Things are really hotting up for the festive season as we fast approach Christmas. The shops are busier with people, lights and noise which can be overwhelming to say the least. And sometimes even more so, if you have a brain injury.

Our tips for the festive season

This December, we’re sharing some tips to help you survive the madness! These tips are also useful to share with your family and friends to help them understand how you feel.

Time and Rest

After a brain injury, you need more rest than you used to. Your brain works differently after the injury and you can feel ‘brain tired’. It’s more tiring for your brain to think, process and organise. So remember to take a nap if you need a break. With all the Christmas food on the go, you won’t be the only one to shut your eyes!

Avoiding crowds

Too many noises can make it difficult to filter sounds in a crowded atmosphere for anyone, but especially after a brain injury. Noise cancelling earphones can be handy for some peace and calm amidst the hustle and bustle. Choose small social gatherings or shop online to avoid the crowded shops and bars.

Make a list – and check it twice!

With so much going on in the run up to Christmas, it’s easy to forget things. Stick to your routine as much as you can and remember to make a list if you are going to the shops. It’s a good idea to go shopping early in the morning or late in the evening, to avoid major crowds.

Ask for help

It sounds obvious but many of us forget to do it – ask for help if you need it and accept help if it is offered to you. A lot of tasks that arise at Christmas time, only happen once a year which makes it easy to forget how to do them. Two heads are always better than one!

Planning

We often see a lot more people at Christmas time and many of us enjoy time off at home. It can help to write a list of what’s happening each day. Don’t be afraid to ask your hosts about what’s planned as well so that you don’t have to worry about surprises. If there’s going to be a lot of people coming, you might decide to pack your noise-cancelling headphones or earplugs so you can slip away from some peace and quiet. And don’t be afraid to go to bed early to get your rest. Socialising can be very tiring.

Flashing lights

If flashing lights are bothering you while visiting, ask your friends and family to turn off the flashing features on Christmas trees and other decorations. Choose a seat facing away from the lights or use sunglasses or a peaked hat to shade you from the dazzle.

Pictured (l-r) Mark Mitchell, MS Ireland service user (centre), Kathleen O Meara, Rehab Group, Ava Battles, MS Ireland, John O’Sullivan, Enable Ireland, Meabh Smith, Irish Wheelchair Association, Barbara O’Connell, Acquired Brain Injury Ireland, Theresa Anderson, Cheshire Ireland, Brendan Lennon, Chime, Kevin Kelly, NCBI of The Disability Action Coalition today (3rd December 2019) called on the Government to resolve the funding crisis which they say is threatening the future of their services. The coalition, made up of nine organisations funded under Section 39 of the Health Act, provide services for around 65,000 adults and children with physical, intellectual, sensory and mental health disabilities, revealed a €20 million shortfall across the nine frontline disability organisations providing these critical services. To find out more visit tdac.ie. Picture Conor McCabe Photography.

Under-funding

As many of you will know, Acquired Brain Injury Ireland is largely funded through Service Level Agreements with the Health Services Executive (HSE). We hugely value our relationship with the HSE and value our partnerships there. But we also face serious under-funding that is a constant threat to our ability to deliver services.

Core costs

You see, when funding only supports the service delivery costs, our organisation is denied essential funding for core business functions and governance. Why do we need this funding? The reality is that any organisation, including Acquired Brain Injury Ireland, cannot exist without also covering costs for vital business functions including finance, human resources and administration.

Why this funding is vital

Like any business:

• we work to the highest standards to account for all monies we receive and spend
• We work to ensure we observe all employee legislation and protect the rights of our staff
• We work to ensure our staff are trained to the highest standards to deliver brain injury rehabilitation
• We work to ensure all data adheres to GDPR (General Data Protection Regulation)
• We work to ensure all our services are compliant with HIQA and relevant legislation

Need to grow our services

As you can imagine, we would not deliver our brain injury rehabilitation services any other way. These functions are vital. But without funding for functions like finance and HR, this creates a gap in funding that we cannot fill and which threatens our ongoing survival. It also hampers our ability to grow our services, which is a big problem when we know so many more people need our help to rebuild their lives after brain injury.

