I am speech impaired and have had it up to my back teeth of people/organisations acting as if my disabling voice loss entitles them to behave as if I don’t exist and/or misrepresent facts stated in my written correspondence.

Medical voice care advice is to speak little, write not speak and not use the phone. This is a fairly new condition for me and I find it very hard to make the necessary adjustments.

People in organisations ignore my faxes/emails and have caused many distressing problems which I find increasingly unmanageable. Owing to the most unfortunate sequence of events since I acquired a duff computer from a dodgy dealer in 1997, I have good reason to have lost faith in solicitors, our learned judiciary, customer services, complaints procedures, the Ombudsmen and my MP.

On 27th May I wrote to my landlord (a housing assoication) re possible alterations to work from home. They have a policy of replying to all tenants within 5 days. About 3 weeks ago I wrote again. Their Programmed Works Officer was inspecting the property about 2 weeks ago and said he will write. To date he has not. This is one of many letters they have ignored.

This is just one of many instances I must contend with on a daily basis.

I have just returned from discussing this very serious problem with my GP who is impressed with my handling of a very difficult medical condition and regrets she is at a loss to suggest what else I can do to help myself.

All suggestions and practical offers of help in particular most gratefully considered.

Sorry to hear about your condition Wendy.

Have you tried speaking to your Councillor? They can be very good at geeing official bodies along!

Good luck!

K x

Unfortunately I've had the same problems with certain COuncil officials who have been as guilty of this as all of the rest. I had simply included 1 issue and 1 organisation because the problems involved with this condition affect all aspects of my life.

That sounds terribly frustrating. I don't much like using the phone, and I will always write or email in preference, but 75% of the time that gets me nowhere and I have to then ring up to chase some sort of response. I can imagine how frustrating it must be if you can't do that.

But I've no practical advice to offer sorry :(

Wendy,

(I assume that it is Wendy!) Please ignore anything that you know already. You appear to have the literacy necessary to hold your own.

You do mention people ignoring "faxes & e-mails". It is unfortunate but, along with telephone calls, I think that you will have appreciated that it is possible for people to ignore these without fear of being held accountable.

You also refer to letters and I think that letters, sometimes recorded delivery, are the best way to hold people accountable.

It is also important to keep to the point and as simple as possible. It is better to write three seperate letters than to confuse one letter with three different subjects. Letters with more than one subject give the recipient the opportunity to avoid one subject while replying to another.

Strategic knowledge of the best person to write to is also critical.
Sometimes it can be more advantageous to go to the top (not always).

Again strategically, it can help if you copy your letters to relevant people both within and outside the organisation.

Is there no charitable organisation that can champion your case?
You know, while writing this (and googling for answers) I am sad to realise that I do not know the current acceptable term for "lack of speech disability".

If you want help in drafting letters for specifics or help in research, let me know. I can't promise anything but who knows?

Good Luck!

CGK

Many thanks for your very kind offer of help which is very gratefully appreciated and accepted. Mmh Recorded Delivery doesnt always work even when I attach a copy of my hospital's voice care card which I'm supposed to carry around with me.
I'm totally swamped with the stuff and cant cope with it all. Where, when and how would you like to start?

Well, er, ....... give me a call!!!!:D

They may give you priority if you give a short explanation in your letter heading that you are voice impaired and cannot telephone.

Assuming you already haven't!

ALL of my faxes, emails and letters include a statement re my voice loss. I have a copy of my hospital's voice loss card on this computer to print out and attach to letters/faxes/emails as needed.

Many of these organisaitons are Public Sector, supposedly reputable companies or Corporates. With few very notable exceptions most of the people I feel forced to deal with have heard the variability of my voice and very great difficulty I have when speaking.

Originally posted by cgksheff
Well, er, ....... give me a call!!!!:D

What's your number, :D

I too am sorry to hear of your speech/voice difficulty. It must be taking quite a bit of adjustment for you but you come across as wholly capable and competent in other ways.

Like many people, I prefer to use e-mail than the telephone. When I first became ill a couple of years ago I would frequently not remember the next word in the sentence and subsequently lost my confidence when speaking to people either in person or over the telephone. Using e-mail enables me to think about the words and when I have a mental 'block' I have time to think of an alternative word or eventually think of the word that I want to use.

