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Interviews

The light and shade of brain injury recovery

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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.”

 

 

Interviews

Richardson Care: building on a caring legacy

NR Times learns more about the development of the specialist care provider and how caring is at its very heart

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Having begun life as a care operator when Brian and Jackie Richardson opened up their own home to support people with learning disabilities, it’s fair to say the ethos of care and compassion has been at the heart of Richardson Care from the very outset. 

And from that decision in 1989, when ten people moved into the Richardson family home to get the kind of residential care not available elsewhere in the Northampton area, has spawned an esteemed care provider and now second-generation family business. 

Run by Laura – who was ten years old when her parents turned to caring for those who needed them – and Greg Richardson-Cheater, the business now has six homes in Northampton; three for learning disabilities and three specialist brain injury homes. 

And the family connection is ever-present, with Laura and Greg showing the confidence in the quality and standards they operate with one of their residents being Laura’s uncle, who has schizophrenia. 

“We opened our home as dad was a teacher who supported adolescents who had learning difficulties,” recalls Laura.

“It really sparked an interest for him, because there wasn’t much provision back then. And through my uncle, who has severe schizophrenia, we saw it from the family side as well. The challenges that exist, the care and support people need. My dad always looked after him. 

“But from there, from dad wanting to help, we realised there was scope for a family business. A business which is all about caring for people, because we do care.” 

Greg, who began his career with Richardson Care on a volunteer placement in 1992, before becoming a senior support worker – going on to marry Laura and together building the business further – says: “I suppose you could say we’re putting our money where our mouth is with the fact that Laura’s uncle is here. People say residential care homes should be somewhere you’d be pleased to put your own family, and we’re showing that we are.

“When we offer a placement to somebody, we know that this person has parents, siblings, sons and daughters, and we take that responsibility to all of them seriously. We will look after them as best we can because at the core of everything is that we care about these people.

“Some of the guys in our learning disability homes have been with us for nearly 30 years, so it becomes an enormous family tie.” 

Having grown from Brian and Jackie to now employing around 180 people across the six Northampton homes – the most recent of which, brain injury specialist centre The Coach House, opened in 2019 – the onus remains on retaining the ethos of care and commitment in the business. 

With family involvement running throughout the business, in addition to the care provision – from Laura overseeing the interior design of the homes to Greg’s brother being involved as architect – the expansion of the Richardson Care is something Greg and Laura, working alongside operational and clinical director Jane Payne, are committed to getting right. 

“We have got a lot bigger and we can’t be everywhere at once, but we’re still small enough to be around when we’re needed. If a family member wants to speak to me, they can do that,” says Greg. 

“We’re involved whenever it’s appropriate, but you don’t want to micro manage people, you want people to have the autonomy to do their job. You have to trust and respect them enough to do that, and they have to trust us too. 

“Quite often they know better than us anyway. We have some great people here, and many of our MDT have been with us for a long time, they are a brilliant team who we have been lucky to work with for a number of years.”

Laura continues: “For us, it’s really important that everyone is involved in care and in the ethos, whatever they do in the business. 

“So, for example, when we deliver our crisis intervention training, that’s to all of our staff, whether you’re in admin, a cleaner, a maintenance worker. So if a crisis does happen, then everyone has a level of understanding so they can respond in a way that is appropriate. 

“We’re really committed to developing our people, so that they feel they’re really part of the business they play a vital role in.”

With the ongoing growth of Richardson Care, and accompanying expansion of its workforce, recruitment continues at pace. Amidst the well-documented challenges of recruitment and retention within healthcare, the business recently carried out an evaluation of how to be the best possible place to work for its staff. 

“We don’t have a big staff turnover, but haven’t been immune from the challenges of Brexit and COVID, and sadly have lost people because of both of those factors,” says Greg.

“We do have a lot of really long-serving people who have been with us for many years. Recently, we had two retirements, one was ten years and the other 25 years. But by addressing the need to bring in new people, we have taken the opportunity to look at what more we can be doing. 

“As well a salary increase, we have looked at other ways we can be competitive. As a result, we have become more user friendly for people who have kids or family commitments by looking at the rota and seeing what we can do. 

