How has lockdown impacted upon people living with brain injury?
The life of a brain-injured person relies massively on structure. So when a disruptor comes along, such as a pandemic, those routines can be very hard to replicate and support. Therefore trying to support people with brain injury throughout a pandemic, and maintain their emotional wellbeing, has been extremely challenging.
Isolation has gripped the whole world, but those with brain injury were isolated even before the pandemic. So trying to help them feel that they are included and supported is not always easy.
Stuart Brazington, Head of our Brain Injury team spoke to experts in case management, rehabilitation and the family experience of brain injury, about the experience of lockdown for brain-injured people. When speaking to them we found that, other than the challenges that brain-injured individuals and their families have seen, there are some positives to learn from the experience of the pandemic.
The impact on individuals
The regime that we all found ourselves in following the pandemic meant that we had to adhere to Government guidelines, restrictions and advice. For someone with a brain injury, understanding that is not easy.
Nicola Cale, a Case Manager at CCMS Ltd, explained how her clients experienced this change. “I think lockdown has affected those with a brain injury in a variety of ways. I think it has been a huge thing to comprehend, to assimilate, to try and understand; huge change in structures to routines. People have had to stay at home where they would normally go out and access services or meetup with others. I think it has had a very far-reaching effect on those with brain injury”.
“Lack of stimulation, and boredom, was something many of our clients really struggled with”, Elizabeth Nightingale – a Music Therapist with Chiltern Music Therapy – explained. “Especially those who suddenly had a disruption to their normal routines, or could no longer access meaningful activities”.
"I’ve got a real concern about some people who, in fact, have lost rehabilitation gains because they suddenly went way back, without being able to go out”
For Maggie Sargent, Co-Director at CCMS Ltd, the impact was profound, not just on her brain-injured clients’ immediate wellbeing, but also their future. “We had more critical incidents with clients, probably in that 12 months, than in most of my 30 year career in case management. Either because of the anxiety, because of the lockdown, because of restrictions, because of change. I’ve got a real concern about some people who, in fact, have lost rehabilitation gains because they suddenly went way back, without being able to go out”.
The impact on families
Trying to support a family member with a brain injury throughout that time has been extremely stressful. Rehab is always challenging, it’s difficult to go through a rehabilitation process and not struggle, but throw in the effects of COVID and the stresses and challenges that that brings has made life extra difficult for everybody.
“Lockdown has put a huge strain on families and carers of those with brain injury”, Nicola explains, “Because they’ve had to absorb roles that others were fulfilling, that maybe care teams were fulfilling, or treating professionals who’ve been unable to visit in person”.
Charlie Whiffin, an expert in family dynamics in relation to brain injury neuro-rehabilitation, explained what she saw happen to families. “The few resources that were available for families, pre-pandemic, were just not there. So lots of services within the hospital were removed and people were re-deployed. Lots of the out-patient services were just stopped. And as the world was told to stay at home that meant that the few services that are there for people just weren't available, and I can't imagine what that was like, having to deal with that double isolation”.
"...as the world was told to stay at home that meant that the few services that are there for people just weren't available, and I can't imagine what that was like, having to deal with that double isolation."
This doubling of isolation, likely already felt by the brain injured individual and their family before lockdown, was something that Elizabeth saw as well. “They not only had to carry the additional anxieties and worries of how their brain injured loved one would be affected, but also faced their own increased risks to things like care burnout through social isolation and reduced support access”.
“Even with all the reassurance, reassuring the families that it was OK to have support, there are a number of families that decided not to”, Maggie said about the efforts CCMS made to help families. “They found that very hard. They might have been able to do more, but if they were with someone that was being shielded… we had problems with family members really getting to the end of their tether”.
Nicola reflected on this silver lining, “It’s probably merged families and carers a lot together, because they’ve had to share the burden where the person’s choices have been very much reduced in terms of where they can go, who they can see safely, what they can do”.
It is this adaptation to a new paradigm that we touched on next with our contributors.
Adapting to the lockdown
Things had to change after the pandemic. Things had to move online, and the challenges that that presented to the therapists and people with a brain injury were immense. Something we have already covered in a previous article last year.
