HemiHelp, the UK’s national charity for hemiplegia, has developed a simple tool to help those with hemiplegia explain how the condition affects them as individuals. Neelam Dongha explains why
It can be tough having a disability like hemiplegia. Things that most of us do without having to think – like tying our shoelaces, opening a bag of crisps, running for the bus – require a lot more thought and effort if you have limited use of one hand and one leg. It is made a lot worse when you have to repeatedly explain how the condition affects you to people that you deal with all the time: teachers, bosses, friends, colleagues, doctors, physiotherapists and so on.
What is hemiplegia?
The issue is complicated because hemiplegia is more than a physical disability. It is caused by an injury to the brain usually before or around the time of birth. The effects are like a stroke with a lack of control and weakness down one side of the body – the opposite half to the injured side of the brain. However, the physical severity will vary from one person to the next. In one person this may be very obvious: he or she may have little or no use of one hand and may limp severely. In another person it will be slight and only show when attempting specific physical activities.
It is not just physical development that may be affected. In fact, most people have additional diagnoses such as epilepsy, visual impairment, speech difficulties, perceptual problems, learning difficulties, emotional and behavioural issues.
Whilst people generally remember the physical aspect they often overlook or forget about these other problems. Yet people with hemiplegia tell us these less obvious issues can be more impairing. They can have a significant impact on confidence, education, employment, friendships and relationships.
Hemiplegia is not rare. In fact it is as prevalent as Down’s Syndrome – it affects one in a 1,000 people – but is comparatively unknown. One or two babies are born with hemiplegia every day in the UK and many more acquire the condition later in childhood following a stroke, head trauma or a viral infection such as meningitis.
Explaining disability can be hard at any age. When you are a young child, it is quite difficult to articulate how you feel to your teacher. As a teenager, you are trying desperately to ‘blend in’ so the last thing you want is to attract attention to yourself in front of your classmates because of your disability. By the time you are an adult, you are fed up with having to ‘tell your story’ again and again. Moreover, it can be very hard for a person with hemiplegia to explain their issues, precisely because of their issues!
One young adult* with hemiplegia recalls his experience at school.
I have hemiplegia because I had a stroke before I was even born. My teachers thought it was just a physical disability. They did not realise that my difficulty making friends, short-term memory loss, concentration issues and mental health problems were connected to my hemiplegia too.
Now help is at hand in the form of My HemiCheck, a new user-led initiative developed by the UK charity HemiHelp. At the start of the year, when planning for Hemiplegia Awareness Week 2015 (12-16 October), HemiHelp conducted a members’ survey to ask what they needed help with most. The overwhelming response was that a lack of understanding of hemiplegia affected members the most, especially frustration at having to explain the condition to the people they interact with regularly such as teachers and employers. The solution we came up with is My HemiCheck.
So how does HemiCheck work?
The person with hemiplegia can create their own individual profile by completing a short online checklist. Their responses generate a printable personal overview of how hemiplegia specifically affects them. They can then show this printout to people they regularly interact with such as teachers, medical professionals or employers, so that they don’t have to keep repeating how the condition affects them. It can also be used when they meet new people in these contexts or in other situations.
Whilst My HemiCheck is a simple concept, hopefully it will make a significant and positive impact on the daily lives of people with hemiplegia. Not only does My HemiCheck avoid repetition, it also affords them some discretion and privacy. We hope people with hemiplegia will find HemiCheck a useful tool and that the concept will prove useful for those with other disabilities.
Highlighting the need for My HemiCheck
Rachel Haine, who is aged 26 and has right-sided hemiplegia, graduated from the University of Bradford with a BSc in Bioarcheology in the summer of 2012. After looking for a job for over a year, she went along to her job centre in April 2013, thinking it may help her find employment.
She had a meeting with a Disability Employment Advisor at her local job centre which did not go well at all. Rachel says,
I tried to explain how hemiplegia affects me, including the hidden effects but she just didn’t get it all. I felt really frustrated because I was repeating myself but she just wasn’t listening. Eventually, I left, feeling like we’d had a breakdown in communication. It felt awkward and uncomfortable, not friendly at all.
Rachel felt that as she wasn’t able to explain her disability verbally, it might be better to put it down on paper. So she created a concise list detailing how the condition affects her. As Rachel has right-sided hemiplegia, she wears a splint on her right arm and right leg to aid movement. In addition to her physical disability she has less obvious issues such as fatigue, specific learning difficulties, processing issues and a difficulty with handwriting.
Rachel went back to the job centre and says,
I gave the list to the advisor and asked her to read it. It was then that I felt her attitude changed. She read it and began to ask me questions. Rather than me talking at her we began to have a dialogue. Finally she began to understand what hemiplegia involved for me. Seeing it written down takes the emotion out of it and makes it very factual. Once communication became more positive she started to suggest things that were more helpful for me.
After a few months, Rachel found a job and started working in September that year. Rachel effectively created her own My HemiCheck and highlights how it can be a really useful tool.
Rachel intends to use My HemiCheck at the British Sign Language Club she attends. She has noticed her social communication issues have led to some difficult situations at these classes.
There are a few things that have happened that may have turned out differently if they had understood that I have hemiplegia. I am going to give My HemiCheck to the Club leader.
My HemiCheck in practice
Conor is 16 years old and currently in Year 10 at a mainstream school, Blessed Thomas Holford in Altrincham. He should be in Year 11, but he repeated the nursery year when he was in primary school due to ill health.
Conor was just 11 weeks old when a dissected artery led to a stroke to the right-hand side of his brain. This left him with left-sided hemiplegia. What this means in physical terms is that he has no use of his left hand or gross movement of his left arm. He has a slight limp on his left leg and has spatial awareness problems. Occasionally, Conor has seizures that are linked to growth spurts or underlying health problems (colds, coughs, flu). In terms of non-physical problems, Conor has global learning issues and difficulty with memory. For example, he finds it hard to remember things when he is doing school work.
Alex, Conor’s father, was keen to try out My HemiCheck for his son to use in the school environment. Alex says,
I wanted to provide a concise report about Conor so that the teachers could differentiate work and have a better understanding of his hemiplegia
My HemiCheck has been well received in Conor’s school and the special educational needs co-ordinator (SENCO) is delighted that such a tool exists.
The SENCO has distributed it to Conor’s teachers, which has led to a greater understanding towards Conor from his subject teachers.
This is a really useful tool to complete and provides a detailed, personal summary of Conor’s condition. I will be recommending it to other parents who have children with hemiplegia.
Conor agrees with his father and says,
I found it easy to fill in on the website. It shows my teachers what help I need in class.
Where to find help
HemiHelp is the UK’s national charity for hemiplegia. It provides information, support and runs events for children with hemiplegia and their families as well as for professionals (medical and educational) involved in their care. As part of Hemiplegia Awareness Week 2015, HemiHelp launched a short video explaining what hemiplegia is. It can be viewed here.
The Children’s Hemiplegia and Stroke Association (CHASA) is a US non-profit organisation dedicated to improving the quality of life for children, teens and young adults who have hemiplegia.
Strokidz is a group located in Melbourne, Australia that was formed to provide support for children and families affected by stroke.
*young adult’s name not given as from anonymous members’ survey.