So I'm no good at poetry except acrostic poems and I haven't posted in a while so I thought I'd use my painsomnia to do a post on pain.
C is for crying, because nothing is easing the pain
H is for hurting, not just physically, but emotionally and socially too
R is right, wondering what the right thing is to do
O is for ongoing, because that is what chronic means
N is for no sleep, because it's hard to get comfy
I is for invisible, because my pain can't be seen
C is for cost, the cost of living in permanent pain
P is for pause, your life lived on pause because of the pain
A is for all over, when every part of your body hurts
I is for ignorance, when people don't understand
N is for never-ending, when will this pain end?
Friday, 28 June 2019
Friday, 21 June 2019
Chronic illness and loneliness
It's coming to the end of loneliness awareness week and I wasn't quite sure what to write other than 'being chronically ill is very lonely' because it just is.
"Over 9 million adults are often or always lonely." - Sense
"Almost half of working-age disabled people are chronically lonely... that works out at about 3 million lonely disabled people in Britain.""On a typical day, one in eight disabled people have less than a half-hour’s interaction with other people." - The Guardian
Doing my research for this article it seemed that a huge barrier to disabled people combatting their loneliness was the lack of accessibility in society. Such as wheelchair users turning down going out he the pub, or to a restaurant or going on public transport with friends because of lack of access.
The a lot of the time I am house/sofa-bound, I see the same few walls and windows week-in; week-out. Though I try to get out when I'm well enough with a friend, family member or carer. I don't live alone (though I'd like to but that's a whole saga in itself) but we don't often sit down and spend time together in the same room except to eat tea (evening meal if you're not for up north). I see my carers a couple of times a week and I see care professionals such as my nurse and physio. But the vast majority of the time I'm on my own.
I've struggled a lot with clinical depression since I was 11 and been isolated and lonely as well as dealing with being chronically ill doesn't help.
I have one friend who I see in person every-so-often but my biggest defence against loneliness is mail - both writing and receiving. This give me that "social" interaction that I can't do in person. I have pen pals; some whom I've become good friends with and some of my pen pals also have health problems too so there's that shared understanding, but it's nice to talk about non-medical stuff too as we spend our days dealing with symptoms and appointments etc so its nice to talk about other things like what we've been watching TV or our latest craft project.
I'd defiantly recommend getting into letter writing as a way of combatting loneliness.
The a lot of the time I am house/sofa-bound, I see the same few walls and windows week-in; week-out. Though I try to get out when I'm well enough with a friend, family member or carer. I don't live alone (though I'd like to but that's a whole saga in itself) but we don't often sit down and spend time together in the same room except to eat tea (evening meal if you're not for up north). I see my carers a couple of times a week and I see care professionals such as my nurse and physio. But the vast majority of the time I'm on my own.
I've struggled a lot with clinical depression since I was 11 and been isolated and lonely as well as dealing with being chronically ill doesn't help.
I have one friend who I see in person every-so-often but my biggest defence against loneliness is mail - both writing and receiving. This give me that "social" interaction that I can't do in person. I have pen pals; some whom I've become good friends with and some of my pen pals also have health problems too so there's that shared understanding, but it's nice to talk about non-medical stuff too as we spend our days dealing with symptoms and appointments etc so its nice to talk about other things like what we've been watching TV or our latest craft project.
I'd defiantly recommend getting into letter writing as a way of combatting loneliness.
Wednesday, 12 June 2019
The CEA Card - What is it? Reasonable adjustments and Accessible Screenings UK
What is a CEA Card?
The CEA Card is a national scheme developed by the UK Cinema Association.
Having a CEA card enables disabled people going into participating cinemas to have someone to come into the cinema with them for free. This is part of making reasonable adjustments for disabled people under the Equality Act. This person could be anyone, a carer, friend or family member and it means that should the individual need help or support they have someone there to assist them.
The CEA Card scheme is also one way for cinemas to ensure that disabled people are looked after. Though by law all cinemas should carter for the needs of disabled people.
Around 90% of UK cinemas accept CEA Cards. On the CEA Card website there's a search tool to find your nearest participating cinema.
