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Spring 2021
Headway
News
The magazine of Headway - the brain injury association
“There’s
nothing minor
about any
head injury.”
GB Hockey star
Alex Danson-Bennett
MBE
Concussion A gift to Inside your
myth-busters mum incredible brain
Page 13 Page 16 Page 28
www.headway.org.uk
02 Call our nurse-led freephone helpline 0808 800 2244
Welcome
Welcome to the spring Thank you to everyone who has already
donated to Headway. Your support
edition of Headway News. means the world to us. If you haven’t
The pandemic has dominated our lives already made a donation and feel you
over the past year. Our regular activities can afford to help safeguard our future,
have been hugely disrupted, altering our please consider doing so at
perspectives and re-shaping our plans. www.headway.org.uk/donate or to your
We all long for a return to something local group or branch, details of which
approaching normality. can be found on our website.
The opportunity to meet with family and While much of society has been forced Who we are
friends to enjoy the everyday social to shut down due to Covid-19, elite-level Headway is the leading UK-wide charity
interactions that can play such an sport has continued. For many, this has that supports people to rebuild their lives
important role in our lives is something provided a welcome relief and a means after brain injury through the provision
we are all desperately looking forward to. of channelling emotions. For others, of information and support services
it represents a lack of consistency in across the UK. To find out more, visit
For brain injury survivors and carers the way lockdown rules are applied in www.headway.org.uk or you can call the
in particular, the easing of restrictions different sectors of the entertainment freephone helpline on 0808 800 2244 if
cannot come soon enough. Whether industry. you need support.
it is access to social interaction,
rehabilitation, or carers’ respite, there The continuation of sport has brought
is no doubting the pressures and with it yet more concerning stories
frustrations being endured. of sportspeople having to take early
retirement as a result of sustaining
Go digital!
However hard it has been for us, we repeated concussions. And it’s not just If you’d prefer to receive Headway News as
should not lose sight of the fact that footballers and rugby players. an email then let us know at
over 123,000 people have lost their headway.org.uk/tick-yes
lives to Covid-19 in the UK since the In this edition of Headway News,
pandemic began. My thoughts are with Monica Petrosino, a Team GB ice
the families who have lost loved ones hockey player, talks about a serious
to the virus, particularly those who are
associated with Headway.
concussion ending her career at the age
of just 24, while on our website you can
Essential contacts
read about Eleanor Furneaux who was Headway office:
However, the development and also 24 when she was forced to quit the Bradbury House, 190 Bagnall Road, Old
impressive delivery of vaccines by GB Skeleton team for the same reason. Basford, Nottingham NG6 8SF
the NHS has given us all a degree of Telephone:
optimism and it’s important to remain Meanwhile, our cover star is Olympic
gold medallist Alex Danson-Bennett 0115 924 0800
positive about the future. But there is a
MBE, who herself had to quit the sport enquiries@headway.org.uk
long way to go and many challenges to
overcome before all Headway groups she loved due to concussion. Alex, who Nurse-led freephone helpline:
and branches across the UK can fully has now become a patron of Headway, 0808 800 2244 (9am - 5pm, Mon to Fri),
reopen their services. I would like to sustained her injury while on holiday. But helpline@headway.org.uk
thank all my colleagues throughout the while her injury is not due to sport, it is
Website:
Headway network for their extraordinary a stark reminder that even a minor head
injury can have a major implication. www.headway.org.uk
efforts to maintain these services and
provide vital remote support to people Advertising:
Concussion is an issue that affects directorofcomms@headway.org.uk
with brain injury and their loved ones
all sports, at all levels. On a positive
during the pandemic. Fundraising:
note, our Concussion Aware campaign
continues to make a difference as, with projects@headway.org.uk
Every day that passes adds further
financial pressure onto Headway UK the help of elite level athletes willing to
and local Headway charities. Whether share their experiences, we increase
it’s our shops remaining closed or awareness and understanding.
the understandable reduction in all
fundraising involving face to face Peter McCabe
activities, the challenge to survive the Chief Executive
coming months remains very clear.
DISCLAIMER: Advertisements in Headway News are accepted on a commercial basis. By publishing an advertisement, Headway does not indicate endorsement of the product or services provided by the advertiser.
The views expressed in articles or letters reproduced in this magazine do not necessarily represent Headway policy or the views of Headway’s Board of Trustees. They are primarily intended to provide the broadest
possible views from which readers may form their own Registered with the Charity Commission for England and Wales (Charity No 1025852) and the Office of the Scottish Charity Regulator (Charity No SC 039992).
www.headway.org.uk 03
Your
Neve
time t r. I spend
horrif rying to fo my
ic inci rget t
fellow de he
TBI su nt althoug
r v i vors h as
views
get da
ily rem know, you
inders
.
Emma Louisa
The anniversary of a brain injury can be a particularly difficult time for
survivors and their loved ones, but people have many different approaches
Ha
to marking a day that shaped their lives like no other. For some it’s a case less dif s gradually be
of sadness and trying to forget, while others celebrate their new life and do som ficult and last come
e fe
hopes for the future. or fund thing positive w we try to
raising - a nice
celebra ch lu
We asked our social media followers to tell us how they mark their te that allenge. I now nch
rather th my husband try to
brain injury anniversary... an the tr survive
event a d
nd after auma of the
math. It
adjustm ’s an
ent .
I stil
that I l grieve for
cognise at was o the ‘m
ear I re ber wh
even n
thoug the annive e’
Every y remem
a n d I hard I h it is rsary,
the date remember how l, and a
9 yea pproaching Linzi Blair
ed, ona rs.
happen become functi o hard
worked
to
o m I worked s
h .
er for w usband
rememb child and my h
- my
Sue French
d take
c e le b rate an er. Since
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Sarah Gruen or dinn on life
e out f
Althoug my wif m
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what I’v h I am frustra my in ju r y
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tic
e lo ted re.
time, so st, you can’t tu by a s c h anged so much mo
I use th rn back h li f e
iate
think ab e
out the anniversary to apprec
and wh pos
at I’ve le itive aspects
a
the exp rnt through
erience
.
