Loch Ness Marathon Festival on 25th September
Just a wee reminder that we will be at the Loch Ness Marathon Festival on Sunday. Do pop by and say hello, find out more about our events, stay for a coffee, enjoy the activities and join us for lunch.
We’ll be at the Italian Coffee Bar from 11-1pm, then going for lunch from 1-2pm at the Food & Drink Fayre, with a choice of everything from venison burgers, risotto, hog roast to home-baking and ice cream. You can also enjoy whisky and spirit tasting and locally crafted beers. To find us, look out for the red Haemophilia Scotland umbrella. Depending on reception (!) you will be able to get us on 07930 316190 too.
More info on the day can be found here: https://haemophilia.scot/support/events/join-us-at-the-loch-ness-marathon-festival/ and http://www.lochnessmarathon.com/ If you have any questions, get in touch with Emma on 0131 281 0857, via Facebook or emma@haemophilia.scot
Haemophilia Scotland at The Big Day Out, Scottish Parliament
Malawi joins the World Federation of Hemophilia
We are delighted that our friends in the Society of Haemophilia and Allied Disorders in Malawi continue to go from strength to strength. They were accepted as an Associate Member of the World Federation of Hemophilia (WFH) at Global Congress in Orlando in July.
WFH President, Alain Weill, said,
I am extremely pleased to welcome the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to the WFH family of National Member Organisations (NMOs). The accreditation of SHAD as an NMO is the result of relationship building with Malawi by WFH staff and volunteers that dates back to 2013. I am thrilled that this effort bore fruit, and that we will continue to work closely with SHAD to support their efforts to improve care for patients with hemophilia and related bleeding disorders in Malawi. I would also like to extend my thanks and gratitude to Haemophilia Scotland for all the excellent support they continue to provide to SHAD and its staff.
Haemophilia Scotland CEO, Dan Farthing-Sykes, said,
Haemophilia Scotland is honoured to have played a part in supporting our friends at SHAD and are delighted to see them get this international recognition. Working with SHAD to deliver our joint Malawi Diagnosis Project has show just how much can be achieved when organisations like ours come together. We look forward to many more years working together to improve the diagnosis, treatment, and care of people with bleeding disorders in Malawi. Anyone wanting to support this work can donate to the project directly using Just Giving.
The WFH constitution prohibits Haemophilia Scotland from becoming an NMO ourselves but we work closely with the WFH as part of our international work. We are particularly excited that the WFH Congress will be in Glasgow in 2018 and will be working with The Haemophilia Society to make that a success.
Upcoming events in Inverness & Aberdeen
We have some great events coming up in Inverness and Aberdeen, and we hope there will be something for everyone. So far, most of our events have been around Glasgow and Edinburgh, so we are really keen to be in the North more and hope members from all regions will be able to meet up and join us there. All events are free of charge, we can provide travel costs and all details on accessibility. You can book or find out more info on our website or by getting in touch with Emma on 0131 281 0857 or emma@haemophilia.scot. If there is anything stopping you from coming along to events or if you would like to make suggestions, please get in touch.
On 25th September we will be at The Inverness Marathon Festival from 11am- 2pm, enjoying the music, food and drink, and family activities (ahem, and watching the running, of course!). We would love to see you there! Please drop by and say hello, find out more about our events and support, and join us for lunch. There will be loads happening on the day, including live music, a food fayre, whisky tasting, locally crafted beer and family activities.
On 8th October we will be heading to Transition Extreme in Aberdeen! Join us for Lunch and an instructor led climbing wall session from 1-4pm. All sessions are safe and will be supervised, we will also have support from the wonderful staff from the Aberdeen Centre.
More details can be found here: https://wordpress.com/page/haemophilia.scot/6252
Then on 3rd November, we are going to see The Andy Gunn band at Eden Court, Inverness. This is our first evening event, and looks like it is going to be great!
Highland blues guitarist (and Haemophilia Scotland Member!) Andy Gunn and his band take to the Eden Court stage for a night of electrifying blues standards and well honed original material from their new album Blessed. Also performing will be singer Vikki Kitson (who was in Jumpin´The Gunn with Andy when the brilliant school band signed with Virgin´s blues label).
