Managed Clinical Networks

Cleft Care Scotland (CCS)

GGC Contact: David Drake

Cleft Care Scotland (CCS) is a national managed clinical network (NMCN) which aims to improve services for people born with a cleft lip and/or palate throughout their life.

CCS is one of a range of specialist networks within theNational Network Management Service(NNMS) which is part of NHS National Services Scotland; a national board operating at the heart of NHS Scotland. NNMS is responsible for commissioning national networks on behalf of the Scottish Government Health & Social Care Directorates.

The CCS vision statement is:

“Every patient with a cleft lip, cleft palate or cleft lip and palate is offered specialist cleft care from diagnosis to adulthood. We work with the family to offer the right care in the right place at the right time to produce the best possible outcome for the patient.”

There are lots of people involved in CCS including patients and their families and representatives, nurses, dentists, orthodontists, surgeons, speech and language therapists.

Cleft Care Scotland website

Inherited Metabolic Disorders Scotland (IMDScotland)

GGC Contact: Alison Cozens

IMD Scotland website

What is IMD Scotland?

IMD Scotland is a national managed clinical network for Inherited Metabolic Disorders (IMD). It is hosted by NHS National Services Scotland on behalf of Scottish NHS Boards. The network is led by a Lead Clinician – currently Dr Alison Cozens (Consultant in Paediatric Inherited Metabolic Medicine) – with managerial and administrative support from a Programme Manager (Karyn Robertson) and Programme Support Officer (Mary Glen). The work of IMD Scotland is overseen by an Advisory Group, which is currently chaired by Sally Egan, Associate Director and Child Health Commissioner in NHS Lothian.

Who is part of IMD Scotland?

A range of healthcare professionals who are involved in the diagnosis and care of children or adults with inherited metabolic disorders in Scotland make up the membership of IMD Scotland. This includes paediatricians, dietitians, biochemists, geneticists, nurses and physicians. Patients, families and the voluntary sector are essential partners in IMD Scotland and also contribute to the network.

What are IMD Scotland’s Aims and Objectives?

The aims of IMD Scotland are described in the network mission statement: to improve the diagnosis, treatment and support for all individuals and families affected by Inherited Metabolic Disorders, wherever in Scotland they live.

The IMD Scotland key objectives are:

Development of specialist IMD services within Scotland to improve access to the specialist services through outreach and joint working
Support for general physicians in the detection, investigation and management of inherited metabolic disorders
Development of standards, care pathways and protocols of care
Education of healthcare professionals in the detection, investigation and management of inherited metabolic disorders
Development of an audit programme for people with inherited metabolic disorders to ensure adherence to treatment standards and a high standard of outcomes
Provision of education and support to people with IMD and their families, including engagement with families by the network
Engagement with other professional groups to raise awareness of IMD, including education, social work and voluntary services

National Inherited Cardiac Conditions Scotland (NICCS)

GGC Contact: Karen McLeod

The Network for Inherited Cardiac Conditions Scotland (NICCS) – previously knows as FANS – is a National Managed Clinical Network comprising cardiologists, geneticists, pathologists, nurses, genetic counsellors and patient representatives, whose goal is to ensure that people at risk of sudden cardiac death due to inherited cardiac conditions (ICCs), receive timely and high quality care to improve their chances of a normal, healthy life and prevent sudden cardiac death.

NICCS website

Neonatal Managed Clinical Networks

GGC Contact: Andrew Powls

The neonatal MCNs in Scotland have been in development since July 2009, each having a Lead Clinician and a Network Manager.

The aims of the networks are:

To support the delivery of high quality neonatal care for all their residents
To ensure that mothers and babies are treated in the right hospital at the right time and by the right staff with the appropriate skills.
To agree a model of care based on core values where provision of care should be provided as close to home as possible, minimising transport where possible but accepting that some babies may require transfer for intensive care services
Agree pathways of care and clinical guidelines
To provide high quality services by addressing key issues such as data collection, capacity, workforce, education and training of staff
To audit activity and outcomes of neonatal services both across the network and against national statements within Neonatal Care in Scotland: A Quality Framework, published in March 2013 (see link on page)
To consult with and collaborate with users of the service to enhance the services and their experiences
Each neonatal MCN to work inter-regionally

This is supported by the development and publication by the Scottish Government of the document "Neonatal Care in Scotland: A Quality Framework."

