Lesley McLaren PAMIS Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 22

23 Service Users Working Group Dawn Moss Marit Boot, Sophie Pilgrim Michelle Morrison Hilary Cartwright Judy Panton Anne Wilson NMCN CEN Lead Clinician NMCN CEN Manager KINDRED, Chair South Lanarkshire Coordinator, PAMIS Lead Service Manager for Allied Health, Capability Scotland Scotland Development Manager, Family Fund Parent and Development Officer, Action for Sick Children Scotland And 15 parents of children with complex or exceptional healthcare needs. Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 23

24 Appendix 2: Finance 2011/2012 NSD funding NMCN CEN Lead Clinician backfill 10,036 NMCN CEN Manager 22,427 NMCN CEN Administrator 9,195 Total staff costs: 41,658 Travel 1,224 Stationary, printing, phone, CEN DVDs 684 Training 1,729 IT and website support cost 2,274 Patient leaflets tube feeding 440 Meetings and conferences 5,071 Local meetings 151 Total other costs: 11,573 NMCN CEN Education module on Early Support (as agreed by NSD from slippage on backfill costs) One off additional cost: 6,500 Total NMCN CEN 2011/2012 (funded by NSD): 59,731 The NMCN Lothian office budget for 4 networks was 46,000 11,500 was available for CEN. All the funding was used with an actual spend of 11,573 In 2010/2011 the total costs of the work of the CEN network were 77,173. The small reduction in spending this year was due to the efficient use of local venues, the use of videoconferencing and the help of staff in booking venues in each of the health boards. Additional funding received from Scottish Government (February 2012): Received from the Complex Care Group, Modernising Nursing in the Community in the Scottish Government to support CEN data projects, education workshop provision, CCHAT pilot: NMCN CEN Data projects (NHS Borders, NHS Dumfries &Galloway; NHS Forth Valley) 4,500 NMCN CEN workshops on practitioner communication with children with complex needs 1,500 Extra hours for NMCN CEN Manager to perform pilot and report on CCHAT tool (Children s Continuing Healthcare Assessment Tool) 759 Total additional Scottish Government funding: 6,759 Annual Report 2011/2012 NMCN for Children with Exceptional Healthcare Needs 24