You can find out more about Andy’s music on his website: http://andygunn.net/ and facebook page: https://www.facebook.com/andygunnmusic
Scottish Government takes action to find #ContaminatedBlood missing cases
The Penrose Inquiry into the infection of people with Hepatitis C / HIV from NHS treatment was published its Final Report on March 25, 2015.
Lord Penrose made just one recommendation that,
the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV
In response, the Scottish Government asked Health Protection Scotland to establish a that a Short-Life Working Group to bring forward recommendations about what practical steps could be taken to implement the recommendation from the Inquiry.
Today, the Scottish Government has published the report it received from the Penrose Short-Life Working Group and issued a press release.
The group unanimously made three recommendations,
- Delivering a targeted awareness campaign focused solely on individuals who received a blood transfusion pre-September 1991. This awareness campaign should aim to reach all targeted individuals through the use of (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognize that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.
- The identification and written offer of an HCV test to a group (up to 71) of plasma product factor recipients who are as yet not known to have been HCV tested.
- A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase (ALT) liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.
All three recommendations of the Short-Life Working Group are being implemented by the Scottish Government, with work already well underway. The public awareness campaign, for example, is due to be launched later this month.
Image by © Ken Jack/Demotix/Corbis
Cabinet Secretary for Health, Wellbeing, and Sport, Shona Robison MSP has said,
…I have today accepted all these recommendations to ensure that everything possible is done to find people who may have been infected and offer them the best care and treatment. …I would urge anyone who thinks they had a blood transfusion before September 1991 to seek advice from the Hepatitis helpline or their GP practice about a test if they have not yet done so.
Haemophilia Scotland CEO, Dan Farthing-Sykes, who served on the group said,
Perhaps the most surprising recommendation to the bleeding disorders community in Scotland will be Recommendation 2. The names referred to were uncovered by the look-back exercise conducted by the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) on behalf of the Haemophilia Alliance. They are individuals who are thought to have received treatment in a Scottish Haemophilia Centre during the relevant period who have been lost to follow-up. These efforts to find them are vital both in terms of their likely infection and the proper care of their bleeding disorder.
I know contaminated blood campaigners will be also be interested that the statistical work conducted as part of this process. That work concluded that ‘the number of [living] undiagnosed HCV-infected people, having acquired their HCV in Scotland as a result of blood transfusion pre-1991, is within the range of 0 and 63’. In fact, it is thought to be as low as 32, once those who have been diagnosed in other ways are taken into account. This in stark contrast to the figures of tens of thousands across the UK which have been suggested in the past. Those higher figures have often been given as a reason that the levels of financial support couldn’t be at set at more appropriate levels.
More information
The full report and the data supporting it can be found on the Scottish Government website.
Transition Extreme Climbing Wall event – 8 Oct
Join us for an instructor led climbing wall session at Transition Extreme Aberdeen on the 8th of October.
Transition Extreme is a first-class facility, recognised by the Mountaineering Council of Scotland as a regional centre of excellence. Its amazing facilities provide the perfect introduction to indoor climbing. It’s a brilliant combination of exercise, psychological challenge and chance to build lasting friendships.
This is part of a new series of events running which are aimed at to bringing teens and young adults together. But everyone is welcome at this event for both the lunch and climb, and we would love to see you there! Looks like great fun! All costs for lunch and the climbing sessions will be covered, so this event will be free of charge. Assistance with travel costs are available on request.
There will be instructors with us for the whole session, so this will be suitable for all levels. We will start with lunch at 1pm in the cafe, and will be on the climbing wall from 2-3:30pm. It is rare for injury to happen at the climbing wall, but we will be accompanied by fantastic staff of the Aberdeen centre on the day. Should be great fun!!
If you have any questions or would like more info, please contact Emma on 0131 281 0857 or emma@haemophilia.scot
Have your say and you could win a FitBit
We are working in partnership with the new Scottish Inherited Bleeding Disorders Network to survey the needs of individuals and families with bleeding disorders in Scotland.
With your help we can make sure services are as relevant to you as possible.
Your information will be held by Haemophilia Scotland and only published in an anonymized report. The answers you give will not only influence what services we provide in the future but it will also inform the work of the Scottish Haemophilia Centres.
