The needs of deaf and HOH people are diverse. We listen if we have residual hearing, we lipread, we use body language, gesture and facial expression. We may use hearing aids, including CI and BAHA. Some of use a sign language like BSL but most will use other communication methods such as speech to text, lipspeakers, personal listeners/loops, communicator guides, cued speech and more. All of us seem to have issues with Access to Communication whether it is for work or for social purposes that we need to address as a group. There are many other issues in access to services, information and facilities that also need to be debated and acted upon.

Malcolm Bruce MP and PMB on deafness


Dear all

Suzie Jones and Lidia Best are invited to a meeting on 3rd September 2013 at the Parliamentary Office of Sir Malcolm Bruce in relation to his Private Member’s Bill on deafness. You can read more about this Bill below.

Our thanks goes to National Association of Deafened People for supporting us with providing speech to text reporter and taking interest in this meeting.

We would like to know, what message shall we take to Sir Bruce Malcolm? What is most important to you? How lack of communication has affected you?

Andy Palmer interviews Malcolm Bruce MP

Comments from Pardon? members

Being deaf isnt physically seen but it becomes physical to those around us who are hearing because of communication needs! Many children do get this but when u are an adult its isolating so it needs highlighting. In reality we become the hidden disability that gets shoved aside. Much more funding us needed to traib lipreading classes .. to fund and train text to speech translators and support interpreters. Also advocacy for those in employment would be great too.

This is another bug bear as well, including the fact that we had to seek communication support. There is no law provision apparently to ensure that MP’s provide communication support when meeting with their constituents.

Its just so stressful at times gettin the right support all time your like fight fight fight all time. No wonder people dont work

Awareness of it as a disability, to most folks it’s “just deaf” or “only deaf”. Communication support at all consultations with medical personnel, finance personnel, etc. proper communication facilities with all commercial organisations who we need to communicate our needs to instead of using third persons etc. plenty of others wanting to add to the list …

need like the company exsample bank , aa, and insurance to by law to enalbe to email or text when we complain about service when complain they keep saying to ring then to slove the plms. when book ticket online for show if need carer , you have to ring them , but can’t deaf , and it there charge for fee if you ring for free carer ticket .online dont charge if book ticket but cant book online free carer. email in real time not wait for replay in 24hrs or 48 hrs and 10day

Would be nice if the UK adapted to captioned telephone service for deaf and HOH people. Initial cost would be to change the relay system but the good thing it would allow people to communicate better especially shut-ins

I would push in all ways for sms which allows mobile contact with anybody and at the least it should be email with quick response not several days later by email and then a response they are on holiday until the end of the month when you are trying to contact an audiology department at a hospital about an important issue ie I need help. My main concern lately has simply been trying to communicate with the audiology department and this makes me cross because if I complain they can make my life even more difficult than it already is so I have to accept it. I feel like audiology departments have us over a barrel when we need their help.

I don’t want to ruin the relationship with my audiologist because with my BAHA implant coming I need him and over the next few months what he stands for will help me but I am certainly not happy simply due to lack of communication. I cannot believe audiologist don’t have back up staff if they are on holiday for well it must be at least 3 weeks. He is not back at work until the 27 th August and I first emailed him in desperate need on the 4th August to beg to borrow a BAHA on a head band for an interview.

to be honest, I’ve NEVER been offered communication support, ALWAYS have to ask for it, and every time it’s been “Do you want an interpreter” – never “Lipspeaker” – there is a lot of awarenss raising to do in this area. but I’m deafer than most , people do take my efforts to communicate for granted – if only they realised…)

I have a vested interest in successful launch of Next Generation Text Relay scheduled for April 2014 to help me work more mobile in my job. I gather this is in the hands of OfCom but very little news at the moment – my colleagues in US already have this ironed out as well Video technology which will also take us into the future. On a positive front, I have fantastic support from AtW with funding for speech-to-text support which is a great asset to my job.

last time I asked, I was given an interpreter who also does speech-to-text reporting – I had queried the “interpreter” expression as I wanted to make sure I had the correct support

there’s so much variation from Trust to Trust which doesn’t make sense (post code lottery) – wouldn’t NHS benefit from leveraging technology nationwide ? & that’s before I comment that ability to set hearing aids up correctly varies from very poor to OK – not a patch on private support that I’m seeking to get via Access to Work

never been offererd but if they did there say oh you want bsl interpreter , i rather have notetaker or something written so i have in writing to take home to read over as i dont have good rmerory

never been offered one but stole someone elses ie. I used their lipspeaker. lol Funny the person who had her was better at lipreading than me so didn’t need her but as soon as I glanced in her direction she performed for me it was wonderful lol!