“For example, we have one member of staff who said she found it really difficult with the before- and after-school clubs, she was having to put her kids in at both ends of the day, which is a big cost. So by making adjustments, we hope that will really help.”

And as well as investing in its staff and the development of homes, Richardson Care also continues to invest in rehab provision for its clients. One recent introduction is the RehaCom cognitive therapy software platform, which is already delivering positive breakthroughs. 

“As well as the care, we are really developing the rehab side of things,” says Greg. 

“RehaCom is really helping with the psychology, in terms of the emotional support and cognitive rehab we can deliver. 

“We’ve got a couple of cases where there are some specific memories that have been brought to the fore that people have brought up. And with one man, his sense of well being and worth has come from that because he can measure his progress specifically. 

“You can see the incremental progress and that’s so valuable, to see and to know you’re getting there.” 

While many operators look at geographical expansion once they establish a successful model of care, for Richardson Care, the decision to be base in Northampton is a very conscious one. 

“We look at other companies that have been going along similar sort of time, they’ve expanded much, much more than what we have,” says Laura. 

“But it’s just not what we’re looking for. We’re looking for manageable, we’re looking for quality, we want to be able to feel proud about what we’re doing.”

“We’ve been offered the opportunity for expansion more than once, on numerous occasions in fact,” continues Greg. 

“But we find this is an ideal place to be based. It’s well situated, not too far from London, and people know us here, they know who we are. We were in Waitrose recently and we were talking to a lady who works there, she was asking about one of our service users who comes in but she hasn’t seen them for a while, so she was just checking they were OK. 

“We never want to lose that role we have in the community by going elsewhere, it’s something we want to continue to build.”

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Interviews

Helping others to live and work with a neurological condition

Sophia Cotter is using her lived experience to help people in the workplace through her role with The Brain Charity

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When Sophia Cotter was diagnosed with multiple sclerosis (MS), she found it hard to continue with her working life as she used to. But now, through her current role as an employment advisor with The Brain Charity, she is using her own experience to help others with a neurological condition who face a similar situation. NR Times meets her to learn more

 

When Sophia Cotter was diagnosed with MS, she had a stressful job which came with many daily challenges – difficulties which were only amplified by her condition. 

“It was a shock, it was devastating,” she recalls. 

“I didn’t want to let it defeat me but I knew I couldn’t continue in my job, and that’s really hard to deal with.”

Sophia Cotter

Sophia’s first realisation that something may be wrong came one day when she was taking her daughter to school, and, for seemingly no reason, she fell over. 

“I shrugged it off and got to work but ended up falling asleep at my desk, which is not something I’d ever normally do,” says Sophia, from Liverpool. 

“I felt better when I got home, but the next day when I woke up I couldn’t feel my arm or my leg. I phoned my partner but he couldn’t understand what I was saying, I was slurring my words so much. At that point, I thought I’d had a stroke. 

“I went to hospital, and it took a few weeks to get the diagnosis, but they told me it was MS.”

Sophia faced a number of battles with her health as the symptoms of her condition continued to impact – but all the while, she was faced with what she felt was an obligation to return to work. 

“I very realised very quickly I couldn’t do my job as well as I used to do,” she says.

“My cognitive function meant I couldn’t think properly, but I think because it didn’t look like there was anything wrong with me, a lot of people just assumed there wasn’t. 

“I tried my best for nine months, but something had to change.” 

Sophia left her job to study criminology and social science at university – she has since achieved her foundation degree and is progressing towards her BA. 

Happily, she has found a role in which she is supported with The Brain Charity, a national organisation committed to supporting people living with neurological conditions with practical, emotional and social support. Sophia specialises in delivering employment advice. 

“We do get some really awful stories about how people with a brain injury or a neurological condition have been treated, it’s shocking how often it happens,” she says. 

“But I think because of what I’ve been through, I can really understand the problems people face, particularly the lack of understanding and support you can see in the workplace, and it makes you even more determined to help. 

“I think it does help our service users to feel they can talk to us and really open up because they know we really do understand, many of us are living through the very things they face. 