Philip Bush
Cerys Willoughby
I give th
a
at life wit nks for my seco
h a few nd chan give
definitely glasses ce .. . and nd to the
changed of wine. b r a t e
live for to m
day, don y outlook on life
It has I cele eing alive a at saved
b h
that I ha ’t worry ab . Id s f o r eam t who
ve no co out anyth o thank rful NHS t and family
n e
family re tr o l o v e in g wond .my friends o give me
gularly h r and tell my e.. et
I love th
ow muc
h my lif till continu rt I need.
s p op
em. the su
Bal Tawana Elizabeth Moxey
Visit our website at headway.org.uk/about-brain-injury for information on the effects of brain injury and practical guides to
help you cope. You can also get in touch with our helpline to talk through your concerns and get information that is tailored to your
circumstances. Contact the team on 0808 800 2244 or helpline@headway.org.uk
04 Call our nurse-led freephone helpline 0808
Wonga Wong 800 2244
In this issue...
06-09 Latest news round-up
18-19 How to tame
your anger
10-11 “There’s nothing minor
about any head injury” 20-23 Bored at home?
Get FUNdraising!
Alex’s story
12 “I want concussion
awareness to become 24-25 Seeking justice for
brain injury survivors
an absolute staple in
sports”
Monica’s story
26-27 “A hole in your head is
a lot less fashionable
13 Concussion
myth-busters
than a cycle helmet”
Haydn’s story
14-15 Back behind the wheel
28-29 Inside your
incredible brain
16-17 A gift to mum
30 Creative expression
‘Acceptance’ by Helen Wilson
Go green!
Did you know that the plastic wrap used for
Headway News is recyclable? It’s made from
polythene film and starts to break down after
just three months. Recycle with carrier bags at
larger supermarket stores, not at the kerbside.
Do your bit to help save the environment and
recycle today.
www.headway.org.uk 05
Latest news round-up
With news of your charity’s ongoing work Blue Badge
to improve life after brain injury disparity
MP demands government for hidden
takes action to increase disabilities
access to rehabilitation According to research
for brain injury survivors conducted by the BBC,
eight out of 10 councils have
higher approval ratings for
Chris Bryant MP, Chair of from across the country saying: “I
the issuing of Blue Badges
recognise the vital work of charitable
the All-Party Parliamentary organisations such as Headway… for people with physical
Group (APPG) for Their work is invaluable not only in disabilities than their non-
Acquired Brain Injury, raising awareness but in providing visibly disabled counterparts.
has called on the hands-on help and support to
patients, families and carers.” Of those 109 councils who provided full
government to improve responses to the BBC, 10 revealed that
neurorehabilitation services Commenting on the debate, Sarah that the difference was greater than 50
for brain injury survivors. Russell, Public Affairs Manager at percentage points.
Headway, said: “We are very grateful
Addressing the Minister of State for Headway previously welcomed the
to Chris Bryant and his colleagues on
Care, Helen Whately MP, Mr Bryant laid the APPG for Acquired Brain Injury for decision to extend the Blue Badge scheme
back in 2019 but is concerned that more
out a series of ‘demands’ of government their continued work in this area.
work needs to be done in order to properly
which included the creation of a
recognise the impact of hidden disabilities.
national neurorehabilitation strategy. “The impact of this pandemic on
He also requested “a guarantee brain injury survivors and their families Sarah Russell, Headway’s Public Affairs
from the government that all those cannot be underestimated. In a survey Manager, said: “It is worrying that there
[neurorehabilitation] services and conducted with survivors we found appears to be a lack of understanding
more will be reinstated” following the that 57% of those who sustained their about how debilitating the effects of hidden
pandemic. injury in the last two years said their disabilities can be.
rehabilitation had been negatively
“Brain injury survivors can be faced with
Chris also singled out Headway for affected. a whole range of challenges post-injury,
praise, highlighting his appreciation
“We are pleased that the work done including fatigue which makes walking
for the work done by Headway and long distances difficult. They should be
recognised the scale of the financial by Headway groups and branches
able to access a Blue Badge where they
challenge we are facing as a result across the country in supporting brain
are entitled to under the hidden disability
of the pandemic. He said: “Headway injury survivors has been recognised rules, which would be hugely helpful for
is also a wonderful organisation, by the Minister. But we hope that them in living an independent life.”
although like many charities in this more can be done by the government
field, it is having a really difficult time to support the continuation of these The BBC also reports that the online
vital services in our communities.” process is overly long and complicated,
this year.”
meaning people have found it difficult to
In her response to Mr Bryant, Helen navigate.
Whately MP, praised the contribution Sarah added: “It is hoped that this
of Headway groups and branches will serve as a wakeup call to councils
that they need additional training in
recognising the effects of hidden
disabilities, such as brain injury, and that
the government takes the steps necessary
to ensure the application process is
consistent, accessible and fair.”
06 Call our nurse-led freephone helpline 0808 800 2244
Diop concussion shows new subs rule
‘deeply flawed’
The first use of a concussion first player to be substituted via the new of exacerbating the injury to his brain
protocol. during the seven minutes he was allowed
substitute in football in the to play on before half time.
UK has highlighted the “The decision to allow Issa Diop to return
‘deeply flawed’ nature of to the field of play after being assessed “Instead, he could have had a longer
for concussion in just two minutes while assessment, which would have included
the newly-introduced rule, still on the pitch shows just how deeply the 15-minutes of half time, in a quiet
according to leading brain flawed this new protocol is,” said Peter treatment room. This would have given
injury charity Headway. McCabe, Chief Executive of Headway – the medical team more time to make their
the brain injury association. decision.
After 36 minutes of an FA Cup match
between Manchester United and West “When this rule was introduced to much “The new protocol has failed
Ham United on 9 February, Anthony fanfare, we warned that it would make
Martial (Manchester United) and Issa very little difference in terms of protecting
its very first test. FIFA and
Diop (West Ham United) clashed heads players from the risk of more serious injury. IFAB must act now to alter the
at a corner kick. rule and introduce temporary
“Had football’s authorities followed the
The players received on-pitch treatment advice of Headway and other leading
concussion substitutes to avoid
for two minutes before they then both experts by introducing temporary such unacceptable risk being
returned to the field of play, only for Diop substitutes, as successfully used in other taken in the future.”
to be removed at half time, becoming the sports, Diop would not have been at risk
www.headway.org.uk 07
Latest news round-up Ryan reaches
With news of your charity’s ongoing work
to improve life after brain injury out to Raul
Former Premier League
and England footballer
Ryan Mason has offered his
support to Raul Jimenez and
his family after the Wolves
player suffered a fractured
skull in a game against
Arsenal on 29 November.
