scottish paediatric renal urology network
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Scottish Paediatric Renal Urology Network
Annual Report
April 2007 – March
2008
Contents Introduction 3 Executive Summary 3 Background 4 Paediatric Nephrology/ Urology – Scope of the Network 5 Network Structure and Accountability 6 Progress to date (April 2007- March 2008) 8 Financial Report 12 Plans for the Future 13 Appendix 1 – Group Membership 14 Appendix 2 – Summary Results of Nephrotic Syndrome Benchmarking Questionnaire 17 Appendix 3 – Evaluations of SPRUN Pharmacy Seminar 22 Appendix 4 – Evaluations of SPRUN Nurses Event 23
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Introduction The Scottish Paediatric Renal Urology Network is a national managed clinical network, funded by NHS National Services Scotland (NSD) and hosted by NHS Greater Glasgow and Clyde (Women and Children’s Division) set up and accredited by NSD in 2004. The Network is intended to encompass renal and urological disease in children and young people (up to 16) which may require the input of a specialist unit but which can also be managed locally. This annual report charts the progress of the Scottish Paediatric Renal Urology Network (SPRUN) in the year April 2007 to March 2008. Executive Summary In the year April 2007 – March 2008, SPRUN has:
Developed a benchmarking questionnaire to assess level of service provision available locally for children with Nephrotic Syndrome
Increased the number of health board areas using the Renal Medication Information Booklet
Continued to hold meetings for families and children with renal or urological conditions
Continued to hold regular teleconference case discussions Updated the process for teleconference case discussions to reflect
experience to date Held an educational seminar for nurses involved in the care of children
with renal or urological disorders Held an educational seminar for pharmacists involved in the care of
children with renal or urological disorders Developed dietetic inserts for the Renal Medication Information Booklet Prepared and distributed guideline packs for Henoch Schonlein Purpura
and Antenatally Detected Renal Pyelectasis Met with MSPs to discuss services for children with renal and urological
conditions Contributed to the consultation on the National Delivery Plan for
Children and Young People’s Specialist Services In the year April 2008 – March 2009, SPRUN plans to:
The Network will conduct a training needs analysis for all staff within the network speciality
The Network will provide a comprehensive directory of services for children and young people with renal and urology problems
The Network will monitor and develop the provision of good quality written information for families
The Network will support open review of RHSC Yorkhill Renal Unit’s clinical guidelines for national adaptation and use (this should include medical, nursing and other clinical guidelines and protocols)
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The Network will establish a ‘link nurse’ for the Network in each local area, to work along side the 12 link clinicians
Background Managed Clinical Networks In 2002 the Scottish Executive issued NHS HDL (2002) 69 “Promoting the Development of Managed Clinical Networks in NHS Scotland” to confirm their commitment to Managed Clinical Networks (MCNs). MCNs are described in the HDL as: Linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and health board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland. Following on from the recommendations in Delivering for Health, the Scottish Executive issued a further HDL in 2007. NHS HDL (2007) 21 “Strengthening the role of managed clinical networks” reiterated the core principles of MCNs from previous guidance and produced revised guidance aimed at strengthening MCN’s authority and increasing their influence over the way in which resources are allocated for services. Scottish Paediatric Renal Urology Managed Clinical Network The Scottish Paediatric Renal Urology Network is a national managed clinical network, funded by NHS National Services Scotland (NSD) and hosted by NHS Greater Glasgow and Clyde (Women and Children’s Division) set up and accredited by NSD in 2004. The Network is intended to encompass renal and urological disease in children and young people (up to 16) which may require the input of a specialist unit but which can also be managed locally. The Network will facilitate the care of children and young people with renal disease via local teams delivering care close to home with information and intervention being provided, as necessary, by the specialist unit. The vision of the Scottish Paediatric Renal Network is that by collaboration and multi-disciplinary working there will be a significant improvement in the outcomes of children and young people with renal and urological disease. The SPRUN is run from the Managed Clinical Networks Department within RHSC Yorkhill. The Lead Clinician for the Network is Dr David Hughes, Consultant Paediatric Nephrologist (RHSC Glasgow).
