Our Social Media Community and Volunteer Manager, Elizabeth was diagnosed with genetic haemochromatosis in June 2019. In this blog post, she reflects on her experiences of the new blood donation scheme in England and throws light on what goes on behind-the-scenes to make the scheme work. 

We've been working closely with NHSBT to create opportunities for people with genetic haemochromatosis to become blood donors. In April 2019, the donation rules in England were simplified making it much easier for people with GH to register as blood donors. From May 2020 we have also negotiated special arrangements to access ring-fenced donation slots and other exceptions.

Over the summer we sent out a survey to ask people what their experience was like becoming a blood donor from registration, to final donation.  This survey showed a lot of positives, but also some issues. 

Yesterday, we shared these findings with senior decision-makers at NHSBT in a Zoom meeting .......

Due to Covid a lot of us have had our treatment cancelled at our venesection clinics, which has caused extreme worry or anxiety. Especially as without treatment we may feel our symptoms of fatigue, joint pain, brain fog coming back. Not to mention other more serious aspects GH poses without our life saving treatment. 

My experience of being a GH donor

One of the main issues people had with the new scheme was being able to register easily. This was also reflected in my experience.

Just as Covid was starting to look like a serious problem, I made the choice to become a donor. My venesection at the hospital had been cancelled, and I had almost reached my magic 50 ferritin my consultant wanted me at but not quite. The process was a bit of a chore, I was told I had to get a consultant's letter (this is not correct) , and had to fill out a series of forms, then wait for a head nurse to phone we back. All this took quite a while, and as Lockdown hit and more of my appointments at the hospital got cancelled. I started to think, "Will my treatments ever re-start and my levels would rise again?" This was not ideal considering the years' treatment before and I certainly didn't want to have to go back to every two-weekly venesection.  

But I eventually did get my appointment which I have to phone up for rather than using the app (I somehow feel I'm missing out, not being able to use that) and my donor journey began. I have donated twice now once at my preferred location since the start of Covid and after the initial bumpy start, and a cancellation text on the morning of one of my donations, I didn't see so went anyway, the process has been a positive one. 

The donation centre and staff are well organised, you get an isotonic drink before, snacks and drink after (you don't get these at the hospital). When you first arrive you have to go through the medical form, the first time around, I had to speak with the head nurse (felt a bit grilled) I took my consultant's letter and the letter from NHSBT saying I could donate. I am also aware of my ferritin and haemoglobin levels before as you will get asked and they test your hamoglobin before. 

How does it compare to my hospital treatment? 

It is a bit different. A lot quicker (10 mins), at my hospital it would take 25/30mins. Nurses sit with you at the hospital (and I will miss them) - at donation you are left to sit in your chair, but you are being monitored by the machine, which beeps at you a lot. You also must monitor your own iron levels. I test before and after my treatments (via my GP), so that's a bit of a pain, but have got into the swing of it now. 

What's nice though, is that my blood is being used to save others and this is saving my life. You get notified when your blood has been sent somewhere and that is amazing. 

My experience of becoming a donor, is much like others who took the survey. NHSBT are concerned about the issues raised and want to resolve them quickly. Most notably, with the difficulty of registering, being told we needed a consultant's letter (no, that's incorrect),  and over 70's being told they can't donate (also incorrect - GHers over 70 are welcome to donate). These should be quick fixes, which NHSBT have committed to working on this month. Cancelled appointments are, however, usually due to lack of staffing because of Covid, so possibly that's not a quick fix.  

Next steps

We will be working closely with NHSBT, to resolve these issues raised, because if you can donate it is a really positive, and lifesaving way to get treated. We've got a follow-up meeting already arranged for November. Just today, NHS BT's Assistant Director of Donor Operations got in touch to confirm they've started working on the actions from yesterday's meeting. Result!