I don't feel that I experience any less of a service or a lack of response from people, though waiting for a response to e-mails can be frustrating.

One of the things that may help, is a) making sure the e-mail is addressed to the correct person b) putting a deadline for an expected reply and c) asking them to confirm receipt of your e-mail/letter.

Another source of help/advice may be the DRC (Disability Rights Commission) www.drc-gb.org.

As with CgkSheff, PM me if there's anything you think I can do to help.

It is extremely annoying when you send an e-mail and it seems to disapear into 'limbo land' and you don't get a response. I'd put in the first line that you have problems with speaking and so would really appreciate a prompt e-mail response. I've also discovered that if a department ignore you then it is usually possible to climb the ladder and grumble to their bosses which may seem nasty but some people honestly do need a kick up the bottom.
If you have any particular organisations that are causing you grief please give me a bit of info and I'll quite happily bend their ear on your behalf.

Originally posted by cgksheff
[B
Is there no charitable organisation that can champion your case?
You know, while writing this (and googling for answers) I am sad to realise that I do not know the current acceptable term for "lack of speech disability".

If you want help in drafting letters for specifics or help in research, let me know. I can't promise anything but who knows?

Good Luck! [/B]

cgksheff:

Many thanks for your suggestions; the correct term is speech impaired. I am sure all of the sufferers (estimated at 2.5 million UK-wide) face similar problems because the nature of this condition creates the conditions for that kind of behaviour. Unfortunately, I dont think there are any charitable organisations that are able to champion my case.

Have you thought of getting an advocate? They can be really helpful just helping you get heard and help getting things done with you. As they are part of an organisation they may have accrss to extra information which may be useful for you.
There's plenty of groups in and around Sheffield.

i genuinely sympathise with your struggle wendy. unfortunately however i do feel that you are being treat more or less like the rest of us, i wrote a letter of complaint to macd's 5 weeks ago & have had no response.
most organisations try to offer what the public want & that is usually instant access i.e telephone responses., and i can imagine how peed off this makes you feel.
if you would like me to speak to any organistaions/landlords on your behalf pls. pm me . unfortunately you will have to divulge a lot of personal info to me.

just as an aside bearing in mind my means of earning a living - u could set up a Power of Attorney & a responsible adult could then conduct all your business on your behalf.
there is a fee for this legal work but it lasts forever so the true financial cost is only pence per year.

again pm me for any info.

Originally posted by ickle
Have you thought of getting an advocate? They can be really helpful just helping you get heard and help getting things done with you. As they are part of an organisation they may have accrss to extra information which may be useful for you.
There's plenty of groups in and around Sheffield.

My GP and I discussed this yesterday but neither of us really knew enough about how this works in practice and I would need more information in order to take properly informed decisions.

Originally posted by willman
i genuinely sympathise with your struggle wendy. unfortunately however i do feel that you are being treat more or less like the rest of us, i wrote a letter of complaint to macd's 5 weeks ago & have had no response.
most organisations try to offer what the public want & that is usually instant access i.e telephone responses., and i can imagine how peed off this makes you feel.
if you would like me to speak to any organistaions/landlords on your behalf pls. pm me . unfortunately you will have to divulge a lot of personal info to me.


Please may I assure you things are different for speech impaired people. Unless you are one of the unfortunate 2.5 million (+/-) fellow voice loss sufferers you can not possibly begin to imagine or understand the problems and difficulties people in my position must contend with on daily basis, not to mention all the abuse which goes with the package. As a matter of course people ridicule me, are extremely rude and intolerant because of my voice which is quite unwarranted.

Does any one know more about the advocacy service to which ickle referred and how this works in practice for the person being advocated.

Basically you contact the advocacy group and someone is assigned to you. You then meet up with them and look into ways they can help you and get things done.
Your local Citizens Advice Bureau should be able to give you more information. I tried to find something suitable on the net but it came up mostly with specialist groups for people with mental health issues and learning disabilities.

Hi, I don't know if this is of any use. But would type talk be of any help.

www.typetalk.org

It is a service provided by BT mostly for hard of hearing people but it may be of help in your case.