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Derrick Pearce, who has managed the SPRUN since 2006, left the Network in September 2007. Derrick brought great enthusiasm and a dynamic approach to the development of the SPRUN and was integral to the success the Network has become today. The Network currently has temporary management from the MCN department and a new manager will be recruited shortly. Linda Watson has taken on the role of the Network Administrator for SPRUN. Anna Murphy who has been the Network Advisor to the SRUN in recent times has also left the Network. Anna was fundamental to the establishment of SPRUN and acted as the first lead clinician for the Network. Her enthusiasm and drive led to the formation and development of a strong foundation for SPRUN. Paediatric Nephrology/ Urology – Scope of the Network Accurate data on the numbers of children and young people in Scotland with renal/urology disease was not available when the SPRUN was launched. SMR data reports have shown that renal and urology conditions have accounted for an average of 5,000 inpatient admissions in Scotland each year since 2003. This figure amounts to approximately 3,400 individual children and young people per annum. We are not yet in a position to report on the number of children and young people affected as outpatient data does not show diagnoses. Thus, the numbers we can report relate only to those children who require a stay in hospital and not the great many who may have a renal or urology condition but who are seen by a healthcare professional as an outpatient. The disease categories covered by SPRUN include:
Complex Steroid Sensitive Nephrotic Syndrome Acute and Chronic Renal Failure Glomerulonephritis Renal Biopsy, Hypertension, Metabolic/Tubular Disease Nephro-Urology problems (eg neuropathic bladder)
In addition to these very specialised and less common renal/urology diagnoses it has become clear that many children and young people have more common urological conditions requiring multidisciplinary assessment and management which the Network can support. The SPRUN seeks to take an interest in any condition which influences the renal and bladder function, and where there may be a need for service developments to increase effectiveness thus preventing more serious problems arising.
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Network Structure and Accountability The Scottish Paediatric Renal Network is organised around 12 local areas representing the 14 Health Boards. There are on average 2 representatives for each local area on the Steering Group, as outlined below. Peter Bates, former Chairman of NHS Tayside, chaired the Network since its inception until 2007. The SPRUN is extremely grateful for his contribution and support over this time. We will miss his dynamism in conducting our steering group meetings and his considerable knowledge of Scottish Health Service structures when advising on taking forward our aims. He is succeeded in this role by Gillian Costello, Head of MCNs for Tayside. The Network Chair acts as an independent/ lay member of SPRUN. Local Services – Local Paediatric Renal Urology Groups There are 12 evolving paediatric renal/urology groups responsible for delivering services for children and young people with renal/urology diseases or needs in their local area. The local groups are headed up by the SPRUN ‘Link Clinicians’ – who are Consultant General Paediatricians with an interest in renal medicine or urology – supported by a nurse with interest, and wider multidisciplinary team members where these are available. The role of the link clinician is:
Regularly attending the Network Steering Group Disseminating network information to relevant stakeholders in their
clinical and geographical area Leading on local implementation of agreed guidelines and care
pathways Initiating, leading and supporting local service development Contributing to Network developments and working groups Supporting the network management team Promoting and facilitating audit of paediatric renal and urological
services locally and nationally Sharing collective responsibility for the performance, direction and
leadership of the network. Supporting the active involvement of children, young people and their
families in the planning of individual care, service delivery and development
Local services work collaboratively within their region as well as nationally to ensure that specialists and resources are shared effectively. The SPRUN encourages and supports collaborative working at a regional level as well as locally, for individual service needs and nationally.
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SPRUN Groups The SPRUN Groups consist of stakeholders of the network who have a common interest in a particular aspect of our work (e.g. Care Pathways). The Groups are supported by the Network Management Team and report into the Steering Group. The SPRUN hosts the following sub groups:
SPRUN Families Group Clinical Guidelines and Care Pathways Group SPRUN Pharmacists Group SPRUN Nurses Group Scottish Enuresis Interest Group Training and Education Group/ Scottish Paediatric Renal Group (SPRG) SPRUN Dietitians Group
More detail on each of these reports and a report on their work is given later in this report. Network Steering Group The purpose of the Network Steering Group is to support and steer the development of a managed clinical network for paediatric renal and urological services in Scotland. This will include the support and development of collaborative multi-professional teams throughout Scotland. The Steering Group is accountable to National Services Division and the Health Boards for
• Developing the Strategic direction of the Network • Developing Strategic Alliances for the network • Ensuring the Network meets its objectives strategically and locally • Supporting the Network Management Team (Core Group) • Accounting for performance against the National Services Division
Service Level Agreement.
