The lottery of life

Xanthe took this picture in early January, Daisy was in for an MRI under general anaesthetic as her neurology team tried to work out why her physical abilities had deteriorated so dramatically over the past few months. It was only a few weeks later that same month that Daisy passed away in the intensive care ward of the hospital.

This picture does not just speak volumes about the bond that Daisy and I had, that speaks for itself.  For me it also tells a story of a little girl who was safe and sound.  No matter what was going on in her life, she was cared for, she had a roof over her head, she had access to help.

Thanks to our wonderful, and yes, imperfect, National Health Service, Daisy had the best of everything.  This picture is of her recovering after yet another central line insertion in the state of the art interventional radiology suite at Great Ormond Street hospital.  Her treatment must have run into thousands and thousands of pounds, possibly close to millions.  The daily bags of fluid, the total parenteral nutrition (TPN) that kept her alive cost, I am told, at least £500 per day to compound and make up.  She had medication after medication, surgery after surgery, therapy after therapy.  All provided free, at no point did we have to do battle with some insurance company to justify a new med that would improve Daisy's quality of life, at no point did we have to show our ability to pay before treatment could start, at no point did we have to move hospitals because the treatment was not covered by a plan.  Yes there were times where I had to complain and escalate.  When Daisy needed some unproven and off-label treatments we would find ourselves having to justify their benefit to an exceptional circumstances panel.  But in the big picture these inconveniences outweighed the fact that my daughter had access to the best healthcare possible.  It was something I never took for granted and I know that I owe the twelve precious years that she was with us to the care and expertise of the NHS and it's staff.

Daisy survived twelve years because of an accident of birth.  She was born to two parents who had the means to put a roof over her head, close to excellent hospitals. She was safe.    I have always been acutely aware of how different things would have been if we had lived somewhere else when Daisy was born.

Would I have survived her delivery, would she have survived it?  How fortunate that we live where we live, it is because of that accident of birth that we had Daisy for twelve years and the last thing I ever had to worry about was her access to healthcare or her safety.

My schoolfriend Annegret has spent a lot of time in Greece over the past few years, volunteering on the beaches as boats came ashore laden with refugees.  The stories she shared humbled me, families with disabled children who had fled with whatever they could carry, pregnant women, young children, boys who had to run away from a stable home or risk being recruited into an army as a child soldier.

What happens in an earthquake or civil war or time of crisis if you have a disabled child, a child who needs regular access to medical support to stay alive?  Not once have I ever visited A&E and wondered if there would be enough drugs to treat Daisy or whether there would be doctors there or even if the building was at risk of air strikes.

This is the reality of life for many children.  Children who didn't score the jackpot in the lottery of life.

After Daisy died I was left with boxes and boxes of tubes and syringes and dressings that would just go to waste.The thought of that, when people in other parts of the world were crying out for these basic medical supplies, just broke my heart.

One thing I discovered early on is that once medication and supplies have been dispensed to your home then they cannot be reused for anyone else.  A simple change in catheter size can mean that three months supply of catheters in the old size have to be dumped.

I contacted Annegret and asked her if through her contacts she knew of a way I could get Daisy's  supplies to people on the ground who could put them to good use.  She was able to link me in to an incredible network of volunteers across the UK, in particular a group called High Wycombe Helping Others who sort and store sdonations on behalf of a number of groups and co-ordinate transport to where they are most needed.  At the moment it's Syria.  They have contacts on the ground in hospitals in Syria and Doctors who could make good use of the supplies I was able to donate.

I dropped off 5 boxes of Daisy's left over medical bits together with some baby essentials that I had managed to collect from friends and neighbours.  I knew after I saw the work that was taking place, sorting donations, boxing medical supplies, co-ordinating equipment donations, that I would not be able to stop at one visit.

The volunteers had a number of appeals out, not only were they preparing a huge medical container packing up incubators that had been replaced by upgraded versions, wheelchairs, crutches and boxes and boxes of medical stuff that was surplus to requirement and could not be reused.

They were also putting together baby boxes , like the ones given to new mothers in Finland which are filled with baby essentials and packed into a  box which can be used as a crib.

Just for good measure there was a whole room in the warehouse full of shoeboxes, wrapped in bright paper and filled with gifts for a boy or a girl.  So many ways for people to reach out and remind other mothers, fathers, children that they were not forgotten.

I started putting the word out locally and together with friends we collected toiletries, baby clothes, nappies.  The word got around my network of special needs parent friends and soon I had deliveries of syringes and catheters and dressings and other bits and bobs that could not be returned to pharmacies  and were surplus to requirement.  Our local cubs organised a donate and sort evening, packing and labelling boxes of even more useful donations.  Before long my house was full to the brim, as was my friend's house .  The next dilemma was transport, I had more donations than I anticipated and not enough friends with cars available to transport them.

As the donations kept coming in a lady knocked on my door, her car was full to the brim with blankets and items that I knew the team at High Wycombe could get to people who needed them most.  Explaining that I would love to take in her donations but I was limited by transport she then told me to hang fire, she could sort out a solution.  Later that day a huge van appeared on my driveway, already half full of donations, it had been funded by a local refugee charity.

So last week I took a van, full of donations sent with love from my local community to the team at High Wycombe to be sorted and shipped out to families and medics who urgently needed them.

It's a drop in the ocean but it is also a way of paying forward and thanking the NHS for caring for Daisy, if her stuff that is no longer needed can help one child feel safe and cared for then we have succeeded.

Thank you to everyone in the NHS who cared for Daisy, who never questioned whether it was worth treating her, who treated her as a little girl who needed the best quality of life however short that life was going to be.  I am so grateful for everything you did.

I keep busy because that is what I have always done and I need to fill the void left by Andy and Daisy but really putting the word out and getting essential donations to people who could get them to people who need them was really a simple thing.  And I get such comfort that maybe somewhere in another part of the world a person is benefitting from Daisy's donations.  I like to know that her legacy lives on.