Communication Nation 2

On 18^th October 2025 we held our second music event, Communication Nation at Ramsbottom Civic Hall. The event was organised with self-advocates from Bury People First and with a huge amount of good will from local musicians, who gave up their time and equipment for us to use.  There is a culture of live music in our local town Bury, and we decided to invite 3 local bands to help us.  Heston-Machine is an amalgamation of two local bands Cellar Machine and Heston, to form a new act performing for us as the headline act.

Thanks especially to Chris Jacques who managed to cajole persuade and encourage a range of friends to play, and to loan us equipment for the night.  We also need thank Duffy for the loan of the equipment; he is also the drummer for Heston-Machine.  We would not have been able to pull of an event like this without them all.

The first band to perform were Vaguely Sane with a powerful female lead vocalist and some great covers with hits from Blondie and Kim Wilde. We really enjoyed their set and we are hoping they put on more local gigs in the future.

Second up were members of Sad Sells, frontman Xavier Jaques and his brother and co-writer Zachary with most of the band. This year they played an acoustic set, showcasing their original material. Beautiful vocals and harmonies were accompanied by guitar which was provided change in pace and intensity for the evening. Sad Sells have just released an album ‘A Week of Sundays’ which is available from Picadilly records.

Headlining the evening were Heston-Machine covering a range of rock and indie numbers. This year we joined them to sign to Automatic’s song, 'Monster'.   It gave us the opportunity to teach the audience some signing skills. It also provided an opportunity for Jon from Bury People First to try out his Hallowe’en outfit. He very much looked the part!

We were delighted when a few weeks later, frontman Pat Gracey was performing Monster at a different event, complete with signs! The picture below shows Pat after his performance, collecting his raffle prize at Communication Nation.

Feedback from the self-advocates about the event:

In early November we had a reflective discussion on the event with the self-advocates, exploring what went well and what we would like to improve on for next year. The bands have agreed they would like another event next year and we are delighted they would like to return.

Comments from Bury People First:

What did you think of Communication Nation?

Sarah: Amazing, brilliant, outstanding bands. Loved working with Michelle, she helped me with the raffle.

Matthew- Absolutely love it, love the music and the signing.

Liam: I felt independent that night  and they were good bands. Jayne who took photos with me was superb.

Steven: It was really good, Loved people joining in the signing.

John and Chris from Gateway: It was amazing.

Comment from Brian Burke from CQC:

‘I liked the bands, it was brilliant, such a  nice atmosphere it felt really inclusive’.

Suggestions for improvements:

We realised we needed to be more organised with the football card, some group members wanted more hot food, Brian said it was a shame the films were shown in the back room. We would like to find a way of showing them in the front next year.

The campaign:

Behind the fun is a serious message which we hoped our event began to raise awareness of. Our focus has been to campaign for people to have the same communication rights, hence the title ‘communication nation’ which is an aspiration.  The campaign initially began with work on a communication rights charter throughout lockdown and we took the charter to Parliament in 2022. The charter descries rights many of us take for granted. For people who do not use speech to communicate, and for people reliant on staff to interpret their communication, skilled communication partners are an essential.

As mentioned earlier in the report many staff do not have access to training and there is no clear mechanism for checking the quality of communication support for vulnerable people. This can have serious consequences. For example LeDer 2022 report found that 42% of the deaths of people with learning disabilities were avoidable.  (LeDer stands for Learning from lives and deaths – People with a learning disability and autistic people. It's an NHS program that reviews the deaths of people with learning disabilities and autistic people).

The campaign group has also partnered up with self- advocates from Gateway which is a mental health hospital.

Making links with the hospital is important and including their voices is imperative. At the end of October 2023, there were 2,035 people with a learning disability or autism in hospitals in England. Over half of these people had been there for over two years in total. Many people are not discharged when they are well enough to leave. Our group includes some of those people as we want their voices to be heard too.  Work has been on -going ever since the trip to Parliament and the group have refined their ideas and would like to meet with MP’s and with the Care Quality commission to discuss them further.

Funding:

The gig raised a total of £2400.09 which is a fantastic total and we are very grateful to the bands and all our friends for their help. Our plans are to develop some short training films about good practice in communication which support staff can access. We hope with Brian’s help we can continue to work with the Care Quality Commission and to develop our role in checking the quality of good communication support. This way more people will be heard, no matter how they communicate.

Here's the QR code which links

to our petition about the

communication rights charter.

Communication Charter work - Care Quality Commission, hidden voices and quality checkers

Following the election, residents of Bury North elected a new MP James Frith. This meant we needed to explain the work we had been doing with the communication rights charter. We had previously worked with James Daly who had enabled us to take the charter to Parliament.

 James Frith attended a meeting with us at the Bury People first office on 15^th November 2024 and we were able to explain how our focus was now on meeting with representatives from the Care Quality Commission. James wasted no time in introducing us to Brian Burke who is the Senior Specialist Advisor regarding People with learning disabilities and autistic people. Brian arranged for us to meet with CQC inspectors and to provide an online training session for them.

We were joined by our friends from a local mental health hospital who represented the voices of the many people who are currently living in hospital and who have learning disabilities and autism. We wanted to highlight the fact that these voices are hidden.

The training session was well received, and this is a significant development towards our goal of becoming paid communication quality checkers. If we want services to implement the communication rights charter, then it stands to reason, that if we were involved in checking the quality of communication support provided by agencies, we could then have a tremendous impact on the lives of people with learning disabilities and autism as services would need to provide the rights listed on the charter.

Brian has agreed to help us with our goals and we are delighted to be working with him and to have found such a great ally.

Alison Matthews

Speaking out Being heard

Many of the families we have worked with during the Speaking Out Being Heard

project told us that personal care and body parts vocabulary were crucial for their

son or daughter. We created a short list based on feedback at the end of the training

course so that we could include these signs in our training. Families told us what

signs they needed, particularly for their teenagers who were experiencing changes

to their bodies.

There were challenges to finding the right images, which had to be obvious rather

than oblique; in order to be clear what we were referring to. Luckily Boardmaker has

some symbols which are clear. Sometimes, if we are honest, these images can be a

bit blatant or make us feel slightly uncomfortable.

My time spent working as a Registered Intermediary, working alongside the police

has taught me to feel passionate about teaching this vocabulary. Not everyone will

need the vocabulary in a harrowing situation in a police interview, however the

people we support may need to know the names of body parts, body functions as a

means of keeping themselves safe. Some of the people I worked with, in that role,

did not know the names of genitalia and instead we had to go with the family name

for that part or sometimes a slang word, if that was the word they used. On occasion,

people had to show you what they were trying to say , using wooden dolls or body

maps, rather than tell you verbally.

If we are serious about speaking up and being heard, we must include these vital

words and we must get over our own discomfort in talking about, in signing and in

showing the images.

So, it’s not just dominoes you’re playing, it’s teaching safeguarding vocabulary.

This could make all the difference to someone in the future and could be prevent

abuse, provide someone with dignity, and give them choice and control over

their bodies.

Here's the link on our website to download our 'Personal Care and Body Parts' resource:

Downloads

Alison Matthews