Lorraine Currie has watched her daughter recover from a serious brain injury and go on to exceed her expectations. She tells NR Times what it’s been like to see her daughter’s slow recovery.
When she was just 17 years old, Grace was hit by a car as she crossed a small village road after finishing college.
She suffered a severe head injury and was resuscitated twice at scene. After being taken to Shrewsbury hospital, her only hope was to be transferred to Stoke hospital, which is a regional trauma centre, who accepted Grace even though it didn’t have a bed.
She went into intensive care for six weeks, from September 2010 to November, then she was stepped down to special care until December. Grace’s parents, who are both social workers, drove the two-hour round trip to see their daughter every day. Then, Grace was moved to a local rehab hospital, where she stayed for 12 months.
“My experience when she was in hospital was a feeling of being disempowered – when they’re in that intensive nursing situation there’s very little you can do,” says Grace’s mum, Lorraine.
Despite feeling powerless, her parents quickly devised plans to help support her cognition, thinking and planning.
“We set out to do whatever we could do in the beginning, when we were in intensive care and the rehab hospital,” Lorraine says. “Massaging her hands and feet, making up games, throwing balls to get her to use both hands, bringing in bubbles, helium balloons – that’s how we saw she followed things with her eyes – building bricks, matching colours and doing jigsaws.”
When Grace was discharged, she had to be fully holstered in a hospital bed in the dining room. She wasn’t mobile or continent, and progress was slow. She had physiotherapy for two years, but apart from that, Grace had a huge drop-off in care when she got home from hospital.
“When Grace was discharged from hospital, she didn’t have any consultant follow-up or rehab follow-up,” says Lorraine.
“She was on various NHS waiting lists, but the process was so slow. We didn’t want to do her personal care – we were her mum and dad, and that wasn’t the right relationship for us,” Lorraine says.
A family friend who worked as a carer in a brain injury unit sold her house and moved in with the family, becoming Grace’s full-time personal care assistant. Eventually, Grace went back into her old bedroom, and after two years, her full-time assistant moved out and rented locally, as she wasn’t needed as intensively anymore.
Grace lost her ability to read after the accident, and couldn’t recognise letters, despite being quite academic before.
“We had to develop things ourselves, like make memory cards and recipe cards and weekly planners; all visual because she has a poor memory and can’t use written aids.”
Lorraine says there’s a lot that families in the same situation can do to add to the work of professionals.
“You can do some very straightforward things. I encourage anyone in this position to not leave it all to professionals because every minute you’re spending with that person you’re improving their cognitional and wellbeing,” Lorraine says.
For example, Lorraine took a piece of laminated paper and wrote ‘shower’ on one side and ‘bath’ on the other, which can be turned around every day.
“We’re battling on a number of fronts, including poor memory, and her thinking, problem-solving and executive skills are slower than they were. But Grace is getting better at using Alexa, which has been a life-saver,” Lorraine says.
And then, two years ago, at the age of 25, Grace moved into her own home five miles away in the village next to her parents, with four staff personal care assistants. Lorraine made her daughter aids to help her live independently, including a ‘what if’ picture book, demonstrating what to do in minor household emergencies, such as spilled water on the floor.
“It was incredibly hard because everything worked well here and she was happy here. If anything, we had to force the issue and encourage her,” Lorraine says.
“We’re getting older and we want Grace to have the resilience to live life. She was an independent young woman so it felt like the right thing to do. Now it’s paying dividends; she can play her music loud all the time and she likes being in her own place.”
Grace has since gone on to do what her parents could never have imagined.
Before her brain injury, Grace was planning to go to university to study psychology.
“After her accident, that wasn’t possible, and it took her a while to come to terms with that,” Lorraine says. “So she looked at what she could do that didn’t involve reading.”
Grace had been supported by the local learning disability college, who came to the house to do basic literacy and numeracy with Grace. Then, she developed an interest in art.
“After a while, Grace got bored with that, because she didn’t see anyone else, so she went to college, then she felt like she reached the limit there, so we pushed her to go to ordinary college to do photography.”
Grace was then accepted into Chester University and transferred onto its fine art course. She did her third year spread over three years, and just recently graduated with a first-class degree.
“It’s incredible for someone who has to record things,” Lorraine says.
However, it took three years to get Grace’s support staff to understand that the notes they took for her in lectures were pointless, Lorraine says. She argues that there’s a need for support staff to think outside the box to cater to people’s needs.
Lorraine says not only should more people with brain injuries be encouraged to go on to higher education, but they should also receive support from staff who are trained specifically in brain injury.
“Why shouldn’t you get to carry on education? Grace had support staff funding by her disabled student allowance, but none of them had experience in brain injury,” she says.
“There’s a huge gap in this country around brain injury and academic aspiration. I’d like people to take heart from what Grace has done, she’s profoundly disabled, but we don’t work with her disabilities, we work with her abilities.
“Never in a million years could we have seen this when the accident happened. She’s worked ten times harder than anyone else to get there.”
Grace is now building her own website and hoping to submit her artwork to some galleries and build her success as an artist.
“Grace has a lot to say visually that she can’t say verbally,” Lorraine says.
Her work is unique to Grace, Lorraine says, because she lost her lower visual field.
“If she paints a huge person, their legs peter out because she doesn’t see that bit,” she says.
Grace’s art helps her get through difficult days, Lorraine says.
“If she’s feeling angry or she’s not having a good day, she loves throwing paint. She’s got shoes covered in paint splats – we converted the double garage into a studio, now it looks like someone’s gone in there and thrown paint everywhere.
The couples therapist who rehabilitates love after brain injury
Trained couple’s therapist and neuropsychologist Giles Yeates helps support couples and families and their connection and intimacy after a brain injury. He talks to NR Times about how couples can resume their sex lives after brain injury.