You can also in some cinemas use your CEA card to get a concessions ticket.
You can also in some cinemas use your CEA card to get a concessions ticket.
Reasonable Adjustments
If you require an adjustment when you visit the cinema because of your disability staff should ensure that reasonable adjustments are made whether the individual has a CEA Card or not.
This may include having autism friendly screening times, having subtitled films, proving audio description, wheelchair access, accessible toilets/Changing Places etc.
Providing reasonable adjustments for disabled people is mandatory by law to all cinemas, not just those that are part of the CEA Card scheme.
Eligibility
To be eligible for a CEA Card you must be over the age of 8 years old and be in receipt of one of the following:
- Disability Living Allowance
- Personal Independence Payments
- Attendance Allowance
- Armed Forced Independence Payments
- Severely Sight Impaired Registration (formerly Registered Blind)
- Sight Impaired Registration (formerly Partially Sighted)
When you apply you must upload a copy of your entitlement letter of those with Severely Sight Impaired or Sight Impaired applicants you need to upload a photocopy of your registration.
Apply for a CEA Card
The form is really simple, just just have to fill in some personal details, upload your eligibility information an attach a passport sized picture of yourself.
The card currently costs £6* and is valid for one year and you can use it as much or as little as you wish.
To apply or renew your CEA Card click ⇨ here.
Accessible Screenings UK
Accessible Screening UK is a search tool to find accessible screenings of films in the UK.
You can search for subtitled films, films with audio description and Autism Friendly Screenings.
*date correct June 2019
Monday, 3 June 2019
Accessibility Guides - Planning a trip out?
If you have a disability or chronic illness like myself I've sure your care of how difficult planning trips out can be. You can't just turn up at places; instead you have to do your research and often call up the place your visit to ask your accessibility needs and what accommodations their are for your needs. Things like 'is there a Changing Place?', 'do you have info in audio or large print?', 'is there a hearing loop?', 'is there an audio announcement?', 'are their lifts or ramps?', 'do you have wheelchair or mobility scooters to hire?' this list goes on and on!
What's so difficult for organisations is that access needs are so varied including people who have mobility needs, are D/deaf or hard of hearing, visually impaired etc and within that each person's access needs are unique to them so it's difficult for organisations to cover all accessibility needs so often they only give a brief overview.
Thankfully there are some really good organisations that offer accessibility information. It's a bit like Trip Advisor, except for people with disabilities and access needs.
The charity was founded in 2013 by Euan MacDonald MBE (who has Motor Nerone Disease) and his sister Kiki.
As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist.
Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
Euan's Guide was launched by Euan and his sister Kiki as a place for disabled people and their family and friends to share their knowledge of accessible places to go."
I myself use Euan's Guide and write and submit reviews of places for them on the occasions I do go out. IWhen you write a review it asks what you're access needs are e.g. wheelchair user, mobility aids, speech impairment, assistance dog, hearing aid/cochlear implant etc. You then give an overall description, and then you write a review of transport & parking, access (e.g. was their a ramp/lift, hearing loop system, places to sit etc), toilet facilities, staff, anything else and you can also attach pictures, such as the seating area, the accessible loo/Changing place, accessible changing room, outside/inside access, Blue Bade parking etc.
The Red Cord Card scheme aims to bring awareness that emergency red cords in accessible toilets, accessible changing rooms, accessible fitting rooms and Changing Places need to hang freely. I carry around a few in my bag and leave them on emergency red cords and when I see one that been tied up I, if possible untie it and inform staff and also take a picture of the tied up cord and tweet it. This seems to rather effective. I recently got Matalan to sort out their emergency red cord in the accessible changing room.
If you live in the UK can order a free pack of Red Cord Cards from Euan's Guide ⇨ here.
You can follow Euan's Guide on Twitter ⇨ here and tweet pictures of emergency red cords and cars with the hashtag #RedCordCard and #LetItDangle (see Gem's video below ⇩)
AccessAble have reviewed all sorts of places and they provide easy and accessible information on the facilities available (with some really cool symbols to represent all different kinds of needs from facilities for people with mobility needs, Blue Badge parking spaces, accessible accommodation, sign language, safe or quiet places, large print, braille, audio format, assistance dogs and more).