The steering group membership – which includes parents, carers and non-NHS supporters – is supported by the Network Management Team to attend meetings regularly, or arrange a deputy to attend and take responsibility for action agreed at the meeting. Members communicate information to and from the organisation, discipline or constituency they represent, acting as a conduit to ensure that all professionals, organisations and families are involved. The Steering Group meets for formally for a full day session three times a year. Network Management Team/Core Group The Network Management team/Core Group consists of the Network Lead Clinician, Network Manager and Network Administrator. The Network Lead
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Clinician is accountable to the Steering Group for ensuring consistent clinical leadership of the network and is ultimately accountable for the MCN. The Network Manager is responsible to the Paediatric Clinical Networks Department of NHS Greater Glasgow and Clyde (the host Health Board), and accountable to the Lead Clinician and Steering Group for the day-to-day operational management of the Network, including a devolved budget and any additional investment. The Network Administrator is accountable to the Network Manger for delivering a full administration, technical and support service to the Network. Progress to date (April 2007 – March 2008) It has been a particularly challenging year for SPRUN with a number of personnel changes in the core team. The network has been without a Network Manager for much of the year and this has put considerable pressure on the rest of the team and made it difficult for the Network to progress at same rate. However, despite these challenges and with considerable effort from the rest of the team SPRUN has made some significant advancements within the year. The Service Level Agreement (SLA) between the SPRUN and National Services Division for the period April 2007 to March 2008 set out the following 5 key objectives:
1. The network will undertake an extended benchmarking exercise in order to define what care should be delivered in each setting using a questionnaire based on the patient journey
2. Establish network wide use of Renal Medication Information Booklet (RMIB) undertaking two pilots in two areas as a first step.
3. The network will develop, agree and submit a quality assurance framework to NHS QIS for accreditation.
4. The network will facilitate and support the SPRUN families group to ensure the active participation of children, young people, their families and their supporters
5. The Network will stabilise and strengthen the SPRUN teleconferencing case discussion service
Performance Against 5 Key Objectives Objective Narrative Status 1. An initial benchmarking questionnaire has been
developed for Nephrotic Syndrome based on the guideline. The format of the questionnaire is designed to assess what services identified in the guideline are available and to what level they are accessible in each SPRUN locality. The Nephrotic Syndrome questionnaire
Partially achieved
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is being used to pilot this format and if considered successful similar questionnaires will be developed for other renal/ urological conditions. The Nephrotic Syndrome questionnaires have been circulated to all local link clinicians for completion with their local teams. The responses have now been received from most areas and collated. A selection of some of the results are shown in Appendix 2. From the results received to date there appears to be differing levels of access to support services in different areas.
2. During 2007/2008 the RMIB has been piloted in Lanarkshire and Ayrshire and Arran. The booklet is now being used widely across the country. In some health board areas the booklet is currently being used on a sporadic basis so SPRUN is now seeking a named individual in each health board area to formalise use of the RMIB. Additional inserts are also being developed by other professional groups within the Network.
Partially achieved
3. In response to the growing number of managed clinical networks at all levels (local, regional, national) in Scotland, NHS QIS decided in 2006 to review the processes for development and accreditation of Network QAFs. This review has been ongoing and NHS QIS now plan to pilot the new process during 2008/2009. The SPRUN has therefore not been able to achieve this objective in this year but continues to recognise this as a priority and will move forward with this objective when the framework becomes available.
Not achieved (outwith the control of SPRUN)
4. During the year 2007/2008, family group meetings have continued to be held in the West of Scotland and in the North of Scotland. SPRUN has also worked with the clinicians in the East of Scotland to promote the idea there.
