COVID-19 has presented many challenges for brain injury patients, with the cancellation of groups and appointments meaning a pause in their rehabilitation. Here, Paul shares his story of how his experience of the past few months has left him dreading the impending ‘second wave’.
I sustained a brain injury just over 18 months ago now. It was in circumstances many people describe as a ‘freak injury’ but I really hate that description, as I’m constantly well aware I probably now seem like a freak, thanks to my condition. I was decorating at home, something I never do, but we were trying to save some money so I thought I’d give it a go. I was standing on some ladders which were a bit wobbly, but they seemed fine for a DIY novice such as myself.
The next thing I knew, I had woken up in hospital, my partner at my bedside looking distraught. Apparently the ladders had tipped over and I was lying on the floor when my partner got home, unconscious. Seemingly I had been there for some time, which had worsened the impact of the fall itself.
I was told I had suffered a brain injury, which went on to manifest itself in a number of ways. I forget things all the time. I have a much shorter temper than I used to. I dribble sometimes, which means I now never eat or drink outside my own home. It has changed my life in many ways, none of them good.
But what can you do other than get on with it? I resolved to live my life the best I could and just get on with things, although the early days were pretty tough.
I was angry with my partner – why couldn’t we have just paid for a decorator? Not that it was his fault at all, but I lashed out at everyone with my vicious tongue. But being the amazing person he is, he supported me, comforted me, and proved to be my saviour and lifeline.
He found local groups for me to attend. He found forums online for me to visit. He connected with other people with brain injuries, who could understand my situation much better than he could, which I stress was not for the want of trying.
Things began to look up. I went to a fantastic group run by volunteers who were such a comfort. There weren’t many people there but everyone who attended was so kind, sympathetic (not in a patronising way) and understood.
They got it, and that’s all I wanted. They knew I didn’t want to be this short-tempered, forgetful person, but tolerated me for who I was. For the first time since the day I woke up in hospital and hated the world, I was feeling a lot better.
I remember watching the news in maybe January this year and watching what was happening in Wuhan in China. This dreadful COVID-19 was spreading like wildfire, people were having to stay at home for weeks on end in isolation, it was shocking to see. ‘I wouldn’t be able to cope with that,’ I thought. But barely three months later, this became my reality.
Being stuck at home all day, every day, was torturous. My mental health began to suffer badly and I became very angry and resentful at the same four walls being my everyday surroundings. The group I had found, where at long last I felt in the company of people who understood me, was cancelled until further notice.
That was especially tough. They did try to organise something though Zoom at one point, but I hated these videoconferences – I could hear my partner on them most days doing work, and the noise echoed around my head, ringing in my ears and making my whole brain feeling as if it was going to explode. I chose to end contact with people and resolved to sit at home, in the very house which had been so important to decorate it had ruined my life. I just hated myself and everything around me.
With the restrictions being lifted to some degree, I have now begun to go out of the house a little. I have been going for walks. I got my hair cut. I want to rebuild the confidence I have lost over the past few months so I can attend my group again once it resumes.
I know that probably sounds absurd as the people there were so lovely, but I know I’m not the person I was even those few months ago. I’m very anxious and highly self-conscious – they feel like traits which have come suddenly but have burrowed deep. But every day I’ll keep on going out, even just round the streets where I live for a walk, and trying to overcome the latest challenges to be sent my way.
However, permanently in the back of my mind is the thought of another lockdown once the second wave arrives. That adds to my anxiety every single day. What will I do if we are again told we can’t leave the house? How will I cope? I’m not sure I will.
I’m not really sure how I got through lockdown the last time, where days and nights merged into one and any concept of getting dressed went out of the window. I have an appointment at the hospital in a few weeks from now, but who knows what will happen between now and then.
The rate of infection is again rising every single day, and I fear we are heading for another full lockdown. The thought of that is too much to take sometimes, but the huge worry is if that was to become reality.”
Neurotechnology – life-transforming or an expensive white elephant?
Rachel Charles discusses the power and potential of technology in neurorehabilitation
We are at an exciting time in neurorehabilitation, where we are discovering more and more about our brain and nervous system and how we can adapt to life-changing injuries by harnessing the potential of technology to push the boundaries of what is currently possible.
