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.
The importance of mindset in rehabilitation
Having the right mindset can be central to rehabilitation, says stroke survivor Lisa Beaumont, and can equip an individual with the determination to overcome setbacks, find new means of expression, and crucially, to never give up
Last month, I highlighted the importance of goal-setting. This month my focus is on the mindset that I believe is fundamental for a successful rehabilitation.
Even though goals and plans to reach them are important, it is crucial to have the right mental attitude to make a successful recovery throughout neurological rehabilitation.
No-one can control the many factors that impact achievements, such as physical injury, global pandemic and persistent rain.
Nevertheless a successful rehabilitation can be assisted by one thing that each individual has the potential to master – their mindset.
I was unaware pre-stroke that I have a positive, growth mindset instead of a fixed mindset, as described by Dr Carol Dweck in her book, ‘Mindset’. For anyone with a fixed mindset, setbacks will often be felt as a failure.
A ‘growth mindset’, on the other hand, thrives on challenge and sees setbacks as a heartening springboard for growth and for stretching yourself to fulfil your potential by learning and improving.
The platform developed by Neuro ProActive is ideal for underpinning recovery for those who adopt a growth mindset because it provides a means of support post-discharge for the patient to create a long fulfilling life. Dr Dweck emphasises the transformational power of effort and persistence that are the hallmarks of a growth mindset.
I believe that a positive-thinking mindset is needed to overcome the setbacks that disrupt any plan. For example, I haven’t had an opportunity to enjoy countryside walking this summer, yet.
My first intention had been to report this month on outdoor walking on uneven surfaces, but that report has been thwarted by a minor injury and poor weather conditions. So, how do I respond to these setbacks? I’m putting my effort into my daily physio regime that will improve my posture for walking and bearing my weight evenly on both sides. A minor niggle in my over-worked right knee has repaired sufficiently for me to be able resume my walking on our garden path and on the grass whenever the rain stops.
I might be able to tackle a countryside ramble later in June? I continue to make small gains by doing whatever I can do. I can view the weather and my injury as an opportunity to improve my stance indoors to prepare myself for outdoor walking.
I co-ordinate a Peer Support Group in West Kent on behalf of Different Strokes, where one of my group’s participants has exemplified a growth mindset in the last year. Chris mirrors many of my disabilities, hemiplegia hemianopia and left-neglect – an extremely limiting combination of conditions.
However, Chris, who was a keen craftswoman prior to her cerebral stroke at 47, took the decision to find a creative past-time that she could undertake capably with one hand. She chose to teach herself watercolour painting from scratch mainly by finding art tutorials on YouTube. One of her watercolour originals has been used to illustrate this article – ‘New Season’ represents her feelings about her devastating cerebral stroke.
By focussing her effort on what she can do, using her functioning right hand, Chris has found a rewarding past-time in watercolour painting, which allows her to escape the daily frustrations that stem from immobility and brings pleasure to others too.
Chris and I share an interest in creative arts. I write prose and poetry to help me to process what has happened to me. I am very pleased that Neuro ProActive’ s extensive directory of support practitioners includes a section on arts therapy as well as psychotherapists. A growth mindset permits you to find new ways to overcome setbacks through persistence and effort, which is abbreviated in the stroke survivors’ hashtag #nevergiveup.
For more information about Neuro ProActive’s platform, visit www.neuroproactive.com.
Produced with assistance from Paige Gravenell, physio assistant neurorehabkent.com
Redefining rehab: first-of-its kind ward gets set to open
As the new Castle Hill Hospital rehab ward gets set to open, NR Times speaks to Dr Abayomi Salawu, whose dedication to achieving goals through rehab, and passion for using VR and AR within it, is putting Hull at the forefront of the UK
A new NHS rehabilitation centre, which will be the first in the UK to incorporate digital technology and virtual reality into its rehab offering, is set to open its doors.
The purpose-built ward at Castle Hill Hospital in Hull will have 12 beds and has a range of facilities, including a gym, therapy room and garden area, to enable a comprehensive rehab offering to be delivered.
It also becomes the first NHS inpatient rehabilitation unit to incorporate digital technology, including virtual and augmented reality into its rehabilitation programme, after Hull hosted the UK’s first successful clinical trial of the GEO robotic gait trainer in 2017.
Patients are expected to move into the new building – the first purpose-built NHS specialist rehabilitation centre across the Humber, Coast and Vale area and neighbouring Lincolnshire – in the coming weeks.
“This new building brings rehab into modern life. Previously to this, we had our rehab unit as part of the cardiac ward, and more recently in the oncology section, but the limitations of not having a dedication rehab ward became obvious,” says Dr Abayomi Salawu, consultant in rehabilitation medicine at Hull University Teaching Hospitals NHS Trust.
“Our role in rehabilitation is to help restore function and enhance quality of life for people with complex health needs so that they may go on to live fully and meaningfully, not just exist.