“During the first lockdown, particularly when meeting face-to-face was not possible, we worked hard as an organisation to provide some varied digital solutions to continue supporting our clients with brain injury”, Elizabeth explained of the radical change that the pandemic brought about for her music therapy work. “This included live online sessions but also pre-recorded videos that targeted specific rehab goals. And then, additionally, demonstration videos of ideas and approaches that family members or carers can support with in person”.
It’s one thing creating the solutions, and another thing applying them though, as Maggie found out. “If you’ve got someone profoundly physically disabled, who’s in the early stages of rehab, something like Zoom is quite difficult to come to grips with. We did find that we used a lot of technology – what we would have done without Zoom I don’t know – introducing psychology, doing assessments… We took on clients with all sorts of difficulties that we had to try and interpret and assess on Zoom.
It's very hard because someone with communication difficulties just finds it very hard to be able to get that same level of stimulation on a Zoom that they would in a personal interaction.”
"If you’ve got someone profoundly physically disabled, who’s in the early stages of rehab, something like Zoom is quite difficult to come to grips with."
People are perhaps more adaptable than they thought they were, and more resilient in the face of the pandemic storm than we thought. We’ve moved to a virtual world that didn’t exist for many people before the pandemic. There have been opportunities to connect with other people that you wouldn’t otherwise have connected with, and those opportunities have extended to those with a brain injury as well as the rest of the population. Finding new coping strategies has not always come easy, but for many they emerged and became part of daily life.
“I think the feedback that we got from a lot of our clients that did surprise us”, Elizabeth explains, “was how much they did enjoy having those weekly things: something to look forward to, something to build structure. Even working together to be flexible about finding creative solutions of how we could continue to work on some of our rehab goals together”.
“Quite often the anxiety around ‘they won’t cope with a long session on Zoom’, you know the anxiety around that is worse than the reality”, Nicola said of how brain injured people have adapted. “I wonder if the way people have had to adapt… I don’t think it’s been either or. I think some people have found it very isolating, the families have found it very isolating. However, I think on the other hand people have found that they are able to stay in contact via technology, or meet people who are further away geographically that they wouldn’t have had a chance to meet”.
"...people have found that they are able to stay in contact via technology, or meet people who are further away geographically that they wouldn’t have had a chance to meet.”
Charlie Whiffin sees this moment as an opportunity for change, for the industry and herself. “I think the important thing now is really to look at what we’ve done through the pandemic, and look at what models of service provision we want to keep moving forward and which ones we want to return to.
Personally, lockdown gave me an opportunity to think about support for families following brain injury and allowed me to create a special interest group: Anchor Point.
The first idea for this was explored with Headway Derby, just from conversations we were having about the huge gap in support for families. I’m very proud to say we now have 18 members of a steering committee, and we’re supported by a number of organisations including the Universities of both Derby and Plymouth, Headway Derby, Headway UK, UKABIF, HeadFirst, the Child Brain Injury Trust, and also of course RWK Goodman.
I think what’s key about this group is our ambition to make a real difference, and including in that things like signposting to services, identifying research priorities, connecting people, sharing stories, and really lobbying for change at a national level”.
If you work in brain injury and want find out more about Anchor Point, please visit their LinkedIn group here.
The pandemic brought with it a sense of isolation, something that we all had to find ways to try and deal with and cope as best we can. But imagine the world of a brain injured person, because that world was isolated before the pandemic. We all experienced to some degree, the world a brain injured person inhabited.
So there’s perhaps no better way to end than with a quote shared by Maggie Sargent, “One of the very interesting points that someone made to me at the beginning was, ‘welcome to my world’ when we got locked down.
I.e. someone with a brain injury, whose whole life had been derailed, suddenly saw that we’d all been derailed together”.
At RWK Goodman, we build a team around clients and their families after brain injury. As part of this aim we aim to raise more awareness amongst clinical professionals of the family experience of brain injury.
If you work with brain injured people in case management or in another capacity, make sure to find out more about the Ahead Together Conference being held in September. Featuring keynote speaker Lemn Sissay, as well as experts and family members with a range of experience of brain injury, the conference will focus on the issue of family identity.