Our previously unseen electrical and brain activity can be enhanced to enable us to visualise our emotions, communicate when we can’t speak, lift limbs that we have difficulty moving. We can be transported to far off, fantastical lands from the comfort our armchairs by putting on a VR headset, and exercise on a treadmill without being able to walk.
This is not just the stuff of Hollywood movies and fantasy novels, but real life that can be seen, touched and used in rehabilitation centres across the world right now.
So, how do we ensure that this technology is accessible, appropriate and enables the people using it to achieve their goals and aspirations? How we do prevent exoskeletons from gathering dust in cupboards or the corners of therapy rooms? How do we justify and prove that these technologies make a difference and are worth the investment?
Firstly, we need to keep in mind who the technology is for. We are adaptable, complex systems that require varied, intensive, targeted opportunities to refine and improve our abilities. We know about “practice makes perfect” – practice needs to be the right amount, in the right place, at the right time – for a purpose and have meaning, not necessarily helping us achieve perfection. One size definitely does not fit all.
Secondly, we need to coproduce, collaborate, and cooperate to share knowledge and skills – it is essential the end user is part of the team. It is totally possible to repurpose and adapt current technologies that are already in use such as robots and VR games for the rehabilitation market. What works in one setting does not necessarily work in others. It is a great opportunity to design and manufacture technology that is fit for purpose, which can be updated and upgraded and recycled.
Thirdly, we will still need therapists and case managers. (You probably think that this is because I am one…”so you would say this wouldn’t you”). Technology is not a magic bullet and will not replace therapists or therapy or the need for case management. It will enable more people to participate in high dose, high quality rehabilitation that is commissioned by case managers and structured by therapists as part of their individual rehabilitation programme.
Therapists need to be open-minded and given access to systems and training that enable them to use their clinical reasoning to consider technology as a viable option as part of their treatment plan. Case managers need to keep up to date with innovations and technologies by networking and sharing information so that our clients have the possibility of being able to access neurotechnology now and in the future when this is appropriate.
Lastly, technology has the potential to transform the rehabilitation experience of people affected by life changing injuries and our understanding of the brain and nervous system. By trialling available technologies with people who may benefit from them and being able to demonstrate tangible changes in function – enabling people to thrive, not just survive – we have the potential to create a very different future for all of us.
- Rachel Charles is a case manager at Social Return Case Management.
Person-centred dementia care during the COVID-19 pandemic
The COVID-19 pandemic has presented unique challenges for people living with dementia, as well as for those who support them. Tracey Carter, senior quality manager (dementia care) at Exemplar Health Care, shares how colleagues across the company have found innovative ways to support people living with dementia to stay safe and well, and uphold the principles of person-centred care
It’s vital that health and social care workers, other professionals and family carers continue to take a person-centred approach to care during the pandemic, to support people with dementia to maintain, and enhance, their health and wellbeing.
Putting people first
There are currently around 850,000 people living with dementia in the UK, each with their own unique personalities and life stories. Everyone will experience the pandemic and its effects differently, which is why it’s important to maintain a person-centred approach.
At the start of lockdown, care homes were cut off and isolated from the wider community which posed a significant shift for service users and care workers.
In response, we quickly adapted many of our ways of working, systems and processes to adhere to national guidelines and safety policies.
However, when it comes to our approach to care at this time, there’s not a ‘one size fits all’ approach.
We adapted and adopted a creative approach to ensure that the same quality of person-centred care was achieved with lockdown restrictions in place.
To achieve this, Exemplar Health Care divided its approach into four key areas of need.
The needs of people living with dementia
One of the most important things for us was to identify how each individual communicates pain and discomfort, so we could monitor them for signs of Coronavirus (COVID-19).
Some older people living with dementia may have different symptoms or are unable to communicate when they are experiencing one of the common symptoms of the virus.
We provided training to support our care teams to look for signs that might indicate that people have the symptoms of Coronavirus (COVID-19), such as changes to their personality or everyday behaviours.
