Author Archives: Dan Farthing-Sykes

CPG on Rare, Genetic, and Undiagnosed Conditions discuss supporting families

Haemophilia Scotland is a founder member of the Cross Party Group on Rare, Genetic, and Undiagnosed Conditions (CPG) in the Scottish Parliament. It gives us a chance to work with other patient group and supportive MSPs to give all rare conditions a louder voice.  As individual conditions we all have small numbers but 1 in 17 people will experience a rare condition during their lifetime so together we can have more impact.

The meeting covered two important topics which will be interesting to families with inherited bleeding disorders.

June 2018 002

Firstly, we heard about a Rare Diseases UK report “Understanding Children and Young People’s Experiences (2018).”   It’s key findings are,

  • Children affected by rare disease are adaptive, resilient and do not see their rare disease as a fundamental part of their identity.
  • There are aspects of their care children think could be improved.
  • The people that care for children, both at hospital and at home, play an important role in shaping children’s experience of living with a rare disease.
  • Children’s needs and challenges change as they get older, meaning the experience of young people is often very different to that of children.
  • Siblings understand a great deal about their brother or sister’s care and develop skills in empathy and compassion, despite facing challenges.

Both the findings and methodology of the report are very useful for us as we work to improve our children and families services and develop our teenagers project.

Secondly, the Scottish Government presented on the consultation they are conducting to develop a resource for Supporting Disabled Children, Young People and their Families.

June 2018 003They are working with individuals, families, and organisations to produce a rights based resource.  At the consultation stage it is only available as a document but once it is agreed they plan to use the information to develop a website and app.  They are hopping to make it much easier for families with disabled children and young people to find out what services and support they are entitled to and where they can go for additional support.

If you’ve ever felt like you don’t know what services you should be getting or where you can get more information then please take part in the consultation.  They really are keen to make sure the resource isn’t just another Government policy document, they want to to be something that is practical and useful.

Glasgow Royal Infirmary write to bleeding disorders patients about the plan to move the Haemophilia Unit

Melanie McColgan, Specialist Oncology Services & Clinical Haematology General Manager with NHS Greater Glasgow and Clyde (NHSGGC), has written to all patients registered with the Haemophilia Unit at the Glasgow Royal Infirmary (GRI) about the proposal to move the Unit.

Read the GRI letter to patients

The key points of the letter are,

  • They are proposing to move the Haemophilia Unit so that a new discharge hub can be built.
  • The Haemophilia Unit will stay on the GRI site.
  • The proposed new accomodation is the first floor of the St Mungo building which is located off the link corridor behind the area occupied by Plastic Surgery. The area is accessible via a lift.
  • The nearest access point to the St Mungo building is via Castle Street, or via vehicle access from Wishart Street where there are disabled parking spaces. They have agreed that additional disabled parking will be provided in the area directly behind the St Mungo building and that these spaces will be for patients accessing services within the St Mungo building.
  • They recognise that the new location may not be considered as easily accessible as the present unit.
  • They are committed to work with a small patient group to remove accessibility obstacles presented by the new location.
  • They have no timescale for any move taking place, but undertake to keep patients and staff advised of developments.

The letter advises patient that The Haemophilia Society West of Scotland Group is holding a meeting for patients on,

Saturday, 23rd June at 11am
The Boardroom
Ground Floor, Glasgow Royal Infirmary

Management and clinicians from the Haemophilia Unit have been asked to attend to talk about the rationale for the move and discuss the detailed plans. If you wish to attend this meeting, please e-mail John Prior, Secretary of The Haemophilia Society West of Scotland Group at prior-john2@sky.com or text him on 07876 592 087.

