Category Archives: News

EHC Annual Survey: Women and Bleeding Disorders

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The EHC has launched a survey on women and bleeding disorders! Objective: to provide an overview of the female patient population in Europe.

If you are a girl/woman with a bleeding disorder or the caregiver of one, you are invited to take part in the survey and help EHC identify what are the most frequently faced challenges. The results will be used to determine a course of action that the EHC can take to address these issues and to increase awareness about this patient group.

Click here if you wish to take part in the survey. The deadline is November 5th.

A downloadable copy of the survey can be accessed here where you can print it off, fill it out and return it for the attention of Nancy Brodie at the West of Scotland Haemophilia CCC at the Glasgow Royal Infirmary.

FAO Nancy Brodie
Haemophilia & Thrombosis Centre
Ground Floor, Medical Block
Glasgow Royal Infirmary
Castle Street
Glasgow
G4 0SF

 

International Day of the Girl Child

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Today is International Day of the Girl Child and this year’s theme is: EmPOWER Girls: Before, during and after crises.

“Every 10 minutes, somewhere in the world, an adolescent girl dies as a result of violence. In humanitarian emergencies, gender-based violence often increases, subjecting girls to sexual and physical violence, child marriage, exploitation and trafficking. Adolescent girls in conflict zones are 90 per cent more likely to be out of school when compared to girls in conflict-free countries, compromising their future prospects for work and financial independence as adults.” 1

These horrifying statistics paint a bleak picture for women and girls around the world. There are international efforts to fight for the rights of women and girls and improve their situation. Here at Haemophilia Scotland, we have a women’s group that meets regularly. It is an empowering forum for women to get together and discuss the issues affecting them and offers a space for women to support each other.

The Women’s Group recently launched a Quilt Project, which is a collaborative, worldwide effort where women with a bleeding disorder, or people who know women with a bleeding disorder, are invited to sew a panel which represents how bleeding disorders have affected their lives. Collectively, these panels will make up a special and uniquely-designed quilt that will be something tangible that represents how the Women with Bleeding Disorders community feels. You can register to take part in the quilt project here.

We will continue to make every effort to support and empower the women in our community.

  1. http://www.unwomen.org/en/news/in-focus/girl-child 

Today is World Mental Health Day

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Selfie with Glenda

Today is World Mental Health Day and this year’s theme is workplace wellbeing.

Mental health problems can affect anyone, at any time of the year. Rich, poor; young, old; black, white; short, tall, it does not discriminate, even within our bleeding disorders community. We recognise our community has been affected enormously from the contaminated blood product infections and there have been ongoing consequences on our physical and mental health.

Having a bleeding disorder yourself, or in your family, can have an impact on your mental health. We are working to strengthen the bleeding disorders community in Scotland so people have the opportunity to meet more people who understand what they are going through.  Regularly touching base with friends or family to let them know how you are feeling can make a big difference.

We organise a busy events schedule for our community to bring everyone together. These events provide an opportunity to support your peers and they act as a forum to celebrate and discuss the things that are going well for us and to process and work through the not-so-great things. These events are important because we are a close-knit community that supports each other.

In the workplace, there can be fears around discrimination, anxiety about not being able to fulfil the duties of the role, or even concerns of how your colleagues may perceive you. These anxieties can be stressful and that’s why it is important to take time out of your day for a mental health break. We are working on a resource for you to assist you with knowing your rights in the workplace.

In our office today, we are taking a mental health break and are enjoying some delicious cake and tea. Why not take time out of your day for a mental health break, too? Go on, grab yourself a bit of cake!

A psychological support service pilot in Edinburgh is being rolled out to see how a national service could be provided.  This means that everyone can access the service.  We’ve had excellent feedback from people of all ages who have worked with Grainne and Nadine.  Talk to your Haemophilia Centre if you’d like to know more or be referred for a session. 

Joint Campaigns Meeting with Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF)

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On October 14, between 11am-1pm, Haemophilia Scotland and the Scottish Infected Blood Forum are jointly hosting a campaign meeting in Glasgow for anyone interested in the contaminated blood and blood products disaster in Scotland.

