Geneva Pattison
National Brain Awareness Week took place from March 15th to 21st this year. To mark the important date, NewsFour got in touch with Headway, a charity that offers help and rehabilitation to people who have suffered an acquired brain injury, while also offering services to families of those who are affected. Headway is a free to access charity for people with acquired brain injury or their families and they can be accessed without GP referral through the Headway website. Sara Sabbioni of Headway chatted with us about the charity’s services, how to access services in the pandemic and how best to mind our own brain.
NF: When was Headway established?
Sara: It was established in 1985, so quite a long time ago. The aim of Headway was a support group started by families in the beginning, because as you can imagine a brain injury is such a traumatic event that involves not just the person affected but the whole family. At this stage now we are in Dublin, Limerick, Cork, Kerry and Carlow, so we have grown quite a bit.
NF: It’s wonderful that you have expanded to so many places, but I’m sure there’s always room for more growth to reach more people?
Sara: Absolutely and I have to say that because of the pandemic, we have moved most of our services online at the moment. A lot of people who live down the country who would have struggled to commute for services can now access certain services from their computer at home, with our online training. But obviously there’s always room for improvement. Between all our centres, we serve 1342 adults and family members. (Outside Covid-19 times) we have a centre where people come in daily, a helpline, a community integration service for people with a brain injury who want to interact within the community. We also have psychological and vocational services, often people with a brain injury cannot return to work immediately, because they spend a lot of time in hospital. So we would help them rehabilitate and prepare for a return to work.
NF: Do you offer support to people with more severe brain injuries too? People who are bedbound or paralysied?
Sara: Yes, Headway would work with a wide range of people, from mild brain injury to people who are severely injured. For example we would work with people who live in the hospital full time, who may come into our centres for rehabilitation and also work with people who can live independently and would come in unassisted. Our services are really tailored to the person’s needs, we always say that a brain injury is very unique because it’s such a complex organ. Every situation is different, so you have to listen to the person’s needs and what they want to get out of the sessions.
NF: Headway seems like a very goal orientated charity. With all the charities currently suffering due to the pandemic, how can people best support Headway?
Sara: There are different ways, we have a Facebook page and a website, www.headway.ie. If you go on our website, we have a donation section where they can see Headway’s bank details so they can make a bank transfer or they can send us a cheque. On our Facebook page there’s a section on the bottom that says “Donate” and people can donate any amount they want to, they can also set up fundraising events for us. Recently we have been creating online events and online quizzes to raise money and they can be found on our Facebook page. So it’s a bit of fun and it’s for a good cause, if people want to join in the more the merrier!
NF: In the last couple of years there’s been a lot of talk in the media about sport related head injuries. What steps would Headway recommend to see that sports related head injuries become less frequent or eventually cease?
Sara: A few years ago, a colleague of mine started the “If in Doubt, Sit it Out” campaign (in relation to concussion awareness). Rugby players have recorded videos in support of it. She would have done quite a lot to raise awareness about this issue and Headway would do so too when we can. But the pandemic has made everything much harder than before, before we would visit schools and hospitals to try and raise awareness about this issue.
NF: So would speaking up about any suspicious brain or head pain be important in terms of early intervention?
Sara: Yes that would be key sometimes. I have been in Headway for the past 13 years and what is surprising to me is, I still hear people or clients saying “I had a headache for a number of days and it didn’t go away” and they just take to their bed. I think this is so wrong, the message people should understand is that if they experience unusual headaches or hit their head, they should err on the side of caution and go to their GP or go to hospital. People often think that acquired brain injury just happens to elderly people, or that it happens because they might live a certain lifestyle with drugs or alcohol. But from our data, the average age of people who access Headway was 47.7, so that’s pretty young. A large percentage of which would access our services for a stroke or brain hemorrhage. People don’t realise that a brain injury can happen to anyone and can happen out of the blue.
NF: The NAI (Neurological Alliance of Ireland) released a report on the 15th of March detailing severe gaps in neurology services and aftercare in Ireland, with regards to funding. Considering that there are around 800,000 people in Ireland living with a neurological condition, how can the everyday person best protect their brain health?
Sara: Prevention is key. Obviously check and rule out any suspicions and maintain a healthy lifestyle with a healthy diet with regular exercise. These days our lives are unfortunately very stressful, we push ourselves to our limits. So sometimes self care and reminding ourselves of what our priorities in life are, can help a lot. Sometimes I talk with clients about this and they say that it’s really an eye opener, they didn’t realise what their priorities were. Their priorities may not be to make loads of money or work forever, but rather to look after themselves and spend time with family would be their real goals in life. So my advice would be to slow down a little bit and look after what matters to them a little more.
NF: Because stress can affect a person’s brain psychologically and physically, would you recommend practicing mindfulness as a relaxing or protective method?
Sara: Absolutely and mindfulness is something we do in Headway on a regular basis. We have several groups going and it definitely has a positive effect on the mind.
NF: In terms of Brain Awareness Week this Year, how is Headway getting involved in spreading awareness?
