Let’s remember the impact HIV has had on our community on #WorldAIDSDay

Today is World AIDS Day.  Since the Penrose Report was published we know that at least 59 people were infected with HIV in Scotland by being treated with contaminated plasma derived clotting products for their bleeding disorder.

aids-virus-kills-man-in-britainThey were some of the first people in Scotland to be infected and endured the early experimental treatments and suffered the extreme levels of stigma that came with the public panic about the virus. Everyone who lived through that period remembers the media stories and the impact it had on the way everyone with a bleeding disorder was treated.  Tackling the stigma associated to HIV is a central plank of this year’s World AIDS Day campaign under the slogan “It’s not just retro it’s wrong.”

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Of the 59 people infected there are just 20 long term survivors left.  The pain of those families who lost a loved one hasn’t gone away.  The long running campaign for answers about how this could be allowed to happen, to make sure all relevant lessons are learnt, and for their to be proper financial support, has taken its toll on many affected families.  Everyone who was treated for a bleeding disorder in the 1970s and early 1980s was exposed to Hepatitis C, including everyone who was infected with HIV.  That meant the disaster caused 478 Hepatitis C infections in people with bleeding disorders.

We also remember that it wasn’t just people with bleeding disorders who were infected.  There were an unknown number of people who were infected with HIV through a blood transfusion and up to 2,500 may have been exposed to Hepatitis C as a result of the contaminated blood disaster in Scotland.

How you can help

You can help by increasing your own knowledge about the contaminated blood disaster and making sure other people hear about it too.  There are summaries on the Haemophilia Scotland website and the Penrose Report can be downloaded online.  However, a great way of understanding the impact of the disaster is to watch the powerful Dogstar play, Factor 9.  You’ll need the password “Inverness” to view it.

Factor 9 on Vimeo

The password is “Inverness”

Secondly, some of the bereaved families are working together to construct a lasting memorial to the victims of the contaminated blood disaster in Scotland.  Their fundraising is going extremely well but continued efforts are needed if their loved ones are to get the fitting memorial they deserve.  Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate a tenner your text should read “CBME23 £10”.

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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

Try something new at Crieff Hydro!

Thanks to everyone who came to our day out at Crieff Hydro. It was a wonderful, action packed day! We started by launching The Miles for Haemophilia campaign in Scotland with an inspirational talk by Alex Dowsett. Alex told us of his journey to being a record breaking cyclist, how haemophilia led him to cycling and how he manages his condition. It was great to hear his talk but also to get to chat to him in person too.

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During his talk, Alex stressed how important keeping active safely is for all our community and spoke of the value of bringing us together to support and encourage each other.

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After lunch, we had an adventure at the brilliant Action Glen. We tried out a range of activities which kept us moving on a cold but beautiful day. Amazing views could be seen by everyone who braved the zipwire.

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The climbing wall looked  testing but we met challenge!

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We also had time for, possibly, the friendliest game of lasertag ever.

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Although we did get competitive too…

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There was also the chance to learn bushcraft survival skills, including fire lighting.

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(which was greatly helped along by toasted marshmallows and biscuits!).

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Thank you all for an amazing day, special thanks to Elspeth for taking our photos, but most of all to Pfizer for the funding this event and for bringing Alex to us!

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Alex Dowsett to launch #MilesForHaemophilia in Scotland on Sunday

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We are delighted that Alex Dowsett will be our lunchtime speaker at this weekend’s “Try Something New” event at Crieff Hydro.  If you have already registered you can see the final schedule for the day here.

Alex is an inspiration to people with Haemophilia all over the world.  Despite his condition he has been able to climb to the top of the world of cycling claiming many championship titles and holding a string of records.

He will  be speaking about his experience of living with Haemophilia and how he has gone on to achieve to much.  His visit makes the launch of this year’s Miles for Haemophilia campaign.  The campaign asks people to challenge themselves while raising awareness, and sometimes money, for haemophilia.

There are lots of ways of getting involved in the Miles for Haemophilia campaign.mfh-poster

You can find our more about Alex Dowsett and his work to inspire younger people with bleeding disorders the website of the Little Bleeders charity which he founded. You can also follow him on Twitter.

