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.
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.
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.
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,
- 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,
- The Inquiry should be under a panel rather than a lone Chair.
- 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.
- Many more affected people should be able to give oral evidence than were permitted to during the Penrose Inquiry.
- 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.
- Be accessible to people all over the UK including holding public hearings in all four nations and streaming the proceedings online.
- 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.
- 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.
- There are important lessons to learn from the Scottish experience of the Penrose Inquiry including,
- 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.
- The Chair and Panel should be young enough, and foreseeably well enough, to complete the work while in good health.
- 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.
- The Inquiry should be focused on bringing out the whole truth and the terms of reference should include,
- 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.
- All viruses and prions including Hepatitis B, Hepatitis C, HIV, and CJD.
- Have all appropriate lessons been learnt and if so what specifically has changed? Should include a full risk assessment.
- The development and use of pooled plasma derived clotting factor products.
- Protecting the safety of the blood supply, including surrogate testing and donor exclusion.
- Consent for research, testing, and using stored samples.
- Communication of risk and infected status. Were patients fully informed and included in decision making.
- Whether evidence was removed by the destruction or alteration of medical records or other relevant files.
- 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.
- 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.
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.
Thank you for everyone who came to our joint campaign meeting with the Scottish Infected Blood Forum (SIBF) on Saturday. It was an extremely interesting and informative debate. We will post a report from the meeting for those who couldn’t be there as soon as possible.
One piece of feedback we’ve had was that people would like to know more about the upcoming meeting with Bishop James Jones. All the information we currently have about is detailed below. Bill Wright and Dan Farthing-Sykes will be attending on behalf of Haemophilia Scotland and look forward to seeing anyone else who is able to attend.
Bishop James Jones, former Bishop of Liverpool is Chairing a meeting of the affected communities and their representatives. The meeting is being supported and promoted by the All Party Parliamentary Group on Haemophilia and Contaminated Blood. No representatives of the Government will be present at the meeting.
12th September 2017. Refreshments will be available from 11:30am and the meeting will start at 12:30. There will be a break in the middle of the meeting which will finish at 3:00pm. The Bishop will be available informally for a short time afterwards.
BMA House, Tavistock Square, London, WC1H 9JP.
The Bishop has agreed that the purpose of the meeting is:
- To assist the Community in communicating to the Government their concerns with the process for setting up the Public Inquiry, (e.g. The Department of Health cannot be the sponsoring department);
- To assist the Community in discussing how they would want to be involved in drawing up the Terms of Reference;
- To assist the Community in communicating to the Government their own understanding of the next steps that need to be taken to set up the Inquiry.
Anyone who wants to attend should register in advance by emailing Diana Johnson MP on JOHNSOND@parliament.uk. The deadline for registration is the 5th September.
Receipted, reasonable travel expenses will be met by the UK Government. Further information on how to reclaim travel costs following the meeting. The UK Government is, however, not able to cover accommodation costs.
We are grateful to The Haemophilia Society who are involved in organising this meeting and provided this information in their capacity as the Secretariat to the APPG on Haemophilia and Contaminated Blood.
Thank you to everyone who made the trip to come to our Deep Sea World Shark Party on Sunday. We know several families travelled for hours for the chance to talk to other families with bleeding disorders… and come face to face with the sharks!
In fact we had well over 100 people on the day and the party room was always busy with people refuelling between reptile handling and the shark tunnel. Next time it looks like we are going to need a bigger boat! A great problem to have for a rare conditions charity!
We are extremely grateful to all the staff at Deep Sea World who kept us well organised (we even had our own announcements) and gave some extremely informative talks. I know a lot of people really enjoyed their encounter with a corn snake or a bearded dragon. The staff were very impressed with how brave everyone was too.
If you’d like your photos from the day included in the slideshow above then please send them into firstname.lastname@example.org
On 8 April 2017 we held our first every joint meeting with the Scottish Infected Blood Forum (SIBF). The SIBF campaigns on the contaminated blood and blood products disaster, regardless of the route of transmission, in Scotland. We wanted to come together to update members of both organisations on the current situation and give everyone a chance to have their say.
Tommy Leggate from the SIBF provided information about the new Scottish Infected Blood Support Scheme (SIBSS) and some of the work that the SIBF and Haemophilia Scotland have done together in response.
Leone Bissett spoke about the proposal for a memorial to those who had passed on as a consequence of the disaster. She urged everyone to support the Contaminated Blood Memorial Fund. The memorial will be a lasting tribute to those who died as a consequence of the disaster. The location needs to be accessible preferably in Edinburgh and durable enough to be withstand any possible weathering or other damage. It needs to be physically accessible to all ages and physical capabilities and will include words to explain what happened. Individual names need not appear but there may be ways of including individual messages. The style needs to be clear that it denotes a disaster but is also +ve and forward looking. A budget of £45,000 might be needed and so far £8,500 had been raised. It was agreed that the project had full support of those attending and agreed that the small steering group who had driven the project to date should continue to lead it.
There was then a discussion about what still needs to be done and how the new scheme could be improved. This discussion identified a number of potential issues including,
- The availability of income top-up support. Grants will be reviewed in Oct.
- The availability of lower value one-off grants from the support and assistance grant fund.
- Widow(er)s could choose a nominated doctor to help their case for gaining Stage 2.
- The term ‘Sustained Viral Response’, rather than cure, is to be applied where new the viral treatments for HCV have been ‘successful’.
- More case studies were needed to feed into the clinical review. For this, survivors access to their own or loved ones medical records might be necessary.
- Some concerns / anxieties were expressed about the application process. The first port of call should be NSS. However there was concern expressed about the telephone manner of one NSS response to a query.
- The phrase on one of the forms ‘if you really need it’ was regarded as insensitive.
- It was agreed to invite NSS to the next meeting in the autumn.
- It was noted that ‘Stage 1’ widows in particular were missing out.
- Concern was also noted about the composition of the Appeals Panel.
- All agreed that a future guarantee on the level of payments as a minimum is needed. It was agreed to write to all the political parties seeking their agreement to maintain the levels of payments set so far as a minimum.
- It was noted that Stage 0s may have particular problems in securing access to the scheme due to missing medical records.
- The issue of the widows pension payments not being made to those who have remarried.
- The cross border issues caused by the requirement that people were infected in Scotland and lived in Scotland when they first applied for support.
Although not know at the time of the meeting, the BBC were working on a Panorama programme to highlight the impact of the disaster and some of the evidence of wrong doing. The programme, Contaminated Blood: The Search for the Truth, was aired on 10 May 2017 and can be viewed below. It will be available to view for 12 months if you missed it when it went out.