We know you are often asked to complete surveys so we wanted to give you a bit of an extra incentive this time. To say thank you for your help, all completed survey’s will be entered into a draw. First prize is a Fitbit Blaze and two runners up will win a Fitbit Alta. We think it should take you about 20 minutes to complete the survey.
If you would prefer to be sent a hard copy of the survey then please contact us on 0131 281 0857 or emailing info@haemophilia.scot. We can also arrange for you to be able to complete it over the phone.
This work has been supported with an unrestricted grant from Baxalta, a Shire company.
Join us at the Loch Ness Marathon Festival or sign up to be a runner!
Take part in the UK Government review of Personal Independence Payment (PIP)
The Department of Work and Pensions (DWP) of the UK Government has launched a call for evidence for a review it is conducting into the Personal Independence Payment, known as PIP. Some members have told us that they have had problems with this benefit so we think it is important that people with bleeding disorders take part in the review. This is one of the benefits which will be becoming the responsibility of the Scottish Government so it is important we have a good understanding of it’s weaknesses so we can lobby both Governments for improvements.
The DWP want to hear from both organisations and individuals who have information about how all aspects of the PIP process and assessment are operating.
If you would like to make your own submission the deadline is 5pm on the 16th September 2016. You may find it quicker and simpler to complete our short survey which we will use to inform our submission.
On a related topic, we believe that many people with bleeding disorders in Scotland are not claiming all the benefits they are entitled to. Although many of the Haemophilia Centres can refer people for benefits advice already, we are looking at ways to make advice easier to access and more closely related to bleeding disorders. If you’d be interested in being kept informed about this please complete the contact form below.
Diagnose Malawi: Are you dancing? We are asking!
We are delighted to confirm the Diagnose Malawi fundraiser event on 27th August will be supported by wonderful Leith Labs. We will be at Ocean Terminal from 11:30-4pm, and have some great activities lined up! The day will start with a performance by Zawadi Women’s Choir, then we will have lots of exciting activities for you to take part in, including our Haemophilia Blood Doctor Crime Scene (aka Murder in the Mall?), an African Dance class, a chance to learn about breakdancing, and science and art workshops.
We would love you to be part of this event, whether it is helping us collect on the day, spreading the word, doing a sponsored dance (oh, yes!) or helping out at the crime scene. Just get in touch with Emma (emma@haemophilia.scot / 0131 281 0857) if you would like to be involved. You can also just turn up on the day, join in all activities or pay by any donation possible for the dance class.
If you would like to take part in the sponsored African dance at 1:30, go to our just giving page: https://campaign.justgiving.com/charity/haemophilia-scotland/malawi. The dance session will last for 45mins, will be suitable for all levels and will be in a public space! However, remember that everyone’s experience of their bleeding disorder is different and no one knows your body better than you do. While staying active is very important in the management of bleeding disorders you should assess the risks before trying any new activity. If you would like to trying dancing at the event please consider treating before coming along and speaking to your Haemophilia Centre about the risks.
And just to get you in the mood, here is Hemaware’s article on hip hop and haemophilia: http://www.hemaware.org/story/motion-lotion
Afternoon Tea at the Signet Library
Well, it is Afternoon Tea week, so what better time could there be to announce our upcoming Women’s Group event?!
On 11th September, we will be going back to The Signet Library, Parliament Square, The Royal Mile, Edinburgh (from 1:30 – 4pm). This meet up will give us the opportunity to review our objectives, and plan our upcoming activities (also a good excuse for cake and a catch up!).
As
a result of our first two meetings, we produced a leaflet on women with bleeding disorders for the My Girl’s Blood Booth at the WFH Congress in Orlando July 2016. Our leaflet aimed to bring relevant information and awareness to health professionals, and women and girls with bleeding disorders. All our thanks go to Susan Warren for taking the leaflet to Orlando, and to Cheryl Nineff D’Ambrosio of My Girl’s Blood Booth – it looked like a great success!.
We have lots of other exciting ideas to discuss, and we are setting up an email group. If you are not a member, and would like to join, please get in touch with me at emma@haemophilia.scot or 0131 281 0857.