Strength in numbers

So that’s why we have joined forces with 8 other disability organisations facing the same funding gap and crisis. Together we are called The Disability Action Coalition (TDAC for short). Our colleagues in the group include organisations you know such as Cheshire Ireland, Chime, Enable Ireland, Headway, Irish Wheelchair Association, MS Ireland, National Council for the Blind Ireland and Rehab Group.

Campaigning at the Dáil

Barbara O’Connell, CEO, Acquired Brain Injury Ireland

Yesterday we joined the TDAC group and campaigned outside the Dáil, calling on the Government to resolve the funding crisis. At a media briefing in Dublin, our CEO Barbara O’Connell said: “Our reserves have gone down. We are here to highlight that things could collapse very quickly if we don’t get the funding we need.”

Section 39 and how it affects our organisation

All of these organisations including Acquired Brain Injury Ireland, are funded under Section 39 of the Health Act. Under this section, this means we are not funded to meet the full costs of pay restoration, insurance, regulation or training.

Squeezed by the State

John O’Sullivan, CEO of Enable Ireland said: “We have been left behind while the rest of the country is catching up after the cuts of the recession years. This lack of funding is crippling our ability to respond to the needs of people with disabilities. We are being squeezed between State-funded services and private providers. We have all the obligations of State services but none of their advantages and supports, especially funding.”

Staff relationships with clients are vital

Retaining staff is vital to delivery of our services which is challenging in a competitive environment. Equally important, are the relationships that our staff build with our clients. We work really hard to ensure we hire and retain the best people with the best fit for the organisation and a person-centred approach.

Our joint plea to Government

Together with Enable Ireland and other members of the coalition, we are calling  on the government for:

• €20m to eliminate the deficits of the Disabilities Action Coalition
• Implementation of recommendations of the Independent Review Group on the status of Section 39 organisations
• Pay restoration for Section 39 staff
• Recognition of the unique role played by Section 39 organisations which are responsive and good value for money

You can read more about our campaigning on this issue for core funding support in the latest Irish Times article.

If you would like to know more about our organisation, see our Annual Report 2018.

19,000 lives turned upside down every year

Nobody ever thinks a brain injury will happen to them. Yet as many as 19,000 lives are turned upside down annually in Ireland from newly acquired brain injuries. The biggest causes of brain injury that we see in our services are caused by stroke, road traffic accidents, assaults, falls and brain tumours.

Young people stuck in nursing homes

Too often people who acquire brain injuries are young. Due to lack of services available at the time of injury, we still see young people left in settings like nursing homes, community hospitals or sent home where families are unable to cope.

Spread the word about brain injury

This is why we need much greater awareness of brain injury. Because if more people like you understand about brain injury, that’s more people who will listen about the services we need to rebuild lives. We need to educate people about brain injury – our politicians, our communities, our health system – so that everyone understands the importance of investing in rehabilitation. One of the best ways we can do this is through sharing real life stories.

Not enough data on brain injury

Unfortunately, there is not a lot of research available to show the actual incidence of brain injury in Ireland. That’s why research is so important – gathering the right data helps us build our case so we can ensure brain injury survivors and their families get access to vital, specialist and neuro-rehabilitation services like ours. But here is what know so far:

This is an extract from our Annual Report 2018.

When a brain injury happens, it can put lives on hold. It can happen to anyone, at any age, at any time. No-one ever thinks a brain injury will happen to them. One of our brain injury survivors Kieran Cullen, suffered a brain injury after a bleed on the brain caused by a road traffic accident six years ago. A talented poet, Kieran now shares the reality of what it’s like to suddenly find yourself living with a brain injury. This is Kieran’s poem, The Shock.

The Shock

Were you ever on your own, in a crowded place?

When you couldn’t hear the throng

And the ghost-like figures moved in waves

Then you knew there was something wrong

When your legs felt like feathers

And your arms were to no avail

Like a ship in the eye of a tempest

Without anchor, keel or sail

That’s the way it hits you

Then the birds come home to roost

Breathing becomes a labour

Like the tightening of a noose

A caring voice you long for

Or helping hand, to guide

But you are in isolation

Can you take this in your stride?

The next instant, you are surrounded by family

And it’s only then you know

Six weeks have been robbed in a moment

And the life you knew can never be so.

Rehabilitation is a right, not a request: An appalling lack of brain injury rehabilitation services is devastating thousands of brain injury survivors and their families across the country who are left merely to exist.

