Protecting the herd

I just can't help thinking, if Daisy was still alive, what would it be like? How would we have coped - she would have been one of the so-called "shielded ones", those who received a letter at the beginning of lockdown  telling them to stay at home for twelve weeks and not venture outside.

Picture of Daisy in her wheelchair in the back of her wheelchair van. She is smiling and happy , on her way to school

Her school is closed. She barely went to school in her final year anyway, there were so many problems trying to get nurses able to be with her in school and I was concerned for her safety.  So I guess I would have been attempting to home school her.  She would have been missing her friends, missing walks in the park, her regular trips to the local shops which she loved so much.

Would our night nurses have still been coming in? They looked after other children in other houses...would it be safe for them to come to our house, would they have PPE to protect Daisy from cross-infection?

And if we didn't have nurses, how the hell would I have coped, 24 hour waking shifts, 7 days a week....

I would have been torn between the chance to actually have some sleep, weighing it against the risk of having people come to the house to care for Daisy.

I remember being so bone-tired, living in fear of making a fatal error on the nights we didn't have nurses.  Fighting so hard in the year before Daisy died to keep her nursing care package (Daisy couldn't be left with anyone other than IV trained nurses).  Slipping out of the house at dawn to run in order to keep my head in a good space, returning just before our nurse finished her night shift (even though I was technically not allowed to leave the house when a nurse was with Daisy).

How would I have coped during lockdown.  How would I have coped shielding this vulnerable little girl with her dodgy airway and immunosuppression from this awful virus?  How would I have kept myself sane and rested? How would I have had time for my other children?

 I just don't know how we would have done it, I think about it a lot and I veer from utter sadness that I don't have Daisy with me to a guilty relief that I don't have to face this awful situation. I know there would have been lots of drives out so that she could have a change of scenery and some mental stimulation, I also know there would have been a few smashed ipads and near misses.  I'd have leaned heavily and unfairly on my other children to help, I would have been hallucinating with tiredness.  And that's before we even consider what would happen if I was running low on syringes or one of the other essentials for doing Daisy's IVs and TPN let alone her catheters.  I made so many late night visits to A&E or the children's ward when stocks were running low at home.  What if her TPN didn't arrive or the multiple drugs that she needed each week?

But that's not my reality any more.  Bittersweet as it is.  I'm torn between missing my girl but absolute relief that I am not having to care for her during this time...

But it's still the reality for so many of my friends. I keep thinking of are they managing?

2.2 million people were told to shield at the beginning of the UK lockdown.

Some people knew they would get the call to shield, some were surprised to receive it.  But within my friendship group they have stayed at home, stayed safe, occasionally venturing out late at night when no-one else is around.  They have put their heads down and got on with it, knowing that the risks to themselves or the person they cared for were just too great even if it meant sacrificing precious mental health breaks, exercise, sleep even.....

Years of caring for a sick child or living with a complex disease means my friends know the routine, you do whatever it takes to stay safe and well and out of with medical teams, using common sense and weighing up the impact of any decision they make and the potential impact it may have.

The shielded were the forgotten.  The people who strictly adhered to lockdown when so many others were being flexible in their interpretation.

People like the Government Advisor Dominic Cummings. Who drove across the country to visit his elderly parents when he had suspected Covid19.  Who went for a drive to a nearby beauty spot while there with his wife and small child in order to "test his eyesight".....who flouted the rules that the government he advises was seeking to enforce.

What an insult to the 2.2 million shielded who were trying to keep safe. The rumblings of anger and discontent were loud.

And now the shielded have been told they can leave their homes, meet family (from a social distance).

But the response was not excitement.  For this population it really is a matter of life or death and the decision to change the shielding guidelines felt as though it hadn't been thought through..... many of my friends turned to their medical teams for guidance, they were just in the dark.

The shielded rely on trusted teams to advise them on what is appropriate for their medical needs.  Trusted teams and common sense borne out of experience....

Whatever the intention , the fanfare of government spin that accompanied it does not match with the reality of the announcement.  People shielding, especially those caring for children with complex needs were already using their own common sense.  Going for a drive just for a change of scenery, a late evening walk in quiet streets, getting out to parks early in the morning before there are too many people around or just choosing to wait until they are reassured by their medical teams that it's safe to go out again.

People who have conditions that put them in danger of dying from or permanently disabled by Covid19 are not going to take risks with their lives.  They look for the science not the spin.

What might have appeared a good news story for our government doesn't rest comfortably among people who are were diligently keeping themselves safe while watching people flout the lockdown guidelines.

And so now the lockdown rules are easing....places are reopening.  All this despite the daily death toll from this horrible, unpredictable virus still being in three figures.

Apart from my reasonably controlled asthma, we're not a high risk household anymore.  But that doesn't mean we are going to have big meet ups or make long journeys to exercise.  I want to hear scientists unanimously tell me that it's safe for all, not just for my low risk family. I want to hear that there are no more deaths from Covid, or that there is a vaccine available to protect people.  I want to protect the herd not put people at risk.

We are staying at home as much as possible, we're not using public transport, we're socially distancing, and when we go into shops we wear masks and disposable gloves.  Much as I'm delighted for the hospitality and entertainment industries that places are starting to re-open , I'm personally going to avoid crowded indoor spaces until I feel it's safe to do so.

I come from the world of the shielded and I am privileged to be able to have some more freedom during lockdown but I will always stand by the tenet that a society should be judged on how it treats its most vulnerable.

Wear a mask , wash your hands....think of the people who are not able to benefit from our gradual lockdown easing...

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