“It’s about reconnecting that sense of closeness and connection, I’m trying to rehabilitate love,” he says.
“After a brain injury, the focus is on the injury and regaining independence, rather than interdependence, but many families ask for this.
“When people talk about personality changes, saying the person is different and the connection feels damaged or wrong, couples therapy is way to help them find their way back to each other.”
But it isn’t the standard to offer couples therapy in the care pathway following a brain injury, Yeates says.
Many couple’s therapists who don’t work with neurological conditions don’t have the skills or understanding of the impact of a brain injury on a couple’s relationship and the heartbreak, he says. This is why Yeates focuses on a specific type of therapy that prioritises emotion.
“Emotionally focused couple’s therapy ticks the boxes straight away. It works on slowing people down. It’s about what happens in the sessions between couples.
“It’s neuro-friendly from the beginning, getting people out of their heads, to notice and communicate their emotional needs of each other that doesn’t engender further conflict, in a way that supports connection. It’s not a panacea, but it’s given as an option for couples to try,” he says.
Research, Yeates says, shows that the mental health of the brain injury survivor and their partner, and the strains on their relationship, all worsens from two to five years after the injury.
“Someone had a life-changing event and is in hospital, they lived, and they start to make improvements. Then, it’s only when they’re back home and the dust is settled do couples realise it doesn’t feel the same anymore.
“Or maybe the partner has to do a lot of physical care that has challenged the intimacy between them, that shows the emotional connection isn’t the same.”
It’s at this point, Yeates says, couples often decide they need help. But services may have fallen away by the time they reach this point.
“Often, services have fallen away by the time these needs show themselves. It depends on the availability of the community team or third sector organisation as to what support they can offer, which varies on the postcode lottery.”
Some people might reach out to a general couple’s therapist, Yeates says, who has no experience of working with people with neurological conditions, or a neuropsychologist who isn’t trained as a couple’s therapist.
“There are unique challenges here to consider, but accessing the right type of support is difficult.”
Yeates has found, from general feedback, that people would like to be asked more often by clinicals about their sex and intimate live.
“In the services I work in, I always ask people, and most people are relieved to be asked about their sexuality after a brain injury. For a survivor, sex after a stroke can be affected in so many different ways, in the same way people’s memories can be affected.
“People describe the experience of their sexual identity changing, of what turns them on being different, now, a sense of what feels possible to express themselves sexually is different now.
Perhaps they have cognitive difficulties that mean sex can’t be spontaneous anymore, for example, Yeates adds.
“From a couple’s point of view, it’s complicated, because a breakdown in sexuality can often be reflective of an emotional breakdown between them.
“Having therapy on how to do things differently in the bedroom might not be a priority for them, they might not feel emotionally safe or supported with their partner right now, and maybe this needs addressing first.”
When the emotional side of the relationship is good, Yeates says, couples should find ways to be supported to resume intimacy together.
“If someone is paralysed on one side, it’s about finding new ways to explore different positions, for example, or using physical aids, discussing ideas of how to express themselves and enjoy sexual contact in different ways.”
Yeates is happy to have noticed the uprising of a disabled sexuality movement outside of the brain injury area.
“The movement is saying that people with disabilities have the right to an exciting sex life, as much as anyone else.”
But this conversation is important for brain injury survivors, too, he says, as it’s important to think creatively and challenging norms to think outside the box of what sex is, Yeates says.
“This part of life after a brain injury gets overlooked and doesn’t get the attention it deserves. But for a survivor or a couple, it has loads of payoffs with mental health, wellbeing and connection.”
Yeates says there isn’t enough awareness among doctors, either. For example, he says, a person with a brain injury might experience side-effects of medication including loss of libido or erectile dysfunction, which can then lead to depression or low mood, but they often can get passed from a neurologist to a urologist, and no one speaks about things from the perspective of the person’s sexuality.
Yeates also works with brain injury survivors who aren’t in relationships, who want to develop the sexual component in their lives.
“I support people to use escorts a lot in my work, which is a contentious issue. There’s a lot of discomfort on the part of professionals, which is leaving service users high and dry to that dimension of their lives.”
But for those going to see escorts, the pandemic, particularly the lockdown, made it more difficult.
“In the lockdown, people can’t access sexual services in the same way. One client was able to resume going to a massage parlour and get intimate care, but the massage therapist was wearing a facemask and nothing else – if it wasn’t complicated enough already, this has added to it.”
Yeates has co-written a series of leaflets with Headway on relationships and sexuality, and a series of videos for Different Strokes on sex after a stroke, which can be viewed here.
The light and shade of brain injury recovery
When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…
Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.
Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.
“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.
Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.
“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.
“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”
Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.
“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.
“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”
The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.
Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.
She says the name of the book came from several inspirations.
“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.
“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”
Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.
“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.
“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.
“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”
“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”
Eates was also surprised to see such a positive atmosphere in Headway’s studio.
“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”
Eates is looking forward to the members seeing their work in the final book.
“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.
“It will be interesting for them to see how their artwork and their stories have inspired others.”
Scottish MP talks rehab, criminal justice and out-of-work assessments
NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.
Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.
“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.
“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”
Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.
“I became aware from a personal point of view that these issues are often overlooked,” she says.
“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”
Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.
She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.
“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.
“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”
Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.
The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.
“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.
Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.
In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.
“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.
“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”
However, the service does get some referrals from the NHS to reduce patients’ waiting times.
“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.
Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.
“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.
But Cameron has found this isn’t unique to parliament.
“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.
“This is a huge issue that needs to be addressed within criminal justice.”
Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.
When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.
“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”
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