“Don’t Save Me, Then Leave Me,” was the wake-up call we delivered to politicians today. We presented the case for urgent investment in regional neuro-rehabilitation services in the Dáil AV Room.

Forced to live in nursing homes

19,000 new brain injuries are acquired in Ireland annually from causes including stroke, road traffic accidents, falls, assaults and brain tumours. But despite more people surviving the major trauma of a brain injury, many young brain injury survivors are forced to live indefinitely in nursing homes or community hospitals without access to any rehabilitation to aid their recovery.

No specialist rehab beds outside Dublin

Additionally, many more are discharged home to families who are often unable to cope and struggling to understand the aftermath of brain injury. If you have a brain injury outside Dublin, there are no specialist rehabilitation beds available regionally. This is despite the need for regional rehabilitation centres being clearly outlined in the Neuro-Rehabilitation Strategy in 2011 and confirmed again in the 2019 Neuro Rehabilitation Implementation Framework.

Urgent call for regional rehab centre

Today we called on politicians to support our proposal to deliver Ireland’s first Regional Neuro-Rehabilitation Centre and support families in crisis after brain injury. Our centre will offer specialist in-patient and out-patient rehabilitation for people with an acquired brain injury in a 25-bedded centre.

Families are pushed to breaking point

Barbara O’Connell, Chief Executive with Acquired Brain Injury Ireland said: “This country cannot continue to save a life on the one hand, but then rob their quality of life on the other hand by not providing rehabilitation to brain injury survivors. Without investment in rehabilitation, our hospitals are clogged up unnecessarily by keeping brain injury survivors in acute beds that don’t need to be there. Families are pushed to breaking point because of severe under-resourcing of brain injury rehabilitation. The reality is if you have a brain injury outside of Dublin, there are no specialist beds for you.”

Fill a vital rehabilitation gap

Ms O’Connell added: “That’s why we’re calling on the government to support our proposal to establish a regional neuro-rehabilitation centre. Nothing like this exists in the regions which is a major source of crisis for families stuck without a brain injury rehabilitation pathway. Our proposal is in full alignment with the Government’s Sláintecare plan. It will fill a vital rehabilitation gap for families, guiding their loved ones with brain injury back to live in their own communities and out of high-cost care that does nothing to aid recovery after brain injury.”

Eight years waiting for action on national strategy

According to the national brain injury charity, lack of action on the long-awaited neuro-rehabilitation implementation plan means too many young brain injury survivors are wrongfully placed in settings like nursing homes and community hospitals.

Too many still placed in a nursing home

One young brain injury survivor told politicians how he was institutionalised for seven years at just 35 years old, without access to rehabilitation in that time. After suffering a brain injury due to complications with diabetes, Ian Kelly initially received intense rehabilitation at the National Rehabilitation Hospital for three months. But then he was discharged back to Tallaght Hospital where he remained stuck for a year and a half until he was then discharged to a nursing home for five years. According to Acquired Brain Injury Ireland, this is a clear example of the inflexible funding model in our health system that failed to provide an appropriate rehabilitation place for Ian.

Read Ian’s story

Now, 45 years old, Ian said: “When I was in the nursing home, I lived on a ward for five years. I only had a bed and a locker to myself. For five years I lived with older people. I had no rehabilitation and no independence. It wasn’t until 2014 that I was able to take up a residential rehabilitation place with Acquired Brain Injury Ireland. At first I found it difficult to adjust to living in a house after being institutionalised for so long in hospital wards. But the staff were brilliant and supported me in my goals to live independently.”

Last November (2018) Ian moved into an apartment where he lives independently with support from an Acquired Brain Injury Ireland keyworker who visits twice a week.

Ian added: “Acquired Brain Injury Ireland gave me my life back. Without their help, I don’t know where I would be now, probably still sitting in a nursing home with no future and just waking up and going through the motions every day.”

100,000 living with effects of brain injury

Acquired Brain Injury Ireland has called on Government to prioritise investment in their regional neuro-rehabilitation centre in 2020. It is estimated that more than 100,000 people in Ireland are living with the consequences of brain injury at any given time.

It’s a lottery to get rehab services

Ms O Connell stressed to politicians how it’s a lottery for brain injury survivors getting access to neuro-rehabilitation services which is having a detrimental impact on the lives of brain injury survivors and their families.

