Managed Clinical Networks Specialist Children's Services Yorkhill

1. Managed Clinical NetworksSpecialist Children's ServicesYorkhill • Epilepsy • Muscle • Inherited Metabolic Disease • Genital Anomalies • Diaphragmatic Hernia • Rheumatology • Endocrinology • Renal and Urology • Complex Mental Health Needs

2. Scottish Paediatric Epilepsy Network Paediatric Epilepsy Roadshows • Developed to give everyone across Scotland access to the same programme of paediatric epilepsy education locally • Participants have included paediatricians, SHOs, community children’s nurses, medical students, nursery nurses, GPs, practice nurses, specialist registrars, health visitors, activities co-ordinators, school nurses, associate specialists, pharmacists • Positive evaluations: Quality of education rated as good or excellent by 196 people www.spen.scot.nhs.uk

3. Scottish Paediatric Epilepsy Network Care Pathways • Care Pathways developed for Paediatric 1st Seizure(s) and Paediatric Continuing Epileptic Seizures in 2006 • Copies sent to Paediatricians, GP’s and A&E Units across Scotland • Review questionnaire sent out in 2009: - 87% of paediatricians always or usually manage patients as recommended by 1st Seizure(s) Care Pathway - 65% of paediatricians always or usually manage patients as recommended by Continuing Epileptic Seizures Care Pathway www.spen.scot.nhs.uk

4. Scottish Muscle Network Management of Adults with Myotonic Dystrophy Guideline • Multi-disciplinary subgroup established • Evidence based general management guidelines for adults with DM1 have been produced based on review of literature between 1992 and 2008 • Agreed common clinical data for collection in DM1 clinics for audit • Leaflet circulated to neurologists, cardiologists, respiratory clinicians and geneticists

5. Scottish Muscle Network Patient and Family Evenings (Glasgow) • Held three times per year • Invited speakers from wheelchair services, CHAS, physiotherapy, spinal surgery, respiratory • Opportunity for networking and discussion • Wheelchair hockey available for disabled young people • Patient and family events currently being developed for Dundee, Edinburgh and Aberdeen

6. Managed Clinical Network for Inherited Metabolic Disease Scotland • Established in 2007, IMD Scotland has members from all multidisciplinary groups involved in the care of children with an inherited metabolic disorder. • Since its designation, the Network has produced 10 clinical protocols, with several more at various stages of development, a New Parents Pack for PKU (the most common IMD), with an MCADD New Parents Pack also in development, held professional and parent education days, and held its first Families Day in November 2008. This event has been viewed as exemplar and it is hoped to become an annual event, with the second to be held on 1 November 2009.

7. Patient / Parent Education:Low-Protein Cookery Day at Nick Nairn’s Cookschool IMD Scotland held a low protein cookery day at the Nick Nairn Cookschool in August 2009, which was extremely well received by both parents and older patients. Recipes from the day have been donated by the Cookschool, are available from the IMD Scotland website, and will be included in a forthcoming IMD Scotland low protein cookbook.

8. Scottish Paediatric Epilepsy Network Care Pathways • Care Pathways developed for Paediatric 1st Seizure(s) and Paediatric Continuing Epileptic Seizures in 2006 • Copies sent to Paediatricians, GP’s and A&E Units across Scotland • Review questionnaire sent out in 2009: - 87% of paediatricians always or usually manage patients as recommended by 1st Seizure(s) Care Pathway - 65% of paediatricians always or usually manage patients as recommended by Continuing Epileptic Seizures Care Pathway

9. SGAN SGAN was originally created in 2002 as an informal network and was subsequently formally approved as a national managed network by the National Services Division of NHS Scotland in 2006. The Scottish Genital Anomaly Network (SGAN) is a national managed clinical network of a multidisciplinary group of health care professionals that provides care to children and adults who may have a disorder of the genitalia. The overall aim of SGAN is to improve long-term clinical outcome.