Jimenez required oxygen
on the pitch before being
taken to hospital for further
treatment.
Ryan, who is now a Headway
Ambassador, suffered a similar injury in
‘Lawsuit should be a 2017 while playing for Hull City against
Chelsea. Despite a valiant attempt to
wake-up call’, says Headway regain fitness, Ryan was unable to play
again and retired on medical advice at
the age of 26.
Headway responded to spots and not knowing where I was “I was horrified Ryan
Mason
for a few seconds, sometimes I would
news of a possible class pass out completely. It was just an
to watch the
action lawsuit on behalf accepted part and parcel of training. incident in the
of former rugby players, I really wished that I had ended my game,” said
saying that all contact career earlier, maybe my diagnosis Ryan.“It has
might not be so bleak.”
sports should be closely brought back a
monitoring developments. Peter McCabe, Headway’s Chief lot of negative memories for me
Media reports suggest that eight
Executive, said: “Reports of a and my family, who had the
possible class action lawsuit on agony of not knowing whether I
retired players, including England’s behalf of former rugby players should
World Cup winning hooker Steve be a wake-up call for all contact
would pull through.”
Thompson, are taking action against sports. It took similar action in the
World Rugby and their respective Raul is now making good progress
USA to force the NFL to recognise towards a return to play, undergoing
national governing bodies. the seriousness of the issue and fitness work as part of his rehabilitation.
Thompson, 42, was diagnosed with accept that it simply had to change in
early onset dementia and probable order to better protect the short and He has nominated Headway as
CTE in November. Speaking to long-term health of players. one of two charities to benefit from
the Daily Mail, he said: “I have no a remarkable appeal set up by his
“But let’s be clear: this is not an issue devoted supporters who wished to fund
recollection of winning the World for rugby alone. All sports owe a duty
Cup in 2003, or of being in Australia a banner of support.
of care to those who take part. Given
for the tournament. It’s like I’m what we now know about concussion Thanking his fans, Raul said: “I am
watching the game with England and the cumulative, long-term effects delighted that we have such a large
playing and I can see me there, but I of repeated blows to the head, no amount of money left over to give to
wasn’t there, because it’s not me. sport can afford to be complacent in organisations that will make sure that
“During training it was not uncommon the way it addresses head injuries.” the right people benefit from all the love
for me to be left dazed, seeing white and generosity I received.”
08
08 Call our nurse-led freephone helpline 0808 800 2244
TEST YOUR NERVES ay!
skydiving for Headw
by
Ever wanted to jump out have devised extensive Covid-
secure protocols to ensure your
of a plane at 10,000ft,
safety, putting this challenge of a
freefall for 45 seconds lifetime firmly on your
then take in the glorious 2021 bucket list.
view as you gently glide Jumps are available
to the ground? Well this throughout the year
is your chance, and all for at airfields across the UK, no
a good cause. training is required, and all we ask
is that you raise at least £395 for
While many fundraising events have Headway.
been cancelled or postponed over
the last year, skydiving organisers
Tempted? Head over to headway.org.uk/skydive to find out more
and book your experience!
Are you a Friend
of Headway?
JOIN
Becoming a Friend of access to a free or discounted
will writing service and a copy of
Headway member is a
this very magazine delivered four
!
great way to support times a year.
the charity, accessing a
range of benefits while
helping us to continue
improving life after brain
There are annual and lifetime
options available and a discount
for brain injury survivors and their
loved ones, and even ways to buy
NO W
injury. a membership as a gift.
Every member receives a Just complete the simple form
Headway pin badge and at headway.org.uk/friend to
wristband, a discount on our become a Friend of Headway
award-winning publications, today.
www.headway.org.uk 09
“THERE’S NOTHiNG MiNOR ABOUT ANY HEAD iNJURY.” Alex Danson-Bennett MBE is recognised as one of the finest hockey players Britain has ever produced. Having been vice-captain of the GB women’s hockey team for their historic gold medal performance at the 2016 Rio Olympics, she competed in multiple international championships amassing 306 caps for her country and a record- equalling 115 goals. But everything changed in an instant when a seemingly mild head injury had a devastating impact that would force her to retire from the game. Alex was on holiday in Kenya with her then boyfriend, now husband, who is also called Alex. The couple were enjoying a meal in a local restaurant when she threw her head back in laughter after he told a joke, hitting her head on the brick wall behind. “At the time I thought ‘that was hard, that wasn’t great’,” said Alex. “But I just went back to the apartment, went to sleep and ignored it. When I got up the next morning things got progressively worse. 10 Call our nurse-led freephone helpline 0808 800 2244
“Two weeks before my injury I was walking
the GB women’s hockey team out as
captain. Two weeks after, I couldn’t walk to
the bathroom or hold a conversation.”
“I returned home and had to lie in a suits how I respond to artificial light. I With a passion for raising awareness
dark room, I couldn’t tolerate any noise think there’s a retraining your brain part of brain injury, Alex has become a
or sound. I really wasn’t very well. Six of recovery, so it’s important to work Headway Ambassador. She supports
weeks after the injury I started being and positively challenge my brain. the charity’s Concussion Aware
violently sick and having seizures, so I campaign to help more people
was rushed into hospital.” “I would say life is very different to enjoy sport while having a greater
what it would have been if I hadn’t hit understanding of the dangers of
Alex received a wide range of my head. Two weeks before my injury I concussion.
tests, eventually being diagnosed was walking the GB women’s hockey
with a mild traumatic brain injury. team out as captain. Two weeks after, I “I know my injury wasn’t in sport, but
Having experienced concussion before couldn’t walk to the bathroom or hold a I don’t want anyone to go through
during her hockey career, she was conversation. what I’ve gone through in the last
shocked to be told that it could take two and a half years,” said Alex. “If
many months to recover from the injury.
