Cross Party Group on Rare Diseases shows the way for bleeding disorders

Marina Di Marco telling the Cross Party Group on Rare Diseases about the Scottish Muscle Network.

Marina Di Marco telling the Cross Party Group on Rare Diseases about the Scottish Muscle Network.

We are a member of the Scottish Parliament Cross Party Group on Rare Diseases. It lets us work with other rare disease charities and interested MSPs to share learning and improve policy. Yesterday’s (17.06.14) meeting was particularly relevant for us as it was looking at Managed National Clinical Networks. We are working with the Scottish Haemophilia Centres and National Services Division (NSD) to apply to set up a Managed National Clinical Network for Bleeding Disorders.

It was interesting to find out what networks in other conditions have achieved. Some networks were working on quality of life and equality issues. Others work to make sure healthcare professionals who don’t work in the specialism know what to do and where to go for specialist support. Networks also improve protocols so that everyone gets the best possible care, wherever they live in Scotland.  We also heard how the work of the Scottish Paediatric and Adolescent Infection & Immunology Network (SPAIIN) has led to the recruitment of more Clinical Nurse Specialists.  Many of the achievements of the 25 National Managed Clinical Networks are very relevant to the treatment of people with bleeding disorders in Scotland and give us some good ideas for our own network if we are successful is setting one up.

Before the AGM where Bob Doris MSP and Malcolm Chisholm MSP were re-elected as Co-Chairs there was an extremely moving presentation from SWAN UK.  SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.  500 children a year are born in Scotland with a genetic condition with is likely to never be diagnosed.  We heard about the stress that not having a diagnosis causes, particularly raising questions about how long a child might live and what developmental milestones the will reach.  The project has just started work in Scotland and is already in touch with 45 families.  If you know of anyone under 25 with an undiagnosed condition then they would love to hear from you.

 

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