Category Archives: Advocacy

Proposal to relocate the Glasgow Adults Haemophilia Centre

Haemophilia Scotland has heard that NHS Greater Glasgow and Clyde (NHSGGC) are considering a proposal to relocate the Glasgow Haemophilia and Thrombosis Centre.

The Glasgow Centre is the largest of the two adult Comprehensive Care Centers in Scotland.  As a result, any changes to its facilities could impact a large proportion of patients in the west and across Scotland.


Jane Grant is the CEO of NHSGGC

Haemophilia Scotland has not been formally contacted about the proposed change.  The proposal was discovered by the West of Scotland Haemophilia Group who made us aware.  We have responded by writing to the CEO of NHSGGC, Jane Grant, to ask for the specifics of the proposal and to find out more about the process for consulting affected patients and groups.

Read Haemophilia Scotland’s letter in full

The subject will also be discussed at the upcoming West of Scotland Haemophilia Group meeting, organised by Philip Dolan.  The meeting is being held at the Glasgow Haemophilia Centre this Saturday (24th March) from 11am until 1pm.  Mr Dolan has given us permission to publish a copy of his letter of invitation.

We have written again to Jane Grant to clarify the action that the West of Scotland Haemophilia Group has already taken on this issue.

Joint Campaign Meeting in Edinburgh on April 21

Joint Campaign Meeting
WHERE: Apex Haymarket Hotel
WHEN: April 21, 11:00am-1:00pm

Haemophilia Scotland and the Scottish Infected Blood Forum are jointly hosting a campaign meeting for anyone interested in the contaminated blood and blood products disaster in Scotland.

We will be discussing the Langstaff Inquiry consultation on Terms of Reference.

It would be helpful if you considered the below questions before attending the meeting so we can have a discussion:

  • On what time period or periods should the Inquiry focus?
  • Do you agree with the provisional view of what should be covered? (Please provide any additional views on what you think the Inquiry should consider.)
  • Is there any type of evidence, such as documents, communications or expert reports that you think is essential for the Inquiry to obtain?
  • Should the Terms of Reference include consideration of the care provided, and the response of governments across the United Kingdom and overseas? If so, are there any particular areas the Inquiry should focus on?
  • Do you agree that the Inquiry should seek these individual responsibilities and make recommendations?
  • Is there anything else you would like to add?

The venue, Apex Haymarket Hotel is located near Haymarket Station and is accessible by train, bus or car. For more information on the venue, visit their website.


Sir Brian Langstaff introduces himself to those affected by contaminated blood and blood products

Sir Brian Langstaff, Chair of the Infected Blood Inquiry, is writing a letter to everyone affected by the contaminated blood and blood products disaster.  In Scotland, the letter is being sent out by the Scottish Infected Blood Support Scheme.


Haemophilia Scotland has agreed to help get the letter out to those affected who are not eligible for financial support but were still affected.  We know there are people who don’t have enough surviving medical records to get support from the current schemes; often referred to as the Stage Zeros.  We also think there will be bereaved families who aren’t registered.  We would be very grateful if everyone reading this post could pass on a copy of the letter to anyone they think might be otherwise be missed.

The covering letter from the Inquiry team says,

In February 2018 Sir Brian Langstaff, a highly experienced High Court judge, was appointed to Chair the Inquiry and a team is being established to support this important work. Sir Brian will be the full-time Chair of the Inquiry from 1 May following his retirement from the High Court. However, in order that people affected by this tragedy face no further undue delay, he will use the
intervening period to conduct a further consultation on the Inquiry’s terms of
reference. We are very grateful to people who have already provided contributions and would encourage others to do so.

Sir Brian has written an introductory letter to all victims of this tragedy. This
letter, a copy of which is attached, sets out his determination to put people at
the heart of the Inquiry and contains details of the consultation on the terms of
reference. Further details on the consultation can be found at Copies of the key consultation documents
are also attached for those who may have problems accessing the internet.

We have asked the scheme you are registered with to send this letter to you.
Your details have not been shared with us. If you would like to receive further
information on the Inquiry please do consult the website or feel free to contact
us at or on our freephone number 0808
169 1377.

Infected Blood Inquiry Team

Haemophilia Scotland, the SIBF, and independent campaigners in Scotland are working together to develop a response to the Inquiry’s Terms of Reference Consultation. This will be discussed at a members’ campaigns meeting at the Apex Haymarket in Edinburgh on the 21st of April.  A small group will then meet with Sir Brian Langstaff and his team to put forward our views.

Meanwhile, if you have any points that you’d like to be included in the Scottish response to the consultation please email and/or

Shona Robison MSP sees call for lump sum for Stage 1 Widows

In January, Haemophilia Scotland and the Scottish Infected Blood Forum wrote to Shona Robison MSP to call for the widows at Chronic / Stage 1 to be entitled to the same lump sum payment as those who survived.