To use typetalk I would have to type twice, once for the call and again to confirm the main points of our discussion, so increasing my work load and increasing my stress both of which I am trying to cut down. As things stand I have had to ruthlessly eliminate anything that is not urgent or essential for my immediate needs. I have discussed this and other aspects of the service with my speech therapist, GP etc who agree unanimously it is unsuitable for me.

When this condition first developed my GP thought it is very useful I am a fast touch-typist and suggested I should communicate by wordprocessing on a PC.

It was recently been agreed I am to have a tablet PC with text to speech, email and WP software applications for my communication needs which is considered to be the way forward for me.

As I am sure you realise communications are a bit of a pain although I do appreciate your having taken the time and trouble to find this link.

bump,hi wendy,this needs a little kick back to the top

depoix :D mega thanks. This is a major problem for me because almost all of the so-called corporate & public sector bodies etc that I deal with to deal with my personal affairs ignore or reject my medical voice care advice, duck and dive to cover up unacceptable practices.

If I thought it would help I'd copy faxes with transaction reports to the Editor of newspapers with a cover letter asking if they could arrange for replies from all these highly respected organisations at their earliest convenience.

I wish I could say this condition is unique to me. With at least 2.5 million speech impaired people no-one can say that or that it is not cost-effective to deal with my communications needs.

depoix :D mega thanks. This is a major problem for me because almost all of the so-called corporate & public sector bodies etc that I deal with to deal with my personal affairs ignore or reject my medical voice care advice, duck and dive to cover up unacceptable practices.

If I thought it would help I'd copy faxes with transaction reports to the Editor of newspapers with a cover letter asking if they could arrange for replies from all these highly respected organisations at their earliest convenience.

I wish I could say this condition is unique to me. With at least 2.5 million speech impaired people no-one can say that or that it is not cost-effective to deal with my communications needs.

For example I asked the Court to spend just £200 +/- on text to speech software with an amplifier (£82 +/-) which can be installed on any windows-based PC only to be advised it is not cost-effective. How much do they spend on inductive loops for deaf people to communicate and/or sign readers for hearings which go on and on and on for days at a time.

wendy I've Pm'd you

Originally posted by wendygs
It was recently been agreed I am to have a tablet PC with text to speech, email and WP software applications for my communication needs which is considered to be the way forward for me.

I really appreciate all the PMs I've received from everyone with their very kind offers of help which I am very interested in and following up save for one PM.

The reason I am not following up that specific one is because it is a sales PM promoting their IT business. I would really prefer sales promos be posted to the forum for the benefit of all rather than to my PM which is as implied by its name a Personal Messenger with clear guidelines given in the Forum User Notes.

As a result I realise it was remiss of me not to have mentioned that when my speech therapist finally agreed in February 2005 that an IT route is best suited for my needs I had spent 12 months exploring, analysing and elminating non-viable options.

I am therefore glad to say DWPs Regional Access to Work Manager saw my completed Access to Work funding application they had not received such a comprehensive needs analysis with a reasoned statement for my preferred options which they decided are justified.

To cut a long story very very short it included potentially suitable IT manufacturers and software products which were recently agreed. I posted any residual queries in the Computer & Tech Chat forum and again I would ask NO PMs with sales pitches.

Many thanks for your co-operation nitelife40.
wendygs

Glad that you've had such a positive response then, Wendy!

All the best.

:)

whats your plan of attack today then wendy? keep at em,you will win in the end im sure :wink:

Just discussed all these great offers of help with my friendly neighbour who has very kindly offered to speak with the Deputy Manager at his local pub on Monday to see about arranging use of their back room so that I can meet all you wonderful people who have offered to help.

Please post on forum times/dates that are convenient because it is easier for me to work with than individual PMs.

Nightlife40 please post to forum rather than my PM I cant see what is so private about your set of IT skills that need to be discussed by PM. I hope this is not going to persist because I am beginning to find it a tad irritating. Thank you for your co-operation.

Originally posted by wendygs
Just discussed all these great offers of help with my friendly neighbour who has very kindly offered to speak with the Deputy Manager at his local pub on Monday to see about arranging use of their back room so that I can meet all you wonderful people who have offered to help.