Haemophilia Scotland are not currently taking part in the process.  We have written to the Cabinet Secretary for Health and Sport, Shona Robison MSP, to object to NHSGGC taking the decision to move the Haemophilia Unit without consulting patients.  We have asked the Scottish Government to call-in the decision and to trigger a full consultation so that all patients can express their views.  We think it is a fundamental principle that no changes which affect people with bleeding disorders are made without involving them at all stages – “nothing about us, without us.”   Until we hear back from the Scottish Government we don’t think it is appropriate for us to engage with the NHSGGC process which it is restricted to communications, engagement, and access issues.

Read our letter to Shona Robison MSP

July 14th campaign meeting to cover the Scottish Scheme and the UK Inquiry

We are holding another joint members’ meeting with the Scottish Infected Blood Forum on Saturday July 14th at the Mercure City Hotel in Glasgow from 11:30am to 4:30pm.

Recent meetings have focused on either the Scottish Infected Blood Support Scheme (SIBSS) or the UK Infected Blood Inquiry.  This meeting is unusual as it will cover both.

We are expecting that by 14 July the Clinical Review Group Report will have been published.  The meeting will let us come together and respond to it.  The Scottish Government know we are meeting and will use any feedback from the meeting to inform their response to the report.  The terms of reference for the group means the report will be of most relevance to those in the current Chronic (Stage 1) category, including the widows.

The Secretary to the Infected Blood Inquiry has also agreed to come to the meeting to give affected people in Scotland up to date information and an opportunity to ask questions.

Because the meeting is longer than usual we have decided to provide a light lunch.  However, we have very limited funds so will only be able to provide lunch for those who register in advance.  So if you’d like to join us please register today.

REGISTER TODAY

#InfectedBloodInquiry Update and Clarification

The Infected Blood Inquiry emailed Haemophilia Scotland and others today to provide an update following the close of the terms of reference consultation.

The consultation on the terms of reference closed last Thursday and the team has started work on analysing the responses we have received online, by letter, in emails, by phone and at meetings. On Tuesday Sir Brian Langstaff started work as full time chair of the Inquiry and is very grateful for your contributions to the terms of reference, including at the meetings with him during the consultation period.

They have also clarified that the Inquiry will cover all of those infected by contaminated blood or blood products.  This is the same approach to the different routes of infection that was taken by the Penrose Inquiry.  In Scotland, since the Penrose Inquiry, we’ve been working closely with those infected by blood transfusion as part of our relationship with the Scottish Infected Blood Forum.

I’m getting in touch today because I heard that following this Monday’s Victoria Derbyshire programme there had been some concern about how the full range of people affected by the infected blood scandal have been described. As Sir Brian made clear in his meetings with different campaign groups, the Inquiry will be investigating what happened to all those people who were infected, whether they were haemophiliacs or not, and also considering the impact on families.

The Inquiry has also indicated it is interested in holding further meetings to give more people the opportunity to engage.   We are already in touch with the Inquiry to look at ways of making sure people in Scotland have the chance to take up this opportunity.  We will give you more details as soon as we can.

The inquiry team is now starting to consider how we can best engage with the wide range of people affected as we go through the Inquiry process. Andy Burnham, the Mayor of Greater Manchester, has invited the team to meet affected people who have been in contact with him. This will be an opportunity for them to hear first hand how the Inquiry will work and to give their views about how they would like to engage with the Inquiry.

We would like to hold some more meetings outside London to get views on how people would like to engage with the Inquiry, including from people who have not yet had the opportunity to meet the team, so please let me know if you would like to suggest a particular location, and/or a group of people to meet. And of course, please don’t hesitate to get in touch with any other questions related to the Inquiry, and I hope you will share this note with your wider range of contacts.

They have also provided information about their new offices.  This is where the administration of the Inquiry will take place but it does not have the facilities to hold any of the oral hearings.  The oral hearings will be held in other locations.

Finally, you might like to know that we have now moved into the Inquiry office premises which are close to St Paul’s Cathedral,
Fleetbank House
1st Floor
2-6 Salisbury  Square
London
EC4Y 8AE

 

Joint Response to #InfectedBloodInquiry Consultation Submitted

Fleetbank House

Fleetbank House, where the Infected Blood Inquiry is based.

