When the world suddenly went a bit mad back in early March and we were all confined to our homes, the future looked bleak and scary.
As we gradually move towards a ‘new normal’ and restrictions ease, I’ve been contemplating the lessons learnt and how simple changes could have a long-lasting positive impact on families like ours- those living with profoundly disabled and medically complex family members.
Greater flexibility around appointments
Previously, hospital appointments for Hugh have taken at least half a day. He either misses a morning or an afternoon of school, and often it involves me arranging someone else to pick up or drop off my other son. I have to drive into the city centre, find an accessible parking spot reasonably close to the hospital and hope that someone doesn’t ignore the massive ‘please leave space for a wheelchair’ sign and park directly behind me.
Frequently though, on return to the car, I’m forced to leave Hugh on the pavement while I manoeuvre out of a parking space and then load his wheelchair into the van in the middle of the road!
The hospital causes Hugh immense stress and even with ear defenders and toys that help calm him, he ends up anxious and upset fairly quickly. Sometimes, kind nurses take pity on us and move us to a side room or a quiet corridor, other times I’m left hot and bothered trying to distract him and keep him calm.
If the appointment is running to time this might *only* be for 20 minutes, but there are other departments where we’ve waited hours and I’ve ended up leaving to walk around the block and asked to be telephoned when our turn is near. I refuse all but the absolutely necessary examinations now – too many medical interventions over the years have traumatised Hugh to the extent that he mistrusts medical professionals.
Since the start of the pandemic though, Hugh has had many appointments carried out over the phone or via video call. This takes much less time and is far less stressful for both Hugh and I. Of course, some appointments can’t possibly be carried out this way – he’ll need a spinal x-ray soon and will definitely need to go to hospital for that. Yet, for the relatively routine appointments, surely video calls or telephone calls would save a lot of time, money (parking and fuel costs) and frustration.
Flexible education placements
Hugh has thrived in lockdown. He has been much healthier, has slept better and his seizure frequency has decreased significantly. From speaking to other families, I know that we are not alone in this. Partly, I assume, it is due to the dramatic reduction in bugs and germs he is coming into contact with.
However, I think it is also due to the fact that he is getting enough sleep. Hugh’s sleep pattern has always been erratic and after being awake during the night, he is often ready to go back to sleep just as it is time to get up for school. This means, while Hugh falls asleep, we are giving him medications, dressing him, loading him into a wheelchair and putting him on to the bus for school. Often, he’ll wake to find himself in a standing frame or on the floor of the classroom about to start physiotherapy.
During lockdown, he has chosen to go back to sleep – he’ll shout at me if I try to get him up earlier than he is ready – and in turn I have been able to allow him that time. When he wakes later, he is happier, more engaged and more ready to learn.
For children like Hugh, it is not simply a matter of going to bed earlier to ensure he gets enough sleep. Even with medication, his sleep is unpredictable. The knock-on effect of being chronically tired is an increased susceptibility to illness and an increase in seizures. Hugh’s school attendance is shocking as a result. He rarely manages two full weeks at school without getting a cough or a cold and is often ‘seizurey’ or out of sorts or just plain exhausted.
There is an expectation for all children to attend school 5 full days a week. Perhaps a more flexible approach would work better for some children, with shorter days or less days a week. Hugh benefits greatly from going to school and home-schooling isn’t what I want for him long term, but perhaps thinking creatively about the hours he does would ensure he gets more from the time he is there.
Looking out for others
When lockdown began, there was a definite feeling of ‘we’re all in this together’ and I think, for the most part, people looked out for each other. Those who could get out to shops, were acutely aware of those who couldn’t – the over 70’s and those shielding. People reached out and offered help to those who needed it. Facebook support groups sprang up, with communities coming together to help vulnerable people in their area. For all the fear and worry around the pandemic, it was comforting and reassuring to see how people could pull together and support each other.
The outpouring of love for the NHS staff, the appreciation for the delivery drivers, the shop workers and the bin collectors – a realisation that these are the people we need to keep our country running.
Wouldn’t it be great to see that continue – that support for our fellow neighbours, that appreciation for the people who continued to work each day when much of the country stayed at home? It shouldn’t take a pandemic for us to appreciate others, it shouldn’t take a country in lockdown for us to realise that our friends and neighbours need our help.
For some people the end of lockdown doesn’t stop the isolation and fear. They still need your love and support. Give them a call occasionally, ask if they need anything from the shops, check that they’re not feeling lonely.
These relatively simple and easy to implement changes could really help support families who juggle the challenges of complex medical needs. So now, as restrictions begin to ease, instead of going back to the way things were, wouldn’t it be great to move forward and use what we have learnt in these unusual times.