Thank you to those who joined us on Saturday for afternoon tea at the Carlton George Hotel in Glasgow. It was a brilliant opportunity to have a good catch up, talk about our panels for the Quilt Project, chat about the Women’s Booth, all over some mouth-watering snacks and litres of tea.
We were presented with some sandwiches, scones and an assortment of very sweet desserts which all went down a treat!
The “before” photo. We did a great job devouring the treats!
So many delectable treats to choose from!
The atmosphere was abounding in positivity and it was immensely encouraging and heartening to hear how everyone’s panels were coming along for the Quilt Project and to see how excited everyone is for the Women’s Booth.
Whilst at the afternoon tea, it was announced that the Glasgow Centre is going to donate £1,000 to the Women’s Booth at Congress. We are blown away by the kindness and generosity of the Glasgow Centre and are hugely thankful and appreciative of their support. This is a significant year with Congress coming to Glasgow and this donation will make a substantial difference. Thank you, Glasgow Centre!
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.
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.
A recent paper from the Centers for Disease Control and Prevention (CDC) covers the death of two people with inherited bleeding disorders from Sporadic Creutzfeldt-Jakob disease (sCJD) in 2014. Both of the people concerned were women. One had Type 3 von Willebrands and the other carried the Haemophilia B gene. These are the first deaths from sCJD in the bleeding disorders community anywhere in the world.
Most of the concern in the bleeding disorders community around CJD has been about variant Creutzfeldt-Jakob disease (vCJD). This is thought to be the human equivalent of bovine spongiform encephalopathy (BSE), known as mad cow disease. Many of our members were informed in 2004 that they are at increased risk from vCJD for public health purposes. This risk relates to being treated with blood products made from plasma donated by people in the UK who had eaten BSE implicated beef or went on to develop vCJD. Although in 2008 vCJD implicated prions were found at post-mortem in the spleen of a man with severe haemophilia A who died of other causes, nobody with a bleeding disorder has ever developed vCJD. To put that in context, a study found that 1 in 2000 people in the UK carry the implicated prion, which is the equivalent to 32,500 people. At the moment there have been 178 cases of vCJD in the UK.
The news from the CDC related to a different form of CJD, sCJD appears to occur at random in the population at the rate of about 100 a year in the UK (fewer than 10 in Scotland). It mainly affects people of middle age and older and has been known about since the 1920s. It is a rare condition which is why there being two cases in recipients of blood products is unusual enough to trigger an investigation. It is not known whether these cases are related to being treated with plasma derived clotting factor products or whether these cases are coincidental. The CDC paper says, “Assuming an annual incidence rate of sCJD of 1.5–2.0 per million population the occurrence of 2 cases of sCJD in this total population may not imply a causal link between the treatment and the occurrence of the disease.”
There is active surveillance both in the UK and internationally for both sporadic and variant CJD. In the UK the National CJD Research and Surveillance Unit is based in Edinburgh and examines all cases of CJD in detail. In these new cases they determined that they were sCJD (rather than vCJD ) by looking at how the disease progressed and where the CJD associated prions were found.
Prion diseases such as vCJD and sCJD are not well understood. There are still a lot of unanswered questions. Haemophilia Scotland have highlighted the CDC paper to the Scottish Government, the Scottish Inherited Bleeding Disorders Network, and are looking into any potential legal implications. We will be carefully monitoring the situation and will report any further developments on our website and to our members.
Further information about these cases can be found in a briefing paper produced by the European Haemophilia Consortium (ECH). There is more information about CJD on the NHS Choices website. The best place to go with specific medical questions about your health is your Haemophilia Centre.
In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network. We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.
There report highlighted that there is unmet demand for physiotherapy and psychosocial services. The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,
- Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
- Over half of people have additional social, emotional, or practical support needs.
- People are experiencing stigma and discrimination at work.
- While it is understood that activity is important, activity levels are low.
- People wanted more local and specific support services.
The top three priorities for the future were,
- Reducing the number of bleeds
- Finding a cure
- Reducing the frequency of infusions
Read the Report
You can download a copy here or by signing up for a free account on Issuu.
We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.
Photos from the Scottish Parliament Reception
Photos courtesy of Elspeth Parsons of The Lines Between.
We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.
Today, on International Nurses Day, we wanted to thank all the amazing nurses who work in Scottish Haemophilia Centres.
We are extremely fortunate in Scotland to have extremely dedicated nurses, many of whom have many years of experience in Haemophilia. Our members often tell us that their nurse is like a member of the family and that they are deeply grateful for the support and care they receive.
As a charity, we are also very grateful to the support we’ve received in setting up Haemophilia Scotland, running our events, and in our wider work. So many Scottish Haemophilia Nurses go above and beyond on a regular basis to provide the best possible treatment and care. They are extremely active in working with us and other healthcare professionals, through initiatives like the new Scottish Inherited Bleeding Disorders Network, to drive continuous improvement in Scottish care. Specialist nursing is vital to providing the comprehensive care package that is the gold standard in the treatment of bleeding disorders.
The theme for this year is Nurses: A force for change: Improving health systems’ resilience.
International Council of Nursing (ICN) President, Dr Judith Shamian, has said,
As the single largest group of health professionals, with a presence in all settings, nurses can make an enormous impact on the resilience of health systems. By promoting the nursing voice, we can help guide improvements in the quality of health service delivery and inform health systems strengthening.
This week the Scottish National Managed Clinical Network for Inherited Blood Disorder (the Network) met for the first time following its launch in November.
The structure for the Network which was agreed means that there will always be a minimum of two patient/carer representatives on the Steering Group. There will also be three Working Groups which any interested people can join; so patient, parents, and partners are all welcome. The Working Groups will be made up of patients and healthcare professional and will work as much as possible outside meetings. It is hoped that will make it as easy as possible for those who are working or have reduced mobility to take part. So if you are interested in any of the working groups please sign up today.
The three working groups are,
Communication and Stakeholder Engagement
This group will work on,
- Patient needs assessment
- Website and Social Media
- Production of information materials
- Education activities
- Consultation on all aspect of the work of the Network.
Best Practice, Policies, and Protocols
This group will work on,
- Updating policies and protocols
- Developing new policies and protocols (for example on moving from paediatric to adult care and/or the use of the new longer acting products)
- Spreading best practice
Quality Improvement, Audit and Data
This group will work on,
- Measuring health outcomes
- Auditing the Haemophilia Centres
- Service mapping
- Psychosocial service development
If you are interested in joining any of these working groups please contact Dan Farthing-Sykes on firstname.lastname@example.org or by calling him on 0131 524 7286. He can answer any questions you might have and pass your details onto the Network team.