Haemophilia Scotland, the Scottish Infected Blood Forum (SIBF), and independent Scottish campaigners made a joint response to the Infected Blood Inquiry Terms of Reference Consultation.

Joint Scottish Terms of Reference Consultation Response

Scottish campaigners and campaigning charities were brought together through the Penrose Inquiry process and working with Thompsons Solicitors and have continued working closely ever since. The consultation response builds on the joint position statement which we published in October.

We are grateful to everyone in Scotland who has contributed to these documents by working on them directly or by,

  • attending our joint members’ campaign meetings, in particular the meeting in Edinburgh on Sat 21st April which looked at the consultation questions in detail.
  • emailing or calling the charities, and other campaigners, to make their views know.
  • taking part in discussions on our closed Facebook group.

We are also grateful to Sir Brian Langstaff (Inquiry Chair), Brian Stanton (Solicitor to the Inquiry), and Catherine Nalty (Deputy Secretary to the Inquiry) for coming to Scotland to meet with us on Monday this week.  We have a useful and constructive discussion covering many off the issues detailed in our consultation response.

We do not claim that the consultation response represent the views of every affected person in Scotland.  However, we have tried to accurately reflect the issues that have been raised with us and highlight some of the lessons we believe should be learnt from our collective experience of the Penrose Inquiry.

 

NHS Greater Glasgow and Clyde Update on Bacteria Concerns

Haemophilia Scotland has received and update from NHS Greater Glasgow and Clyde (NHSGGC) about how they have responded to the bacterial infections at the Glasgow Royal Hospital for Children.

This is their message in full.

NHSGGC Update

Patients in the affected wards at the Royal Hospital for Children (RHC) are expected to be able to resume using showers and tap water for bathing today (Thursday, 22 March).

Filters have now been fitted to the affected wards. Bottled and sterile water will continue to be provided for drinking and brushing teeth while investigations continue.

Four children remain stable as a result of their infections and continue to receive treatments for infections which may be linked to bacteria found in the water supply at the RHC.

The parents of all affected patients were immediately spoken to by their consultant following receipt of lab test results being made available and have been kept fully informed throughout.

There are no reports of any patients being infected by bacteria from water in Queen Elizabeth University Hospital (QEUH) wards treating the most immunity compromised patients.

Appropriate infection control measures tailored to each patient in the affected QEUH wards are in place, including the provision of sterile wipes for cleaning skin and bottled water for drinking and brushing teeth.

We continue to investigate the presence of bacteria in the water supply to some wards in the RHC with input from experts at Health Protection Scotland, Health Facilities Scotland and Scottish Water.

All of the actions we took including the switching off of showers and taps during the investigation were taken with the safety of our patients on these wards in mind.

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-sq

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.

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.

READ THE LETTER FROM SIR BRIAN LANGSTAFF

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 www.infectedbloodinquiry.org.uk. 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 contact@infectedbloodinquiry.org.uk 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 dan@haemophilia.scot and/or tommy@sibf.org.uk.

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.

#PressForProgress for women with bleeding disorders on #IWD2018

Today is International Women’s Day and Haemophilia Scotland is highlighting the important work of women around the world who are fighting for diagnosis and access to treatment for women with inherited bleeding disorders such as von Willebrands.  Working together on gender equality in treatment is integral to our partnerships with our friends in Kenya and Malawi.

To watch the full videos of this panel discussion of 5 different von Willebrand disease outreach programs and the keys to their success, and for hundreds more bleeding disorder resources, go to http://eLearning.wfh.org.

The Haemophilia Scotland Women’s Group is proud to be hosting the Women’s Booth at the WFH Congress in Glasgow this May.  The booth will be showcasing amazing work from all over the world and providing a place for women with bleeding disorders to meet and exchange ideas.

Find out more about,

 

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