When the Scottish Government increased the Stage 1 / Chronic survivors lump sum from £20,000 to £50,000 the lump sum for widows was left unchanged. This leaves the households who lost someone before the changes £30,000 worse off than those where the infected person lived longer.  In our letter we called for this issue to be address independently of the work of the Prof. Goldberg’s Clinical Review Group.

shona-robisonIn her reply Shona Robison MSP said,

Though I agree it is important that we consider this further, I do not see the additional lump sum for Stage 1 widows and widowers as a separate issue to the ongoing review.  In my view, this proposal should be considered in the light of the conclusions and recommendations of the forthcoming review.

It had already been agreed that the patient representatives on the Clinical Review Group will put forward companion recommendations covering how the report recommendations could be implemented financially.  Last Friday, Haemophilia Scotland and the Scottish Infected Blood Forum met and agreed that we will be including the lump sum for Stage 1 widows in that report.

Langstaff Inquiry launches website and consultation on Terms of Reference

The statutory Public Inquiry into infected blood and blood products, under Sir Brian Langstaff, has just launched it’s website at

The site gives some high level details about the Inquiry and a little more information about Sir Brian Langstaff.  However, the main content at the moment is a consultation on the Terms of Reference for the Inquiry.  The consultation was launched at the end of yesterday and runs until 26 April.

On the Inquiry website you will find,

Haemophilia Scotland will be working with independent campaigners in Scotland and the Scottish Infected Blood Forum (SIBF) to make a consultation response highlighting the Scottish dimensions to the consultation questions.  As well as using the Scottish Position Paper we published in October, we will be holding a joint members meeting so that everyone in Scotland can discuss the issues raised by the Inquiry consultation together.  We will publicise the details of that meeting as soon as it is confirmed.


Today is Rare Disease Day

The Haemophilia Scotland team showing their support for Rare Disease Day 2018

A rare disease is any condition which affects less than 0.1% of the population – that is 5 or fewer people in every 10,000 people.  All the bleeding disorders which affect our members are rare conditions.

There are thousands of recognized rare diseases, with more being identified every year. Research shows that 1 in 17 people will suffer from a rare disease at some point in their life.

Haemophilia Scotland works with individuals and families with a wide range of bleeding disorders.  Although there are around 2,500 people in Scotland with a diagnosed bleeding disorder, there are an estimated 300,000 people with one of the 6,000 to 8,000 recognised rare diseases.  So, we may be small on our own but together we have a very loud voice indeed! “Looks like rare’s not so rare.”


Sir Brian Langstaff appointed as Chair of UK Inquiry

Today, The Rt Hon David Lidington MP, Chancellor of the Duchy of Lancaster and Minister for the Cabinet Office, used a written statement in the House of Commons to announce that the Chair of the UK Statutory Public Inquiry into contaminated blood and blood products will be Sir Brian Langstaff.

Sir Brian is 69 years old and has will be full time on the Public Inquiry from 1 May 2018, when he retires as a High Court of Justice of England and Wales. However, consultation work on the Terms of Reference for the Inquiry will be conducted before then.

Sir Brian went to school in Edinburgh and was the School Captain at George Heriot’s School in 1966.  He was leading Leading Counsel for the Bristol Royal Infirmary Inquiry.

The Government written statement said,

I am announcing today the appointment of Sir Brian Langstaff to head the public inquiry into the Infected Blood scandal. The inquiry will be established under the 2005 Inquiries Act, with full powers, including the power to compel the ​production of documents, and to summon witnesses to give evidence on oath.

In relation to the appointment of the Chair, the Lord Chief Justice was asked to recommend a judge who, in his view, would be best suited to the task. The Lord Chief Justice recommended Sir Brian Langstaff: a highly respected and hugely experienced High Court judge. I have accepted the Lord Chief Justice’s recommendation.

Sir Brian will be the full time Chair of the Inquiry from 1 May following his retirement from the High Court. However, in order that those who have been affected by this tragedy face no further undue delay, he will use the intervening period to conduct a further consultation on the Inquiry’s Terms of Reference

The infected blood scandal of the ’70s and ’80s was an appalling tragedy that should never have happened. The victims of this tragedy who have endured so much pain and hardship deserve answers. It is crucial that their views are properly reflected in the Inquiry’s Terms of Reference. He will want to listen carefully to the voices of those that have suffered before making a recommendation to me on what the scope of the Inquiry should be. I will return to Parliament with the final terms of reference as soon as this process has been completed.

The Government will ensure that the inquiry has the resources that it needs to complete its work. The Inquiry will, of course, also be independent of the Government.

It is very important that the Inquiry can identify why and how this tragedy occurred and provide answers for the all victims who have suffered so terribly, and can identify lessons to be learned so that a tragedy of this scale can never happen again.


The High Court of Justice of England and Wales

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