Award-winning project by a speech and language therapist and service user featured at recent health and social care conference

As many of our My Journey My Voice participants have experienced, having your voice heard as a patient or service user is often all the more challenging if you have a communication difficulty. However we are delighted to share Angela and John's story below, featured at a recent health and social care conference. It is a great example of just how much can be achieved by involving patients with communication difficulties and providing accessible information. 

Help Stop Choking is an awareness raising project by Angela Crocker, SLT, and John Toal, speech and language therapy service user. 

““I have a learning disability, epilepsy, Cerebral Palsy and swallowing difficulties.
I choked a few times and it scared me. I worked with Speech and Language
therapy to make changes to help reduce my risk of choking.
I haven’t choked since, I think my experience with Angela saved my life.
I want to share my story to help other people reduce their risk of choking.””
— John, Help Stop Choking

The Northern Ireland Confederation for health and social care, NICON, recently held their annual conference in Le Mon Hotel which was attended by the Minister for Health. One of the themes at the conference was the importance of personal and public involvement in health and social care. We are delighted that Angela and John were invited to give a talk about their innovative, award-winning project on choking awareness.  You can see their presentation slides here and view the You Tube video below for more information. 

A summary of the good ideas to help stop choking. This is 1 of 11 clips from an award winning DVD to help increase awareness of choking, promote safe eating strategies and reduce avoidable mortality and adverse harm effects from choking.

Neill makes moving speech at Making Communication Accessible Event

My Journey My Voice exhibition was very well received at the Making Communication Accessible Event.  Neill Birnie one of the exhibition participants made a wonderfully moving, funny and informative speech to the audience.  

As a result of Neill's speech, interest was expressed in working with him in the development of hospital passports for people with Speech Language and Communication difficulties.  Neill's voice was heard!

My Journey My Voice inspires visitors at Mossley Mill

My Journey My Voice has finished a two week stay at Mossley Mill in Newtownabbey where it was viewed by children and adults as part of their visit to the Mill. 

The Mayor of Newtownabbey, Cllr Thomas Hogg and local MLA Paula Bradley also came to view and exhibition and meet with participant Neill Birnie and his speech and language therapist, Cathy Magee, pictured below.

(L-R) Alison McCullough MBE, RCSLT; Janet McGookin, RCSLT; Cllr Thomas Hogg; Cathy Magee; Neill Birnie; Paula Bradley MLA.

(L-R) Alison McCullough MBE, RCSLT; Janet McGookin, RCSLT; Cllr Thomas Hogg; Cathy Magee; Neill Birnie; Paula Bradley MLA.

During a two week stay at Mossley Mill, visitors could view the full exhibition and listen to the audio recordings of every participant's story. This is how some of them reflected on their visit:  

“My daughter has had verbal dyspraxia since birth. It is really inspiring to see this.”
 
“Really enjoyed this very inspiring and thought provoking exhibition. ”
 
“Great to see an awareness being raised about something most of us take for granted. ”
 
“Wet day made bright by this visit. Thank you.”

RCSLT NI 'High 5' election manifesto asks

The Royal College of Speech and Language Therapy NI have been actively lobbying all the political parties here in the run up to the election on 5 May about the importance of supporting individuals in Northern Ireland who have speech, language and communication needs. The RCSLT NI election manifesto lists 'High 5' asks across five key areas of: health and social care workforce; children; young people; adults and communication disability. 

The participants of My Journey My Voice were integral to helping to inform, and provide case studies to support, these key asks which seek to ensure no one is left without a voice. You can the full text of RCSLT's High Five asks here. 

Election Manifesto Flyer (1)-page-001 (1).jpg

 

 

 

 

 

 

Christine speaks out about stammering

by Vivienne Fitzroy, RCSLT

Christine Birney, one of our participants in the My Journey My Voice exhibition has been out and about raising awareness about stammering with the help of her Speech and Language Therapist, Mary Coulter. They manned an information stand in their local hospital as part of International Stammering Awareness Day 2015 - well done ladies!

Christine has also talked openly about how her communication disability has affected her life and reflected upon her involvement in My Journey My Voice in a recent article for the British Stammering Association.

“Did I ever think that I’d be in Parliament Buildings, Stormont, Belfast? Not a hope, but i was!

”
— The British Stammering Association, online article

 You can read Christine's account of her experiences in the full article here. 

 

 

Disability Action - why communication matters

by Karen Hall, Assistant Director External Relations and Policy, Disability Action.

Disability Action helped to bring My Journey My Voice into being and are the a forefront in supporting disabled people to have their voices heard through their advocacy and campaigning work. Here Karen reflects on her organisation's involvement in My Journey My Voice. 

When the Royal College approached Disability Action about being in involved in this programme, we were delighted to get involved.  
In our work, and in particular our advocacy work, we know the importance of communication and the difference it can make in ensuring a persons rights and autonomy respected and achieved.  I'll talk about this a little more later.
Communication disability is hidden; misunderstood and very often is part of a more complex disability.  This means there is greater risk of the barriers to communication not being considered or addressed. 
That is why it is particularly welcome that it is the voices of the people that have experienced a communication disability that are heard in this exhibition.  As I am sure you will agree it is their voices that show, how with the right support and resources, that barriers can be broken down. 
In the Northern Ireland census nearly 30,000 people stated that their primary disability was communication.  What that doesn't tell us is why, but what the exhibition demonstrates is the wide range of conditions that can have an impact on communication. 
“Our hope is that Northern Ireland can become a more informed society and better understand communication disability.”
 