“Normal hospital ward environments aren’t generally suited for this purpose, especially in the case of patients with acquired brain injury or physical and cognitive deficits.
“This new ward will give us the space and the facilities we need to provide specialist rehabilitation input to the highest level, and will also deliver an environment which is more conducive to patient recovery.
“We have 12 beds, we do need more, but while acute clinical care and public health have both received significant investment for many years, rehabilitation – the third pillar upon which the NHS is built – has sadly lagged behind.
“So our new rehabilitation ward is a really significant development and definitely a step in the right direction.”
Redefining the traditional definition and practices of rehab is something Dr Salawu has long been committed to, and that extends into the ethos of the Castle Hill ward.
“We offer complex rehab, if the nurses or staff on any ward think they have a patient who could benefit, then they can come to the new ward,” he says.
“Life has to be about more than going to the toilet and the whole ethos of being able to conquer that starts by conquering your first environment, which is hospital.
“The approach that has always been taken often makes a patient more poorly, in a way. I’m not underplaying physical injury, but in an NHS hospital, the first thing we do is give someone a bed, even if they walked in. A lot of people become de-conditioned when they are hospitalised, and that’s making patients worse.
“If you can get a patient as physically fit before surgery, through ‘pre-hab’, then that can make things so much better before and after. With our amputation patients, we do the ‘pre-hab’ work with them and it’s so successful we can then pick them up after surgery as an outpatient. We haven’t used our rehab beds for amputation patients for four or five years now.
“Another thing in rehab is that there isn’t always a cure, but that doesn’t say you can’t live life well and meaningfully. If, for example, you have a child with Cerebral Palsy, then that condition isn’t going to be reversed – so let’s move on and find out what we can do. How can we enable them to do things and how can we support them in that?”
One key way of engaging patients is through technology, believes Dr Salawu. In addition to the therapy work of the MDT, Dr Salawu is a firm believer in the power of virtual and augmented reality, and is so invested he is even leading the development of new apps.
“I’m a firm advocate and believer in technology, I’m totally sold that this helps rehab. I always look for whatever low hanging fruits we can use, and technology is something we can use. It’s easy, quick, achievable and doesn’t cost a massive amount,” he says.
“We use virtual reality and augmented reality and we have linked in with Hull University to develop a virtual kitchen app, which patients can interact with virtually and then use their skills to replicate the tasks with their OT in the real-life kitchen.
“It’s all about practice, practice, practice. That’s what helps recovery and that’s what rehab is about. But practice is boring, for a lot of people rehab isn’t exciting, and that’s the problem.
“If you want someone with a paralysed limb to practice moving it, if they try a few times and their limb doesn’t respond, even the most motivated patient will give up. But if you translate that into a virtual environment, where you can move your virtual limb in a virtual world, then that might give the opportunity for some recovery – and psychologically can be very important.
“The more opportunities you give to the patient to practice rehab, so they can maintain or recover their function, the better. That’s why VR works so well, because it’s fun it makes rehab more engaging.
“That’s where we should be pushing, to empower patients to take over their own rehab.
“I said to the computer scientists that I hear video games are addictive, could they please create some addictive rehab for my patients so they would become addicted to their practice!
“But we also have a quiet room in the new unit, where patients can use the immersive environment of a VR headset to be calm, de-escalate, become less agitated. We have developed the Brain Recovery Zone app, which is very calming and soothing, and can be used by patients in their own homes as well.
“Through putting on a headset and being in that calm environment, that can also be very important in rehab.
“For my patients, I’ll say ‘Whatever floats your boat. Try things in rehab, see what you enjoy and what works’ and we’ll see what we can achieve. I want to empower patients to take control of their rehab however they can, and by using these pieces of technology, we’re seeing great results.”
‘Recovery from ARBD is the norm, not the exception’
Reflecting on the recent ‘Recovery and Rehabilitation in The Community: Alcohol Related Brain Injury in Ireland’ event, senior clinical psychologist Dr Nichola Robson shares her analysis for NR Times
It was a pleasure to listen to some of the leading professionals talk about alcohol related brain injury (ARBI), a condition arguably encountered in most areas of clinical practice.
The theme of ‘hope’ ran throughout the event, which was hosted remotely by Leonard Cheshire, with the central message that recovery from alcohol related brain damage (ARBD) is the norm, not the exception.
With the right kind of specialist intervention (including the provision of long-term residential placements), an estimated 75 per cent of individuals with ARBD experience a degree of recovery, with complete recovery possible for the remaining 25 per cent.
The day consisted of presentations from experts, interspersed with video anecdotes from service users’ family members and staff from Leonard Cheshire ARBI unit, ending with an interactive discussion between the audience and expert panel members.
