Day: November 5, 2017

Hearing loss charity encourages people to be proactive about their communication needs – Action On Hearing Loss: RNID

clatterbane:

clatterbane:

The UK’s largest hearing loss charity Action on Hearing Loss is urging the 9 million people in England who are deaf or have hearing loss to tell their GP what support they need to help them communicate.

The call to the public comes as the charity launches its new campaign, ‘On the Record’, just under three weeks before the NHS England’s mandatory Accessible Information Standard comes into full force.

The charity’s Access All Areas research found that most people with hearing loss surveyed were forced to struggle with the phone or go in person to book appointments for lack of other options such as online booking. One in seven had missed an appointment because they hadn’t heard their name called out in the waiting room. Furthermore, more than a quarter had said they didn’t understand their diagnosis after seeing their GP, and two thirds of those needing a British Sign Language (BSL) interpreter didn’t get one.

NHS England estimates that missed appointments for people with all levels of hearing loss costs the NHS at least £14 million every year.

Dr Roger Wicks, Director of Policy and Campaigns at Action on Hearing Loss, said: “This is a huge step forward for people who are deaf or have a hearing loss. From simply booking appointments to fully understanding what has been said in the consulting room, many have struggled to enjoy full, equal access to healthcare.

“This Standard now means that the 9 million people in England who are deaf or have hearing loss must be provided with the support they need to communicate when they visit the GP or other NHS services. We urge anyone who hasn’t had their needs recorded to use one of our free resources to contact their GP and make their needs known.”

The Standard, which becomes a legal requirement in England by 31st Jul 2016, establishes a clear administrative process for providers of NHS care or publicly funded adult social care to follow to make sure people with disabilities and sensory loss can contact services when they need to, communicate well during appointments and understand information they are given.

The charity has created a template letter for patients to send to their GP practice manager or a card for patients to give to the receptionist the next time they’re at the surgery. Patients can use one of these two resources to explain what support they need.
To find about more about how the Accessible Information Standard will affect you, and to download the template letter or card, please visit: www.actiononhearingloss.org.uk/ontherecord. All information on the Standard and how to use the template letter are available in BSL on the page.

Very relevant. Hopefully this will make some difference, with their at least having to look like they’re doing something about accessibility.

This is supposed to apply to all kinds of disabilities which may affect communication needs. (So what is the Accessible Information Standard?)

(And I must add that the DDA went through in 1995, and that describes the state of accessibility for NHS services over 20 years later. I don’t necessarily expect much, but you can bet I am sending a letter to the GP’s. Where I have not been able to make an appointment for quite a while.)

Reminded of this again. Because they are threatening me with loss of treatment for freaking retinopathy and maybe going blind, largely because I am already HOH and otherwise disabled.

(I also developed that complication already largely thanks to inaccessible and just plain bad care, but I don’t need to go on right now.)

And the state-run health system has largely avoided even pretending to follow equalities legislation for over 20 years. Because the system places that much value on disabled people. Simple appointment booking is the least of it, but still a major hurdle.

Then they keep blaming us for draining the system with missed appointments. When we’re too often not treated as worth providing decent care.

Not even able to add much right now. (Other than that I did, indeed, get dropped from ophthalmology services recently for having to reschedule too many times, while sick and without the support needed.)

Hearing loss charity encourages people to be proactive about their communication needs – Action On Hearing Loss: RNID

fullyarticulatedgoldskeleton:

Being disabled in different settings is fucking wild

Being disabled in settings where you’re presumed to be abled is a lot of, “But why can’t you? I don’t understand. What’s so hard about…”

And being disabled in settings where you’re presumed to be disabled means having people repeatedly assume that you can’t use your own phone and set your own appointments, even though you showed up on your own, after having to use your phone to set an appointment. Or continuing to assume you need help with something even after you’ve been saying repeatedly “I don’t need help with this,” because some other disabled people they know need help with [thing], so they assume your actual communication about your needs is just you being adorably plucky.

Like I need people to understand that abilities don’t come in package deals. Disability is not like an on/off switch, where either you’re not disabled, and therefore you can do anything abled people can, or you are disabled, and therefore you can do nothing. And I need people to understand that they can’t extrapolate a disabled person’s abilities based on other disabled people they know. We’re all different. Even people with the same diagnosis have different ability levels.