Achieved
5. Following the inaugural year of the teleconferencing case discussion service, SPRUN held review meetings in December 2007 with all those involved. Following the review, changes were made to the structure of the service to improve the educational potential, to enable the service to be offered to more centres and to better utilise time. Sessions are now held 4 times per year in the west of Scotland with Ayrshire and Arran, Lanarkshire, Dumfries and Galloway, and Stirling linking to RHSC in Glasgow. Similarly there are four sessions per year in east of Scotland with Borders and Fife linking in to RHSC Edinburgh. Information has been sent out to all consultant paediatricians in the areas to encourage them to make use of the service
Achieved
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through their local link clinician. Additional Performance Information SPRUN Nurses Group In June 2007 the SPRUN nurses group held their first educational seminar. The meeting was very successful with very positive evaluations (shown as an appendix to this document) though unfortunately it was not as well attended as we had hoped. In recognition of the importance of the nurse role in the care of children with renal and urological disorders, SPRUN has written to all the directors of nursing to raise awareness of the Network. It is hoped that health boards will commit to the idea of managed clinical networks and to ensuring multidisciplinary staff have time built into their job plans to take part in the range of Network activities. The core nurses group have also developed further plans to create information sheets for common issues such as obtaining urine from children under 2, obtaining an accurate blood pressure in children and also some information on nephritic syndrome. SPRUN Nurse Advisor Post During 2007/2008, the development of the nursing role within the Network was thought to be a key priority and Kidney Kids offered to fund a Nurse Advisor post to take this forward. Following discussion it was felt that one post might not be practical with the geographical range covered by the Network and options are being considered as to how best this role could be delivered. SPRUN Pharmacists Group A SPRUN pharmacists group seminar was held in April 2007. The event was a great success and a summary of the evaluations are shown as an appendix to this report. Another event is planned for 2008 looking at haemodialysis and psychology issues. SPRUN Dietitians Group The SPRUN dietitians group have developed inserts for the RMIB with information on diet. The group are also working on training materials and resources that will be evidence based and will be updated regularly. It is hoped the materials will eventually be available from the SPRUN website to support dietetic management of children with renal impairment across Scotland. Due to the scale of this project the group will be seeking additional
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funding to secure protected time for the development of this valuable resource. Clinical Guidelines Guideline packs have been prepared and distributed for Henoch Schonlein Purpura and antenatally detected Renal Pyelectasis. The purpose of the documents within these packs was for relevant recipients to use, review and adapt them as necessary for local use. The documents were designed so that they could be individualised by each centre (e.g. hospital name, contacts, and so on can be changed to suit the user). The Henoch Schonlein Purpura pack is made up of: a renal monitoring record, renal management presentation and information for doctors diagnosing Henoch Schonlein Purpura. The antenatal detected Renal Pyelectasis pack is made up of information leaflets and guidelines for management. All the above information was also put on CD and enclosed with the packs so that information was easily adaptable. Packs were sent to all steering group members, link paediatricians, A&E Depts., Primary Care, Health Boards Bodies, Boards of Medical Directors and NHS 24. Scottish Enuresis Interest Group (SEiG) The SEIG is a multidisciplinary group of health professionals interested in establishing standards and the promotion of best practice in enuresis. There are representatives from 11 of the 14 health boards attend from various services and disciplines. The group have established what services are available across Scotland and established contacts in each area. The group meets 2 to 3 times per year for training, sharing of information and building links. Scottish Parliament Links On the 20th March 2008, members of the Network were invited to the Scottish Parliament to discuss the work of the Network and how services for children with renal and urological conditions and their families could be improved. The event was organised by Michael Matheson MSP and Kidney Kids, who also talked about the role of the charity. As a result of this event, Kidney Kids and members of the Network will meet with Nicola Sturgeon, Cabinet Secretary for Health and Wellbeing on the 24th September 2008. National Delivery Plan for Children and Young People’s Specialist Services In March 2008, the Government launched a consultation event on the draft document “National Delivery Plan for Children and Young People’s Specialist Services”. SPRUN was fortunate to have Dr Morgan Jamieson to speak at a steering group meeting. At the meeting Dr Jamieson asked the Network to comment on a number of issues from the NDP and following the meeting SPRUN submitted an official response.
