SCOTTISH PAEDIATRIC RENAL UROLOGY NETWORK (SPRUN)

Transcription

1 SCOTTISH PAEDIATRIC RENAL UROLOGY NETWORK (SPRUN) Steering Group Notes of Meeting - Friday 19th March 2010 Kidney Kids Scotland, Stenhousemuir, 11am - 3pm Attendees Name Sheena Dunsmore Karen McFarlane Angela Lamb David Hughes Sepi Taheri Rebecca Hemingway Thin Thin Saing Gillian Costello Linda Watson Marianne Hayward Suzi Byer Andy Duncan Raj Shyam Bridget Oates Robin Hyde Elsie Thomson Alan Webb Lisa Vallance Craig Oxley Julie Nicol Apologies Evelyn Menzies Amita Sharma Catriona Morrison John Schulga Mark Glendinning Fiona Cameron Maria Tracey Tracey McGregor Chris Myers Chris Driver Stuart O Toole Ursula Monachan Designation Kidney Kids Scotland, Manager Kidney Kids Scotland Renal Pharmacist Consultant Nephrologist, Network Lead Clinician Parent Representative Staff Grade Paediatrician Associate Director of Nursing, Network Chair Network Co-ordinator Network Manager Senior Charge Nurse Head of Clinical Services Paediatrics & Child Health Advanced Paediatric Nurse Practitioner - Trainee Senior Dietitian Paediatric Renal Clinical Nurse Specialist Senior Paediatric Dietitian Associate Specialist Paediatrician Locum Parent Representative Staff Grade Community Paediatrician Pharmacist Renal Nurse Specialist Programme Manager, National Services Division Consultant Paediatric Surgeon/Urologist Consultant Surgeon & Urologist Ward Manager

2 Agenda Item 1 Welcome & Apologies Gillian Costello welcomed all to the Steering Group meeting. Thanks were conveyed to Elsie Thomson, Senior Dietician, National Health Service (NHS) Grampian for her contributions, personal and professional investment made to SPRUN over the years as this was her last meeting. Julie Nicol, Senior Paediatric Dietitian, NHS Grampian and Lisa Vallance, Paediatric Renal Clinical Nurse Specialist were welcomed to the group as new members. Apologies are as noted above. 2 Terms of Reference and Network Membership The network is accountable to National Services Division (NSD) and is maturing in development and has to be accountable and prepared to be open to scrutiny. The draft Terms of Reference (ToR) and membership list were reviewed. A defined list of members and deputies has been devised to include representation from family groups, regional/national and local Health Board areas thus ensuring that professional and public members have a voice and contribute to development of the Network. Communication, with all of the aforementioned groups, is vital and an audit will be conducted to monitor/review progress communication with these vital links. All communication proformas previously distributed and any comments on the draft ToR should be fed back to Linda Watson by Action All David Hughes encouraged group members to actively contribute to how the Network is developing and the following comments were raised about the current format of steering group meetings and to inform thinking around how group meetings could be reframed in the future: There is a requirement to be more creative and inclusive whilst being mindful of the benefits to be gained by meeting face to face. Making better use of video conference equipment might enable members from more remote areas of Scotland to contribute more often to group meetings A focus around clinical priorities requires to be reinstated into discussion at Steering Group meetings Patients require to clearly see demonstrated what is being achieved in respect of their requests and contributions Clinical Workshop sessions could be arranged in advance

3 of managerial business of the steering group Workshop sessions to be built into education days already established into the Network calendar of events Geographical focus groups, possibly tied in with local family meetings, could be established Clinicians would benefit from needing to complete worthwhile tasks e.g. development of clinical guidelines More opportunity needs to be given to Multi Disciplinary Team working opportunities Consideration should be given to reduced numbers involved with the steering group e.g. core group members with one or two others Less relevant topics could be communicated by Steering group members could meet at educational meetings for one hour catch up Steering group members remit should be of project board status to sign off pieces of work Reframe purpose of group Need to balance the Network s accountability to National Services Division and NHS Boards represented in the Network and the clinical focus and interest from clinicians Group members need more communication and involvement in agenda planning. Draft agenda to be distributed for comment before steering group meetings End products to be identified, prioritised and realistic targets set Process to be in place where members/deputies can inform the core group of any concerns/issues they may have Have separate clinical agendas with feedback sought from group members Key Performance Indicators (KPIs) suggested Marianne Hayward and Linda Watson will liaise with individuals and explore options to be tried and tested. Rebecca Hemingway suggested that SPRUN review clinical care outcomes achieved from the start of the network and record this progress. 3 National Services Division (NSD) - Network Review & Service Directory SPRUN was formally recognised as a Managed Clinical Network (MCN) in 2004 and has grown significantly since. The National network review started in June 2009 and the final report has now been presented to the National Services Advisory Group (NSAG) but the Review outcomes and recommendations have yet to be MAH/LW LW