We know that it can be life long or acquired later in life.  But whatever the stage in life, access to the speech and language therapy can have a significant impact.  
We know the impact the support of speech and language therapy can have, especially through our advocacy work.  In many cases by working in partnership with speech and language professionals and advocacy workers we have been able to ensure the rights of disabled people. 
Whether it is about working with an individual to help them articulate where they would like to live, or working with them to ensure that they can provide the best evidence possible where they have been subject to abuse. 
Abuse of disabled people can take many forms, physical, sexual and financial.  Through our work we know that how a person communicates what has happened to them can be the most difficult barrier to breakdown.  And we also know that not having the appropriate support to communicate can put someone at greater risk.  
It can take considerable time to ensure that a person can communicate their preferences.  Thinking about one journey in particular about supporting a person to choose where they lived.  In the first instance, we though this isn't going to be possible.  However, with support of speech and language therapy over a period of 3 months we were able to work with the individual so that they chose where they wanted to live.  The person had lived in number of different places over a period of a year.  Each time the living arrangements didn't work out for various reasons.  After doing the work to find out where that person wanted to live, they had choice and I am glad to say are settled and enjoying their home. 
It is dangerous to presume and that's why we never do, we are not experts.  But by working in partnership with Speech and Language Therapists then we have a better chance of ensuring the rights of disabled people. 
As some of you will be aware there is currently new mental capacity legislation going through the Assembly.  The Bill is significant and the subsequent regulations and codes of practice that have yet to be developed will go some way in helping to ensure that the voice of the person is heard.  However, as with others, we have raised some concerns about the Bill.  It would take me more than 10 minutes to say it all but in short; we want to ensure that there is more focus on the wills and preferences of the person.  It should, and must be about supported decision making.  
It is through our work with people with complex disabilities that we know that with the right support, such as with communication, and then it is possible for people to make decisions about their lives. 
I don't think it could be timelier that the exhibition is launched, to demonstrate how communication can impact on a person's life. 
Through the wide range of engagement work that we do, one of they key things that disabled people tell us that they want to happen is raising awareness. Article 8 of the UNCRPD particularly focuses on awareness raising - and in our work on the Convention this is the one article that people with disabilities have told us is the most important.
The people that have shared their voices and journey for this exhibition are doing just that - raising awareness.  Now we have to ensure is that the exhibition is seen and heard by as many people as possible. 
By doing this then our hope is that Northern Ireland can become a more informed society and better understand communication disability.  

My Journey My Voice in the media

by Alison McCullough MBE, Head of NI Office, RCSLT

Since the hugely successful launch of My Journey My Voice at Parliament Buildings on 2 November, some our participants and their families have been giving interviews and telling their stories to regional and local press - here are some of the highlights:

Coverage of our launch was featured in the Irish News,  Belfast Times, and Culture Hub Magazine 

You can read the coverage of Olivia's story fully in the Belfast Telegraph online.

You can read the coverage of Molly's story in the Londonderry Sentinel

 

Ryan's story was featured in the Down Recorder and Down News.

 

 

 

 

 

 

 

My Journey My Voice launch 2 November - in pictures and words

By Vivienne Fitzroy, RCSLT

Junior Minister Emma Pengelly and Jennifer McCann launched My Journey My Voice at Parliament Buildings on 2 November. The hugely successful event was attended by a host of Minsters, MLAs, MPs, and guests from a wide range of health, social care, and third sector organisations. It was an emotional day for everyone involved as the participants and their families saw their portraits for the first time. Visitors to the exhibition were moved by their powerful stories and courage in taking part.

Junior Ministers Emma Pengelly (left) and Jennifer McCann (right) pictured with Olivia Curran (centre) launching the Royal College of Speech and Language Therapists ‘My Journey, My Voice’ multimedia portraits and stories exhibition to raise awareness of communication disability at Parliament Buildings, Stormont.

 

“Such inspirational individuals, truly amazing!”
— Visitor

Pictured at the launch of My Journey, My Voice are Templepatrick man Neill Birnie and Junior Minister Emma Pengelly

“Inspirational exhibition - beautiful portraits!”
— Visitor

Pictured at the launch of ‘My Journey, My Voice’ multimedia portraits and stories exhibition to raise awareness of communication disability at Parliament Buildings, Stormont are (L-R) Alison McCullough, Royal College Speech and Language Therapist’s; Acting First Minister Arlene Foster MLA; Christine Birney; Lord Morrow MLA, Laurence Gibson, portrait photographer and Kamini Gadhok, CEO of the Royal College of Speech and Language Therapists.

“Great that disability is getting a voice!!”
— Participant

Pictured at the launch of ‘My Journey, My Voice’ multimedia portraits and stories exhibition to raise awareness of communication disability at Parliament Buildings, Stormont are (L-R) Minister for Employment and Learning Stephen Farry; Jemima Carlin and her dad and Alison McCullough, Royal College Speech and Language Therapist’s

“Very touching yet inspiring display”
— Visitor

Mid-Ulster woman Clodagh Dunlop (centre) pictured with (L-R) Speech and Language Therapist, Bronagh McAleese; Sandra Overend MLA and partner pictured at the launch of ‘My Journey, My Voice’ at Parliament Buildings, Stormont