Category Archives: Volunteering

Last chance to have your say in our #NeedsAssessment


We are closing the needs assessment survey on Thursday morning (1st December).  We’ve had a really good response so far but the more people who take part the more useful our results will be.  We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.

There are some parts of Scotland that are a little under-represented at the moment.  We are keen that the results reflect everyone in Scotland.  So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.

If you do take part then you might also win one of three FitBits that we are giving away.  They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!

Click here to take the survey

World Haemophilia Day 2016 #WHD2016 marked by launch of Malawi Diagnosis project and awareness raising at science festivals



Yesterday (17 April) was World Haemophilia Day.  Our sister organisations all over the world were marking the day with an amazing range of activities.

Here at Haemophilia Scotland, we like to use World Haemophilia Day to raise the profile of bleeding disorders in Scotland and of the work we are doing to improve treatment and care in the rest of the world.

This year we are launching our Diagnose Malawi Appeal and are raising awareness at science festivals.

Diagnose Malawi Appeal

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We are working in partnership with the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to improve diagnosis, treatment, and care in their country.

All over the world 1 in 10,000 babies is born with Haemophilia A.  However, despite having a population of well over 16 million there was nobody in Malawi with a laboratory diagnosed bleeding disorder when the project started.

We have received funding from the Scottish Government to run the Malawi Diagnosis Project with SHAD.  There will be a public awareness campaign in Malawi, and training for hospital staff, to try and find suspected cases of bleeding disorders.  New clinics will then offer testing, and where appropriate, treatment.

As part of our funding application we pledged to raise some of the money we need through community fundraising.  Money spent on this project goes a long way.  For example, running a single test will cost £15.  By the end of the project we hope that between 216 and 360 people will have been tested. Our first fundraising target of £1,500 is the equivalent of paying for the first 100 test. However, your money will be used to support the whole project.

The easiest way to donate to the appeal is on Just Giving. Alternatively, you can donate fifteen pounds by texting ‘MALA31 £15’ to 70070.  If you’d like to give a different amount just change the amount in your text. We will be posting more about the project during our ‘Malawi May’ when there will also be a cultural event to find out more about the county we are working with.

Following the success of Walk RED Malawi last year there will be another event this year.  Details are being finalised. Please put the 17th of July in your diary. If you are interested in finding out more please email Emma Black to be put on the Walk RED Malawi mailing list.

Science Festivals

To raise awareness of bleeding disorders in Scotland we have been taking part science festivals.  We worked with Blackwell’s Bookstore to run a very successful crime scene investigation event as part of the Edinburgh International Science Festival.  All day, amateur sleuths were cracking clues to solve a murder, while improving their knowledge of bleeding disorders.

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Parent Mentoring become Parent Links


Some of the parents of children with a bleeding disorder already linked with other families in Scotland

Following our successful Parent Mentoring Pilot Project the project has continued to develop.  Thanks for funding from the Health and Social Care Alliance, IMPACT Fund, we’ve been able to increase the number of Children and Family Days we have held.

These days give families the chance to come together a meet each other.  Previously, this has led to us pairing parents up as mentors and mentees.  However, we have discovered that mentors are benefiting just as much from the experience of their mentees as the other way round.

This weekend the families involved in the project decided to stop talking about mentoring. They wanted a term which better reflected that it was a mutually supportive, two way, relationship, where everyone’s experience is of equal value.

Therefore, from now on we will be making links between families rather than mentoring relationships.  The group hoped this would also be more welcoming to a wider number of families.  Training will still be provided to everyone involved in the project to make sure those links are well supported.

So if you are the parent of a child with a bleeding disorder and would like to be linked with another family please get in touch.



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 or by calling him on 0131 524 7286.  He can answer any questions you might have and pass your details onto the Network team.



Support Haemophilia Scotland with your Christmas Cards

Xmas 2015 A

Place your order today!

Our good friend, the Edinburgh Sketcher, has kindly agreed to support us with sales of his wonderful Christmas Card range this year.

He will donate a fantastic 50% of his sales if people put “Haemophilia Scotland” in the comments box when ordering.  It is very simple to order them on Etsy.

This is a great way to send some high quality cards this year while supporting the work of Haemophilia Scotland.

Find more fantastic sketches on the Edinburgh Sketcher’s website.


Jack makes as splash at the Swimming Extravaganza


Rory gave Jack a run for his money when they had a race.

On Saturday families from all over Scotland came to the Haemophilia Scotland Swimming Extravaganza.  We were pleased to have so many families involved in our Mentoring Project together again.

There were videos to watch, faces painted, and swimming bags to decorate too.  Our guest of honour for the day was Jack Bridge. Jack is 21 and doesn’t let having severe haemophilia A hold him back.  He is the the holder of 8x British swimming records and competed at the London 2012 Paralympic Games.

Each family got some one to one time with Jack in the pool to talk about everything from swimming and training techniques to the importance of sticking to your treatment regime.

We were very pleased that Jenna Reid from the Edinburgh Haemophilia Centre joined us for the day too.  She showed the Haemophilia Get Fit & Active video and was on hand to answer any questions.

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Get involved in #SelfManagement Week this year!

Self Management Week 2015

All this week (28th Sept to 2nd October) it is self management week.

All over Scotland people are celebrating being able to self manage their condition.  This is particularly important for long-term conditions such as bleeding disorders.  Over the years people become experts by experience in the conditions they live with and, in particular, how it it effects them personally.

The self management approach as been a feature of the treatment of haemophilia and other bleeding disorders in Scotland for a long time.  There are around 200 people who have their treatment delivered to them at home and even more who have been trained by our fantastic Scottish Haemophilia Centres to treat themselves.  This has helped many people take more control over their lives.

Self Management means more than practical treatment. It is a philosophy where individuals or families with a condition have the information they need to make informed decisions and be an active member of their own multi-disciplinary team.

At Haemophilia Scotland we believe we have a vital roll to play in helping people find the appropriate level of self management for them.  Through our information, support, and mentoring services we are helping more and more people to engage positively with the management of their condition.

One of the ways you can take part in Self Management Week 2015 is to print of the Self Management Inspiration Poster and post a picture of yourself on Twitter or Facebook to tell everyone what inspires you to self manage your bleeding disorders.  Don’t forget to use #SelfManagement and it would be great if you could include @HaemophiliaScot too so we see all of your messages.

You can find out more on The Health and Social Care Alliance website.

Why not spread the work with your own self management inspiration photo?

Why not spread the work with your own self management inspiration photo?

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