Sue has been campaigning for Changing Places in North Devon for the past three years. Initially a group of people got together but for the past couple of years Sue has been campaigning on her own.
Sue has written to lots of people who may benefit from a Changing Places facility to gain support and has written to lots of councillors in her area who are supportive but nothing has been agreed yet.
“There is a real need for more Changing Places toilets in Devon but there is not a great deal of understanding. People need to be made aware of how difficult things are for people who need proper changing facilities. I was once asked to go to an appointment in Bristol at the hospital but was unable to attend as I couldn’t travel that far as there were no appropriate toilet facilities. The G.P told me to wear a pad but I argued back: “Why should I? I am not incontinent - even if I did wear a pad I would need to change it and have somewhere to get changed.”
I had an appointment in Exeter recently- I haven’t been this far from home (about 1hr away) in 30 years because I need to be near suitable toilet facilities and there aren’t any locally. I had to use the toilet provisions at the mobility centre which weren't great because I had to be hoisted in a communal area which isn’t private On a better note I was able to go into Exeter for the first time shopping with out having to be catheterised because there is now a changing places in the city centre!!! I was even able to have a cup of tea which is something I usually avoid because it increases chances of needing a toilet.
I have been campaigning for Changing Places toilets in large public buildings and I attended a full planning meeting once when there were plans for a new college. I spoke for 3 minutes and argued my cause for Changing Places - that was nerve racking! I have never done anything like that before - there were a lot of people there.
I support the campaign because I can see what a difference it could make - to be able to go out for more than a few hours - for me I cant go out unless there is a suitable facility - I feel like I am a prisoner - imprisoned in my own home. It would be lovely to be able to go out freely - for me and for others’
I have put together a presentation on the need for Changing Places and have used water music for the background! I have written dozens of letters and been to many meetings. I feel I need the support from more people now to help me as I am finding it difficult to get any commitment to actually build a Changing Places toilet in North Devon even though there is £14,000 in a pot to go towards it.
Currently I am trying to persuade the leisure park providers, who are looking to improve their disability facilities, to include a hoist. Mencap’s Regional Campaigns Officer Jo Fox and I came up with an action plan to try and organise a focus group so that the work can be shared and I don’t feel so alone in my campaign.
Jo and I are writing to district councillors, the mayor, and the local M.P raising the issue for myself and others and trying to put some pressure on the council to actually do something.I will also get in touch with the parents group at the special needs school, advocacy groups and carers groups to see if they can help in any way.
Once I have established a Changing Places campaigning group, Jo and I will look at the local media and try to arrange to meet some councillors so that I can give my presentation and show the Changing Places video clips.
It’s a human rights issue really...by not having the right facilities available it is taking away our dignity and privacy.
My disability is Spinal Muscular Atrophy which is a neuromuscular condition that affects muscles and most people with this condition will need a wheelchair, a hoist to use a toilet or go swimming and a PA as unable to lift.”
The Changing Places consortium wish Sue the very best with her campaigning and are here to offer support as North Devon begins to improve its provision for people with additional support needs within the local community.
On Friday 2nd March our Changing Places campaign group held a petition signing event in Green Lanes shopping centre, Barstaple. Our main aim was to collect 1,000 signatures so we would trigger a full council debate. It was a long tiring day but we collected 1,291 on the day and will continue collecting signatures until the end of March. We have now also got support from the leader of North Devon Council Councillor Sue Haywood to champion our campaign so hopefully we are a little closer to get a Changing Places toilet in North Devon.