The MCNs report progress through their respective Regional Planning Groups (RPG), National Planning Forum (NPF) and Scottish Government (SG)

Neonatal Managed Clinical Networks website

West of Scotland Neonatal Managed Clinical Networks webpages

Phototherapy Network (Photonet)

The National Managed Clinical Network for Phototherapy in Scotland (Photonet) was formed under a service agreement between NHS Tayside and the National Services Division (NSD) on 1 November 2002.

The Network provides a comprehensive, multi-disciplinary service for the treatment of patients who require phototherapy treatment for management of skin disorders. The management arrangements include representation from patients’ organisations. The Network is responsible for reporting to NSD – the commissioners of the service.

One of the main features of the Network was the development of a centralised computer system (PhotoSys) to provide storage and retrieval facilities for patient treatment records. PhotoSys will assist in ensuring each centre provides the same level of service. In addition it is used to identify patients with a heightened risk of developing skin cancer due to extensive exposure to ultraviolet sources, and these patients would then be invited to come for yearly skin screening and examination.

Photonet website

Scottish Muscle Network (SMN)

GGC Contact: Iain Horrocks

Scottish Muscle Network website

The Scottish Muscle Network (SMN) is a national managed clinical network for children and adults with neuromuscular disorders.

The Scottish Muscle Network (SMN) is a national managed clinical network (NMCN) originally established in 1998 with charitable funding from the Muscular Dystrophy Campaign. SMN is now funded by NHS National Services Division (NSD). SMN was established with the following aims:

To raise awareness of neuromuscular disorders
To promote the delivery of an equitable, high quality service to all patients with a neuromuscular disorder across Scotland

SMN brings together everyone involved in neuromuscular disorders. For example this includes:

Patients and families
Healthcare professionals
Social Care
Research
Charities
Education

The Scottish Muscle Network collaborates with a number of agencies to drive improvement in services for people living with neuromuscular conditions. For example, this may include:

Educational events
Development of standards
Patients and family events
Auditing standards of care
Infrastructure to support research
Information provision

Scottish Paediatric and Adolescent Infection and Immunology Network (SPAIIN)

GGC Contacts: Conor Doherty / Rosie Hague

Scottish Paediatric and Adolescent Infection and Immunology Network (SPAIIN) website

The Scottish Paediatric & Adolescent Infection & Immunology National Managed Clinical Network (SPAIIN) was established in 2011 to improve access to and the quality of services for children with HIV and Primary Immune Deficiency (PID).

The network was reviewed in 2016, and expanded its remit to include PID for all ages of people. The remit within infectious diseases was also expanded to include Hepatitis C and Hepatitis B.

Fiona Marra is the Clinical Lead based at Queen Elizabeth University Hospital, Glasgow. The Network Manager is Hugh Kennedy, and the Programme Support Officer is Mary Glen, both based at Meridian Court, Cadogan Street, Glasgow.

Scottish Paediatric and Adolescent Rheumatology Network (SPARN)

GGC Contact: Neil Martin

The remit of SPARN is to ensure that all children with rheumatic conditions are diagnosed promptly and managed appropriately. The care for children with rheumatic conditions will be delivered by multidisciplinary local teams with input from paediatric rheumatologist at network clinics.

The network’s aims are:

To promote equity of access to the best possible care for all children with rheumatic conditions in Scotland regardless of geography
To support local delivery of care where possible through the establishment of a network of services with locally based specialist multidisciplinary teams working in partnership with expert teams from the tertiary centres
To ensure that care delivered meets agreed national standards of care
To support services in improving standards of care through the establishment of continuous quality improvement

Within their websiteyou will find:

Current Network Activities
Information on events
Network newsletters and other publications
Information on SPARN work-streams such as Education programme and SPARN guidelines
Links to relevant organisations
Information for Parent/Carers

Scottish Paediatric and Adult Haemoglobinopathies (SPAH) Network

GGC Contact: Elizabeth Chalmers

Scottish Paediatric and Adult Haemoglobinopathies (SPAH) Network website

SPAH is within the National Network Managed Service (NNMS) funded by National Services Division (NSD) and hosted by National Health Service (NHS) National Services Scotland.