“I’m not the same as better concussion protocols, early
management and early treatment can
Alex said: “In the beginning I literally
couldn’t do anything, but then you have
I was but I’m living a improve your recovery, which I believe it
can, then I’d like to see that in place.
to manage how much you take on as
you start to get better. I’d get frustrated
happy, fulfilled life, I “My advice would be to not do anything
because I’d want to do something then just have to manage until you’re symptom-free. A few weeks
seems like a long time, but two and a
very quickly feel terrible.
“I was very slowly building back up,
the symptoms which I half years feels like an eternity so listen
to your body, rest and don’t rush back.”
and in the early days my husband had believe, in time, will
to do everything, like walking me to the
bathroom, liaising with doctors, driving go. If I can get to the Alex
me to every appointment and cooking
all the meals. He was a constant source end of 2021 and be
of support while every day I felt like I
wasn’t the person I used to be.
headache-free, I’ll be
“It’s been about two and a half years absolutely delighted.”
now and I’m much, much better than
I was. But I still get headaches every Alex recently found out that her mother
day, I still have to manage the cognitive regularly used the Headway helpline
‘load’, and screens are a big problem for support in the weeks and months
for me.” following her injury.
In January 2020 Alex returned to She said: “For a family it’s a horrendous
hockey, but quickly realised that she time, to see your loved one suffering
would have to retire due to the ongoing so badly with no one helping or
effects of her brain injury. Since then, understanding. But Mum used to call
she has taken up coaching, runs her the helpline just to speak to someone,
own hockey academy and works with and they reassured her and gave her
Vitality to help people improve their snippets of information about brain
health. Alex and her husband are also injury.
busy with the arrival of a new addition
“She found it an incredible service
to their family, a daughter born in
that she accessed regularly. I was too
January 2021.
unwell to call myself, but as a resource
She said: “I manage my week now, for the family, it was incredibly useful.”
spending time outdoors because that
www.headway.org.uk 11Monica’s
story:
“I want concussion
Monica Petrosino
awareness to become
an absolute staple in
sports.”
Monica Petrosino dedicated she sustained
another hit
almost 20 years to ice hockey during the
and ascended to the elite level 2019 World
of playing for Team GB, but Championships.
her dreams were tragically “I eventually decided that it was
dropped when a serious time to retire. I still get upset about
concussion forced her to the fact that I can’t play.”
accept retirement at the age Monica’s retirement didn’t end her
of 24. career in ice hockey though, as she
decided to start coaching instead.
“During a game in 2014, I was skating She is also now studying a degree in
at full pelt when someone took my feet Psychology.
out from underneath and another came
straight into me,” said Monica. “My “There is a life after sport, and it isn’t
head slammed onto the ice. I don’t think what completely defines you. If you have
anyone realised the severity of what had to step down because of a concussion,
happened.” you will get that amazing buzz from
something else.”
Monica was sent home and had severe
headaches and sickness, but no-one Monica is now a keen advocate of
suspected a concussion. raising concussion awareness. “I want
concussion awareness to become an
“The next day I was brought into another absolute staple in sports. I want there to
game. About five minutes in, I completely be protocols, not just at GB level but at
blacked out. I was taken to A&E, which is a club level as well. I don’t care if I need
where the injury was picked up. to shout at the top of my lungs to tell
everyone repeatedly, everyone needs
“For the next three to six weeks I had to know.”
sickness, nausea, headaches… I felt
sleepy all the time, but the worst symptom “I eventually
was speech disturbance. decided that
“I really struggled for a year to get back
into hockey. My motivation and reaction
it was time to
times were drastically different.’” retire. I still get
Despite the challenges, Monica’s love upset about the
and tenacity for the sport saw her being
reselected for the GB Women’s Senior fact that I can’t
Team. But a series of minor knocks to
the head along the way culminated when
play.”
Hockey teammates
Monica with her GB Ice
12 Call our nurse-led freephone helpline 0808 800 2244ncussion
Co RS
H-BUSTE
MYT “I didn’t lose consciousness, so surely it
couldn’t have been concussion?”
nced a concussion. In fact,
A person does not need to have lost consciousness to have experie
less than 10% of concussions result in loss of consciousness.
“I don’t want to let my team
down by being removed
from play if I have a concus
If there is any suspicion
sion.”
of concussion, it is important to take
on through a game can make the imp an ‘if in doubt, sit it out’ approach.
act of a concussion worse. Parado Pushing
team’s chance of success even mor xically, doing so can jeopardise a
e because the concussed player may
not perform as well as normal.
and they were
“My friend had a concussion
ly be fine if I get a
fine after a week. I’ll probab
concussion too.” ries are ever the same and experie
nces will vary from
two brain inju
It is important to remember that no location of injury and personal
end ing on thin gs such as the force of the impact,
pers on to pers on dep what your own body is telling you
renc es. It is imp orta nt to ass ess each case differently and listen to
diffe
about how you feel.
“I hit my head when
I got concussion. Su
doesn’t mean I have rely that
A concussion happens
b r a in in jury?”
when a force to the head causes the bra
this is considered a bra in inside to shake aroun
in injury although it is cla d the skull. Technically,
ssified as a mild brain inju
ry.
“If you don’t have any symptoms immediately, you
don’t have a concussion.” t for several hours or and may not manifes
Symptoms of concussion can often be delayed in their presentation
even days after the incident.
a s y o u f e e l better.” ning
t o p l a y a s soon t return to play
or trai
urn no
“You can nerdeatconcussion or suspected coevnc
l th at yo u do ast three
ussion, it is vita ad vi ce is to leave it at le
e. Th e
stai en if you feel fin
– process. e
If you have su al professional protocols in th
re d to do so by a medic yo ur sp or t’s return-to-play
until cl ea ay, followin g
returning to pl
weeks before
www.headway.org.uk 13BACK BEHIND
THE WHEEL
Driving might not be possible for everyone after brain injury, but for many people it’s a
realistic target that can greatly increase independence and quality of life. As a complex and
potentially dangerous activity, it is important that everyone approaches driving carefully and
follows the legal requirements.