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Within the response returned, SPRUN addressed: The importance of supporting established MCNs along with the
development of the identified new MCNs The importance of clear and robust mechanisms for MCNs to influence
planning and commissioning services The importance of careful consideration to how services are defined in
looking at the concept of ‘Managed Service Networks’ Welcoming the recognition of the role of the four children’s hospitals
(Glasgow, Edinburgh, Dundee and Aberdeen) and looking to the NDP to address the variation in service levels in part by allowing the resources for development of local nursing and AHP staff.
The need for mechanisms of local accountability in supporting and delivering the standard of speciality care locally agreed by the clinical network
Welcoming sharing of skills and experience between MCNs but emphasising the importance of relationships within a Network and the role of the Network manager and Administrator in developing and maintaining the relationships.
The importance of technical support for teleconferencing as part of this development and developing the IT systems to support cross boundary working in tandem with these developments
Developing new models of care looking at extended roles for nurses and AHPs supported by resourced training and education
Our response has been allocated the reference number CON977 -60 and will be available to view along with other responses on the Scottish Government consultation web page (http://www.scotland.gov.uk/consultations) by 23rd June 2008. Financial Report Income
Description Amount
NSD Allocation £5,000
Payment from Kidney Kids £2,800
Payment from Ferring £500
Total £8,300
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Expenditure
Description Amount
Expenses £168.83
Meetings £2682.16
Family Groups £596.36
Total £3,447.35
Plans for the Future The last year has been another productive year for SPRUN but there is still a lot of potential within the Network. During 2007/2008, SPRUN agreed with NSD objectives for the Network covering the next two years as shown below: 2008/2009
The Network will conduct a training needs analysis for all staff within the network speciality
The Network will provide a comprehensive directory of services for children and young people with renal and urology problems
The Network will monitor and develop the provision of good quality written information for families
The Network will support open review of RHSC Yorkhill Renal Unit’s clinical guidelines for national adaptation and use (this should include medical, nursing and other clinical guidelines and protocols)
The Network will establish a ‘link nurse’ for the Network in each local area, to work along side the 12 link clinicians
2009/2010
The Network will organise and host multi-disciplinary training days based on agreed national standards and the outcome of training needs analysis
The Network will address the need to tackle improvements required in data collection and analysis via the appropriate system (eg via Gneric Clinical System)
The 2009/2010 objectives will be expanded over the next year.
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Appendix 1 - Group Memberships Steering Group Chair: Gillian Costello, Head of Managed Clinical Networks, NHS Tayside Fiona Cameron, Consultant Community Paediatrician, NHS Lanarkshire Nicola Crawfurd, Community Children’s Nurse, NHS Dumfries and Galloway Heather Donald, Dietitian, NHS Tayside Janie Donnan, Senior Clinical Psychologist, NHS Greater Glasgow and Clyde Chris Driver, Consultant Paediatric Surgeon/Urologist, NHS Grampian Andy Duncan, Head of Clinical Services & Child Health, NHS Borders Sheena Dunsmore, Kidney Kids