We’ve never experienced anything quite like the past 16 months, have we? Our world has been turned upside down and we’ve all had to endure significant changes to our normal way of life. For me the biggest challenge was attempting to combine my working day with a slice of home schooling (a never ending cycle of making snacks and running late for Zoom meetings!). It was certainly challenging but with hindsight at times it was also quite enjoyable. I appreciate that many other parents may disagree!
The pandemic has affected us all but we should never make the mistake of thinking that our own experiences have been the same or even similar to those of others. I’ve heard it said during the pandemic that ‘we’re all in a storm at sea but in drastically different ships’. I think this is true, not least for individuals who may struggle to cope with change.
I’m fortunate in my role as a Professional Deputy to have the opportunity to work with many survivors of brain injury, their families and wider support networks. Over the past year or so, I’ve witnessed some of these individuals and their support networks endure challenges which would have been beyond comprehension before the start of the pandemic.
I know many families have had to cope with either zero or limited external support in order to reduce potential exposure to the virus. For those who continued receiving external care, there has been huge disruption to care teams caused by the ripple effect of the pandemic. This has undoubtedly placed an inordinate strain on both those providing and receiving care.
For all of us, not least for many brain injury survivors, it’s been incredibly difficult to accept and understand the drastic changes to our usual routines. Swathes of individuals have been unable to leave their homes for months on end, I can’t begin to imagine how difficult this must be. I’m also aware that many therapists have been unable to work as normal which has caused rehabilitation programmes to either be put on hold or significantly reduced.
Many of my clients were in the process of having building works carried out to make their properties more suitable for their needs. Again, such projects have been affected by lockdowns and delays with normal supply chains.
Some of my clients have also endured delays or cancellations for much needed respite breaks or holidays.
The list goes on and, whilst stating the obvious, it’s clearly been an extremely difficult time. At the time of writing, we all hope that the impact of the vaccine rollout means that, in the UK at least, we may soon be able to get back to some form of normality.
As we enter the next stage in this process, it’s more important than ever for us to stop and listen to the survivors of brain injury who experience huge challenges every day, both in and outside of the pandemic. There’s perhaps never been a more apt time for Headway Brain Injury Week (17th - 23rd May) which aims to give a voice to brain injury survivors and their families.
In my role as a deputy, I’m aware that beyond listening, there are many other things that we can (and must) do to best support brain injury survivors. Some are obvious but are worth emphasising:
- Always start with a presumption that a person has capacity to make each individual decision for themselves
- Seek to promote and empower autonomy wherever possible
- Be patient and supportive
- Never jump to conclusions
- Always recognise everyone’s individuality
- Be kind (always!)
- When appropriate use (or in my case attempt to use) good humour
As with many things in life, we can’t be exactly sure about what may happen next. I suspect many brain injury survivors will appreciate better than most that the journey ahead may be full of unexpected challenges.
One thing that will be going ahead as normal however is ‘Hats for Headway’ on 21st May. An opportunity to not just wear silly headwear (pretty much any hat belonging to my father!) but to raise much needed funds for Headway at such a crucial time. I’ve visited many Headway centres and observed first-hand the wonderful work that they do in providing purpose, enjoyment and a feeling of belonging. The funds raised will help ensure that the vital support provided by Headway can continue and that new (post lockdown!) initiatives can be launched.
With all of this in mind, I hope you will join me and my colleagues on 21st May as we doff our ‘Hats for Headway’ caps in recognition of brain injury survivors and their support networks.