Benefits of our proposed Regional Neuro-Rehabilitation Centre:

• Remove ‘bed-blockers’ and free up acute beds. Take brain injury survivors out of acute hospitals who don’t need to be there.
• Free up places in the National Rehabilitation Hospital (NRH) and reduce NRH waiting list. Take people who have completed their medical rehabilitation or straight from the waiting list.
• The centre will provide specialist brain injury rehabilitation that will ensure people reach their maximum potential.
• The centre will reduce the burden on families who are struggling to cope.
• The centre will save money across our health services by providing timely access to rehabilitation and improving the flow of people from hospital to home.

Acquired Brain Injury Ireland is the nation’s leading provider of community rehabilitation for those of working age (18-65 years) living with and recovering from an acquired brain injury.

Learn more about our presentation to politicians here.

ENDS

Media queries to:

Caroline Cullen, Communications and Engagement Manager, Acquired Brain Injury Ireland

Mob: 087-2491332 Tel: 01-2804164 ext 260 E: ccullen@abiireland.ie

Pictures taken by Mark Stedman.

This week our On With Life Support Groups for families are coming to Kilkenny, Laois and Tipperary!

What is On With Life?

On With Life is a dedicated support initiative for family and friends affected by brain injury.

Support for families

We recognise the importance of supporting family and friends as you learn to cope with the challenges after your loved one has a brain injury. Our new brain injury network On With Life is here to support families and friends by providing information, guidance and support on this journey.

Living with and caring for someone with a brain injury is a life-changing event. When a brain injury happens, it can be devastating, both for the individual and for family members just like you. It can put lives on hold while your loved one undergoes intense rehabilitation to relearn things, they used to do without thinking. Relationships are an essential part of any brain injury recovery. We are here to say, you are not alone.

Laois Support Group Meeting:

• Date: 8th October
• Time: 7.30pm-9.00pm
• Location: St. Peter & Paul’s Parish Centre, Dublin Road, Portlaoise

Kilkenny Support Group Meeting:

• Date: 10th October
• Time: 7.00pm-8.00pm
• Location: St. Patrick’s Parish Centre, Loughboy, Kilkenny

Tipperary Support Group Meetings:

• Date: 9th October
• Time: 7.30pm-9.00pm
• Location: Silver Arch Resource Centre, 52 Silver Street, Nenagh 

• Date: 10th October
• Time: 2.30pm-3.30pm
• Location: Acquired Brain Injury Ireland Offices, St Luke’s Hospital, St. Theresa’s Wing, Western Road, Clonmel

Families can become carers overnight

On With Life Support Group Co-ordinator Dolores Gallagher said: “Many family members and friends are thrust into the role of carer without warning. In addition, many of you may also be looking out for the health and wellbeing of other family members. Or you may have a job outside the home. Juggling all these challenges is not easy. We’re here to help you get ‘On With Life’.”

Benefits of our support groups

Ms Gallagher outlined the benefits of joining the On With Life support network:

• opportunity to meet people who understand what you’re going through and share the reality of living with an acquired brain injury in the family, in a safe place
• receive information on steps to take to keep yourself physically and emotionally healthy.
• receive practical guidance how to meet family needs or juggling your job

Who can join?

On With Life is open to family members and friends of brain injury survivors in Laois. Attendees do not have to be previously involved with Acquired Brain Injury Ireland services. All are welcome.

Thanks to our funders

The On With Life project was approved by Government with support from the Dormant Accounts Fund. Acquired Brain Injury Ireland is the nation’s leading provider of community-based rehabilitation for people with acquired brain injuries.

Find out more

For more information about On With Life support groups see www.abiireland.ie  or contact Dolores Gallagher on dgallagher@abiireland.ie or call 086-0102361.

Clane 10k volunteers, left to right: Noel Haverty, Conor McCaffery, Danny Egan, Karle O Sullivan, Brian Keating, Jack Fadden, Marian O’Neill (Local Services Manager with Acquired Brain Injury Ireland), Karl Martin, Rachel Sweeney, Rob Eyres and Daryl Skelly.