4 formally endorsed. Marianne Hayward and Gillian Costello were members of the NSD review Project group. SPRUN s overall performance was measured against original network objectives and core principles of MCNs. Please refer to the SPRUN review document and generic recommendations that were distributed previously for further information. 4 Quality Outcome Programme (QOP) & Quality Indicators (QI) Marianne Hayward is taking forward the development of Quality Indicators with the Information Services Division (ISD). ISD s QI document was ed out previously by Linda Watson. A small working group is required to meet and identify four/five indicators which can demonstrate improvements and outcomes achieved through the work of the Network. End products and timelines to be identified. It was suggested that local areas should prioritise their issues and work that is near completion should be built on in the first instance. Improved quality of service to be agreed. MAH/LW Implementation of joint clinics and nephrotic syndrome guideline could be used to measure and demonstrate improvement. QIs require to be realistic, improve patient care, and clinical teams require to be prepared to gather evidence demonstrating better care for patients. The nephrotic syndrome guideline requires a multi-disciplinary team (MDT) approach for updating the current guideline, consulting about the draft and consensus and agreement has to be reached within next six months. DH Steering Group to suggest other QIs and LW by Family Groups Sheena Dunsmore reported that ten families, some of which were new, attended the last meeting at Kidney Kids offices. Kate Munro spoke about the new children s hospital and will update on progress of the plans at a later date. Karen McFarlane informed Steering Group members that Kidney Kids held a family weekend in October 2009 at Hilton Dunblane Hydro. Twenty six families attended. The weekend consisted of family/sibling time, magic shows and a disco. Educational talks and advice were delivered on nephrotic syndrome, dialysis, transplant, social issues, psychology and diet. Feedback from families and medical/clinical colleagues was excellent. Rebecca Hemingway conveyed that Sepi Taheri s talk was very

5 good and clearly understood and of significant value to parents. It was suggested that this would be excellent in a booklet format. Another weekend is planned for October 2010 including topics such as urology and different renal conditions. It was suggested that these talks could be filmed for future reference. The feedback gained from families having participated was acknowledged and welcomed. Local Family Meetings Linda Watson advised that local family meetings have taken place throughout Numbers of families attending have been fairly small but consistent. A family conference is being organised for in Aberdeen. The family meeting in Inverness is scheduled for Various other dates have been set for the Glasgow and Edinburgh areas. All dates will be advertised in due course. 6 Education The clinical conditions of Urinary Tract Infection (UTI) and Henoch Schonlein purpura (HSP) are topics to be discussed on the morning agenda of the education meeting scheduled for These topics are aimed at the wider MDT. The details of the afternoon session are yet to be confirmed but this session is thought will focus upon clinical and specialised cases. Chronic Renal Failure (CRF) is the proposed theme for the meeting on Video conferencing to be explored, possibly with the meeting being hosted from Perth. 7 Guidelines A working group has been set up; members are Bridget Oates, Angela Lamb, Linda Watson and Leah Krischock. Leah Krischock is also part of the National Guideline Group. LW ST/LW Please refer, for information, to the presentation on HSP and Antenatal Renal Pelvis Dilatation (ANRPD) Guideline survey results (Attachment 1). It was suggested that guidelines should be considered National guidelines and not Yorkhill Hospital Guidelines. The nephrotic syndrome guideline was thought to be the next best one to review and complete. Awareness to be raised of Managed Knowledge Network (MKN), housing important information and where it is stored thus ensuring easy access. MCN to explore having guidelines on local intranets. LW

6 It was noted that amendments had been made to the UTI guideline and this is on the Yorkhill Hospital website however this cannot be accessed by all members of the Network. Yorkhill Renal Unit guidelines need to be adapted for wiser use. 8 Renal Medication Information Booklet (RMIB) Marianne Hayward announced that NSD have agreed to sponsor funding to support publication of the RMIB. BO, AL, LW, LK Congratulations were conveyed from Steering Group members to Angela Lamb for her initiative and work in developing such an excellent booklet that will now be sponsored Nationally. 9 NSD Core Data Set No update available at present. 10 Network Achievements Gillian Costello thanked Marianne Hayward who had prepared a presentation to highlight achievements made by the Network however, it was agreed that the content of the presentation would now mirror that previously raised in feedback provided by Marianne in her earlier update about the National Review of MCNs. 11 National Delivery Plan (NDP) Update & Introduction to Workshop session SPRUN hope to have resource for joint clinic working but the network are still awaiting confirmation of successful bids. If services are not implemented by the end of the financial year, monies could be lost. Please refer to David Hughes s presentation (Attachment 2) and the workshop feedback documents (Attachments 3, 4 & 5) for further information. 12 AOB Kidney Kids can apply to trusts for funding of projects. Applications should be made in writing to Kidney Kids Scotland. Related Information is also on their website ( List of Acronyms Antenatal Renal Pelvis Dilatation (ANRPD) Chronic Renal Failure (CRF)

7 Henoch Schonlein pupura (HSP) Information Services Division (ISD) Managed Clinical Networks (MCNs) Multi-disciplinary Team (MDT) National Delivery Plan (NDP) National Health Service (NHS) National Services Advisory Group (NSAG) National Services Division (NSD) Quality Indicators (QI) Quality Outcome Programme (QOP) Renal Medication Information Booklet (RMIB) Scottish Paediatric Renal Urology Network (SPRUN) Terms of Reference (ToR) Urinary Tract Infection (UTI)