Dr Jenny Svanberg (consultant clinical psychologist), clinical expert and author in the field, kicked off the day with an excellent summary of the available evidence regarding alcohol and the brain. She provided stark prevalence data and discussed the impact ARBD has on utilisation of non-specialist treatment services.
She also explained mechanisms through which alcohol damages the brain (both transient and more longstanding effects), the neurological structures affected, and how this maps onto the neuropsychological symptoms and clinical presentation.
Dr Svanberg outlined inherent diagnostic complexities due to subtle initial impairments often being masked by intoxication and chaotic lifestyle. She also highlighted issues of stigma faced by those with ARBD, and how their difficulties are often at least in part, often attributed to free choice.
However, she explained that due to the neurological impact of alcohol, specifically on the frontal areas of the brain, and associated cognitive impairment later in progression, reasoning and subsequently choice, is significantly impaired, as is the ability to engage with treatment.
Next, Professor Ken Wilson (Professor of Old age Psychiatry, Liverpool University), delivered a captivating talk on the clinical characteristics and experience of individuals with a diagnosis of ARBD. He used illustrative excerpts from clinical sessions to demonstrate the how these individuals present in clinical practice.
He discussed how intact working memory can mean that individuals present plausibly in conversation, however due to short term and longer term (episodic) memory impairment, they experience significant retention and functional difficulties. Due to their cognitive profile these individuals present with reduced insight, a high degree of confabulation and suggestibility, and are therefore exceptionally vulnerable. He discussed the implications of this for assessment of risk and mental capacity.
Prof. Wilson too emphasised the need to better understand the complexities surrounding this condition, including typical neuropsychological impairments, in order to challenge stigma and support engagement with treatment services (where available). In the absence of any specialist service pathway, individuals with ARBI tend to experience repeated relapse and readmission, with significant human and economic cost.
Following on from Prof. Wilson, Grant Brad (team leader, Glasgow Addiction Services’ ARBD Team) discussed the process of setting up and securing funding for specialist ARBD services. He talked through the service pathway in Glasgow, which covers acute and community settings (including assertive outreach), and offers holistic treatment provided by a specialist multidisciplinary team.
Grant emphasised the need for a lead care group to support diagnosis and navigation of treatment pathways. He also presented evidence of significant cost savings (primarily due to reduced service utilisations) and reduced mortality associated with the service. He addressed the complexities of assessment and suggested that in absence of formal cognitive testing (contraindicated due to ongoing alcohol use), assessment should involve establishing a timeline of issues, consulting medical records, assessing functional ability through observational methods, assessing and managing risk.
Grant’s team in the process of developing an audit tool to be piloted in the near future, to evaluate the effectiveness of the treatment provided. He is also keen to see the development of a professional network to facilitate the sharing of good practice.
Next, Diane Watson (ARBI clinical lead, Leonard Cheshire) provided an overview of the recently opened specialist fourteen bed alcohol related brain injury unit, which offers rehabilitation and residential placements (of up to three years). Diane discussed the service pathway, referral criteria, team configuration, and treatment approaches. She also provided some reflections on the journey so far, detailing substantial successes and some challenges, the latter mainly related to COVID restrictions.
Dr Anne Campbell (senior lecturer) and Dr Sharon Millen (research Fellow) from Queens University Belfast outlined their mixed method evaluation of the Leonard Cheshire intervention. They aim to measure outcomes relating to psychological wellbeing, functional abilities, relationships, and community participation as well as capturing the lived experience of service users, family members and staff. Preliminary findings suggested an improvement on measures of anxiety, depression, cognition, and function.
The final session was co-chaired by Dr Shield Gilheany (CEO, Alcohol Action Ireland) and Dr Helen McMonagle (Rehabilitation Coordinator, Alcohol Forum), and involved an interactive discussion regarding “the way forward”. Expert panel members included Dr Marie Goss (Consultant Clinical Neuropsychologist), Prof John Ryan (Consultant Hepatologist, Beaumont Hospital), Dr Kieran O’Driscoll (Consultant Psychiatrist, Bloomfield Mental Health Services) and Grant Brand. Discussions centred on the development of specialist treatment pathways (spanning acute and community settings) as well as the use of legislation to protect vulnerable individuals with ARBD.
To summarise key messages from the day: the impact of ARBD often goes under-recognised and there is a lack of specialist treatment pathways across the UK. Increased education (both public and professional) is needed to improve awareness and understanding of underlying pathology, pattern of impairment, presentation, and treatment needs.
Undoubtedly there is a way to go, but this conference provided a valuable opportunity to showcase innovative service provision models supported by high quality data demonstrating effective outcomes, and in doing so sees us one step closer to meeting complex needs of this population.
One can only hope that these service provision models (or similar) can eventually be commissioned and rolled out across the UK.
* Written for NR Times by Dr Nichola Robson, senior clinical psychologist (neuropsychology) at Sunderland & Gateshead Community Acquired Brain Injury Service (CABIS), Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust
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