This will be a chance for people to come together in Scotland and discuss issues ranging from their experience of the new Scottish Infected Blood Support Scheme and how it can be improved.

The venue, Mercure Glasgow City Hotel, is located near George Square in the city centre and is accessible by train, bus or car. For more details see:https://www.mercureglasgow.co.uk/

Register now to secure your space.

Launch of the Women with Bleeding Disorders Quilt Project

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Thank you to all who turned out for the launch of the “Women with Bleeding Disorders Quilt Project” on September 24th.

We started the day off by perusing the intricately designed quilts that were exhibited at the Scottish Quilt Championships. What a tough competition it was! We were wowed by the vast array of designs and in awe over the level of creativity and detail that was put into each of them.

Hot off the heels of the Scottish Quilt Championships and full of inspiration and ideas, we made our way to Norton House Hotel for a lovely afternoon tea and a productive discussion to officially launch the start of the Quilt Project.

>> Click here to take part in the project.

The project is open to first-time sewers all the way through to quilt extraordinaires. Participation is open for anyone in Scotland and in our international community who either has a bleeding disorder or knows women with a bleeding disorder. It is a vibrant, interactive project that will represent how the community feels, and how the bleeding disorder has affected our lives, family and community.

  • We will need you to contribute either a panel and/or fabric of the same size. The quilt will be made out of 12 inch/30cm panels (with 1 inch/3cm border) created by you and our friends from around the world. Get creative with the panel – we want it to reflect you and your experience. Please do not quilt it as it will get quilted once all the panels are pieced together. The deadline for completion of your panel is January 31, 2018.
  • We would like you to write a little about yourself or your group, what country you’re from and the ideas behind your square. Feel free to submit a photo, too!
  • The centrepiece of the quilt will be made in Scotland. It will be a tree, symbolising family, life, lifeblood and community. The branches would be like veins, and the fabric used will be from all around the world, symbolising the connectedness of the community and family.

On November 11 between 11am-2pm, we are hosting a practical sewing session to work on our panels together at our Edinburgh office. Register here for the session: https://edinburgh-session-quilt-project.eventbrite.co.uk

There will be various sessions on Wednesdays at the Glasgow Haemophilia Centre. Dates and times to be confirmed.

We’d love for you to take part in this fun, hands-on project! This is a collaborative, worldwide project which will culminate in something tangible that represents the Women With Bleeding Disorders community.

To register to take part, visit https://haemophilia.scot/support/register-quilt-project/

The deadline for completion of your panel is January 31, 2018.

 

Joint statement ahead of meeting with Bishop James Jones

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Today, representatives of both Haemophilia Scotland and the Scottish Infected Blood Forum will be in London to attend a meeting between people affected by contaminated blood and blood products and the former Bishop of Liverpool, James Jones.  We will be expressing the views of our members from our recent joint campaign meeting and have jointly issued the short statement below.

In our united view, the UK Public Inquiry should be a statutory Inquiry under the 2005 Inquiries Act. It should be conducted by a panel rather than a Chair and they should be appointed as soon as possible with appropriate input from affected people. The wrong Chair and Panel is worse than no Chair and Panel. There must be Scottish Core Participants and Scottish legal representation.

We want people to make their own decision about whether or not to attend the meeting with the Bishop. The Scottish charities are attending because we want to take opportunities to engage and put forward the Scottish perspective. Therefore, we are not boycott the meeting or planning to walk out of it. We take the Bishop at his word and believe him when he is says that he is making a genuine attempt to help.

Haemophilia Scotland and the Scottish Infected Blood Forum are both currently working with Thompsons Solicitors.

We continue to call for the Department of Health to step aside in favour of another Department taking the lead establishing a UK Inquiry.

Joint Contaminated Blood and Blood Products Campaign Meeting Report

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On Saturday the 26th August, Haemophilia Scotland and the Scottish Infected Blood Forum held a joint meeting to discuss a collective response to the announcement that there will be a UK Public Inquiry into the contaminated blood and blood products disaster.