Sara: (Pre-Pandemic) We used to do quite a lot in the centres. We had coffee mornings, went into hospitals and more. This year it will be a little more low key unfortunately. We’re trying to do as much as possible online, like holding celebrations, events and spreading awareness online.
Data from 2019 shows that Headway’s service demands have increased by 27%. The data showed that they are serving 1342 clients in the republic of Ireland who have an acquired brain injury and had 962 helpline calls that year. In 2019, 446 people were referred to Headway for assistance or, referred themselves or family members, which shows an increase of nearly 100 people when compared with the previous year. The precise average age of people accessing the service was 47.7, with 56% of people referred suffering non-traumatic brain injury versus 44% receiving a traumatic brain injury diagnosis. Statistics from Headway also show that client’s wellbeing and life satisfaction improved upon receiving intervention from Headway.
Any brain injury is drastic and is for life. It can lead to disability, impaired motor functioning and have a drastic impact on a person’s mental health. While some people with milder brain injuries may recover to a large extent, there are some people who will need lifelong care and assistance. According to the NAI report released this year, the neurological care and health sector is critically understaffed and much of the long-term rehabilitation and aftercare falls on the shoulders of neurological charity services. On the topic of this in the NAI report, Professor Orla Hardiman, National Clinical Lead for Neurology said:
“The vital importance of not-for-profit organisations in the delivery of everyday care for neurological illness in this country cannot be overstated. They contribute millions each year from fundraised income without which neurological care in this country could not be sustained. It is vital that the section 39 organisations be funded by the state to reflect the true cost of providing these services.”
Interview With Volunteer and Service User,
Caroline Leonard on Headway’s Work.
NF: How did you find out about Headway?
Caroline: When I was diagnosed with my condition, there wasn’t a lot of information available. It was very difficult to source help, so I found it through trial and error really. I knew of Headway in the UK, then I found out about them in Ireland.
NF: What services did you feel benefitted you most?
Caroline: I should mention before this, that there’s nearly a year waiting list to get any of the services from Headway. They do a full assessment looking at what you’re going to need and after that there’s still a waiting time. This is because they don’t have enough resources. But they do really important neuro-psychological work, yes the physiological side (of brain injuries) is important too, but you’ve also got communication challenges, memory issues, thinking issues and emotional issues. Headway have specialist neuro-psychologists that understand all of these particular neuro-cognitive actions. For my situation, my speech would have been slightly gone and distorted, my thinking was impaired as well. Obviously you need them to understand how best to get you back on track again. Headway also has occupational therapy, their support service to help you think about getting back to work. They also have social groups and lots of information for linking you up to other charitable bodies, for example Epilepsy Ireland. They also offer clients the chance to be in their fundraising group. Headway doesn’t have enough funding to have an in-house fundraising team. So, myself and a few other people who would have an acquired brain injury of some sort would meet up (pre-Covid) every 10 days or so to draft fundraising strategies. But once you get into Headway’s services, what they do is fantastic.
NF: Has the experience being involved on a voluntary basis for Headway’s fundraising, helped you on your own journey of recovery?
Caroline: Yes I suppose so. Initially when I think of fundraising I think of people outside (fundraising on streets), but we come up with the ideas together. For example, there are some people in there who are artists and they have been involved in creating the art behind the charity Christmas cards. I would have previously operated at a very senior level, so I got stuck in and felt very strongly about Headway needing to be promoted more, along with more funding and more general awareness about brain health.
NF: Have you found a network of friends or acquaintances through Headway that you can connect to?
Caroline: That’s been a bit of a challenge this year, because we can’t be in a room together. But apart from that, I’ve also found that returning to my studies has been a great source for interaction and connection for me. It’s been really good for building that confidence back up again. I would be very involved in the advocacy group also, who work to push politicians to acknowledge the important funding aspects that need attention.
NF: How do you feel the support or aftercare available for people with varying types of brain injuries is in the public health system?
Caroline: (In relation to her own experience) It’s a real challenge that question. Overall, in one hospital I’d rate the service I’ve had as good, obviously hospitals have a lot of difficulties to deal with, but another hospital I’d rate less than good and I don’t like saying that. There’s more of a straight forward protocol when dealing with something like a sports injury, but other injuries can cause complications in relation to time spent in hospital and recovery rates. (After hospital) My own GP was great.
NF: How important is Brain Awareness Week to you and to Headway?
Caroline: It matters an awful lot to me because before I knew about Headway, I knew about Brain Awareness Week. I just wish that it was more publicised because with so many people suffering with brain related issues and not talking about them it makes me incredibly sad, it’s like a hidden illness. The way you see daffodil day advertised and fundraising everywhere for cancer awareness, I’d like to see brain injury awareness get to that level.
To get in touch with Headway and find out more about their services, visit www.headway.ie or call their national helpline on 1800 400 478.
Headway Website:
https://headway.ie/
Headway Twitter(@HeadwayIreland):
Twitter.com/HeadwayIreland
Headway Facebook:
Facebook.com/Headway.ie
Headway Care Statistics:
https://headway.ie/about-us/our-outcomes/
NAI March 15th 2021 Report:
https://www.nai.ie/go/news/15-3-2021-nai-report-reveals-critical-gaps-in-neurology-services
