https://civilservice.blog.gov.uk/2016/09/01/how-ill-be-helping-to-kick-start-black-history-month/

How I'll be helping to kick-start Black History Month

Phoebe ToppingI first became interested in stem cell donation last year, following the high-profile press coverage of the case of a young North London GP and a patient of mixed Filipino, Indonesian and Yemeni parentage. She had blood cancer and was publicly looking for a stem cell donor, as her mixed parentage made it even more difficult for her to find a match. To find out more, I settled on donation behaviours as the topic for my Master’s dissertation and got in touch with the young woman to set up an interview. Very sadly, a stem cell match could not be found in time and she died before we had a chance to meet.

In the UK, the number of donors on the blood, organ and stem cell registers is very low. Among these, there is a severe shortage of Black, Asian and Minority Ethnic (BAME) donors. The small pool of available donors for patients in need of a stem cell or bone marrow transplant equates to a very slim chance of finding a non-familial stem cell match. In fact, just 3% of the donors on the UK stem cell register are from a BAME group. This means that while a Caucasian patient has at most a 90% chance of finding an optimal unrelated stem cell match, a BAME patient has only a 20% chance at most.

Logo of the African Caribbean Leukaemia TrustLuckily, the African Caribbean Leukaemia Trust (ACLT) have been on the case for the last 20 years. They invited me to one of their donor drives in London’s Leicester Square to interview people with direct experience of the BAME donor shortage. The interviews really brought home the debilitating impact on patients and their relatives of multiple rounds of aggressive treatment during the anxious wait for a donor. These treatments can cause lasting damage to a patient’s health. The ACLT help as many families as they can by providing information and helping to publicise their search for a donor. A high number of their campaigns have worked in matching up donors and stem cell recipients.

The ACLT believe that low BAME donor numbers are due to a lack of awareness of the need for donors and limited knowledge of the stem cell donation process. They have made it their mission to educate people about how donation works and promote the benefits of becoming a donor. They do this because if more people signed up to be donors, more matches would be made, waiting times for transplant would fall and patients would be in better health for longer. Not only that, the more transplants doctors carry out, the more opportunities there are to improve future transplant procedures.

To help spread the word about donation and get more people to sign up as donors, I am working with colleagues from the Department for Work & Pensions (DWP), the Civil Service Fast Stream and HASSRA to host the DWP Donor Drive at Caxton House, London SW1H 9NA, on 28 September. The drive will be part of our programme for National Inclusion Week (26 September to 2 October) and will help to kick-start Black History Month (1 to 31 October) in the department. The DWP event will include presentations on the importance of stem cell donation from the ACLT at 10am and 1pm, followed by a donor drive in the Hub at Caxton House.

Staff and civil servants from across government are invited, to learn more about the donation process and why it matters, and hopefully to sign up to potentially become lifesaving donors themselves.

If you can't get to our event but want to know more about blood, organ or stem cell donation, or are interested in becoming a donor, you can go to the Give Blood section of the NHS Blood and Transplant website, or the website of blood stem cell donation organisation DKMS.

24 comments

  1. Comment by Gavin Thomas posted on

    Thank you Phoebe for seeking to raise awareness on a very important issue and for your willingness to participate in "Black History Month!

  2. Comment by Nicole M posted on

    Thanks, this is really good and I'd like to promote it more. What time does the event in Caxton House on the 28th September start?

    • Replies to Nicole M>

      Comment by The Blog Team posted on

      Hi Nicole. Thanks for your interest in DWP's Donor Drive. The event will run from 9am to 3pm on 28 September in Caxton House, London, SW1H 9NA, with presentations from the ACLT at 10am and 1pm. You can get tickets for the 10am ACLT presentation at http://www.eventbrite.co.uk/e/dwp-donor-drive-presentation-am-tickets-27430854424; and for the 1pm presentation at https://www.eventbrite.co.uk/e/dwp-donor-drive-presentation-pm-tickets-27431466254.