The network was formally established on 1st April, 2011.

The definition of a Managed Clinical Network is:

“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”

The network’s aims are:

To provide links to the Newborn Screening Programme to ensure sensitive and timely confirmation of diagnosis, and early access to clinical care package for all infants suspected of having a major haemoglobinopathy.
To ensure prompt diagnosis and access to treatment for cases detected beyond the new born period.
To ensure access to appropriate and prompt acute care when required for all children and adults, particularly effective acute pain management services.
To ensure access to multidisciplinary health care professional team who are knowledgeable about these conditions.
To facilitate provision of specialist investigations as defined in national care guidelines.
To ensure access to a support network/charitable network who will be able to offer guidance on day to day living.
To ensure access to services in a location that is suitable for their needs as close to home as possible.

Scottish Paediatric Epilepsy Network (SPEN)

GGC Contacts: Stewart MacLeod / Sameer Zuberi

SPEN website

The Scottish Paediatric Epilepsy Network (SPEN) is a national managed clinical network. SPEN brings together people involved in paediatric epilepsy from all over Scotland to agree the way forward for epilepsy services. The SPEN membership includes:

Patients/ parents/ carers
Paediatric Neurologists
Epilepsy Nurse Specialists
Paediatricians
Voluntary Sector Organisations
Neurophysiologists
GPs
Dietitians
NHS Managers
Social Workers

The aims of SPEN are:

To promote the delivery of high quality care to children and adolescents with epilepsy in Scotland
To be patient centred and deliver seamless care between organisations and professional groups involved in epilepsy care
To contribute to the setting of standards for epilepsy care and to audit the care provided
Ensure equity of services for all children and young people with epilepsy wherever they live in Scotland

Scottish Paediatric Renal and Urology Network (SPRUN)

GGC Contacts: Heather Maxwell / Boma Lee

The Scottish Paediatric Renal and Urology Network (SPRUN) is a nationally designated managed clinical network, established in 2004. The network encompasses renal and urological disease in children and young people up to 16 years old, who may require specialist intervention but who can also be managed locally. The Network facilitates 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 Scottish Paediatric Renal and Urology Network website

Surgical Congenital Anomalies Networks Scotland (SCANS)

GGC Contact: James Andrews

The Surgical Congenital Anomalies Network Scotland (SCANS) was set up to provide families and professionals with information regarding the following conditions:

Diaphragmatic Hernia
Duodenal Atresia
Exomphalos
Gastroschisis
Oesophageal Atresia

On their website you will find:

Information leaflets
Guidelines/Pathways
Treatment Updates
Information on upcoming events
Recent News

West of Scotland Paediatric Critical Care Network

West of Scotland Paediatric Critical Care guidelines

The Managed Clinical Network is tasked with the delivery of the following:

Support delivery of the overall aims of the Quality Standards for the Care of Critically Ill Children (2015) and relevant key performance indicators, including:

Facilitation of an agreed, standardised provision of Paediatric Critical Care within each of the West of Scotland Boards
Local agreement with each Board for patient criteria for transfer to and repatriation from the Paediatric Intensive Care Unit (PICU)
Agreed processes developed and ratified to ensure liaison for timely clinical advice, transfer and repatriation processes
Developing regional guidelines and pathways which support and standardise the agreed model of care delivery
Standardised audit and reporting processes to demonstrate the delivery of a high quality, safe and effective critical care element of paediatric care within local Boards in the West of Scotland (WoS) region
Ensuring appropriate medical and nursing staffing to support the local model of care, including competence and skills

This group reports progress to the West of Scotland Child Health Regional Planning Group.