It was with huge sadness that we learned of Neill Birnie’s passing last week. Neill contributed so much to My Journey My Voice and was a courageous and outspoken advocate for people with communication difficulties
It was with a mixture of sadness and celebration as guests attended the last RCSLT/ Libraries NI tour of My Journey My Voice at the Shankill Road Library on 14 December 2017. Baroness May Blood was joined by the Lord Mayor of Belfast, Councillor Nuala McAllister, alongside other elected representatives and special guests to launch the Shankill based event. We were especially delighted that Margaret Rice, one of our fantastic participants, was able to join us at the launch and bravely spoke about her experiences of communication difficulties following a stroke.
It was heartening to see how successful this collaborative tour has been in raising awareness of the many obstacles facing people living with communication difficulties have to overcome. The project set out to educate and inform because these issues affect one in five people and there is a need to get this message out to the general public, government policy representatives and politicians to ensure that the right support at the right level gets to those who need it most.
At the event Alison McCullough MBE, RCSLT Head of Northern Ireland Office spoke about the challenges for those with a communication difficulty. She said: "Although the Libraries NI tour is coming to a close, this is not the end of the road for the My Journey My Voice project. The RCSLT has secured funding from the Health and Social Care Board to develop this concept into a schools project which is really exciting. The legacy of My Journey My Voice will be to continue to raise awareness amongst our young people, and hopefully promote better inclusion for children who have speech difficulties.”
Helen Osborn, Acting Chief Executive of Libraries NI said, "it has been a privilege to work with the Royal College of Speech and Language Therapists and to host the My Journey My Voice exhibition. Customers of different ages and backgrounds have visited the exhibition in libraries and found it to be an invaluable learning experience. I know that this will impact their understanding and the understanding of many others in their local communities.”
Guests were also treated to a fantastic, festive performance from a choir organised by RCSLT speech and language therapists throughout Northern Ireland through the Royal College of Speech and Language Therapy clinical excellence network. The choir is made up of around 50 service users, families, friends, speech and language therapists and music therapists who aim to raise awareness of stammering and other communication disability.
Now she has her voice back, Clodagh uses it to campaign for better services for stroke survivors. She’s worked closely with the Royal College of Speech and Language Therapists as part of the ‘My Journey, My Voice’ project to highlight the devastating impact of communication disability. She regularly gives speeches to raise awareness of aphasia, a communication condition that affects about a third of stroke survivors.
RCSLT is eternally grateful to Clodagh and all the other My Journey My Voice participants who have shared their remarkable stories over the last number of months.
Congratulations to Clodagh on her recent Life After Stroke Adult Courage Award by the Stroke Association!
Following on from the fantastic success of the MJMV initiative, RCSLT NI was delighted to receive confirmation from the Health and Social Care Board, following submission of a comprehensive business case, of a further award of non-recurrent funding for the development and implementation of a new initiative under the MJMV banner, this time targeted at children with communication difficulties. RCSLT NI is consulting with members and other stakeholders to generate ideas and options on how to maximize the benefits of this latest funding award with the aim of having it up and running in 2018. Watch this space for further updates.
Arrangements are now all in place for the launch of the next MJMV exhibition to take place in Bangor Library commencing at 5.15pm on Thursday 4 May 2017. Lady Sylvia Hermon MP has kindly agreed to be the guest of honour and will be joined by a number of MJMV participants as well as elected representatives, senior staff from Trusts and a number of speech and language therapists. Presentations will be made to a number of MJMV participants in recognition of the national award given for this very successful locally developed and inspired initiative.
RCSLT NI are getting geared up for our next outing of the Libraries NI tour of My Journey My Voice. We are planning a launch and month long exhibition at Bangor Library from Thursday 4th May 2017.
Keep watching this space for more details, coming soon.
It has been a hugely successful year for My Journey My Voice culminating in our anniversary exhibition last month. We were delighted with the media coverage of our participants as they continue to inspire others and raise awareness about the importance of communication disability - see a round up of coverage below.
Molly Bradley, who was born profoundly deaf, and her Dad chat to Mark Patterson on Radio Foyle in a heart-warming interview about growing up with a communication disability.
Clodagh Dunlop gave a powerful and moving speech at the launch of the anniversary exhibition of My Journey My Voice on 5 October - which you can read below. Clodagh recounts the harrowing days after her stroke when she was locked in and unable to communicate with family or medical staff and how, with help of her speech and language therapist, she found her voice again.
By Clodagh Dunlop
"Before April 2015, I understood the importance of communication. I had to effectively communicate as part of my job role, but as a stereotypical woman, I just liked to talk.
On the 6 April 2015 my world as I knew it was blown apart, a blood clot released into my brainstem causing a major stroke and leaving me with locked in syndrome.
Locked in syndrome left me completely paralysed. Every muscle in my body stopped working. I couldn't talk, I couldn't make a sound. I couldn't move my head,my arms, my legs. One thing moved, my eyelids.
