Join the Scottish Inherited Bleeding Disorder Network

Scottish Inherited Bleeding Disorder Network

This week the Scottish National Managed Clinical Network for Inherited Blood Disorder (the Network) met for the first time following its launch in November.

The structure for the Network which was agreed means that there will always be a minimum of two patient/carer representatives on the Steering Group.  There will also be three Working Groups which any interested people can join; so patient, parents, and partners are all welcome.  The Working Groups will be made up of patients and healthcare professional and will work as much as possible outside meetings.  It is hoped that will make it as easy as possible for those who are working or have reduced mobility to take part.  So if you are interested in any of the working groups please sign up today.

The three working groups are,

Communication and Stakeholder Engagement

This group will work on,

  • Patient needs assessment
  • Website and Social Media
  • Production of information materials
  • Education activities
  • Consultation on all aspect of the work of the Network.

Best Practice, Policies, and Protocols

This group will work on,

  • Updating policies and protocols
  • Developing new policies and protocols (for example on moving from paediatric to adult care and/or the use of the new longer acting products)
  • Spreading best practice

Quality Improvement, Audit and Data

This group will work on,

  • Measuring health outcomes
  • Auditing the Haemophilia Centres
  • Service mapping
  • Psychosocial service development

If you are interested in joining any of these working groups please contact Dan Farthing-Sykes on dan@haemophilia.scot or by calling him on 0131 524 7286.  He can answer any questions you might have and pass your details onto the Network team.

 

 

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