Q&A about bone-marrow donation and cord-blood donation with the communications team from Anthony Nolan - ANSWERS BACK

[RachelMumsnet]

Given the number of questions raised on this thread, we've been in touch with the communications team at Anthony Nolan and we're delighted that they have agreed to join us this week and answer your questions.

Anthony Nolan is a charity that helps save the life of people with blood cancer by using their register to match them with volunteers willing to donate their blood stem cells. There are currently 430,000 people on the Anthony Nolan register, but they are only able to find a match for around half the people who are in need of a lifesaving transplant. In order to double the number of lives they help save, they want to grow their register to one million potential donors. They are particularly keen to recruit young men aged 18-30, as they are the most likely to be chosen as donors.

Anthony Nolan also runs a cord blood donation programme at four hospitals around the UK. A cord blood unit is an alternative to finding an adult donor, and has many advantages, such as being immediately available for transplant, which has better outcome for patients. It also helps to address the lack of adult donors from ethnic minority backgrounds, who are traditionally underrepresented on the register. Under the scheme, mothers can donate their umbilical cord and placenta (usually thrown away as clinical waste), which are tissue typed and stored until needed. Donating does not interfere with the baby's birth once the baby has been safely delivered, a dedicated cord collector will make the collection, leaving the midwife free to focus on mother and child. For more info, please visit www.anthonynolan.org/cordblood. It is estimated that if they can collect 50,000 cord blood units (between Anthony Nolan and the NHS), they will be able to meet 80% of transplant requests.

Send in your questions about stem cell (or bone marrow) transplants, the work of Anthony Nolan and their cord blood donation programme and we'll be sending over a selection of your questions to a panel at Anthony Nolan: Ellen Marshall (Communications Officer), Guy Parkes (Head of special Projects) and Amanda Blum, (Donor Support Supervisor). As we're keen to get the answers back and live on the site asap, we're not setting a close date for the Q&A but will post on this thread once we have enough questions to send over and will keep you posted on when to expect the answers back.

To sign up to the register, you simply need to visit www.anthonynolan.org/spit, fill in a short application form and provide a small saliva sample. As it costs £100 to recruit each new donor to the register, the charity needs vital funds as well. More info can be found at www.anthonynolan.org

My 11 year old relative in Aistralia has leukaemia.

He urgently needs a bone marrow transplant. How can I get myslef and DC tested to see if we could donate? Thanks

I tried to phone the GP surgery but they weren't much help.

What woolyhead said. I think you're a great charity but have some concerns about the way a birth would have to be 'managed' in order to collect the blood cells.

Research is now suggesting that the cord should be cut much later than it currently is, after it has stopped pulsating and perhaps even after the placenta has been delivered in order to bring the baby into the world more gently and to ensure they get their full allowance of iron and reduce the likelihood of jaundice. I emailed you charity in the past asking for clarification on this and you said you were 'working on a solution to this'. Have you found one?

Finally, is there ant mileage in menstrual blood donation?

Why isn't cord blood donation more widely known about? I'd have happily donated DD's if I was able had I known about it.

Why cannot very fit and healthy over 50s donate?

Which Scottish hospitals participate in the cord blood scheme? (Did Ninewells run a trial during 2007 ?)

I tried to register last yr but was told that I wasn't eligible due to a whiplash injury 13+ yrs ago which hasn't caused me trouble for years. I understand that the donation procedure might cause the whiplash to flare up, but I'd consider that a small sacrifice if someone's life was saved. Is there any way to apply again?

Like TheOriginalNutcracker, I have antibodies in my blood (Big E and little c in my case) following a blood transfusion. I know I can no longer donate my blood or breast milk but can I donate bone marrow ?

I donated DD1's cord blood - it was very straightforward. I would encourage anyone to sign up. I had a physiological third stage with her so I presume this answers AtYourCervix's question.

Blatherskite - I think it's only publicised to pregnant women planning to give birth in the four hospitals where it's possible to donate cord blood (I gave birth in Watford). Those hospitals were chosen because of the high levels of ethnic diversity in their catchment areas.

