Category Archives: Diagnosis

Read the Scottish Needs Assessment Report

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In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network.  We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.

There report highlighted that there is unmet demand for physiotherapy and psychosocial services.  The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,

  • Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
  • Over half of people have additional social, emotional, or practical support needs.
  • People are experiencing stigma and discrimination at work.
  • While it is understood that activity is important, activity levels are low.
  • People wanted more local and specific support services.

The top three priorities for the future were,

  1. Reducing the number of bleeds
  2. Finding a cure
  3. Reducing the frequency of infusions

Read the Report

You can download a copy here or by signing up for a free account on Issuu.

We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.

Photos from the Scottish Parliament Reception

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Photos courtesy of Elspeth Parsons of The Lines Between.

We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.

Last chance to have your say in our #NeedsAssessment

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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

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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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Countdown to World Haemophilia Day 2016 continues #WHD2016

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To mark World Haemophilia Day (17 April) this year, the World Federation of Hemophilia (WFH) are launching a series of videos about their humanitarian work around the world.

In this first, introductory video, they stress that there is more to their work than trying to take the clotting factor treatments that are available in the most developed parts of the world and making it available more widely.  Treatment must be supported by strong patient groups, properly staffed Haemophilia Centres, diagnostics facilities, and commitment from Governments.

This is the approach that Haemophilia Scotland is taking with our own Malawi Diagnosis Project in partnership with our friends in Malawi, the Society for Haemophilia and Allied Disorders. We are working together to provide people in Malawi with laboratory diagnosis and access to specialist Haemophilia clinics.  Well be posting more information about this project over the coming days and weeks.