Lockdown part three: Changing Covid rules with a rant on Twitter.

Max’s admittance date into the transplant ward at the Royal Victoria Infirmary in Newcastle was the 6th January 2021.  Max was having a few issues regarding an infection to his central line for a good month prior which was being managed with medication and observed quite regularly. We all hoped that they wouldn’t need to replace it, as time was running out to do that, the closer we got to his admission date. 

During this time, the UK was starting to see the numbers of Covid cases rise quite rapidly, which was being blamed on mutations of the virus. It was starting to become clear that there was going to be another lockdown on the horizon, so our worries had started to creep in that the transplant was going to have to be cancelled.

We also worried that the rules about visiting Max during the challenging few weeks to come could change, just after we had organised a plan of action in terms of visiting and staying over. We have just dealt with all the stress of organising with my work to isolate for the two weeks prior to admission date (during the busiest time of the year for my employers) and being away from work for the foreseeable future. 

What a start to the year...

Max's infections were not improving, so eventually the 11th hour decision was made to bring him into the hospital and prepare him for theatre to take out his central line, and then replace it 48 hours later. We found this out from a phone call from our consultant at around 4pm on the 30th December (HAPPY NEW YEAR TO US!) so we had a quick half an hour to pack Max's life away and drive straight to what was to be his home for the foreseeable future. We knew, with how close our original admission date was, there was little chance of getting him home beforehand - even if we could, it would be pointless. 

On January 4th, Boris Johnson once again appeared on our screens in his Downing Street home to once again tell us the news we all expected, once again we must stay at home, protect the NHS & SAVE LIVES.  

Now the panic, REALLLLLLY set in. We were quickly informed that the transplant and admission on the 6th was still going ahead as planned which was a huge relief, pheeew! BUT…The rules were changing regarding visiting.  

The new rules

Prior to lockdown, the rules were that one parent could stay with Max, and the other parent could come visit for one hour a day and you could spend that time together as a family in his room isolated from other patients.

But the new rules during lockdown, which were initially implemented on our arrival, were that when the parent who is staying at home comes to visit for the hour, the other parent must leave the room. This would mean that we would no longer get to spend that one hour a day as a family. Instead, myself and Rachel would be like passing ships in the night as we pass through the airlock at the start of the hour and at the end. 

This was my toughest point, mentally. Was mine and Rachel’s relationship going to suffer? Will Max suffer not having us both there by his side during his tough days? What if he takes a turn for the worst? Can we be there together for day 0?  

This is the point where I decided that this wasn’t right. 

No poorly child going through something so traumatic as chemotherapy should be separated from their parents during such treatment. So I decided to do something about it! Where did that begin, I hear you say? A good old Twitter rant. 

I posted a HUGE rant on Twitter, well and truly let rip of my feelings regarding the rules, which had been pushed onto the hospital trust from the government, and how unfair it is for any child going through something so horrendous without having the support of both parents.

I wasn’t expecting it to come to much, if I am being completely honest, it just felt nice to vent. But I was completely wrong, the support I had was hugely overwhelming. My rant reached an audience of 31,307 with over 2,000 engagements, I tagged a few local journalists in one of the tweets, including the MP for my constituency, and this is where it snowballed from. 

I was contacted by a local newspaper reporter I had worked with before, who wanted to run a story on the rules, so I agreed and that was put out in their newspaper and their socials. I was also contacted by a producer from BBC Radio Newcastle who asked me to come on their breakfast show which I also agreed, and they ran an article on the BBC news homepage, which is huge. I even received requests to go on SKY news, but I do not quite have the face for television, so I gave that one a miss… thank me later. Once the national newspapers saw the story on the BBC, they all put it in print - to my knowledge the story was in The Sun, The Mirror, The Star, The METRO and The Daily Mail. 

Eventually my MP got in touch with me, but was no help at all due to the "official" ways they have to do things. She did write to the hospital trust who gave her in writing the official statement from them which had already been given to me from the BBC and the Chronicle a week prior… 

A huge victory

Things went quiet for around half a week, and then, unexpectedly, the matron for the ward we were in came in to chat to me about the articles. If I'm being completely honest, I was expecting a grilling but instead she gave me the good news - that all my work in being that voice for the parents going through similar circumstances had worked! The rules had been lifted from that day and we were able to spend that hour as a family. I am not saying that the pressure I put on was the reason for the change, I hope that is was more common sense really but I like to think that I helped make that change in some way. 

When Rachel came to visit on that day it felt so special, like a huge victory.  Sitting on the floor with Max running between us laughing to himself, was so special - and something which should have never been restricted. I repeatedly made sure to tell everyone that this had nothing to do with the NHS because our care has been nothing but exceptional and we are truly lucky to have them from the cleaners to the doctors, they all play their part in our care. 

Its important to be loud when you feel your child is going to suffer.

A child should not be separated at all from their parents, especially when they’re undergoing conditioning for a lifesaving transplant. Fortunately mine and Rachel’s relationship is strong enough to get through anything and we were prepared not to see each other for around three months, but beneath the surface the only person that would suffer is the child, Max. 

 

 

 

Hi there, I'm Connor Gardner, dad to Max, sharing our family's story from a dad's perspective.

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AA voices is a collection of blogs in which people affected by aplastic anaemia share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Comms and Fundraising Manager, by emailing [email protected].

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