Driving FAQs a driver’s field of vision. The risk of
experiencing a seizure while driving can
authority by using the government
website (www.gov.uk).
Here we answer some of the also make it unsafe for survivors with
epilepsy to drive. You should also tell your vehicle
helpline’s most frequently insurance provider about your brain
asked questions on driving. Brain injury survivors who have difficulty injury.
managing their emotions may react
How can driving be worse to stressful situations that may It can take over six weeks in some cases
arise when driving. to hear back from the licensing authority.
affected by brain injury? In the meantime, you should consult
Driving is a complex activity requiring A survivor’s ability to drive may change your doctor or neurologist as to whether
cognitive and physical skills, as well as over time as the effects improve or you can continue driving while waiting
the ability to co-ordinate these. Some worsen. for a decision.
of the key skills that driving relies on
are commonly affected by brain injury, Who do I need to inform Following the decision, you may be
allowed to continue driving as normal
such as being able to react quickly about my brain injury? or there may be conditions such as
to changing situations on the road,
remembering routes, processing different By law, you must tell the licensing needing to take an expert driving
things simultaneously and concentrating authority (the DVLA in England, assessment, having the vehicle adapted
for sustained periods of time. Scotland and Wales and the DVA in to make it more suitable or having a
Northern Ireland) about your brain injury, time-limited license after which you will
Dizziness and balance problems may as they are responsible for making the be re-assessed. Your license may be
cause difficulties with the motion of decision on whether you are safe to withdrawn, but you may have the option
driving, while visual problems may affect drive or not. You can notify the relevant to reapply later.
14 Call our nurse-led freephone helpline 0808 800 2244“I felt so elated and free again”
complications following surgery I spent 100% and was pleased all was ok.
Paula
time on the neuro-rehab ward before I then called the DVLA again who
finally returning home. couldn’t have been more helpful and
advised that because my doctor
“It was fabulous to be home, but it soon had given me the green light, I could
became apparent how much I would drive from that point and that written
rely on my husband and family for care. confirmation would be sorted in the
I was completely exhausted, confused background while my licence would be
and very emotional, but also determined returned in due course.
to get better.
“I went straight to my car and went for a
“I realised very quickly very short drive. Yes, I was very nervous,
that driving would be but I felt so elated and free again. I
made a promise to my family never to
out of the question for a drive if I was having a particularly bad
number of months and day with fatigue.
Brain injury survivor
was advised by the rehab “If I can offer one piece of advice to
Paula Barlow shares her
experience of returning to
team that six months was others, allow yourself time to heal. I
have a wonderful family and the most
driving after brain injury. normal. I contacted the beautiful grandson, everything I need to
DVLA who were excellent get better for. Healing is a long process,
“In April 2020 I had a sub-arachnoid be patient.”
brain haemorrhage. I had for many in helping me with the
months suffered really bad headaches necessary form that was
which had been misdiagnosed as
migraines.
very straightforward and
notified my insurance
“I collapsed at home on a very ordinary
Sunday afternoon and was lucky that
company.
my husband was home. I have no
“I decided after five months that I
recollection of the events following but Paula’s grandson
wanted to drive again. I spoke at length is the perfect
was taken to the local hospital and then motivation in her
to my doctor and had an up-to-date recovery
transferred to Royal Preston Hospital
sight test to ensure my vision was
for treatment. After having a few
Get support
You can find out
more about the legal
requirements and
support that is
available to get you
back to driving in the
Headway booklet
Driving after brain injury.
Contact the
Headway helpline on
0808 800 2244 or
helpline@headway.org uk
or download now from
headway.org.uk/information-library.
www.headway.org.uk 15A gift
to mumDebra Jones sustained a traumatic brain injury while
on a night out with friends between Christmas and
New Year in 2015.
Her story and experience of living with a brain injury will resonate with many
– as will her frustration and anger about a general lack of understanding
about the long-term and often hidden effects of brain injury.
It was a frustration also felt by her family. Until, that is, her son
Kieran Nolan Jones decided to make a film documenting the effects
of Debra’s brain injury. The result, called Jelly Brain, is both powerful
and emotive.
Abi, Debrah and Kieran
16 Call our nurse-led freephone helpline 0808 800 2244We spoke with Kieran to ask
him about the challenges
and rewards of making such
a personal film.
“Ever since I was 11, I have been
interested in filmmaking,” said Kieran,
now 29. “I had always harboured
ambitions to have a career in television or
film. Those hopes were enhanced when
I was accepted onto a post-graduate
course in production management at the
National Film and Television School.
“I was 24 at the time and living at home
with my mum and sister, Abi. In what
now seems like a classic piece of role
reversal, Abi and I stayed in one night
just after Christmas while Mum went out
with her friends.
“Abi then received ‘the call’ at 1am.
Mum had fallen and hit her head. When
we arrived at the hospital, she was “She was always in pain. Her personality “Thankfully, they agreed – largely
conscious but glassy-eyed. At first, had changed and she was always angry. because they thought it would never
we were relieved, thinking it was just actually happen! But happen it did – and
“It was as if there was a toxic cocktail of Jelly Brain is the result.
a concussion. But she then started
emotional change, lack of empathy and
retching and asking me to help her.
constant pain.
“She was immediately whisked off
“It was incredibly
“The anger was also fuelled by a lack of
for further examination before being
understanding among friends of what
challenging for all of us.
transferred to a neuro ward. It was a
scary time as Abi and I gradually came
she was going through. She kept hearing Despite being around my
‘you look better’, or ‘glad to see you’ve
to the realisation that something was
recovered’, when in reality she was really friends and colleagues who
seriously wrong – a feeling that was
confirmed when we overheard a nurse
struggling. agreed to help me with the
saying Mum had fractured her skull and “I was desperate to help her raise filming, allowing me to be
sustained a bleed on the brain. awareness and to give her a voice, so
I asked Mum and Abi to appear in a in the unusual position in
“Despite this, Mum was discharged after
just seven days and it was down to me
documentary film that would shed light front of the camera for a
on the hidden effects of brain injury and
and Abi to look after her. She struggled
how it can impact the entire family. change, we all shared far
to walk unaided and needed help with
basic tasks such as showering. more of our feelings than we
had done previously.
