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.
There are still places left for our free cruise and AGM on Saturday 20 May.
Once everyone has arrived and registered we will have some lunch together (12 noon) before holding our AGM. At the AGM you’ll hear reports of our activities and find out how we are managing our finances. It will also be your chance to elect trustees to our board.
Once the AGM is concluded we will all be going on a cruise on the SS Walter Scott out on Loch Katrine (2:30pm).
All members of all ages are very welcome. If you need help with the costs of travel then please get in touch with Dan Farthing-Sykes.
The Glasgow Haemophilia and Thrombosis Centre has plans to mark World Haemophilia Day with their usual combination of style, panache, and baking. They are cordially inviting patients to join them on the 21st April from 1pm to 3pm when their waiting room will be transformed into a vintage tea room.
Victorian dress is encouraged but not compulsory. Whatever you wear, we’d advice nothing with a tight waist as, if previous years are any guide, there will be a lot of delicious treats to try. You can let them know you are coming along on 0141 211 4840.
This year the World Federation of Hemophilia is taking the opportunity of World Haemophilia Day to bring attention to the women and girls in our community who live with a bleeding disorder or has someone in their lives who does.
World Haemophilia Day is officially on the 17 April every year but around the world many events fall in the surrounding days.
We are closing the needs assessment survey on Thursday morning (1st December). We’ve had a really good response so far but the more people who take part the more useful our results will be. We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.
There are some parts of Scotland that are a little under-represented at the moment. We are keen that the results reflect everyone in Scotland. So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.
If you do take part then you might also win one of three FitBits that we are giving away. They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!
We are delighted that Alex Dowsett will be our lunchtime speaker at this weekend’s “Try Something New” event at Crieff Hydro. If you have already registered you can see the final schedule for the day here.
Alex is an inspiration to people with Haemophilia all over the world. Despite his condition he has been able to climb to the top of the world of cycling claiming many championship titles and holding a string of records.
He will be speaking about his experience of living with Haemophilia and how he has gone on to achieve to much. His visit makes the launch of this year’s Miles for Haemophilia campaign. The campaign asks people to challenge themselves while raising awareness, and sometimes money, for haemophilia.
There are lots of ways of getting involved in the Miles for Haemophilia campaign.
You can find our more about Alex Dowsett and his work to inspire younger people with bleeding disorders the website of the Little Bleeders charity which he founded. You can also follow him on Twitter.
Yesterday the cycling press was reporting that Alex is considering an attempt to regain his #PerfectHour world record. See our video of the last time he set the record.
The Try Something New Event and Miles for Haemophilia are both supported by @Pfizer.
To mark World Haemophilia Day, we have planned and event both exciting and informative! We are thrilled to be part of this year’s Edinburgh International Science Festival, and to be working with Blackwells and forensic artist Gillian Taylor on this event! More details on the crime scene and how to book can be found here: http://www.sciencefestival.co.uk/event-details/the-blood-doctor
Some of the parents of children with a bleeding disorder already linked with other families in Scotland
Following our successful Parent Mentoring Pilot Project the project has continued to develop. Thanks for funding from the Health and Social Care Alliance, IMPACT Fund, we’ve been able to increase the number of Children and Family Days we have held.
These days give families the chance to come together a meet each other. Previously, this has led to us pairing parents up as mentors and mentees. However, we have discovered that mentors are benefiting just as much from the experience of their mentees as the other way round.
This weekend the families involved in the project decided to stop talking about mentoring. They wanted a term which better reflected that it was a mutually supportive, two way, relationship, where everyone’s experience is of equal value.
Therefore, from now on we will be making links between families rather than mentoring relationships. The group hoped this would also be more welcoming to a wider number of families. Training will still be provided to everyone involved in the project to make sure those links are well supported.
So if you are the parent of a child with a bleeding disorder and would like to be linked with another family please get in touch.
Email Emma Black at firstname.lastname@example.org or call her on 0131 281 0857.