Guest blog: Darren Ford on his fundraiser skydive for Haemophilia Scotland

Darren Ford is the Facilities Co-ordinator at our Edinburgh office and raised just over £500 for a fundraiser skydive for Haemophilia Scotland. Contact Glenda at the office if you wish to do your own fundraiser on behalf of Haemophilia Scotland.

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Darren Ford , feeling relieved, with his tandem instructor following his brave leap from the plane.

After speaking with some of the lovely hard working staff at Haemophilia Scotland, I signed myself up for Skydive to raise some funds to support the great work they do. Now I should probably mention at this point I have a fear of heights so perhaps not the smartest move I’ve made.

The whole process was really easy, made more so because Haemophilia Scotland team were so helpful, along with the staff running St Andrews Skydive. It was intended to be a Santa Skydive but due to bad weather along with my luck we had to reschedule a few times.

We managed to finally get the jump completed on the 27th August 2017. I can honestly say it’s one of the best experiences I’ve ever had, and its all for a good cause! It’s no where near as bad as I thought it would be and it was highly exhilarating. I managed to raise over £500, and I would like to take this opportunity to thank everyone that donated. I hope you enjoy the video!

Inspiration aplenty at Glasgow Practical Sewing Session

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We had a fantastic time yesterday at the practical sewing session in Glasgow where a flurry of ideas and inspiration floated about in abundance.

For inspiration, we used the eclectic fabrics from the D’Ambrosio family, quilting magazines and the corners of our collective imaginations!

You don’t need to be an expert at quilting to participate in this collaborative project. It can really be as simple as finding a printed panel and personalising it yourself.

We’ve extended the deadline to take part in the Quilt Project to November 17, so it’s not too late to get involved!

The next practical sewing session will be held on level 3 at our office in Edinburgh on November 11, between 11:00am-2:00pm. Register for the session now. 

Don’t worry if you can’t make the session as we will organise another session for Glasgow and Edinburgh in January, before the January 31 deadline.

 

UK Inquiry: The Scottish position and how to register for more information

Cabinet Table

Apologies for the longer than usual post but a lot has been going on in the run up to last week’s statement from the Prime Minister that the UK Contaminated Blood Inquiry was to be a Statutory Inquiry overseen by the Cabinet Office. 

Firstly, thank you to the many members of Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF) who have come to recent campaign meetings and spoken to us about what they’d like to see from the UK Public Inquiry.

Using your comment, and our experience of the Penrose Inquiry, we have developed a joint position statement  which we believe reflects the views of the majority of affected people in Scotland.  We sent a copy to the UK Government on 11th October.

The Executive Summary summarises our position,

We support the establishment of an UK Public Inquiry and are proposing it has the following features,

1. The Inquiry be consulted on and established by the Cabinet Office or Ministry of Justice.

2. A statutory Inquiry under the 2005 Inquiries Act.

3. The Inquiry to be led by a Chair and Panel, rather than a Chair alone.

4. That there are Scottish Core Participants with Scottish legal representation.

5. The procedures of the Inquiry to be flexible and responsive to the needs of those infected including,
a) Those that wish to are able to give oral evidence.
b) Hearings are held in locations throughout the UK at accessible venues.
c) Proceedings are streamed live online.
d) The questions that affected people want to be asked can be put.
e) The privacy of those affected is protected.
f) Different topics should be investigated simultaneously, potentially under different members of the Panel, to allow the Inquiry to proceed quickly and make interim recommendations.

6. Terms of Reference that include,
i) All infections and pathogens.
ii) All use of plasma derived clotting factor products.
iii) Accountability and responsibility.
iv) Consent, communications, and risks.
v) Blood donor selection.
vi) Blood product selection.
vii) Impact on those affected.
viii) Access to justice.

We also provided a copy to the Scottish Government so that they had a clear understanding of the views of people in Scotland when they we discussing the Inquiry with the UK Government.

shona-robisonShona Robison MSP, Cabinet Secretary for Health and Sport then met with Haemophilia Scotland and the SIBF.  She told us there had been a ministerial level conference call with Jackie Doyle-Price MP, which had discussed these issues.  We also talked about next steps including a proposed letter from the Cabinet Secretary to the Prime Minister.