“It was a cathartic experience for us
all. But most of all it’s helped to raise
awareness.
“It’s my gift to Mum.”
You can watch the 15-minute-long
Jelly Brain documentary on Headway’s
Brain injury and me website at
braininjuryandme.org.uk, or
by searching online for ‘Jelly Brain
Directors Notes’.
www.headway.org.uk 17How to
tame
your anger
Damage to the brain can cause emotional
and behavioural changes, so many survivors
experience problems managing anger. This
can lead to unpredictable, destructive, and
sometimes aggressive behaviour that can put
a strain on your relationships, work life and
everyday activities.
18 Call our nurse-led freephone helpline 0808 800 2244Top tips for brain Tips for
injury survivors family,
If you find that anger affects you after 8. Remember, everything becomes
friends and
brain injury, try these tips to help keep it
under control.
more difficult when you are angry.
Remind yourself that you deserve to
carers
keep yourself calm in order to make
1. Learn to appreciate just how good decisions or put your point
Witnessing someone
powerful your thoughts are. They across. having an anger outburst
are automatic and can cause you
to become angry for no apparent 9. When you feel yourself getting
or being on the receiving
reason. angry think of someone who end of someone’s anger
2. It is only your interpretation of a
normally calms you down. What can be very hard. It can
might they say to you if they were
situation that makes you angry. You there? Or think of a special calming
be particularly hurtful if the
may be right, but always think about place, piece of music or picture. Try anger is directed at family
other interpretations first. to make this part of a routine that members, who are already
you can use regularly to help you
3. Write down how you feel when
cope.
upset and perhaps angry
you are angry. You can show this themselves.
to someone you trust later and get
another point of view. Remember, however, that even if the
anger is being directed at you, this is
4. Practise noticing how tense your not personal so try not to get into an
body feels when you are angry, then argument.
relax and feel the difference. You will
then be able to measure how angry When you discover a trigger, help your
you are, when compared to how loved one to find another way to look
you feel when relaxed. at the situation or try to direct their
attention away from the cause. This
5. Try to notice the warning signs of may involve moving them to a quieter
your anger, such as shoulders rising location.
up, breathing faster, clenching fists
etc. Remove yourself from situations Think about strategies to help yourself
when you feel those warning signs. such as removing yourself from the
area or having your own coping
6. Practise relaxation and breathing 10. Record when these ideas have statements, for example “That felt very
exercises to calm down. helped. This will make it more likely hurtful, but I know you didn’t mean it
that you will use them again when that way.”
7. Distract yourself by doing
you have angry feelings in the
something you like, for example
future.
listening to music.
healthy. However, when it gets out of conscious effort to calm ourselves down.
What is anger? control, it can become destructive and
Anger can be healthy if managed
lead to problems.
Anger is one of many emotions that properly. This involves noticing that you
someone is likely to feel after brain injury. Inevitably there are times when things are angry in the first place, keeping calm,
It can either be the result of damage to are out of our control and it is natural to and solving the problem in an assertive
parts of the brain that control emotion, feel frustrated. However, if we start to way. If you manage your anger in this
or because the brain injury survivor is shout and blame others, it is important to way, other people may not even realise
frustrated with the effects of their injury. be able to identify that this type of anger that you were angry at all.
is unhelpful, and we should try to make a
Like all emotions, anger is normal and
It is important to seek professional support if anger becomes troublesome. For more information, tips and guidance, see the
Headway booklet Managing anger after brain injury, available at www.headway.org.uk/information-library. You can also
contact the Headway helpline on 0808 800 2244 or helpline@headway.org.uk for support and guidance.
www.headway.org.uk 19d at ho me ?
Bor e
dra ising!
Get Gaming
There’s no doubting Fitness at home Playing games for a good
cause? What could be better!
that as with all aspects Set yourself a physical
of life, Covid-19 has challenge and track your This one’s for the keen gamers out there!
You can now link your Twitch account to a
had a dramatic impact progress with Strava.
JustGiving page to live-stream your play,
on the way people Connect your JustGiving page with asking people to sponsor you to complete
fundraise for charity. the Strava app on your smartphone, a challenge of your choice while they
marvel at your gaming skills.
With numerous events smartwatch or fitness tracker to keep
track of your progress while helping
cancelled or postponed, your family and friends to stay updated.
It could be taking on a FIFA marathon
our army of budding or tackling a tournament in Fortnite –
It’s a great way to make your daily just choose your game and make your
Headway Heroes and exercise count, and research from playtime count!
their big fundraising JustGiving shows it can boost the
plans have been left amount you raise – a win-win!
frustrated.
However, we’ve also seen a Get started
wealth of new, creative ways to Virtual gatherings Head over to justgiving.com to set up your
new page. After signing in and selecting
raise money for Headway, with
many people ramping up their Stay connected with friends Headway – the brain injury association or
everyday activities and exercise and family and raise money your local Headway group to raise money
to support their favourite charity! for a good cause! for, you can pick your options and get
The online fundraising website started. You can find guides and tips on
JustGiving has introduced a range While most people had never considered using these fundraising tools at
of exciting new features which Zoom versions of quizzes, bake-offs help.justgiving.com.
make it simple to set yourself a and best hat competitions pre-
pandemic, they’re now an exciting part If you’re stuck for ideas, need guidance on
challenge or organise a digital
of our lives – and a great way to raise running and promoting events, or want to
event from home...
money! find out how Headway can support you,
download our free fundraising guide at
Set up a virtual event on JustGiving to headway.org.uk/fundraising-guide.
collect entrance fees and donations for
your video call.
20 Call our nurse-led freephone helpline 0808 800 2244found Headway, who undergo the
wholesome endeavour of supporting “I am extremely
those with similar injuries or trauma
to mum. I have ever since kept grateful and
them on my radar and would love to
continue supporting people in similar thankful for friends
circumstances.”
and family who
With a keen admiration for outdoor
walking and the continued Covid-19 have contributed to
lockdown having an impact on his
Josh Rawson
mental health, Josh decided to take on my donations page,
a fundraising challenge for Headway,
as the final amount
Introducing
walking 100km over 30 days to
support the charity. In the process, he
our very first
became our first fundraiser to link his reached over
JustGiving page with the Strava app,
Strava a popular system that allows people double my original
to track their activity with a phone,
fundraiser... smartwatch or fitness tracker. target!”