“There are actually several people working at The Brain Charity who have neurological conditions. I think it helps to show what a great place this is to work, but also that we want to support other people whose situations we genuinely understand, we can help them through that.” 

The Brain Charity offers a comprehensive range of employment-related support, from advising on rights in the workplace and helping those who face discrimination – referring to specialist legal partners where necessary – to supporting unemployed people back into work.

From its Liverpool headquarters, the charity delivers a legal and employment rights service nationally, along with some employment projects specifically for the Liverpool City Region for people aged 18 and over in receipt of certain benefits.

“We have people coming here who may not have worked for 20 years, but who want to get back into doing something,” says Sophia. 

“We can help with re-training, volunteering, once we establish what they want to do, we work with a number of suitable employers and organisations who we can link them up with if there may be an opportunity. 

“A lot of our service users want to give back, to recognise all the help and support they’ve received during their recovery. That can take many forms – meeting and greeting, helping out, peer support – but it’s all really worthwhile to both the person and the organisation.”

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Interviews

Making brain injury a priority in domestic violence support

NR Times learns how a groundbreaking new Disabilities Trust initiative builds on pioneering efforts from Ohio in the United States

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A world-first project to advance understanding of the impact of domestic violence and brain injury, to empower support services to better assist survivors, is being launched in the UK. 

The Disabilities Trust is working with five domestic abuse services across the country to establish the an estimate of prevalence of brain injury and how that impacts the day-to-day lives of those affected.

The partnership is believed to be unique globally in terms of its breadth and level of engagement, and aims to increase the understanding of brain injury in domestic violence services, enabling them to identify the signs of brain injury and deliver the bespoke support that each survivor needs. 

Statistics show that two thirds of domestic abuse practitioners in the UK feel mostly unprepared to support someone with a brain injury, highlighting the urgent need for change.

Now, The Disabilities Trust – which has helped to lead vital research in this area for many years, including securing standardised questions for all prisoners on ABI sustained through domestic violence – is spearheading the charge to make positive change to the lives of those living with brain injuries caused by intimate partner violence (IPV).

“We are working hand in hand with the domestic abuse sector on what is truly a groundbreaking project,” says Jocelyn Gaynor, head of Foundation at The Disabilities Trust. 

“We know from research that there is a gap in detailed knowledge from both the brain injury and domestic violence sectors in how best to support survivors, and that there is an absence of specialist training. 

“To help address this, we want to understand the impact of brain injury on everyday functioning and the practical implications of this on people’s lives.

“We want to ensure people working in this sector have the skills and tools they need to support survivors, and we’re delighted this project has been embraced as it has been.”

The project builds on groundbreaking research from the United States, where Ohio Domestic Violence Network worked alongside public health scientist Dr Julianna Nemeth from Ohio State University – supported by Katherine Snedaker, founder of Pink Concussions – to highlight the scale of brain injury in domestic violence survivors, but the huge lack of awareness from those in positions of support. 

By bringing together agencies across the state to consider the impact and prevalence of brain injury in domestic violence survivors – in what was often the first time many had made the link – positive change continues to be made for people living across the state. 

The group has become a beacon in the US for its work, which began in 2016, with the National Coalition – which works with state-wide domestic violence coalitions across the country – reaching out to Ohio for guidance on addressing brain injury. 

They are now working collaboratively with the The Disabilities Trust to take forward the significant progress and awareness they gained during their work in the US. 

Rachel Ramirez

“In this organisation, that has provided support to domestic violence victims for 30 years in the United States, we have never really considered brain injury as a framework for understanding things,” says Rachel Ramirez, founder and director of the Center on Partner-Inflicted Brain Injury at the Ohio Domestic Violence Network, which was established as a result of the research. 

“We were holding groups with people who had spent their entire careers in domestic violence, and they really were thinking about this for the first time. 

“And even though when talking directly with survivors who were very open about the repetitive head trauma that they had experienced, none of them had put a context of brain injury on that. 