Sometimes people’s assumptions about what I can and can’t do are so strong they overwrite clear evidence to the contrary (see above: Setting my own appointments, but still having that doctor assume he’s talking to a caregiver when he calls me on the phone). Sometimes they’re so strong they don’t even pay attention when I tell them in plain English that I do not need help with that.

Don’t assume that just because you know one disabled person that you know all disabled people. Don’t assume even if you have worked in positions where you spend a lot of time with disabled people that you know all disabled people. It’s almost always better to ask questions than make assumptions. And for god’s sake, don’t make people tell you something seven to nine times because you think you know better than they do what they need.

[Form letter text:

In order to ensure your care remains of the highest quality, the Nurse would like to undertake a routine Mental health review, also making sure there is a care plan in place. Please take the opportunity to ask any questions and discuss any concerns you may have and telephone the surgery for a routine
appointment with a Nurse as soon as it is convenient for you


Appointments are bookable between 8.00-10.30 am and 2.00-4.00 pm. You can book at either site, just inform the receptionist which site you prefer.]

That’s a new one. I was wondering why I got two of the nag letters at once, and it turned out not to be duplicates like I was thinking. More of the same (with even more condescending phrasing), and now this too.

This is the NHS. “Routine mental health review” is not a thing unless you have been flagged. (Plus, “making sure there is a care plan in place”?! I think not.)

This practice got taken over by the one where that first awful GP I saw here sent me for a psych consult I neither wanted nor needed–as the only referral ever–so this may be connected. It’s in the records, if from 2004. First time anything like this has come up in about a year and a half of nag letters, though, so I have to suspect the flagging is much more recent.

I was already kinda afraid to even mention concerns like (totally otherwise explained) fatigue, based on way too much past experience. Now this.

Besides the inaccessibility (good luck if you can’t call or now make appointments in person…), I haven’t been back because I did not trust the nurse practitioner I am apparently stuck seeing for diabetes management, at all. Red flags all over the place. This new nag approach really doesn’t make me more inclined to trust anybody there, I tell you what.

cptsdcarlosdevil:

invertedporcupine:

fluffshy:

argumate:

cptsdcarlosdevil:

topher and I were taking a parenting class at a place that also does child therapy for autistic kids and there were some fucking creepy-ass posters on the wall

“when you do UNEXPECTED things it makes people UNCOMFORTABLE and then they DON’T LIKE YOU” <–actual quote

has it occurred to you that it is a bad idea to teach the literal-minded people with social impairments social rules that are not true

should hang this poster in front of programmers and UI designers

How is that social rule incorrect? When unexpected things happen to me, it makes me uncomfortable all else being equal.

Taken completely literally, it would, for example, rule out throwing someone a surprise party, or even getting them a surprise gift.

Lots of unexpected things are positive (like surprise gifts) or neutral (like having green hair). Some people like unpredictable and spontaneous friends. And for autistic kids in particular it’s a useful social skill to be able to go “okay you might think I’m odd if I do this thing but it is important for my mental health to be able to do it so you can just suck it up.” 

Queen tried to use state poverty fund to heat Buckingham Palace

kittencream123:

cocainesocialist:

remember when the queen tried to use money that was for poor pensioners to heat their homes for her palaces? guillotine. 

They refused Not because it was wrong but because they knew they’d get in trouble. Cool cool good to know Britain is the same as it’s always been

Queen tried to use state poverty fund to heat Buckingham Palace

funereal-disease:

cptsdcarlosdevil:

topher and I were taking a parenting class at a place that also does child therapy for autistic kids and there were some fucking creepy-ass posters on the wall

“when you do UNEXPECTED things it makes people UNCOMFORTABLE and then they DON’T LIKE YOU” <–actual quote

has it occurred to you that it is a bad idea to teach the literal-minded people with social impairments social rules that are not true

tangentially related: yesterday I attended a wedding at a church and in the bathroom there was all this “signs of domestic violence” literature. and one of the warning signs listed was “partner looks or acts threatening”

and I swear I spent like ten minutes fretting about whether my fiance could be construed as “looking threatening” when he dresses like a metalhead before realizing that “autistic women engaged to alternative types” is probably not the demographic they are trying to reach here