10. SCOTTISH GENITAL ANOMALY NETWORK The clinics were started in 2003 and there are now multidisciplinary Clinics held on 3 sites – 4/year Glasgow; 2/year each in Aberdeen & Edinburgh. These clinics are accessible from all sites via videolink. The main benefit of these clinics is the input from a number of different specialities available to parents Linking clinical personnel who are involved in patient management From an educational perspective, these clinics provide an opportunity for clinical development & training of staff

11. Established since 2004. • Shared Care clinics in all children's hospitals • Teleconferencing • Families Groups • Protocols and Guidelines • Education Strategy

12. SCOTTISH PAEDIATRIC RENAL UROLOGY NETWORK Achievements: Future Work: Families’ Network: Supporting existing family network. Building/expanding on a Family Forum/Planning Group. The Group meet on a regular basis. Their main aim is to further enhance the previous work done. A work plan has been drafted and sent out for comment. Patient Held Record: This is one piece of the work the Family Forum/Planning Group will take forward. Various documents will be reviewed and the Family Forum/Planning Group will decide on a best fit. Video Teleconferencing Case Discussions: Sessions take place on a quarterly basis with centres throughout Scotland. There is a group covering the West of Scotland and one for the East and South. Highland is supported by Aberdeen. These sessions provide an excellent educational opportunity for multi-disciplinary colleagues. Benchmarking: An update of benchmarking local services is currently taking place. This will build a bigger picture of local services and identify gaps. National Delivery Plan: The network have submitted proposals which have been distributed to all network members for local adaptation. All link clinicians have to work with their multi-disciplinary teams and local leads for NDP implementation to take the network proposals forward. Education: The Scottish Paediatric Renal Urology Network is now incorporating the Scottish Paediatric Renal Interest Group. Educational days will have professional groups (pharmacists, nurses, psychologists and dietitians) meeting together followed by a shared educational session for all disciplines. For more information on the Scottish Paediatric Renal Urology Network e-mail: Linda.Watson3@ggc.scot.nhs.uk www.sprun.scot.nhs.uk Author: Linda Watson Published November 2008 • Introduction of Network: • Established via Application to Scottish Executive - National Services Advisory Group Process in 2003 • Formally Designated as a National Managed Clinical Network by National Services Division in 2005 • Mandate to improve local access and develop equity of services across the country for all children and young people with renal and urology needs • Geographic, multi-agency, family centred • Aim of Network: • To develop renal and urology services for all children in Scotland by facilitating care via local teams delivering care as close to home as possible with information and intervention being provided, as necessary, by specialists • WHO’S INVOLVED? • Child and Family are central to the aims and purpose of the network. The network also link with: • Tertiary centres • District General Hospitals • Primary Care • Multi-disciplinary teams include the following professions: nurses, pharmacists, dietitians, psychologists and medics • NEPHROTIC SYNDROME • BENCHMARKING QUESTIONNAIRE • AIMS: • To obtain a multi-disciplinary perspective on how well centres throughout Scotland deliver care for patients with Nephrotic syndrome • OBJECTIVES: • To identify service gaps • To achieve acceptable standard of care through education/training needs • To enhance shared care • METHOD: • A ‘tick box’ questionnaire was sent to link clinicians to be completed by the local multi-disciplinary team • RESULTS: RENAL MEDICATION INFORMATION BOOKLET AWARD Congratulations to Angela Lamb, Paediatric Renal Pharmacist at the Royal Hospital for Sick Children, Yorkhill who recently won an award at the Ask About Medicines Awards for Excellence. The ceremony took place at the House of Commons in London on 22 July 2008. Angela won Category E: Medicines information for carers or non-healthcare professionals working with patients or medicine users for the Renal Medication Information Booklet (RMIB) she produced to assist families and children with chronic kidney disease (CKD). The RMIBisan easy to understand information booklet about medicines for children who have complex medication regimens. Patients/carers record changes to doses - to give them ownership and a way of coping with the constantly changing medication regimen. The aim is to roll the RMIB out Scotland wide for all children with CKD via the Scottish Paediatric Nephrology & Urology Network (SPRUN). The RMIB is also easily adaptable for other conditions. If you would like any further information, please contact: Angela Lamb, Renal Pharmacist, Ward 6A, Royal Hospital for Sick Children, Dalnair Street, Yorkhill, Glasgow, G3 8SJ Tel: 0141 201 0000 E-mail: Angela.Lamb@ggc.scot.nhs.uk

13. Outpatient Audit • Aim: to establish baseline figures on how many non complex patients come to Yorkhill from ‘out of area’. • Method: Researcher ( project manager) , case notes, HISS, external quality assurance • Result: 1 /3 of general nephrology patients could be seen more locally. Service redesign planned

14. And finally! here is Edward Bear, coming down the stairs now, bump, bump, bump, on the back of his head, behind Christopher Robin. It is as far as he knows the only way of coming downstairs, but sometimes he feels that there really is another way, if only he could stop bumping for a moment and think of it…”