For the first two and a half weeks after my stroke my only means of communicating was by blinking. I had a system of blinks. One blink for yes, two blinks for no, three blinks for I love you and four blinks for you're a moron.
Take a moment to think, if all you could say was yes, no, I love you and you're a moron, how much you'd want to say in a day that would go unsaid. Now imagine that you have just woken in an intensive care ward, you are in pain, you are hot, your family are crying at your bedside. You would definitely have a lot that needed to be said.
That was me, it was terrifying, I felt more vulnerable than I'd ever thought possible to feel. My face wouldn't move, I had no facial expressions, no smile or frown, no grimace or raised eyebrow, no sound at all.
I could hear and see everything, but I was at the mercy of those around me. I looked lifeless. Many people didn't speak or just didn't ask closed questions or the right questions. Tears would fall from my eyes, my face didn't move, I made no sound, I couldn't wipe my tears. People would ask what is wrong? Imagine yourself unable to move any part of your body, or make a sound, how do you answer the question, "what's wrong?"
Imagine nights when you can't call for help if you need it. You are placed in a bed knowing that the position you are placed in, you will remain in for hours. You can't move your position, you can't communicate that your nightdress is twisted or it's uncomfortable. You can't say "put back the fan you switched off, I'm much too hot, don't cover me with bed sheets".
Worse still you see the elderly patient opposite in distress, you want to call for help, but have to just watch, inside your head you are screaming at the top of your voice, "help, someone". You will your body to move but nothing moves, you watch until the machines monitoring the stats start beeping, you watch as medical staff run in and close the curtains, you listen as they fight to save him but then you listen and realise the battle is lost. The elderly patient had died.
The elderly patient is removed from the ward, medical staff leave and glance over as they pass, in my head I'm screaming louder than I have ever screamed but all anyone can see is my peaceful body, lying in bed. I had lay, watched someone in distress, I watched as I knew they were going to die. I couldn't summon help, it goes against everything I am as a person not too help and as a police officer, I've taken an oath to protect and preserve life.
To not be able to communicate is the most terrifying thing I have ever experienced.
My life changed after two and a half weeks when I was visited by a speech and language therapist. She assessed my condition and issued me with an electronic eye gaze spell board. Suddenly I could communicate by spelling out everything I was thinking, I could communicate with my family, friends, medical staff. I took control of my environment by getting my partner to make signs to spell out my likes and dislikes. I could finally sleep at night in peace, I could indicate to leave my fan turned on, spell out if I was uncomfortable.
Being able to communicate I believe saved my life.
Meeting my therapist that day was the start of a journey with speech and language therapy. I'd always pictured speech and language therapists just helping children with speech difficulties, now I know they do so much more. They helped me to retrain my swallow so I could eat, they spent hours with me every week doing exercises to strengthen my voice box and mouth muscles. Each one treating me as a person, an individual, each one showing me patience. Each one listening to what I was spelling out and what I would attempt to say just as if I had spoken the words clearly from my mouth.
However as I battled to talk again, I was soon to realise not everyone treats you as a person when you have a speech problem, what you say is not listened too, people can treat you as though you have lower intelligence.
This exhibition I think is powerful, Alison and the Royal College of Speech and Language Therapists have allowed my fellow participants and I to share a journey, highlighting the different communication difficulties. I hope the exhibition changes people's opinions of those with communication difficulties. It highlights that we are all individuals, as we don't communicate in what is considered a normal way, what we have to communicate should be listened to just the same.
Alison, on hearing my story, felt it was powerful enough to share with the Northern Ireland Executive. Despite my communication difficulties Alison let me accompany her to an ad-hoc committee meeting discussing the Mental Capacity Bill. By sharing my story, we made a change to the Mental Capacity Bill in raising the importance of communication and early patient assessment by speech and language therapists.
I am very proud to have participated in the exhibition and I now think speech and language therapists are incredibly special people who I have a new found respect for.
Clodagh Dunlop, 15 October 2016
Deputy First Minister Martin McGuinness launched the anniversary exhibition of My Journey My Voice at the Millennium Forum, Derry-Londonderry on 5 October and spoke passionately about the need to support individuals living with a communication disability. The Minister spent time meeting several of our participants who attended the event - Ryan, Molly, Clodagh, Christine and Neill - and warmly supported them as they spoke about their experiences of living with a communication disability.
The Deputy First Minister was joined at our anniversary event by the Mayor of Derry City and Strabane District Council, Alderman Hilary McClintock, and local MLA Gary Middleton. We were also delighted that our partners Kevin Doherty, CEO, Disability Action and representatives from the Health and Social Care Board were also able to join us to mark a fantastic first year for My Journey My Voice.
Guests were able to experience the full exhibition and hear moving speeches by Clodagh Dunlop, Neill Birnie and Christine Birney about the ways in which their communication disabilities have impacted their lives. In his closing remarks the Deputy First Minister said:
My Journey My Voice can be viewed by the public at the Millennium Forum until 27 October 2016.