The meeting was well attended by affected people, including independent campaigners, from across Scotland. Members of the legal team who represented the patient interest during the Penrose Inquiry also took part.

The clear view of the meeting was that,

  1. The UK Public Inquiry should be a Statutory Inquiry but framed to be as flexible and responsive to affected peoples’ concerns as possible. In particular,
    1. The Inquiry should be under a panel rather than a lone Chair.
    2. The investigation should be segmented rather than linear. There should be milestones so that as each aspect is dealt with a preliminary recommendation can be made so that the appropriate bodies can respond immediately. Panel members could be selected with a view to them leading particular aspects of the investigation. This could stop the Inquiry taking longer than necessary.
    3. Many more affected people should be able to give oral evidence than were permitted to during the Penrose Inquiry.
    4. Patients and patient representative need to be fully involved at all stages from establishing the Inquiry, through how it is conducted and reports, to the implementation of its recommendations.
    5. Be accessible to people all over the UK including holding public hearings in all four nations and streaming the proceedings online.
  2. There are particular Scottish elements to the disaster which must be represented in the UK Inquiry. Scotland has had its own NHS, blood transfusion service, and legal system throughout the disasters. Specifically, there must be Scottish Core Participants and separate legal representation.
  3. All Scottish campaign organisations and individuals should work together as much as possible to maintain a clear Scottish position in relation to the Inquiry and the disaster. We should engage with the process of establishing the Inquiry as early as possible to be able to influence the terms of reference.
  4. There are important lessons to learn from the Scottish experience of the Penrose Inquiry including,
    1. that the Terms of Reference need to be very specific and clearly direct the Inquiry Chair and Panel to examine the key areas of concern for the community, and make recommendations. Terms of reference which require general investigation are vulnerable to be interpreted so as not to require the specifics to be examined.
    2. The Chair and Panel should be young enough, and foreseeably well enough, to complete the work while in good health.
    3. Once the Chair and Panel are appointed they will have a lot of power. It is important not to rush to appoint an inappropriate Chair or Panel Member but to appoint people who are acceptable to those affected.
  5. The Inquiry should be focused on bringing out the whole truth and the terms of reference should include,
    1. Who is accountable?
      • Were there actions which could lead to criminal/civil prosecutions or further disciplinary action?
      • The Inquiry must be able to investigate the actions of Ministers. Was action delayed and if so why?
      • Investigate whether systems and procedures were appropriate and not just whether they were followed.
    2. All viruses and prions including Hepatitis B, Hepatitis C, HIV, and CJD.
    3. Have all appropriate lessons been learnt and if so what specifically has changed? Should include a full risk assessment.
    4. The development and use of pooled plasma derived clotting factor products.
    5. Protecting the safety of the blood supply, including surrogate testing and donor exclusion.
    6. Consent for research, testing, and using stored samples.
    7. Communication of risk and infected status. Were patients fully informed and included in decision making.
    8. Whether evidence was removed by the destruction or alteration of medical records or other relevant files.
    9. The impact of the disaster.
      • Financial losses and on-going financial support needs, including insurance costs.
      • Health of those infected (from fatigue and brain fog to death), their families, and their sexual partners.
      • On-going no financial support needs of all those affected.
  6. It is vital not to lose focus on working to improve the Scottish Infected Blood Support Scheme (SIBSS).

Several people who spoke at the meeting made it clear that if there was an unsuitable Chair, Panel, or Terms of Reference then they wouldn’t be prepared to engage with the process.

Haemophilia Scotland and the Scottish Infected Blood Forum will be working together with members and independent campaigners to develop the views of the meeting into a comprehensive Scottish position.

BREAKING NEWS

A venue has been set for the meeting between Bishop James Jones and affected people on the 12th September (11:30 for a 12:20 start). It will be at BMA House, Tavistock Square, London, WC1H 9JP.

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