I would have appreciated more info at the time about the issue of letting the cord stop pulsing - I thought about it when I was considering donating the cord blood but then forgot to ask .

I would have donated DD2's cord blood too but she was a planned homebirth (although actually born in the hospital's midwife-led unit, but that's another story).

I'd like to ask....

Can I donate if I suffer from cyclothymia ( a mild form of bipolar)? My counsellor did say I wasn't bipolar though.
Also, can I donate if I have had IVF?
And, where will cord donation be available in the near future?

What I don't understand is why is a charity co-ordinating all of this - should bone marrow donation, stem cell donation not be an NHS function and therefore tap into national NHS resources (existing midwifes trained to take cord blood for example)

As far as I understand the 40year old upper limit for new applicants only is due to the cost (I've heard £100 pounds per person) to get on the register so the charity can get the maximum time on register vs cost ratio.

I understand that as a charity this may make sense - but people are dying because of this financial rational. Again - if this came under the NHS remit would such an upper limit apply do you think? It seems nonsensical to me to be turning down potential donors because of an arbitrary accountancy cut off.

Please can I ask: On your website its states you can't donate if you have ever had cancer. I had a melanoma removed by surgery only and no further treatment. Would this still prevent me from donating?
Many thanks

Another sciatica question

I suffered for a period of about a week once following a fall on ice - it was solved with deep tissue massage - what I'm saying is, I don't have sciatica as a recurrent or acute disorder

Will that one week years ago really prevent me from donating?

I have "controlled" ME, I have always previously given blood until the change in rules - am I ineligible because of the blood donation rules and if so what is the scientific research behind that?

The NHS do all the treatment type stuff, but AN are in charge of the data base.
Its a simple thing to do, you spit in a pot, and send.

Hello to the ANT team

I'd like to pass on some feedback re tge cord collection scheme in my area. I was very passionate about the scheme, in fact it actually swung tge hospital birth rather than home birth debate for me. I'd had many member of my family fight and them win or lose fights tgat your scheme may have helped with.

I met the collector when I arrived and expressed how desperate I was to donate. She seemed pleased and promised to be back shortly. All good so far, the problem is I have no idea if the donation was made. I don't know what tge reason was if it wasn't. I asked every single hcp tgat entered my room once I was on the ward and not one person could tell me.

I know not every collection can the made, and I knew that at tge time, but to have no idea whether or why isn't nice. What I'm really scared of is that it was collected and then couldn't be used because I hadn't signed anything.

I would be very happy to discuss this further/give more info if you'd like to contact me.

I registered a couple of years ago and since then have been diagnosed with autoimmune hypothyroidism. It hadn't occurred to me that it might affect my eligibility to donate - does it?

If so I'll have to get in touch with you officially and get taken off the register

Is it a blanket rule that anyone with Lupus (SLE) cannot donate? I have a mild form of lupus and lupus related clotting issues (lupus anticoagulant) and just wanted to clarify as it makes me that I can't help

Another vote for why can't people with sciatica donate bone marrow? This seems to be my only barrier.

Also I really wanted to donate cord blood from my birth last year but was told my hospital didn't collect it. When will this sort of donation become nationwide? It seems such a waste.

MrsDV my sympathies, can't imagine what you've gone through.

DH has to have bone marrow biopsy every few months, and you have to lay very still while they do it, and its quite sore after. He only has to have enough taken to count the cancer cells, if you were donating it would be alot longer. I would assume that is why they dont let you donate if you have sciatica.

here another reason to donate, if not him, if not expats dd, someone somewhere could live because of your help.

I don't understand why having Bipolar means you cannot donate? Like FatimaLovesBread I have Cyclothymia.

I can't donate as I had skin cancer. But that was a minor cancer (in my case, small, found early), they cut it out, job done, and I am in the clear. Why can I not donate now!

Ooh, sorry, same post as whostolemyname.

I dont understand the sciatica thing as well

Lisa I understand they use apheresis now so dont need to 'go into' the bone marrow itself

Ah yes..... AN could you correct me on this ^