Her letter to the Prime Minister, sent shortly after the meeting, raised the following points. It,

  1. Supported a Statutory Inquiry.
  2. Supported having a Panel rather than having a single Chair.
  3. Called for the Panel to have a say on the Terms of Reference having listened to those affected. She also asked for clarity over the process for setting the Terms of Reference and stressed the importance of building on the work of the Penrose Inquiry rather than duplicating it.
  4. Called for the Scottish Government, Haemophilia Scotland, and the Scottish Infected Blood Forum should be Core Participants of the Inquiry with legal representation.
  5. Urged that the Inquiry should be established as quickly as possible.

There has also been progress on legal issues.  At the recent joint Haemophilia Scotland / Scottish Infected Blood Forum members’ meeting we were pleased to announced an even closer working relationship with our legal team of Thompsons Solicitors, Simon Di Rollo QC, and Jamie Dawson.

PMcGuire-square-smallThompsons Solicitors have launched a new website so that affected people in Scotland can sign up for regular updates on the contaminated blood and blood products campaigning work of Haemophilia Scotland, SIBF, and Thompsons Solicitors.

You can register online at contaminatedbloodregister.co.uk or over the phone by calling 0800 081 0072.

At the meeting there was also an extremely useful discussion about the experience of people using the new Scottish Infected Blood Support Scheme.  We will be working on these issues together and using them to prepare for the first periodic review of the scheme.

David GoldbergWe are also preparing for the start of the Clinical Review to be chaired by Prof. David Goldberg.  The group has been established by the Scottish Government as part of the implementation of the Financial Review Group recommendations.  The review will look at how to change the criteria from moving from the chronic to advanced levels of financial support from liver damage to whole health impact, how to assess whether a death is related to the virus for assessing entitlement to widow’s pension payments; and looking at the wider impact of chronic hepatitis C infection.

The review is being conducted in four streams,

  1. Describing characteristics of those at the chronic hepatitis C infection stage (previous stage 1).
  2. Examining latest scientific literature, in particular on chronic hepatitis C.
  3. Direct evidence from a random sample of Scottish people with chronic hepatitis C and widow(ers).
  4. Evidence on impact on health and wellbeing of those with chronic hepatitis C from a clinical and medical perspective.

The first meeting of the clinical review is scheduled for the end of November this year.

Response to Prime Ministerial statement on Contaminated Blood and Blood Products Inquiry

Theresa May

Today there have been media reports that the Prime Minister has announced more details about the UK Public Inquiry into contaminated blood and blood products.

A spokesperson for the Prime Minister has confirmed that it is the intention of the Government for the Cabinet Office to establish a Statutory Inquiry.

Haemophilia Scotland CEO, Dan Farthing-Sykes responded to today’s statement saying,

In Scotland we have been calling for a statutory Inquiry under a panel rather than a lone Chair.  We also called for a department other than the Department of Health to establish the Inquiry and that the Inquiry provides for Scottish Core Participants with Scottish legal representation.

As a result, today’s statement from the Prime Minister is a welcome step in the right direction.  We are pleased that she has listened to the concerns of affected individuals and families and will hold a Statutory Inquiry established by the Cabinet Office.

However, perhaps the most important decisions still have to be taken.  We must have the right people appointed to the Inquiry panel and Terms of Reference which have the confidence of our community.  That can only be achieved by working with those affected.

The Terms of Reference must include both the events running up to the infections and the response to them.  The time frame must be long enough to cover all the infections associated with pooled plasma products including hepatitis B and CJD.  The unfinished business from the Penrose Inquiry must be completed.  The Penrose Report established important facts about the infections in Scotland but failed to follow them up with appropriate analysis or recommendations for the future. 

It will be extremely painful for those infected and their families to go through an Inquiry.  For many it will involve reliving the most painful memories.  It’s vital that they have appropriate support through the process and that their renewed suffering leads to concrete action.

It is hoped that a fuller statement will be laid in the House of Commons soon.

Huge thanks to the D’Ambrosio family

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The first bits of fabric have arrived at our office for the Quilt Project, thanks to the generous contribution of the D’Ambrosio family. There are all sorts of fun designs enclosed which will add to the beauty of the final quilt. Thank you, D’Ambrosio family!

It’s not too late to register to participate in the Quilt Project. Register here. We’ve extended the registration date to November 17 to allow for more people to participate in this collaborative project.

If you would like to work on your panels for the project together, then why not join us in Edinburgh or Glasgow for a practical sewing session where you can inspire each other for the design of your panel, and learn some handy sewing tips and tricks!

We look forward to seeing your contributions and seeing the quilt come together in time for Congress!

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 
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