Please post on forum times/dates that are convenient because it is easier for me to work with than individual PMs.



Um. You are joking, right?

:confused:

Originally posted by SHsheff
Um. You are joking, right?

:confused:

So am I, :confused: . safety and security are important to consider when meeting internet contacts for the first time.

Voice loss is a physical barrier; it prevents me accessing services. I have scanned my hospital voice care card on this computer to attach to letters/emails/faxes. My standard header reads:

--------------------------------------------------------------------------------
My GP and specialists advised me not to speak on the phone, speak little and write instead due to disabling voice loss. I use email as you might use the phone. Please treat this email as a voice call, do everything possible to reduce my writing unnecessarily, reply by return and allow more time for my reply.
--------------------------------------------------------------------------------

I would most gratefully welcome suggestions as to how I can improve its clarity to avoid all of the distress & unpleasantness I suffer from the many organisations I deal with daily in trying to manage all aspects of my life.

The objectionable attitudes I experience as a voice loss sufferer make this disability an absolute nightmare to manage so I hope this sheds some light on the difficulties voice loss sufferers contend with daily.

In addition I cant PM anyone because its full and I dont have time to deal with it now so the options are either to post to the forum or follow the instructions when you receive the message that my PM inbox is full.

hi wendy,cant you empty your pm box? :wink:

Depoix

Part of the reason my PM box is full is because of the PMs from my post in the thread SENTA started about work available see www.sheffieldforum.co.uk/newreply.php?s=&action=newreply&postid=526090
Unfortunately I'm still waiting to hear from SENTA's Director with a view to taking things forward constructively and as you can see from the link over a week has elapsed since my first post.

Kindest regards
Wendy

Originally posted by wendygs
Depoix

Part of the reason my PM box is full is because of the PMs from my post in the thread SENTA started about work available see www.sheffieldforum.co.uk/newreply.php?s=&action=newreply&postid=526090
Unfortunately I'm still waiting to hear from SENTA's Director with a view to taking things forward constructively and as you can see from the link over a week has elapsed since my first post.

Kindest regards
Wendy this post seems to be slipping further down each day,im sure that theres some one out there on the forum who knows some one who could help wendygs. she cant speak up for herself and she is part of the forum comunity,she is asking for help and a lot of us have tried,but she needs some one to give her positive action not false promises,some one just try a little bit and get her a job to build her confidence up,thanx........

I'm not sure if this will help you. but our firm once had a call that was read out by the voice contained in MS Word (?).

I think the caller had written the text, then called, then put the phone next to the speaker.

It took a couple of goes (and the caller did restart the message) but as the message started with something like "Please don't hang up, I'm speech impaired and this is being read by my computer as I am unable to speak over the telephone..."

It got quite prompt attention because it was so unusual, and somebody made it their job to sort it out, rather than putting it in an in-tray.

It might be worth a go - and it could work well with an answering machine out of hours. :thumbsup:

Originally posted by Tony
I'm not sure if this will help you. but our firm once had a call that was read out by the voice contained in MS Word (?).

I think the caller had written the text, then called, then put the phone next to the speaker.

It took a couple of goes (and the caller did restart the message) but as the message started with something like "Please don't hang up, I'm speech impaired and this is being read by my computer as I am unable to speak over the telephone..."

It got quite prompt attention because it was so unusual, and somebody made it their job to sort it out, rather than putting it in an in-tray.

It might be worth a go - and it could work well with an answering machine out of hours. :thumbsup: cheers tony,its a start,i dont know ths lady but im a sucker for a good cause and this seems like one

Tony many thanks for your suggestion and from what you've posted, perhaps I wont dismiss all telephone calls as totally ineffectual after my communications system is in place.

To answer your question, DWPs Access to Work Technical COnsultant approved funds for a text to speech (TTS) software product and training. However there isnt any point buying it until I get the Tablet PC they approved as part of this package. Unfortunately the IT manufacturer confirmed that their customers have been buying up evaluation systems rather than returning them and so dont have evaluation systems; although the manufacturer has ordered more evaluation systems it is taking a while. In the short term it's a pain but longer term I think that's probably very good for me.