    • Replies to Nicole M>

      Comment by Steve posted on

      I am a registered blood donor but since the Abbey Wood bloodmobile visits stopped I, and several of my colleagues find it harder to give blood, especially with higher pressure at work and, for some at least, family commitments.

      The best thing the CS can do in this area is to reinstate such bloodmobile visits across any largely populated site. Could you please advise whether this is planned? Anything else would simply be a request with no support and I don’t believe would make a significant difference in this important area.

  3. Comment by Paul posted on

    Morgan Freeman has some excellent points about Black History Month. Might be worth looking into what he said.

  4. Comment by Sarah posted on

    I would donate but I've got Eczema and apparently after speaking to the blood people that's a no no.

  5. Comment by Sylvia posted on

    I gave a kidney to my partner 4 years ago. They try to match you on 6 points, we matched on 1. We took the chance and went ahead-he's alive because we tried. You need to be healthy enough to withstand the operation, I have eczema, asthma and eosinophilia but was still healthy enough to donate. I'd recommend that anyone who's thinking about it at least asks about it-you are informed and supported throughout the whole process and are able to pull out at any time if you have doubts and they grow. (I also get optional annual check ups on my remaining kidney now so it stays healthy too).

    • Replies to Sylvia>

      Comment by Phoebe Topping posted on

      Hi Sylvia,

      What an inspiring story, thank you for sharing!

  6. Comment by Mo posted on

    'In fact, just 3% of the donors on the UK stem cell register are from a BAME group' Is that stat accurate? The linked article says:

    'There are only 3% of donors on the UK stem cell register who are mixed race'

    It would be interesting to know what the actual figure is although knowing this is an issue in BME I suspect it will be low.

    • Replies to Mo>

      Comment by Phoebe Topping posted on

      Hi Mo,

      Thank you very much for your comment. The term minority ethnic generally includes mixed race individuals (unless stated otherwise in an article) but you're right, the terminology could be a lot clearer. It is actually surprisingly difficult to find the total number of donors for any of the registers and I may at a later stage get in touch with the NHS about this to see whether they can publish the stats annually on their website. As you say, we know from the transplant information that BAME donors wait a lot longer on average for a transplant almost certainly because there are fewer matching donors which means their survival odds are lower. The NHS recently published a report about this which you can read here http://www.nhsbt.nhs.uk/news-and-media/news-articles/news_2016_05_19.asp. Thank you again for getting involved in the discussion and I hope to see you at the donor drive!

  7. Comment by FD posted on

    Phoebe, I think there are age limits to donating, it would be good to mention these.

    • Replies to FD>

      Comment by Phoebe Topping posted on

      Hi FD,

      Thank you for your comment and for your interest. The upper age limit for stem cell donation is 55. For blood donation if you are aged between 17 and 66 (or 70 if you have given blood before) are over 70 and have given blood in the last two years then you can donate. There is generally no age limit for organ donation.

      Hope to see you at the donor drive!

  8. Comment by Laura posted on

    I first became a donor through work when they used to come through the building promoting a blood drive in the local area. We were even allowed to donate during works time and we would go down in groups to give a little bit of moral support for the willing but squeamish.
    Since this has stopped a few years ago, and with working on average a 45hr week I'm no longer in a position to give blood.
    As the need to donate is being promoted again is there anything on the cards to allow us to attend sessions during works time again?

    • Replies to Laura>

      Comment by Phoebe Topping posted on

      Hi Laura,

      Thank you for your comment. I am donating blood on Friday using flexitime, but it would be much better to bring blood donation to the workplace so more people could give blood. I have heard that some government departments do it, so I am sure it is possible. Why not get in touch with the estates team in your building and see whether or not it is something they have done before? I will also do the same when I move onto my next department. It might even be possible to make it a regular thing!