“So if they’d said ‘I’ve been hit on the head more times than I even know’, and we’d have asked ‘Well do you have a brain injury?’, no-one would have made that connection. 

“I had worked at a statewide organisation for a decade working on domestic violence and did a major capacity building project on trauma-informed care across the state for years. And I never once mentioned brain injury at all.

“It’s one of those things where it’s very quickly obvious once you stop and think about it, but just no-one ever had.”

The research, which Dr Nemeth recalls was done on “a shoestring” budget due to lack of funding, they were able to bring together all of the 75 organisations which form part of the state-wide Domestic Violence Network and find out the true situation and implement action from there. 

“We basically applied a public health planning process,” says Dr Nemeth, who has a background in domestic violence advocacy. 

“To better help survivors with mental health and brain injury, we needed to learn more so the programmes of support can better accommodate their needs. 

“We did a needs assessment, where we talked to domestic violence service organisation staff members about what they knew about brain injury, and what they would need in order to provide more effective services for survivors. 

“Then we talked to survivors about their experiences, and what they would need to be able to access services better. 

“And what we found was there was a huge discrepancy between survivors experiences coming into services, and the training and the preparation that advocates had. 

“So as a result of this, we’ve created a new intervention called Care. It’s really an advocacy framework that takes into account brain injury, it puts brain injury on the table along with trauma and all the other issues that domestic violence survivors are dealing with, but really recognises that brain injury is one of those things that’s really affecting the way survivors are coming to services and are able to move through services effectively. 

“We’ve created a whole host of tools that advocates then can use directly with survivors, to directly speak about it head injury. They didn’t want medical terms, it is all in lay terms and accessible language.

Dr Julianna Nemeth 

“This isn’t about diagnosis, it’s about truly just trying to communicate injuries that have happened to you, because of violence that been inflicted on you. It’s not their fault, they’re not crazy, it’s not what their partner is saying to them – there is an explanation for what is happening to them.”

With training being implemented across Ohio Domestic Violence Network, the Care intervention is delivering results to survivors state-wide, with outcomes charted through a new evaluation measure.

“We wanted to understand how the member organisations were using the Care intervention, as well as understanding the impact that that intervention was having on advocacy practice, both from the perspective of the practitioners as well as the survivors,” says Dr Nemeth. 

“We have documented that the Care intervention is effective and raising the trauma-informed practices of advocates in general, so they’re more flexible and more accommodating to meet the needs of survivors in general, because they’re now putting brain injury on the table.

“And they’re also around a wide variety of issues, including substance use and mental health and suicide and other concerns that survivors brings to the table, which we can do because we’re addressing brain injury directly, recognising this is what brain injury survivors are dealing with.”

The project also saw the creation of the US’s first Center on Partner-Inflicted Brain Injury, which is helping to influence approach nationally. 

“We provide lots of training and technical assistance and talk to people across the country around this area,” says Rachel. 

“I think we’ve also recognised that there are so many unique characteristics of a domestic violence survivor’s situation – safety concerns, the inter-personal nature of the violence, this is a really very different beast than head injury from sports, or the military, or car accidents or falls. 

“We can’t take existing brain injury protocols and make a couple of little changes – we recognised the need for something entirely different and separate.

“In domestic violence and the dynamics behind that and the gaslighting, survivors often think they’re crazy, they’re stupid, this is may fault, all the things that are told to them throughout their abusive relationships. 

“But by having a context and to be more self-aware of how they’ve been impacted by their brain injury, and to have a reason for that, is so important.

“I think that we’ve come very much to believe that early identification, and even just knowledge that survivors can have themselves, can really help prevent additional, worse health outcomes in a multitude of areas.”

Through the pioneering work of Ohio, which continues to help change thinking across the United States, the outlook for survivors in accessing domestic violence services is improving all the time, but with much left to do. The fact the UK is now building on this work further is something very much welcomed by both Rachel and Dr Nemeth. 

“For us, it was kind of like we got to the end of the project, and then you realise we’re just at the base of the mountain,” says Dr Nemeth. 

“And there’s this huge mountain to climb, but that’s one of the reasons why we were so excited about connecting with the UK.”

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