Scotland Manager Alasdair Fyfe, Consultant Paediatric Urologist, NHS Greater Glasgow and Clyde Rebecca Hemmingway, Parent Representative David Hughes, Network Lead Clinician Maggie Jack, Renal Social Worker, Glasgow Angela Lamb, Specialist Renal Pharmacist, NHS Greater Glasgow and Clyde Mary Loudon, Consultant Paediatrician, NHS Lanarkshire Donald Macgregor, Consultant Paediatrician, NHS Tayside Bill Manson, Consultant Paediatric Surgeon & Urologist, NHS Lothian & Tayside Karen McFarlane, Kidney Kids Scotland Tracey McGregor, Renal Nurse Specialist, NHS Lothian Kathleen McHugh, Senior Clinical Psychologist, NHS Greater Glasgow and Clyde Evelyn Menzies, Associate Specialist Paediatrician, NHS Fife Ursula Monachan, Ward Manager, Renal Unit, NHS Greater Glasgow and Clyde Bridget Oates, Consultant Paediatrician, NHS Ayrshire and Arran Stuart O’Toole, Consultant Paediatric Surgeon & Urologist Craig Oxley, Consultant Paediatrician, NHS Grampian Caroline Porter, Community Children’s Nurse, NHS Greater Glasgow and Clyde Pat Rankine, Community Children’s Nurse, NHS Highland T Reddy, Consultant Paediatrician, NHS Highland Lynne Riach, Renal Nurse Specialist, NHS Grampian Thin Thin Saing, Staff Grade Paediatrician, NHS Lanarkshire John Schulga, Consultant Paediatrician, NHS Forth Valley Amita Sharma, Consultant Paediatrician, NHS Greater Glasgow and Clyde Chrissie Smith, Paediatric Staff Nurse, NHS Borders Sepideh Taheri, Consultant Paediatrician, NHS Lothian Jaquie Taylor, Paediatric Nurse, NHS Fife Elsie Thomson, Senior Dietitian, NHS Grampian Ruth Thomson, Consultant Paediatrician, NHS Dumfries and Galloway Linda Watson, Network Administrator Alan Webb, Consultant Paediatrician, NHS Highland
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SPRUN Nurses Group Carol Graham, NHS Dumfries and Galloway Claire Haggerty, NHS Greater Glasgow and Clyde Margaret Henderson, NHS Greater Glasgow and Clyde Diane King, NHS Greater Glasgow and Clyde Karen Leitch, NHS Greater Glasgow and Clyde Tracey McGregor, NHS Lothian Ursula Monachan, NHS Greater Glasgow and Clyde Pat Rankine, NHS Highland Barbara Simpson, NHS Dumfries and Galloway Jacquie Taylor, NHS Fife Rosealene West, NHS Tayside SPRUN Dietitians Group Heather Donald, NHS Tayside Emma Kehoe, NHS Greater Glasgow and Clyde Esther Neill, NHS Greater Glasgow and Clyde Julie Nicol, NHS Fife Elsie Thomson, NHS Grampian Gillian Walker, NHS Lothian SPRUN Pharmacist’s Group Christine Benson, NHS Dumfries and Galloway David Mitchell, NHS Fife Gail Healey, NHS Forth Valley Hazel Gueldner, NHS Borders Jenny Mosley, NHS Grampian Joe Richards, NHS Tayside Angela Lamb, NHS Greater Glasgow and Clyde Lynsay McAulay, Mairi Dunbar, NHS Highland Maria Tracey, NHS Greater Glasgow and Clyde Marie Currie, NHS Ayrshire and Arran Valerie MacGregor, NHS Grampian SEIG Steering Group Lead Clinician: Fiona Cameron, Staff Grade Community Paediatrician, NHS Lanarkshire Rosemary Allan, Staff Nurse, NHS Ayrshire and Arran Rosslyn Armour, NHS Lanarkshire Heather Barnwell, School Health Nurse, NHS Tayside
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Louise Brown, NHS Borders Gwyn Buchan, S/G Community Paediatrician, NHS Lothian Jean Burton, School Nurse, NHS Greater Glasgow and Clyde Gill Currie, Community Children’s Nurse, NHS Highland Tracey Doyle, School Nurse, NHS Greater Glasgow and Clyde Trisha Gibson Lynne Gorman, School Nurse, NHS Lanarkshire Carol Graham, Community Children’s Nurse, NHS Dumfries and Galloway Sarah Henderson Fiona Johnstone, Staff Nurse, NHS Ayrshire and Arran Susan Jones, Glasgow Tricia McKenzie Glynis McBride, Health Visitor, NHS Forth Valley Agnes McCallum, School Nurse, NHS Lanarkshire Susan McLoone, School Nurse, NHS Lanarkshire Clair McNeil, School