Run towards a better you in the upcoming Clane 10k run on 9 November organised in aid of our charity. This marks the fourth year of this sell-out event sponsored by T&I Fitouts. You are strongly advised to register as soon as possible to secure a place and avoid disappointment. Last year more than 750 runners and walkers took part and this year, it is going to grow even bigger. The Clane 10k has already become a firm favourite on the Irish running calendar. Don’t miss your chance to take part!

Amazing funds raised!

Thanks to the incredible organising committee and all the people in Clane who have supported this 10k race because thanks to everyone’s efforts, the Clane 10k has raised  almost €60k raised to date!! Imagine! Every cent of this money received by our charity goes towards making life better for brain injury survivors in Kildare, West Dublin and right across Ireland.

5k Family Fun Run

To ensure there is something for everyone and to cater for all levels, a 5k Family Fun Run will also take place on 9th November. So why not come and join in the fun with all the family. We don’t mind if you walk, skip, jump or roll your way to the finish line. It’s the taking part that counts! Register your family now!

Inspirational

The Clane 10k is a special event inspired by young brain injury survivor Jack Fadden who suffered a bleed on the brain when he was just 21 years of age. The courage and resilience of the young Kildare native inspired his friends to organise the Clane 10k fundraiser. Their goal is to ensure more people like Jack get the rehabilitation they need to recover after brain injury.

Let’s make life better for brain injury survivors

Organiser Conor McCaffrey said: “The Clane 10k was borne out of a need to do something to make life better for people after brain injury. As friends of Jack, we saw the struggles he went through after his injury. We also saw the incredible strides he made with support from Acquired Brain Injury Ireland and his keyworker Aidan. He showed amazing determination to make progress in his rehabilitation.

“Organising this event is our way to give something back to the community and help more brain injury survivors in Ireland. Nobody ever thinks a brain injury will happen to them. But it can happen to you or me or your family. We hope everyone will come out to join us in Clane on 9 November, for a 10k run or the 5k fun run to raise vital funds for Acquired Brain Injury Ireland. It’s a great day out for all the family.”

How to register

• Registrations are open now on www.popupraces.ie
• Search for the Clane 10k event.
• Entry fees cover all levels of participant: €25 per 10km entry, €20 per 5km entry and €50 per family entry (2 x adults, 2 x children).

Our thanks to the Clane 10k Volunteers!

Our Head of Fundraising Jonathan Power said: “Organising an event on this scale is an enormous task. We are extremely grateful to the Clane 10k organising committee for volunteering their time and energy to deliver a first-class running event that continues to grow from strength to strength. Every day in Ireland, 52 people acquire a brain injury from stroke, road traffic accidents, falls and assaults. We believe every brain injury is unique and we champion personalised rehabilitation plans for all our clients. Ultimately our goal is that our clients won’t need us anymore. The funds raised from this event make an enormous difference to our rehabilitation services to maximise the potential of brain injury survivors to live as independently as possible.”

So join us – 9th November!

Clane 10k & 5k Family Fun Run 2019, 9 November, 10.00am. Entrants receive a technical t-shirt and bespoke medal. Post-race refreshments provided courtesy of Clane GAA. Register to take part with www.popupraces.ie

Tweet #Clane10k

Our  ‘On With Life’ programme is a new Brain Injury Family and Friends Support Network and next week we’re coming to Cavan and Monaghan!

We know that caring for a loved one with brain injury can be difficult without any help or support. Many family members and friends are thrust into the role of carer without warning.

How can I find out more?

That’s why we’re here to support you. Read more about On With Life here.

Join us in Cavan and Monaghan next week!

In the meantime, if you’re in Cavan or Monaghan, why not come along and join us?

It’s a great opportunity to meet other people with similar experiences and our experts are on hand with advice and guidance.

We’d love to see you!

On With Life Support Group Meetings:

Cavan

• Time: 7.30-9.00pm
• First Tuesday of the month – 1st October, 5th November, 3rd December
• Meeting held at the Irish Wheelchair Association Unit 1, Block D, Corlurgan Business Park, Cavan, H12 W667

Monaghan

• Time: 7.30-9.00pm
• First Wednesday of the month, 2nd October, 6th November, 4th December
• CRANOG HSE Resource Centre, Bree, Castleblayney, A75 XW77

Contact details:

For more information, contact Dolores Gallagher on dgallagher@abiireland.ie or call 086-0102361.

Find out about more On With Life support group meetings happening around the country here.

