Managed Clinical Networks
Specialist Children's Services
Yorkhill
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Epilepsy
Muscle
Inherited Metabolic Disease
Genital Anomalies
Diaphragmatic Hernia
Rheumatology
Endocrinology
Renal and Urology
Complex Mental Health Needs
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
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
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
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
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.
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.
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
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.
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
• Established since 2004.
• Shared Care clinics in all children's
hospitals
• Teleconferencing
• Families Groups
• Protocols and Guidelines
• Education Strategy
SCOTTISH PAEDIATRIC RENAL UROLOGY NETWORK
Introduction of Network:
Achievements:
Established via Application to Scottish Executive -
Future Work:
NEPHROTIC SYNDROME
BENCHMARKING QUESTIONNAIRE
Families’ Network:
National Services Advisory Group Process in 2003
AIMS:
To obtain a multi-disciplinary perspective on how well
centres throughout Scotland deliver care for patients with
Nephrotic syndrome

Formally Designated as a National Managed Clinical
Network by National Services Division in 2005
Mandate to improve local access and develop equity of
OBJECTIVES:
To identify service gaps
To achieve acceptable standard of care through
education/training needs
To enhance shared care



services across the country for all children and young
people with renal and urology needs
 Geographic, multi-agency, family centred
Aim of Network:
Patient Held Record:
METHOD:
A ‘tick box’ questionnaire was sent to link clinicians to be
completed by the local multi-disciplinary team

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
RESULTS:
Clinical guidelines are freely and easily available to all
clinical staff dealing with possible cases presenting
with childhood nephrotic syndrome
the network. The network also link with:
Benchmarking:
DGH
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
Sometimes
A&E
Paed
Ward/Department
A&E
Paed
Ward/Department
A&E
A&E
Usually
Rarely
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:
Never
Investigations are performed at presentation
Investigations are performed at presentation
7
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.
6
5
4
DGH
3
Centres
2
Education:
Usually
Varicella
Rarely
U. Na
Concentration
U.P: CRatio
U. Na
Concentration
Varicella
Sometimes
U.P: CRatio
U. Na
Concentration
Varicella
U.P: CRatio
Varicella
Alw ays
U. Na
Concentration
0
U.P: CRatio
1
Varicella
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 RMIB is
an 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).
Alw ays
Paed
Ward/Department
RENAL MEDICATION INFORMATION BOOKLET
AWARD
Paed
Ward/Department
A&E
Paed
Ward/Department
Centres
U. Na
Concentration
professions: nurses, pharmacists, dietitians, psychologists
and medics
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.
Clinical Guidelines are freely and easily available
8
7
6
5
4
3
2
1
0
U.P: CRatio
Tertiary centres
District General Hospitals
Primary Care
Multi-disciplinary teams include the following
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:
WHO’S INVOLVED?
Child and Family are central to the aims and purpose of
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.
Never
There is a newly agreed departmental protocol for the initial steroid course in
newly presenting patients
Newly agreed department protocol for initial steroid
course
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.
7
6
5
Yes
4
3
No
2
1
0
Centres
DGHs
The agreed initial steroid protocol is used by the local paediatric
clinicians for newly presenting patients
The agreed initial steroid protocol is used by local
paediatric clinicians for newly presenting patients
8
7
6
5
4
3
2
1
0
DGHs
Centres
Always
Usually
Sometimes
Rarely
Never
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
November 2008
Published
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
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…”