Originally posted by depoix
cheers tony,its a start,i dont know ths lady but im a sucker for a good cause and this seems like one

depoix many thanks for you invaluable and much appreciated inputs. I am very touched by it and cant begin to tell you what it has meant to me. :thumbsup:

Personally I find PMs a pain because it takes for ever to load, do whatever its got to do and let me get on with my work. I've also had to delete a lot of stuff in my PM I would have liked to keep but needed to release space for more PMs. :(

I'll resend that email. :) :thumbsup:

By the way I'm deleting all of stuff regarding Midland Mainline because I've just had to put in a further complaint about their Customer Services Department to the Rail Passenger Committee contact I found on the net last August.

Wendy - I (and, from what you indicate, a number of other people on here) sent you a PM days ago offering help.

I sugggested that you could email me with a brief outline of the problem(s) you were struggling to get resolved and that I would be happy to make a phone call/several phone calls on your behalf to bring the matter to the relevant person's/people's attention.

This is a simple service that is often performed on a voluntary basis (tho I was offering in the capacity of a 'friend') to assist, for example, blind or visually-impaired people. People who can't see properly struggle to deal with officialdom too. Deaf and hearing-impaired people are also not able to use the telephone in the usual manner, of course, so also have to turn to friends or helpers to make phone calls on their behalf.

I appreciate that you may require more privacy than this service can afford and may be looking for ways to be totally independent of relying on another person to make the phone calls for you.

However, the use of the word 'urgent' in your thread title gave me (and possibly others) the impression that you needed 'urgent' assistance to resolve matters of pressing importance, hence my offering to give up personal time to help you out. It now appears from the way the thread is going that you're looking for assistance of a more on-going, technical nature to provide longer term solutions to your situation.

Maybe it would be useful if you could clarify exactly what sort of 'urgent help' you're looking for?

:thumbsup:

In response to your questions, SHsheff, when I posted this thread I'd run out of ideas to deal with my voice-care needs. I'd had a highly distressing meeting with my GP who thinks I manage a hard situation well but after 18+ months had run out of ideas for how to help myself. I was acutely distressed with good reason and hardly thought how my choice of words would be interpreted.

You ask what I mean by "urgent". For me it's all urgent because I am used to having control of my life which is suddenly no more. Desperate as I am for full recovery of my voice it seems unlikely after 18+/- months have passed. The unkindness of people one would like to think know better has not helped: our highly learned, most humble judiciary; court staff, social housing landlords, council officials, customer services, ombudsmen, specialists, HMG officials you care to name I’ve dealt with etc, etc.

In my efforts to communicate I’ve tried a servox device; my speech therapist agreed it is of no use to me whatsoever. I found pressing my hand hard into my larynx altered my voice, but was very painful. My atrocious handwriting is unhelpful for day-to-day conduct of my life. I can not lipread/use sign language; people I have the misfortune to deal with dont understand it. I used a speaker to read out a prepared text for a court hearing; it was inadequate because facilities were not provided for cross-examination or questioning and I worked solidly in the preceding 3 weeks to prepare that statement for a speaker who was as insensitive as the court staff and judiciary to my voice loss.

When I posted to the forum I couldn’t have known what would come out of it and I had even less idea of the sort of help I was looking for. That's not quite true; I wanted someone to wave a magic wand, recover my voice and resolve all this dross.

But life's not like that. I suppose help, support, ideas and words of encouragement in order to find practical ways to deal with all of these challenges. The posts and support I have received have helped me think how to face challenges and see opportunities.

SHsheff, I'm not sure if or how this helps with answers to your questions; I have spent the whole day thinking about answers.

Wendy,

Like SHsheff, I also sent you a PM with an e-mail address.
You acknowledged it on this forum.

I suggested that, based upon your original posts, you contact me by e-mail and advised me what specific problems I could help you with.

You have not taken up this offer.

Do you still want help with any specific issues?

Yes CGKSheff, I do and I'd also very much like to meet up however as I'll be away for a while cant do anything until I get back. One of the main problems I have because of this voice loss is that unless something is really simple and uncomplicated I need longer to respond because I need to think things through. My GP, speech therapist and others advised me to take my time and not rush to do things. Bit of a pain but that's the way it is with this condition.