All you need to do is put in the location of where you're visiting and it will show up the places nearby that have been reviewed.
Changing Places are specially adapted toilet facilities as well as having standard toilets with grab rails and an emergency red cord like in you average accessible toilets Changing Places are a bigger space and also have changing tables and hoist facilities; some even have shower facilities.
What's so difficult for organisations is that access needs are so varied including people who have mobility needs, are D/deaf or hard of hearing, visually impaired etc and within that each person's access needs are unique to them so it's difficult for organisations to cover all accessibility needs so often they only give a brief overview.
Thankfully there are some really good organisations that offer accessibility information. It's a bit like Trip Advisor, except for people with disabilities and access needs.
Euan's Guide
"Euan's Guide makes it easier for disabled people to find great places to go.The charity was founded in 2013 by Euan MacDonald MBE (who has Motor Nerone Disease) and his sister Kiki.
As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist.
Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
Euan's Guide was launched by Euan and his sister Kiki as a place for disabled people and their family and friends to share their knowledge of accessible places to go."
I myself use Euan's Guide and write and submit reviews of places for them on the occasions I do go out. IWhen you write a review it asks what you're access needs are e.g. wheelchair user, mobility aids, speech impairment, assistance dog, hearing aid/cochlear implant etc. You then give an overall description, and then you write a review of transport & parking, access (e.g. was their a ramp/lift, hearing loop system, places to sit etc), toilet facilities, staff, anything else and you can also attach pictures, such as the seating area, the accessible loo/Changing place, accessible changing room, outside/inside access, Blue Bade parking etc.
 |
| Red Cord Card |
As well as access reviews Euan's Guide also has a Red Cord campaign.
They give out free #RedCordCards which say: "This red emergency cord must hang freely all the way to the floor. If it does not, it may prevent a disabled person from asking for help".
 |
| Taking action in Matalan |
If you live in the UK can order a free pack of Red Cord Cards from Euan's Guide ⇨ here.
You can follow Euan's Guide on Twitter ⇨ here and tweet pictures of emergency red cords and cars with the hashtag #RedCordCard and #LetItDangle (see Gem's video below ⇩)
AccessAble
"AccessAble is here to take the chance out of going out. To give you the accessibility information you need to work out if a place is going to be accessible for you. We've surveyed 10,000s of venues across the UK and Ireland, including shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals and more. Use AccessAble to find wheelchair friendly venues or check out disabled access and facilities."
AccessAble have reviewed all sorts of places and they provide easy and accessible information on the facilities available (with some really cool symbols to represent all different kinds of needs from facilities for people with mobility needs, Blue Badge parking spaces, accessible accommodation, sign language, safe or quiet places, large print, braille, audio format, assistance dogs and more).
All you need to do is put in the location of where you're visiting and it will show up the places nearby that have been reviewed.
Changing Places
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| Changing Places symbol |
The Changing Places Consortium was launched in 2006 on behalf of the over 250,00 children and adults who cannot use standard accessible toilets.
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist. Without changing places many people are forced to have to lay on a toilet floor. Changing places are also a bigger spaces to transfer onto the toilet, to fit at least two carers into the room and have the clinical waste bin, screens for privacy and plenty of grab rails. Some Changing Places also offer hight adjustable sinks and shower facilities.
The Changing Places website has a map of where you can find your nearest Changing Place, such as at hospitals, motorway services, tourist attractions and concert venues.
As well as the map there's also a feature where you can plan your journey and it will show you where all the registered Changing Places are located along your route.
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist. Without changing places many people are forced to have to lay on a toilet floor. Changing places are also a bigger spaces to transfer onto the toilet, to fit at least two carers into the room and have the clinical waste bin, screens for privacy and plenty of grab rails. Some Changing Places also offer hight adjustable sinks and shower facilities.
The Changing Places website has a map of where you can find your nearest Changing Place, such as at hospitals, motorway services, tourist attractions and concert venues.
As well as the map there's also a feature where you can plan your journey and it will show you where all the registered Changing Places are located along your route.
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| Example of a Changing Places facility |
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