Nurse, NHS Greater Glasgow and Clyde Wilma Nicolson, Continence Advisor, NHS Grampian Jackie Price, School Nurse, NHS Borders Sandra Rae, NHS Lanarkshire Lesley Randall, Continence Advisor Angela Reilly, NHS Greater Glasgow and Clyde Sheena Robinson, NHS Greater Glasgow and Clyde Moustafa Shanin, S/G Community Paediatrician, NHS Forth Valley Sheila Shearer, Continence Advisor, NHS Grampian George Sneddon, School Nurse, NHS Highland Christine Stibbles, School Health Nurse, NHS Tayside David Tappin, Community Paediatrician, NHS Greater Glasgow and Clyde Marjorie Telford, School Nurse, NHS Lothian Denise Traynor, NHS Greater Glasgow and Clyde Dorothy Yeates, Associate Specialist Community Paediatrics, NHS Fife
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Appendix 2 – Summary Results of Nephrotic Syndrome Benchmarking Questionnaire
Patient information booklet/leaflet provided at presentation/ diagnosis
0
1
2
3
Always Usually Sometimes Rarely Never
Centres DGHs
Source of patient information
0
1
2
3
4
NottinghamBooklet
BKPA leaflet NKF leaflet Websitedownload
Other
Pharmacy support of the treatment of children presenting with nephrotic syndrome is available
0
1
2
3
4
5
Always Usually Sometimes Rarely Never
DGHsCentres
17
Side effects and risks of steroid treatment are provided as written information
0
1
2
3
4
5
Always Usually Sometimes Rarely Never
DGHsCentres
Paed dietetic support provided to all parents at
presentation/ diagnosis of children presenting with nephrotic syndrome
0
1
2
3
4
5
Alway
s
Usuall
y
Someti
mes
Rarely
Never
DGHs
Centres
Written dietetic info related to nephrotic
syndrome given to newly presenting cases
0
1
2
3
Alway
s
Usuall
y
Som
etimes
Rarely
Never
DGHs
Centres
18
Paed dietetic support readily accessible for local general paediatric dietitians if required
(DGHs)
0
1
2
3
Alw ays Usually Sometimes Rarely Never
Initial in patient stay parents are taught to perfom, interpret & record dipstick analysis for
protenuria
012345678
Alway
s
Usuall
y
Som
etimes
Rarely
Never
DGHs
Centres
At discharge parents are provided with adequate Albustix for home urine monitoring
012345678
Alway
s
Usuall
y
Som
etimes
Rarely
Never
DGHs
Centres
19
At discharge parents are provided with written information on:
0
1
2
3
4
5
6
Med
s
Emer
genc
yC
onta
cts
Follo
w u
p
Med
s
Emer
genc
yco
ntac
ts
Follo
w u
p
Med
s
Emer
genc
yco
ntac
t
Follo
w u
p
Med
s
Emer
genc
yco
ntac
ts
Follo
w u
p
Med
s
Emer
genc
yco
ntac
ts
Follo
w u
p
Alw ays Usually Sometimes Rarely Never
DGHsCentres
Paediatric dietetic support provided at follow up
0
1
2
3
4
5
Always Usually Sometimes Rarely Never
DGHsCentres
20
Opthamology review available
0
1
2
3
4
5
Always Usually Sometimes Rarely Never
DGHsCentres
21
Appendix 3 – Evaluations of SPRUN Pharmacy Seminar
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Appendix 4 – Evaluations of SPRUN Nurses Event
Were you satisfied with the format of the meeting?
V. satisfiedSatisfiedNeutralDissatisfiedV. dissatisfied
Were you satisfied with the organisation of the meeting?
V. satisfiedSatisfiedNeutralDissatisfiedV. dissatisfied
How would you rate the venue and the catering? (5 being best and 1 being
worst)
12345
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Did you find this event a good use of your time? (5 being best and 1 being
worst)
12345
Comments
Excellent networking. Provide list of contacts. Good idea, good networking, good to learn from CCN Thoroughly enjoyed meeting – would like to see it extended to ward-
based nurses. Nicola’s talk was excellent Very useful for understanding what focus and plan of MCN. Database
of nurses involved in renal throughout Scotland would be very helpful. Overall – very good day.
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