OK!!

That is clear.

Let me know when you do need help.

Originally posted by willman
just as an aside bearing in mind my means of earning a living - u could set up a Power of Attorney & a responsible adult could then conduct all your business on your behalf.
there is a fee for this legal work but it lasts forever so the true financial cost is only pence per year.

again pm me for any info.

willman, I am still puzzled by your means of earning a living and wonder if you'd mind explaining a bit about this, how this affects setting up a Power of Attorney and if you really think that is advisable. Many thanks wendygs

Originally posted by nitelife40
i mentioned before counselling to accept herself at the moment may be a good option.everyone is offering genuine good advice but she keeps repeating herself ...(sign of distress) and posting left , right and centre. At the end of the day even after everyones offer of help she will only do what she wants to do, (as we all do) , regardless of all offers of help ...:) the lass posted on here for help,we as usual do our best to advise,but we do not know what she has done in the past.

perhaps she has tried all the options we offer before she came on to the forum,i dont know,but i dont think i would go so far as to say she needs councelling,how do you know her circumstances? sorry but this seems more like a slap than an offer of help

Depoix many thanks for your encouragement for all the reasons discussed by PM/email etc. :D

To summarise nitlife40 sent me unsolicited PMs. I asked him to refrain but he continued to do so. I posted a request for advice about this situation on the Techie thread solely to resolve this. I therefore learned nl40 has apparently used this undesirable practice with at least 1 other forum member whose name eludes me.

Sadly it would appear we are no longer able to clarify this because the entire thread may have been removed shortly after nl40 posted something on that thread at approximately 7.04pm yesterday evening. As I have more important things to do with my time than get embroiled in an on-line battle with nl40 I opted to ignore him. However he doesnt seem to like that either.

Getting back on topic, ie how to effectively manage my life with this disabling loss of voice I am more than happy to summarise just about everything I've done:

Originally posted by wendygs
In my efforts to communicate I’ve tried a servox device; my speech therapist agreed it is of absolutely no use to me at all. I found pressing my hand hard into my larynx modified my voice, but is very painful. My atrocious handwriting is unhelpful for day-to-day conduct of my life. I can not lipread or use sign language; people I have the great misfortune to deal with dont understand it. I used a speaker to read out a prepared text for a court hearing; it was inadequate because the court failed to provide facilities for cross-examination or questioning and I worked solidly, ie often 3 days at a time without any sleep or meal breaks, in the 3 weeks before the hearing to prepare a statement for a speaker who was as insensitive as the court staff and judiciary to my voice loss.

When I posted to the forum I couldn’t have known what would come out of it and I had even less idea of the sort of help I was looking for. That's not quite true; I wanted someone to wave a magic wand, recover my voice and resolve all this dross. :D


Fraid it's work on court cases rather than hols. I'll see what I can do about that stick of rock :)

sent a pm regarding power of attorney.

MOD: Let's keep this thread along the subject Wendygs has outlined: practical help for her speech impairment. All other comments should be kept to PM (unless you've been requested not to). If there are any problems with unwanted PMs please use the 'contact us' link not post on the forum.

If your inbox is full with information that you need to keep then it might be an idea to copy & paste all the information you need keep into a Word or notepad document.

MOD: Just to clarify - if this 'off topic' debate continues then bans will follow.

For the first time I can recall since I began the Sheffield/London commute, I enjoyed the scenery, didnt touch my paperwork and had the luxury to really think about the suggestions from depoix, hels, cgksheff, SHshef, Tony & Wallman and were instrumental in my seeing I needed a major rethink on the issues of this disability.

Rather than going for a solutions led approach, I've decided to undertake a major needs analysis to identify the help and support that I do need to progress.

Arent I fortunate to be a personal development practitioner and therefore have a good understanding of the tools available to think for myself.

just slightly confused as to why youve been asking for the help then wendygs?

Admin: Nightlife40, please stop this now. We're all bored.

I'm closing the thread. If someone wants it open, please drop me a PM in a day or so.