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UK Department of Health to meet with campaigners – tell us your thoughts

An update from our Chair, Bill Wright, about the upcoming meeting with the UK Department of Health.

Bill WrightFollowing on from Sir Brian Langstaff’s letter to the Cabinet Office Minister on the question of financial hardship experienced by those infected across the UK the Department of Health have asked to meet a small number of infected campaigners largely based in England, but also one from each of the other schemes administered in Wales, Northern Ireland and Scotland.

I have been asked to travel down from Scotland to meet the UK Minister responsible, Jackie Doyle Price MP and would welcome any views that members of either Haemophilia Scotland or the Scottish Infected Blood Forum have on the financial support they receive compared to the rest of the UK. I am particularly keen to hear from anyone that is infected or widowed living in Scotland but where the infection is recorded as in England / Wales / NI and they are not in receipt of support from the Scottish Infected Blood Support Scheme. I can be contacted on bill@haemophilia.scot preferably before January 8th. If you prefer a phone conversation, let me have a number either via email or the office and I can get back to you.

Any thoughts, particularly those from anyone still suffering serious financial hardship will be treated in the utmost confidence.

Thanking you in anticipation.

All the best,

Bill

The Haemophilia Society (UK) has made a statement about its involvement in the meeting.

3 comments

  1. If the carer is not a wife but offspring, there doesn’t seem to be any provision so far Bill. Where family breakdown has resulted from the diagnosis, it seems to leave a big gap in the reckoning when offspring give up pushing for their own career, and become involved in an ill parents daily care, and because the ha e to also hold down a job, don’t qualify for care allowance and struggle to conduct a life beyond caring for their parent. In my half sisters’ case it has gone unrecognized. The situation had an impact on all 3 of us that way, though I was already tied with my children, only able to provide respite a few weeks a year. But my younger half sister moved close and did everything for the last 11 years. It was a no-brainer for her. No way out. But she’s not a spouse. This will all be in her own statement as a Core Participant, I sincerely hope. I just want to backnit up. Also for our younger sister who left a career down south and has struggled financially and in every human way to help our Dad to the bitter end. I feel offspring should be recognised as well as widows or spouses. Especially for unmarried offspring theres little choice but to step in, It’s hardly uncommon, yet it goes quite unrecognised. Single and middle aged daughters and sons nursing their parents are just another knock on effect it seems.

  2. Hi Bill, thank you for this. I know it’s not the first time I’ve raised this, but do you think categories of financially disadvantaged carers would go further beyond that of a spouse? In the case of a divorced infected person relying on care from daughters who have given up work to care for the affected person, or, because they have had to juggle a full time job and caring for their parent, they have not been not been recognised as an carer by the DWP. Stuck in between two opposing poles, unable to progress in their career as a result of their commitments out of work time – basically kept in aspic, and just scraping by. I think this category could be in danger of being overlooked Bill and I would welcome your thoughts. I am not referring to my own situation incidentally, as I think I put in an earlier comment to this discussion.

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