We also assessed potential communication challenges, like the use of full PPE which could frighten or upset people living with dementia, and continue to work with individuals and their loved ones to ease any stress. Some examples are wearing a name badge and photo on clothing, using drawings or written words to communicate and playing music to aid relaxation.
Combatting loneliness has been a huge priority during the pandemic. At Exemplar Health Care, we’ve kept the same colleagues working on our units so that people are supported by a consistent team who know them, which is fundamental to person-centred care.
Our teams continue to be creative in supporting people to take part in meaningful activities and engagement in our homes – including doing everyday living tasks such as laundry and cleaning to give people a sense of familiarity, routine and purpose.
Where possible, we’ve brought the outdoors inside when people are not able to go out. For example, our activities teams have supported flower arranging or plant potting inside, as well as creating indoor beaches, to support people to maintain their hobbies and interests.
We’ve also made good use of technology during times of lockdown. At the beginning of the pandemic, we purchased iPads for each of our homes which have enabled residents to stay in touch with their loved ones, as well as provided opportunities for meaningful activity, such as virtual tours of tourist attractions or playing music.
The spaces in our homes have always been personalised to the people we support, with decorations, photos and posters tailored to their interests – this became even more important during the pandemic, as maintaining interests became key to combat loneliness and frustration.
Family/loved ones’ needs
Families have found it incredibly difficult not being able to physically see and be with loved ones during the lockdown period.
Throughout the pandemic, we’ve supported people to keep in touch via video calls, using systems such as Skype and Zoom.
When visiting was permitted, we implemented individual risk assessments to support safe visits, outlining what support individuals might need during visits. We also made all the efforts to ensure that visits happened when people wanted them.
Several of our homes have assigned a new Family Liaison role, whose responsibility is to keep in touch with family and friends, and facilitate communication between service users and their loved ones.
Multidisciplinary team needs
Teams across the company, and externally, have utilised tools such as Skype and FaceTime to carry out assessments and discuss people’s needs to ensure that we can continue to provide high quality care during the pandemic.
Where safe and appropriate, we’ve allocated in-house specialists, such as quality managers and trainers, to specific homes so they can support colleagues without travelling between homes.
We have continued to work with external teams, such as community nurses and palliative teams, throughout the pandemic to maintain standards of care.
We’re also working as closely and pre-emptively as we can with local GPs and other community-based services who are no longer able to make face-to-face visits to homes, to see and assess residents virtually.
Support for colleagues
Care work is extremely rewarding, but can be inherently stressful. The pandemic presented unique challenges to colleagues, taking a toll on everyone’s wellbeing.
Knowing that colleagues who are well, happy and engaged are more likely to provide quality care, Exemplar Health Care implemented a ‘We Care’ package to support colleague wellbeing.
We started working with a new Employee Assistance Programme partner to provide colleagues with 24/7 support from a team of trained counsellors, as well as growing our team of in-house Mental Health First Aiders.
Our specialist dementia quality manager has continued to work with each home to provide training and identify the best ways to support residents living with dementia during the pandemic, so that we can continue to uphold the principles of person-centred care.
This has been supported by short online videos and an enhanced eLearning schedule, so that we can continue to ensure that colleagues feel supported, and have the right skills and knowledge to maintain standards of care, despite the challenges of lockdown.
About Exemplar Health Care
Exemplar Health Care is a provider of specialist nursing care for adults living with complex and high acuity needs.
Our community-based homes provide person-centred care and rehabilitation that focuses on maximising independence, building everyday living skills and empowering people to live as fulfilled lives as possible.
We have over 30 homes across Yorkshire, the Midlands, North East and North West.
About Tracey Carter
Tracey Carter is a senior quality manager (dementia care) at Exemplar Health Care. She’s responsible for ensuring that Exemplar Health Care’s 32 care homes have dementia-friendly living environments and that colleagues receive the right training to be able to support people living with dementia in a person-centred way.
‘Don’t be alone, don’t be too proud to reach out for help’
After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK
I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that.
No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can.
My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.
I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt.
My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic.
After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support.
If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process.
In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support.
Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.
In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress.
While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me.
I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those.
For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey.
The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did.
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