People living with a brain injury or neurological condition should have more access to employment than ever before.
But experts in the field paint a very different picture; in which individuals are struggling to find employment, withdrawing from work all together and experiencing discrimination.
In July 2019, the Neurological Alliance published the most comprehensive survey undertaken of people living with neurological conditions.
It found that one in three respondents have been discriminated against as a result of their condition, and almost a third (29 per cent) have had their contract of employment terminated.
The report came a week after the Scottish National Party MP, Martyn Day, called on the UK government to address the employability gap between those living with an acquired brain injury (ABI) and the rest of the population in parliament.
In Scotland – where it is estimated that ABI is the most significant cause of disablement for people of working age – only around 40 per cent of working-age disabled adults are in employment, compared with more than 80 per cent of those without a disability.
Since the introduction of the Equality Act 2010, those who are disabled should have more access to paid work than ever, yet the disability employment gap remains high and disabled people continue to be paid less on average than the general population, says the Neurological Alliance report. Employment discrimination appears to be rife, despite the legislation.
“People with a brain injury experience discrimination in all areas of their lives and work, sadly, is one of them,” says occupational psychologist Suzanne Guest, who has helped hundreds of people with neurological conditions back into employment, through her support service, Work in Mind.
The group helps individuals who have suffered a brain injury to find meaningful employment, either with their previous employer, or through supporting them to find new work or undertake volunteering.
The recent findings come as no surprise to Suzanne. She has worked with clients who have been dismissed on competency grounds, as well as those who have felt forced to resign themselves because the workplace hasn’t been tolerable for them.
One of the key provisions of the Equality Act is that employers are legally obliged to make ‘reasonable adjustments’ for employees.
However, in Suzanne’s experience, some employers have been reluctant out of concern that it would be discriminating against other members of staff.
“If it’s things like getting a desk or a special chair, they’re happy for that, but something like restructuring someone’s breaks, or giving them a bit of feedback, that doesn’t seem to be as well-received,” she says.
Often, individuals don’t want to put themselves through the turmoil of an employment tribunal, which would be required to establish whether those adjustments had been put in place and the employer was breaching the Act.
Also, until recently, many couldn’t afford it, with fees of up to £1,200 for such cases, which were ruled unlawful in 2017.
What really saddens Suzanne though, is that many of her clients have felt discriminated against before they’ve even made it into the workplace.
“A lot of my clients will volunteer before they go back to work, and I’ve seen more discrimination in the voluntary sector,” she says.
One of Suzanne’s clients was stopped from volunteering because of his epilepsy.
Another, whose employer was initially supportive after his accident, returned to work on a voluntary basis but was dismissed within a month because he was struggling to relearn his job.
“These are people who either wanted to have some meaningful occupation of their time or to build themselves back up to getting into paid work,” she says.
“Those bars are hitting them before they’ve even got to the workplace, because the charities aren’t being supportive either.”
Suzanne would like to see work taken more seriously as an important element of rehabilitation.
“It would be good to see work classed as part of the neuro-rehab package. I see work as being the last step to gaining independence. Often the NHS does a great job of saving your life – and of course it has to prioritise daily living skills – but work doesn’t tend to be covered in statutory services.”
This is something David Martin, chief executive of multiple sclerosis charity the MS Trust, would agree with. The trust has found that many people diagnosed with the condition are advised by health workers to give up work much earlier than they would like, or need to.
“We’ve heard time and time again that when people are diagnosed they’re encouraged by health professionals to give up or reign back on work,” David says.
Figures show that only 36 per cent of individuals with MS are in full-time employment, compared to the national average of 75 per cent.
“Some of that might be down to the discrimination mentioned in the Neurological Alliance report, but I think some of it is down to the attitude of the health services as well,” he says.
“I’ve got anecdotal evidence that there are people in the [NHS] who have encouraged people with MS to stop working, or cut down.
“That can sometimes be good advice but certainly, in our experience, there are many people with MS who are actually stopping or cutting back on work much earlier than they need to.
“For some people, the condition might impact them so significantly and severely that they are simply not able to work and, yes, you do need to preserve your energy, but it’s that health and wellbeing aspect.
“Your brain activation is going to be better if you’re doing some sort of work, if you’re able to.”
It’s not only the individuals themselves who are losing out, David says: “From an employers’ point of view there’s a lot of wasted resources. A lot of people with skills, energy and passion are not getting the fulfilment of work and they’re not giving something back to society.”
As well as providing information online, the MS Trust facilitates a Facebook group of 10,000 people living with MS, where they can exchange advice and support for each other about working life with the condition.
“What we’re trying to do is provide information so that in an ideal world, if people are able to continue working, then they can do. There
has got to be a choice for the individual from a health and wellbeing point of view.”
But David believes much more needs to be done in educating employers, and other colleagues in the workplace, about MS and neurological conditions.
“About a third of people being discriminated against and forced out of work because of their condition is truly shocking and shows how much ignorance there is in the workplace at the moment,” he says.