  9. Comment by Rosie Gallagher posted on

    I am a regular blood donor and I am due to give my 100th donation very soon. I enjoy it as you get to sit back for 30 mins relaxing and at the end of it you get a cuppa and a wee biscuit and also the knowing that you have possibly done something that will help save a life. One other thing, you never know when you might need blood yourself so come on get donating.

    • Replies to Rosie Gallagher>

      Comment by Phoebe Topping posted on

      Hi Rosie,

      Thank you very much for sharing your experience and for your call to action to donate. That's extraordinary, well done you! I am sure your donations have been hugely worthwhile and benefited countless lives.

  10. Comment by Colette Verrecchia posted on

    I gave my first pint of blood in 1986 when I was an AA in DHSS and the thought of an hour away from my desk, putting my feet up and eating chocolate biscuits was too good to miss out on. I gave my 293rd donation last week (and no I am not 100 years old) but over the years I have moved to donating platelets which is a blood product and can give this every 3-4 weeks. Platelets are donated to people with cancer or leukaemia. It is great to be able to do something so simple and to help someone who really needs it.

    • Replies to Colette Verrecchia>

      Comment by Phoebe Topping posted on

      Hi Colette,

      Thank you for sharing your unbelievable donation record. That is the most I have ever heard! I hope other people follow your example and become regular donors. We will never stop needing blood. That's a very good point about platelets, they also make a huge difference.

  11. Comment by Chris posted on

    I've been donating for years and would happily throw myself behind any office drive to encourage more Civil Servants to donate. Rosie - you're an inspiration; I've still a way to go before I achieve your level of dedication. Like Colette I remember going in a group from the Inland Revenue and attendance being supported and encouraged by the employer.

  12. Comment by James posted on

    well, im young, healthy and more than willing to donate blood. i dont smoke, rarely drink (wouldnt dare to before giving blod either) and i have a pretty rare blood type (AB-) but, its illegal for me to give blood because im gay... Hopefully others will give blood, or maybe the law would change for me to be enable to.

    • Replies to James>

      Comment by Jamie Allen posted on

      Please don't forget Civil Servants in Scotland. The links are for NHS England and don't recognise 'Glasgow' when you type in a town. As Civil Servants we can encourage and influence attitudes by example.
      Why doesn't the Civil Service give time for donation? Even for the first few. In the 1970s donation vans set up for a week or few days at businesses where I worked. I have been a regular donor since. Glasgow has a permanent donation centre which is around the corner from one of our large buildings and a 15 min walk from this. They told me that they used to come to this building but we no longer have space and they cannot park the vans outside. When I returned to Glasgow, the donor centre picked up that I had been a platelet donor here 30 years ago and asked me to resume. The next time I attended was an appointment before work to check I was still suitable, they asked if I could stay for a full donation because they had almost run out (I am a universal (O Neg) donor). My line manager agreed on that occasion only because of the urgency. This is the only time in recent decades when I have given in work time but the Civil Service publicises when donors have given a lot of times. I offered to organise something as part of our wellbeing and community involvement programme but was told it was not suitable.
      As for the ban on gay donors, I understand James' frustration. Perhaps it is something we Civil Servants can influence. The Blood Donor services have learned to cope with risks such as hepatitis A or B viruses by testing and allow those who ate burgers (CJD) in the 1980s. They are desperately short of donors. Please ask your department to encourage donors.

  13. Comment by Anthony posted on

    I got up to 55 donations until I suffered a TIA in Jan 2014, now I can no longer donate.

  14. Comment by RS posted on

    They used to have a blood van come round ABW sadly that has been stopped would be amazing to bring it back as I would use this as alot of the times arent suitable for me plus I tend to feel faint afterwards so would take me a lot longer in after giving blood where as if I was at work it wouldn't be as bad.

  15. Comment by Babs posted on

    I'm a regular blood donor, a mobile unit used to visit Alexander House in Southend which made it very convenient to donate now I have to travel miles to give blood, which is a shame.