The emotions and privilege of making The Greatest Gift
Carrie Smith, producer/director of The Greatest Gift, has followed both sides of the organ transplant story in Wales during the first year since the change in the law.
Here she tells how it was the hardest documentary series to make emotionally but also the most satisfying.
I've carried a donor card since my early teens. My mum shared her birthday with a school friend called Julie; sadly Julie had kidney failure and passed away when she was 10.
Mum has often talked about her since and says it was this that prompted her to speak to me about organ donation all those years ago.
When the law changed last year in Wales I was intrigued to see how "presumed consent" would work.
By being given a three-part observational documentary series to make on the subject, I would be able to find out first-hand, predominantly working with the organ donation and transplant teams at the University Hospital of Wales in Cardiff.
The aim of the series was to follow families who were making the decision to donate their loved ones' organs on intensive care, and also to follow people waiting on transplant lists and film their surgery.
Unlike most filming situations these events could not be planned. What I could plan though was how I might cover them if the call came.
I found a way of working in which I would keep a camera kit close by, have a grab bag ready with comfortable filming clothes and spend as much time as possible being on standby. This was not easy. I am a mum of seven-year-old twin girls, our lives are busy and full and it was hard to be able to switch off.
I became paranoid about my phone having enough battery and only arranged to meet friends and family with a disclaimer that I may well have to rush off if a call came. I cannot compare this to what it must be like waiting for a transplant at all but, I suppose I had a tiny taste of what it is like to constantly wait for the phone to ring.
It must be so incredibly hard - especially with all the treatment and medical interventions they also have to endure on top of it.
'Trust in me'
When you are making any observational documentary, establishing trust between the director and contributor is of the utmost importance.
It is the only way of gaining access to all the things you may want to film. It was fairly easy to establish trust with the patients waiting for transplants. We talked through what I would film and what they did not want me to film.
For episode two, Kim Hodge - who has cystic fibrosis - let me film her chest physiotherapy. However, we agreed that I would mostly keep it on a wide shot when she was coughing.
When it came to the donor families, this was obviously much more difficult. I really relied here on the relationship I had worked hard to gain with the medical staff working in organ donation on intensive care.
The specialist consultants and nurses initially approached the families for me. Because they were able to show them that they had trust in me, then the patients' families did too.
It was also a fairly long process of consent, I did not just film the footage and then broadcast it. I filmed the organ donation process, then I allowed time to pass so that they could grieve before contacting the donor families again. I then met them and recorded interviews with them.
And then finally, before the series was broadcast, if they wanted to, I allowed them to view the episode their loved one was in. It was extremely important to me the donor families were happy with the end result.
There were so many stand-out moments for me while making the series. Seeing the impact first hand the transplants have made for Kimberly Chard and Robin Simpson was wonderful.
Kimberly, who has cystic fibrosis, was waiting for a double lung transplant which she finally had last December.
When Kimberly found out her lung capacity was 70% two weeks post-transplant as opposed to the 14% it had been prior to that, I had to choke back happy tears.
Robin had been waiting nearly three years for a kidney transplant. He works for Welsh Government and had actually been working on the legislation, behind the scenes. For him it has been amazing.
His recovery was not perfect but before the transplant he was tied to his dialysis machine. His daughter lives in London and he could not go to see her but he is doing all that now.
I filmed a lot with Anna-Louise Bates who has set up a charity, Believe, focusing on organ donation. I found it incredibly inspirational to see how she was attempting to turn losing her husband Stuart and son Fraser tragically a year ago into something positive for others, especially while things were so raw for her.
I held it together whenever I filmed with her but, each time I got back into the car after being with her I routinely burst into tears. My children are the same age as Fraser - the son she lost - and it is impossible not to feel deep empathy for her and even guilt that my seven-year-olds are still with me - as hers should rightly be.
The generosity all three of the donor families showed me was very humbling. They let me film at such a tragic time in their lives mainly because they wanted to spread the positive organ donation message that they believed in.
Karen was approached by the medical staff and said that I could film her 67-year old dad Bill's organ donation. Bill had suffered a devastating stroke and Karen explained how his brother, who was also Bill's best friend, had received a kidney transplant which transformed his life. As a result of this, Bill had recently opted in to the new system in Wales.
Karen was asked if there was anything she did not want me to film. Her response was 'no' and as a result I was present as the doctors switched the life support off. This was extremely difficult to film and remain composed while doing so.
I tried to keep in mind that Karen had given me permission to capture it and I made sure that I filmed enough of everything else going on around the bedside so that I could edit this upsetting moment as tastefully as possible.
Bill's kidney donations helped transform the lives of two people.
After seeing the programme, Karen got in touch to say I had told her dad's story beautifully. That's all that matters to me.
It has been the hardest series to make emotionally but, I have also felt so privileged and humbled to be there for all these huge, happy and even sad moments in people's lives. It is the proudest I have ever been of anything I have made.
It has reminded me that, even at the most awful of times, people can be selfless and think of others.
The final part of The Greatest Gift, following the transplant story at the University Hospital of Wales, is shown on 20 December on BBC One Wales at 22:40 GMT. The series is also available on BBC iPlayer.