INTO 2023 WITH HOPE AND RESOLVE
A Christmas word or two – Bill Wright, Chair.
Emerging in 2022 from the shadow of covid, we have certainly been exposed to the light and dark around our hard-pressed health care services. As ever our thanks go out to all those who provide those services for us with bleeding disorders – nurses, doctors, psychologists, not forgetting administrative staff and physios. In the latter case we very much welcome the funding in Edinburgh which brings the sort of dedicated expertise we would like to see funded for centres across Scotland. Hopefully, if and when the Inherited Bleeding Disorders Network starts to meet again we can look together at how we might secure funding for more such dedicated physio input.
SO WHAT ARE YOUR NEEDS FOR 2023?
Please, please complete our Needs Assessment form.
For some considerable time, funding for physiotherapy has been a priority for both patients and our medical staff in haemophilia centres. But of course bleeding disorders bring about other needs as well. As a charity we need to hear from you what those needs are. We last conducted a needs assessment in 2016. If we are to meet your needs, we need to hear from you about your needs for 2023 onwards. They might be more advice or raising queries with decision makers or service providers or more opportunities to meet others with bleeding disorders.
For the first time since covid hit we started this summer to host events in person again. I was particularly pleased to attend the Women’s Group gathering at the Gallery of Modern Art in Glasgow on World Haemophilia Day. The presentations made were both informing and inspiring. The quilt was on display along with a number of similarly impressive artistic works from those women affected by bleeding disorders. Please keep in touch with our website for all our events planned for 2023. By completing the needs assessment you can shape what form those events might take
ART IN THE SCOTTISH PARLIAMENT – A SUITABLE INFECTED BLOOD TRIBUTE?
Speaking or artistic works, after three years, we have finally heard back from the Parliament in response to our proposal to site an artistic tribute to those infected via blood and blood products. The proposal involved placing a large installation in the design of a willow tree in the grounds immediately outside the Parliament building.
Thanks to the fantastic efforts of many of you and the Contaminated Blood Memorial Group, the funding target of £40,000 was achieved.
However, we have recently, after first talking to Parliament officials over three years ago, finally had clarification on our idea of an outside installation.
They have said,
“The SPCB’s policy is not to have permanent memorials in the grounds of the Scottish Parliament. Parliamentary officials have been reviewing all relevant policies to evaluate whether they remain fit for purpose almost 20 years on from the opening of the Parliament building and, although they will be looking to amend some of the policies to reflect changes over those years, it is unlikely that the policy on memorials will significantly change to allow this proposal to progress as requested. In any case, any changes will require to be agreed by the SPCB. As I am sure you will appreciate, the grounds were designed to be a green outdoor space and there are careful plans in place to manage its biodiversity. The addition of any permanent memorials, or indeed other artworks/sculptures, would be a significant change to its designed use.
I am conscious however of the previous work with the Scottish Parliament and its committees on this important issue, and also of the campaigners’ hard work and efforts to develop a memorial proposal and raise funds. As such, I would recommend that Bill and Leone meet with parliamentary officials to explore options for how the Parliament can commemorate those who lost their lives due to infected blood products in Scotland within our current policies and once again explore the commissioning of an artwork that could be displayed inside the Parliament building and become part of the Art Collection.“
So, early in the New Year, we will pursue this option in order to establish what might be involved and then conduct another consultation across the community in Scotland of those affected on any options there are.
INFECTED BLOOD STORY – BEYOND INQUIRIES?
As the Inquiry draws toward a close with closing submissions completed, despite all the exhaustion and weariness with the time taken to get to this point, there is also a sense by and large, of a thorough job having been done by the Chair and his staff. Indeed particular thanks are due to our Counsels Jamie Dawson and Heather Anderson for the very detailed legal submissions being made on our behalf.
While the Inquiry Final Report will not be published until the summer of 2023, the focus of attention is already turning toward the political theatre and the response to the evidence from Parliament(s) and Government.
A House of Commons debate on Dec 15th provoked considerable frustration among MPs and those affected alike because it appeared to offer little beyond that announced in the autumn. However, the Minister for the Cabinet Office, Jeremy Quin made three remarks of significance in his response.
First the Government (after several decades) finally accept that there is a moral case for compensation to be paid as recommended by Sir Robert Francis. This appears to be the first occasion when such a Government acknowledgement has been publicly stated.
Secondly, a cross government working group at Permanent Secretary level has been established under the chairmanship of Sue Gray. Such senior civil servant involvement is significant. An undertaking has been given to work with devolved Governments and we will be seeking further details from Scottish Government when, along with SIBF, we meet with them in the New Year.
Third, the Minister also stated that he wanted to meet with ‘members of the community’. He did not expand on that but we are writing to him to seek clarification of what such a ‘meeting’ is intended.
So, while frustration with the story dragging on there are signals from Government of progress not seen before.
LOOKING FORWARD TO 2023.
From a personal perspective, my own profound wish is that we might now finally turn the tide of how we might view our world; from looking back at the horrors of the past; to instead start to look forward optimistically at what possible opportunities potentially will come out of all this. There remains a great deal of work to be done but with sufficient resolve we can hopefully help to improve the lives of those with bleeding disorders whatever their circumstances.
For those with the most serious illnesses at this Xmas time, we wish you peace and comfort. And for everyone wherever they are and whatever their circumstances we look forward to the New Year wishing you all the very best for 2023.
At this time our thoughts of course go to those we have lost during the year but also those in ill health or those who have had bad bleeding experiences – they still happen. But please also spare a thought for those with bleeding disorders in places like Ukraine, Afghanisatan, Ethiopia and Yemen. For you and them we wish for a pain-free and peace filled Xmas.
All the best,
Bill.
The Haemophilia Scotland office is now closed for the festive period and will reopen again on Wednesday 4th January 2023.