Josh explained: “I loved the technology
Josh Rawson knows all too of this as I was able to have my totalled Asked what advice he would give
well the devastating impact distance add up through my donation to anyone thinking of starting a
fundraising challenge, Josh said:
a brain injury can have on page instead of having to manually
“Definitely initiate a challenge which is
record it.
entire families. In 2015, obtainable and can be broken down to
when Josh was 23, his “It was rewarding to see analytics at a daily routine if possible. This stops it
the end of a walk such as your route, from being overwhelming and means
mother Michelle died from a pace, and distance, along with the that ‘catching up’ can be done if you
ruptured aneurysm. challenges the app offers you to join are unable to contribute on some days.
up with.
“It came as a complete shock that “Make sure it’s something you can
someone who shined so brightly could “The thought of being able to help have fun with if you’re doing it a lot
be gone so quickly with no notice,” people in a similar situation was also - I caught up with a lot of music and
said Josh. great for motivation, as it felt good podcasts, which I was very happy
being able to give back when options with!”
“It was through researching what
were limited in lockdown.
a brain aneurysm meant that I
www.headway.org.uk
Freephone helpline 0800 800 2244 www.headway.org.uk 21T E D y o u r n e w
STA R
a i s i n g p ag e ?
fun d r n t !
o ma k e i t c o u
T a k e t i m e t
You’ve set up your Tell your story! Update people
fundraising page and maybe Record a short video, write a few on your progress
paragraphs or share your favourite
even linked it to your Strava photos that sum up why you’re
Whatever challenge you’re taking on,
post regular updates on your page to
account, so now it’s time to fundraising for Headway. Many of us take your supporters on a journey with
start your challenge. have had our lives touched by brain you. They’re your friends, and they want
injury, so make it personal and your to hear about the good things you’re
Not so fast! It’s important at this stage to friends and family will get behind your doing!
spend a little time improving your page cause.
and telling your loyal fans about your
Be proud of your selfie!
fundraising plans. There are many simple Don’t be afraid to share According to JustGiving, each photo a
and fun ways to market your challenge
Sharing your page is vital to tell people fundraiser posts on their page increases
that can make a big difference to the
about the good work you’re doing. Shout the total raised by 14%. Whether it’s
amount you raise.
about your challenge on social media, running shots, preparation for a head
WhatsApp, email or whatever platform shave or pictures of your virtual quiz,
your friends and family use to boost your sharing photos makes your supporters
fundraising total. more likely to donate.
How did you do?
Once the challenge is over, many
fundraisers breathe a sigh of relief and
move on. But it’s really important to tell
people how you did, which gives a great
opportunity to make one final push for
donations. People will celebrate your
success and be keen to show their
support.
22 Call our nurse-led freephone helpline 0808 800 2244HOLD THE
FRONT PAGE!
Local press are often Other ways you can
looking for interesting get involved
stories about people Set up a Facebook birthday
doing extraordinary fundraiser or simply ask for
things, so why not send donations instead of gifts on
a special day that’s important
them a press release to you.
about your challenge
and see if they want to
share your story?
Keep in touch!
Remember to include When you start planning for
information on: your fundraising challenge, don’t
forget to tell us about it! Our
What is the fundraising event fundraising team are here to
and who is doing it? Make a regular donation by support you with any questions
setting up a direct debit. you may have. We love to hear
When and where will it take
place? Help us by donating to your the inspirational stories of our
local Headway charity shop. fabulous fundraisers, and often
Why are you doing this? feature them on our website and
What’s your connection to Donate via payroll giving. social media.
brain injury and Headway?
Nominate us as your
Send some good quality workplace, school or However you decide to
photographs with your press community group Charity of raise money for Headway,
release. the Year. following these tips
will help you to make a
Remember to include details Leave a gift in your will. massive difference to the
of how people can sponsor lives of those affected by
you! Visit headway.org.uk/donate brain injury. You’re a true
or contact your local Headway to #HeadwayHero!
find out more.
www.headway.org.uk 23SEEKING
JUSTICE For brain injury survivors
Since it began in 2015, the provided to police forces across the identify should they have further contact
UK, as well as prosecutors, appropriate with the criminal justice system.”
Headway Justice Project adults, liaison and diversion services and
has focused on raising other agencies within the criminal justice How does the Brain Injury
awareness of acquired brain system. Identity Card work?
injury (ABI) throughout the “We are also looking at ways to increase “Headway’s Brain Injury Identity Card
the understanding of frontline staff provides survivors with the support they
criminal justice system. within the DWP who regularly come into need, when they need it, by highlighting
contact with brain injury survivors, many the effects of their injury and providing
We spoke with of whom may struggle to communicate or access to 24-hour free criminal legal
Justice Project explain the hidden and fluctuating effects advice and representation should they
of their brain injury.” come into contact with the police.
Manager, Holly
Warner, to find Why is this training so “Our card holders also tell us that they
use their cards in everyday situations
out how it is important? such as when shopping, enjoying a drink
changing lives. “Research demonstrates a high or meal out or on public transport. For
prevalence of brain injury within the many people, the use of their card has
The Justice Project criminal justice system. But through been transformative in promoting their
seems to be going from Headway’s Justice Project, we are confidence and independence.
working to improve understanding
strength to strength, of brain injury to ensure survivors are “I would urge anyone who has a brain
Holly. What are the identified and provided with appropriate injury to apply for a card – they are useful
latest developments? support. in so many situations!”
“We are delighted to have been awarded “As part of the contract we will be Brain injury
an NHS England contract to deliver providing prisoners with brain injury survivor Noelle
acquired brain injury awareness training access to the Headway Brain Injury Robinson
proudly shows
to prisons and probation services across Identity Card on their release. This will her Brain Injury
the country”, said Holly. ensure that survivors will be easier to Identiy Card
“The training forms part of
our wider Justice Project and
complements the training we have “I find stations and trains
truly overwhelming and having my card on
display it actually provoked interesting
“It’s excellent to have discussions and offers of help. When I needed
something to show that support in the station, they didn’t look at me as if I
explains your situation so was stupid and helped me. It gives me
succinctly.” more confidence to travel alone.”