Yesterday the cycling press was reporting that Alex is considering an attempt to regain his #PerfectHour world record.  See our video of the last time he set the record.

The Try Something New Event and Miles for Haemophilia are both supported by @Pfizer.

 

 

 

Come and find out about the new Scottish #contaminatedblood financial support scheme

18 March 2016 the Scottish Government announced changes to the level of support that it would be providing to those whose infection occurred in Scotland.  Part of the package of changes was the establishment of a new scheme based in Scotland to administer the payment.

nhs-national-services-scotlandThis new scheme will be administered by National Service Scotland (NSS).  It is intended that this new scheme will start at the beginning of the 2017/18 financial year in April.

To give beneficiaries the chance to meet key National Services Scotland (NSS) staff and ask questions about the transition to the new Scottish support scheme, NSS have scheduled a stakeholder event for,

19 December at 2pm – 4pm,
Scottish Health Service Centre
Edinburgh, Crewe Road South
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Anyone interested can book a place at the link below.  The event will also include some background on the key aims and membership of the scheme’s Advisory Board.

https://book.shsc.scot/SG16

The room can only hold around 30 people so we may have to restrict attendance if there is a lot of interest.  There is no announcement being made, this is just a chance to talk about the new NSS role.

Anyone who will benefit from the new scheme can attend.  This means the event is open to those who were infected and their immediate families, including bereaved families.

The event organiser is Victoria Delargy, tel. 0131 275 7925, if anyone wants to book via phone.

You may have already seen the update posted on the Skipton Fund website regarding the interim payments:  http://www.skiptonfund.org/

It makes it clear that until the end of the financial year the Alliance House organisations will be responsible for,

  • Making the additional lump sum payments to those at Skipton Stage 1
  • Making the increased annual payment to those with HIV and at Skipton Stage 2

The Skipton Fund and MFET will write to everyone affected by the changes individually, giving further information about payments and timescales, and any further information required.  They have asked that if you have any questions regarding the new payments that you wait for your letter before contacting their office.

Because different levels of payments will be in place for the four UK countries, the country in which a person was infected is important information.  When they write to you about your new or enhanced payments, they will confirm the country to which you have been allocated, based on the data they hold.  Where there is reference to treatment in more than one country of the UK, they have been asked to assign the you to the country of residence at the time of your registration.

Once you have received your letter, if you believe you have not been allocated to the country in which your infection occurred, you can appeal the decision to the relevant government.  The following document provides further information on how to appeal: Appeals

 

New documentary tell #HaemophiliaStories from across Europe

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The European Haemophilia Consortium (EHC) has been working with acclaimed director Goran Kapetanovic.  He has created a powerful documentary which reveals the variety of experiences people have of living with bleeding disorders across the continent.

His 53 minute documentary, “What is it like to live in Europe with haemophilia?” is available to all for free online on the Haemophilia Stories website.

We hope that everyone who cares about haemophilia and related bleeding disorders will enjoy the film and share it as widely as possible.

For the high quality version of the documentary and to see individual stories please go to Haemophilia Stories website.

The Malawi project takes to the airwaves

Our project with the Society of Haemophilia and Allied Disorders (SHAD) in Malawi has just entered a new phase.

Our fantastic volunteers, Susan, Joan, and Lawrence, have already delivered 19 training sessions in hospitals across Malawi.  As a result an amazing 343 healthcare professionals in Malawi now know how to identify potential bleeding disorders cases and where to refer them.

diagnose-malawi-posterThere work is now being supported by a public awareness campaign.  A thousand posters will be displayed in hospitals or clinics and awareness is being raised with radio adverts which you can hear above.

As a result of this project people with bleeding disorders in Malawi are getting a laboratory diagnosis for the first time.

Thank you to everyone who has already supported the project.  If you would like to support this work please donate online or text “MALA31 £5” (or the amount you’d like to donate) to 70700.

We are grateful to the Scottish Government for their funding of this project.

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