New research published in today’s Irish Times showed that 70% of cyclists referred to Ireland’s main centre for treating brain damage, were not wearing a helmet at the time of their injury.

A total of 26 cyclists were sent for treatment at the neurosurgical centre at Beaumont Hospital in Dublin. Eighteen out of 26 cyclists referred to the centre, were not wearing helmets.

Mind Your Head – Wear a Helmet

That’s why we are urging all cyclists to ‘Mind Your Head’ and wear a helmet, even if it’s for short journeys.

We’re not surprised by findings

On Newstalk Breakfast this morning, our CEO Barbara O’Connell told listeners that the latest research was not surprising because it confirms much of what we already see in our services.

Barbara said: “Nobody ever thinks a brain injury will happen to them and yet it happens to 52 people in this country every day. It is well proven that wearing a helmet reduces the severity of the brain injury by absorbing the impact from the collision.

“A helmet won’t prevent every head injury, but it can prevent serious head injuries like skull fractures, and this helps to reduce the amount of time a person spends in recovery and rehabilitation.”

Cycling is good for you and the environment

The last thing we want, is to stop people from cycling which is a great form of exercise, active commuting and pollution-free transport for the environment.

Helmets prevent serious injuries

But from a brain injury point of view, we want every cyclist – young and old – wearing a helmet.

The latest research findings show how serious cycling injuries can be without one. Recovery after brain injury is not easy. A fall off your bike can leave you with a chronic condition affecting your life and the lives of your family for months, years or even decades after the initial injury.

Don’t take that chance. Mind your head and wear a helmet.

Cycling topped the referrals to neurological centre for sporting head injuries

The research also found that cycling had the highest numbers for referral to the neurological centre at 86 cases, followed by Gaelic football at 30 cases and horse riding at 23.

What Australian experts say

According to the national brain injury charity, wearing a helmet is not new advice. As recently as 2016, Australian researchers showed how cycle helmets reduced the risk of serious head injury by nearly 70% and the risk of fatal head injury by 65%.

#ProjectEDWARD

Today, 26 September, also marks European Day Without A Road Death which encourages motorists to be aware of others using the road and to be particularly mindful of vulnerable road users including cyclists.

Cyclist injuries on Irish roads

Statistics published in 2018 by the Road Safety Authority (RSA) showed that as many as 153 pedal cycle users experienced serious injuries on Irish roads and a further 778 cyclists reported minor injuries.

Helmet wearing was not captured in this data. The RSA’s provisional review of fatal collisions confirmed 9 cyclist fatalities for 2018.

It’s easy to come off your bike

Acquired Brain Injury Ireland also reminded the public that it doesn’t have to be as dramatic as a road collision for a cyclist to come of their bike. Other causes can include:

·       Greasy surface

·       Faulty mudguard

·       Bump on the road

·       Cardiac event

You can read more about the research published in today’s Irish Times here.

“Completely insane” and “crazy” was how Áine Carroll, Professor of Healthcare Improvement at UCD, described the fact that more than one million people are on waiting lists in our health service.

Call for community health services

In particular, we welcome Professor Carroll’s comments in today’s Irish Times stressing the need for greater focus on the provision of services in community. This would mean a move away from a focus that seems to be “relentlessly hospital-obsessed”.

What’s it like for many brain injury survivors

At Acquired Brain Injury Ireland, too often we see too many brain injury survivors forced to live indefinitely in nursing homes or community hospitals without any access to rehabilitation to aid their recovery. Additionally, many more are discharged home to families who are often unable to cope. 19,000 people acquire brain injuries in Ireland annually from stroke, road traffic accidents, falls, assaults and brain tumours.

Benefits of helping to grow our services

Greater investment in our brain injury rehabilitation services in residential, community and clubhouse settings can: free up hospital beds, reduce delayed discharges and improve quality of life for people after brain injury.

Rehabilitation is not care

While our rehabilitation services are distinct from care services, there are times when both are necessary to support the recovery of a brain injury survivor to maximise their potential and rebuild their life as independently as possible.

Imbalance of services

The latest comments by Prof Carroll were made at the launch of new ESRI study which confirmed the large inequalities between counties regarding the supply of home care and residential care. According to today’s Irish Times article, “Eastern counties are generally under-served while Western counties are over-served relative to the average”.