Johnny Armstrong Sue Cunliffe
24 Call our nurse-led freephone helpline 0808 800 2244A survey on
user experience
Headway has issued over 8,000 Brain Injury Identity Cards to
survivors across the UK. We conducted a survey to ask about their
experience of using the card, and the results were overwhelmingly
positive. Here are some of the key survey results:
96%
of respondents
84%
said when they used
thought their Brain their card it has been
Injury Identity Card ‘very helpful’ or
was ‘Excellent’ or ‘helpful’
‘Good’
The Brain Injury Identity Card can be used
in a variety of everday social situations “It means I do not
have to explain myself. People
Where have people used seem to be kinder in terms of
their card? giving me space and time.”
Berniece Szymansk
31%
using public transport
12%
with the police
“Carrying the card makes me
21%
to assist in applying
11% feel safer. I know that if I can’t explain why I
can’t immediately deal with a situation I can
with other emergency flash the card. It will explain to others without
for welfare benefits services
(e.g. ambulance service)
me having to struggle to find the words at a
moment when I really can’t.”
14% 34%
Anonymous
during work-related during a GP, hospital
assessments / or other medical
appointments with appointment
Jobcentre Plus How to apply for Each card is personalised,
helping the card holder to
a Brain Injury explain the effects of their
Identity Card
19%
brain injury and request any
with colleagues,
58%
in everyday social
Anyone over the age of 18
with a verifiable brain injury
support they may need.
To apply for a card or for more
can apply, and the card information please visit our
employers or scenarios
is provided to successful website at www.headway.
education providers (e.g. in a shop, pub, bank,
restaurant, supermarket) applicants free of charge. org.uk/idcard.
www.headway.org.uk 25“A hole in
your head is a
lot less
fashionable than a cycle helmet”
When Haydn Garrod came off his bike in August 2018, he suffered devastating injuries
after colliding with a car and an air ambulance was dispatched to treat him at the scene.
However, such were the extent of the 15-year-old’s wounds, that paramedics felt it was
too risky to transport him by air.
26 Call our nurse-led freephone helpline 0808 800 2244Because he was in such said: “His positivity and determination “A mandatory law for
along with the experience and dedication under 16s to wear
a critical condition, Haydn of the team at The Children’s Trust helmets would keep
had to be put into an contributed to his astounding recovery.” our children safer on
As a result, Haydn was able to return the roads, and we’ll
induced coma before home to continue his rehabilitation in continue to do what we
being transferred by land to January 2019. can to raise awareness Haydn gets back
on his bike
Addenbrooke’s Hospital. and campaign for safer
To thank them for their care and support, cycling.”
At the time of the accident Haydn wasn’t Haydn embarked on a fundraising
wearing a cycle helmet and following mission for both The Children’s Trust and Although Haydn is now registered as
the collision his mum, Amanda Hymus, the East Anglian Air Ambulance charity partially sighted and still has ongoing
feared the worst. On arriving at the and partook in a Magical Music event, difficulties with his speech, physically he
hospital, Haydn had a CT scan which performing on his drumkit alongside Harry has made almost a complete recovery.
showed considerable swelling of the Judd of McFly. The event raised almost
£100,000. His partial sight means he won’t be able
brain. He had to undergo an emergency to ride a vehicle on roads, but that hasn’t
craniectomy to remove part of his skull Alongside their fundraising efforts the deterred him from getting back on his
in order to alleviate the pressure on his family have also launched a petition to make bicycle off-road. Asked what it felt like
brain caused by the swelling. cycle helmets mandatory for under 16s. to be riding again, Haydn said: “It felt
amazing. I felt like ‘me’ again.”
Haydn in “Haydn knows how lucky he is. His team
hospital
following his at Addenbrooke’s Hospital said if he Haydn had one piece of advice he
brain injury
had been wearing a cycle helmet at the wanted to share with anyone considering
time of the accident his injuries would not wearing a cycle helmet because of
have been significantly less severe,” said how it looks: “Trust me, a hole in your
Amanda. head is a lot less fashionable than a
The damaged
windshield of the cycle helmet.”
car that collided The campaign for a new cycle helmet
with Haydn
law for children has been joined by other You can find the family’s petition by
families from across the country who searching ‘Make the wearing of cycle
Amanda was fearful about the operation, have suffered similar experiences to helmets for children under 16 law’ on
but knew it was the best chance Haydn Haydn and his family. Amanda added: the UK Parliament website. To follow the
had of survival. She said: “When they “The implementation of mandatory cycle progress of their campaign search
gave me the consent forms, I felt like helmet wearing has been successful in @HaydnsLaw on Facebook or
I was signing his life away. It’s a risky several other countries. @HaydnsL on Twitter.
procedure but I was told without it, he
had no chance.”
Following the operation, Haydn’s life hung
in the balance as he remained in a coma
for two weeks. But to the family’s huge
relief, doctors said he had made enough
progress to be brought out of the coma,
although the extent of his brain injury
was still unknown. What followed was an
arduous journey of recovery for Haydn,
who had to relearn lost skills and abilities
and learn to cope with the effects of his
injury.
Initially, Haydn was completely paralysed
on the right side of his body and had
to be tube fed, but slowly he began to
regain movement and show signs of
improvement. His mum, Amanda, said: At Headway, we believe that all while supporting calls for a range
“Every tiny change was like a huge cyclists should wear helmets, of additional measures to improve
milestone, from his first sip of a drink, to particularly vulnerable road users cyclists’ safety, including more
his first steps.” such as children who do not possess dedicated cycle lanes and educational
the same level of competency or campaigns aimed at both cyclists and
After seven weeks in hospital, Haydn
experience as adults. motorists.
was transferred to a specialist residential
rehabilitation facility for children, where he We believe helmets should be To find out more about our campaign,
undertook intensive physiotherapy as well compulsory for all child cyclists visit www.headway.org.uk/cycle-safety.
as speech and music therapies. Amanda
www.headway.org.uk 27You can also read