On a charity bike ride last year, David met a company chief executive who had hidden his MS diagnosis for 30 years for fear of being discriminated against.
He adds: “It’s about educating employers and colleagues at work so they understand what MS is and what reasonable adjustments they might be able to make to improve things for the organisation and the individual.”
For brain injury survivors, however, returning to work can be immensely challenging, and it often requires a commitment from both the individual and the employer.
Remploy, the UK-based disability recruitment specialist, provides employment and skills support for disabled people and those with health conditions. It also helps employers to become more “disability confident”.
Vocational rehabilitation consultant at Remploy, Sarah Pearson, sets out guidelines for returning to work with a brain injury.
“There are benefits for the patient, the workplace, and society to finding factors that facilitate a successful return to work,” she says.
“The vocational rehabilitation process is a balancing act in individualised planning and support, as a partnership with the employer, needs to be developed, motivation needs to be generated and awareness built of abilities that facilitate return to work.
“With improved rehabilitation and greater awareness of the impact of ABI, it makes good business sense to ensure that the employee has the tools and support to be able to return to work successfully.”
Michelle Munt resigned from her job “out of guilt” after suffering a diffuse axonal brain injury in a freak traffic accident in 2014.
“I was working for a small employer and they didn’t necessarily do anything wrong, but it was the guilt that I was carrying around, that the company would financially struggle without being able to fill my role properly, which made me resign,” she says.
“I don’t think my situation is unique. There’s probably a large number who will end up giving up careers because they just don’t know what else to do.”
A previous career in recruitment led Michelle to set up Jumbled Brain, a coaching service which helps brain injury survivors back into the workplace.
It informs them about what reasonable adjustments they can ask for and assists with CV writing and interview preparation.
Applying for a job is a stressful situation for anyone, but particularly so for someone with a brain injury, she says: “You have the worry of having the employment gap in the first place, and then there’s what you actually put on your CV, which can be an issue for anybody, but particularly if your memory or concentration is not as good as it was.”
Michelle finds that the fear and guilt brain injury survivors may be dealing with also leaves them at a disadvantage in job interviews.
“In my own experience, we can be self- perpetuating,” she says. “Instead of putting our best foot forward as you are supposed to do in interviews, we make it harder for ourselves.”
While there are always times when it is appropriate to disclose information to a prospective employer, such as if reasonable adjustments need to be made, some survivors find themselves oversharing unnecessary information about their condition, which can lead to employers ruling them out.
“The other person may not have noticed anything they feel would be relevant to the role, but out of fear of what’s going to happen, they start divulging things that perhaps they don’t need to.
“It’s a frightening thing for anyone to hear, when you’re talking about an impairment, so employers tend to err on the side of caution.”
And yet, it doesn’t take a lot to accommodate someone with a brain injury, just a bit of care and creativity, according to Suzanne Guest. “Sometimes good brain injury management is just good management, as it involves giving clear instructions,” she explains.
“Systems that can be put in place can be simple and low tech, such as checklists and notice boards.
“These can be helpful for everyone. Other strategies, such as minimising distractions and letting people know that you check emails at certain times of day, are often recommended by business coaches as ways of being more productive.”
She adds: “It really doesn’t have to be expensive to include someone, and often people with brain injury can make really good employees.”
The key is to be able to look past the challenges, and focus on an individuals’ strengths, believes Michelle.
“Most of us struggle with brain fog or forgetfulness and therefore we worry about it a lot, but none of these are things that stop anybody going for the job that they want.
“We focus so much on our limitations – or what we perceive to be our limitations – we actually stop ourselves from going forward
for something. Just because you forget a word from time to time, doesn’t mean you’re not the right person for the job.”
‘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.
‘I’m a rehab professional attempting to rehab myself’
Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’
My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.
Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.
In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.
This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.
Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.
Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.
This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.
Just a key point I would like to throw in here. Fatigue is not the same as being tired!!
I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.
In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.
Though there are so many unknowns with this virus, from my experience I have learnt the following:
– The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.
– To appreciate the stillness and tranquillity of silence
– Spending time alone and reflecting is so peaceful.
– Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.
Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.
This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.
I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.
Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.
A rehab professional attempting to rehab herself.
Taking time to look back – so the way ahead is clearer
Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.
Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.
It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.
But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time.
It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.
The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate
plan how it might be enhanced, improved or done differently in the future.
Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.
The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.
“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.
“If we have an incident with a patient, we discuss it in the session” she says.
Sessions are led by the management team, with added input from psychology teams on each ward.
They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.
They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.
While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.
In an article* published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”
Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.
“Healthcare workers often don’t fully understand patients’ diagnoses or why they’re reacting in a certain way, for example,” Jemima says.
“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.
“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.
“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”
Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.
“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”
In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.
She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.
The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.
The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.
Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.
Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.
Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.
Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.
For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological
Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nurses- reflection-on-practice-18-06-2019/
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