I thought that the development of IT would greatly enhance the lives of deaf people. However Govt Depts including DWP, HMRC, Audiology and other NHS Departments still insist on the telephone. I am not stupid and so resent to be told to get someone to phone for me and they then get told that they cannot act on my behalf without written permission, even a Power of Attorney was requested on 1 occasion! If someone rang on my behalf and said they were me the Dept would be none the wiser, however I get told that email is unsecure! I think it is imperitive that all Govt offices are accessible to the deaf, just as a ramp has to be provided for a wheelchair.

Hospital appts are always strained .. hard to hear names n hard to hear voices

We need to ask for a dialogue with all organisations we have problems contacting (ie gov. Departments, NHS, GPs, Banks, Insurance, etc etc) so a proper co-ordinated policy regarding how we make contact (including in emergencies) can be devised. These situations are too important to be just left to luck. If we agree to using a third party, and anything goes amiss in our finances, the individual who spoke on our behalf lays themselves open to accusations regarding use of the knowledge they have gained and that’s not right. Neither could I vouch for my neighbours/relations honesty (much as I may or may not like them!), which is what we are being asked to do in some situations.

sms and email services that get within 12 hour responses I have had numerous instances of this being offered but when used by me no response or 6 days later responses. I am still on the NHS audiology department on this one. Actually sms should get immediate response like a phone call ie. I have lost my letter what time is my appointment? I remember that one as I sent it at 8 am and got no reply so ended up texting my husband at work he had to phone then text me the time. When I got to the appointment 6 hours later I said I texted you and he said oh I haven’t looked at the texts today yet! This was 2:30pm!!!

I like the idea of an immediate response to an SMS – we need to define what are the equivalent services to those available to hearing people & what the acceptable standards are e.g. instant response to an SMS in the same way that we expect a telephone to be picked up. We should also have email access to our GP surgery. My GP though it was a great idea for me to email in, which would be the equivalent of having a GP call-back instead of having to go in for an appointment. I’ve contacted the Practice Manager and not had a reply – have emailed again & also spoken directly with Reception to leave a message (highlighting that the actual number of registered deaf people would be very small) – still no response & not acceptable!

So it is basically not about them just giving email access and sms access, which many do, it is about them responding to both those methods of communication within a limited time span or the provision of those details is worthless.

Remembering that my GP told me that they couldn’t make an exception for me using email, as I was one in 18,000 patients. In other words, there were no other deaf/HOH folk amongst the patients…

response to my request was exactly the opposite…too many would want to use it & they wouldn’t have time to deal with them, so I asked them to make it available to the relative few that NEED it

I was told by a receptionist [not the doctors they are lovely] that I should get a better phone or get someone else to phone for you when I said I couldn’t phone for an appointment and when they were open and I went in all the appointments were taken.

When I emailed to point out my problem to the surgery I was informed there was one other deaf person only in my area and she got someone to phone for her in other words I was being a pain in the neck. This surgery covers 2 different sites and at least 6 doctors minimum. Well there are so many elderly where I live I cannot believe only 2 of us are deaf. I don’t know the population but it is 2 large villages in fact one may be a town.

Provision of better deaf awareness especially in the NHS. Also better access across the board… Also better communication support ie not just BSL terps.

As a deaf child you get massive amount of help to be oral. When you turn 16 that support stops. No one tells you about what communication support you could have, you are abandoned. This leads to many moving to bsl as there appears no other options. Also as child plenty accesories and batteries for ci, as adult you are treated like dirt if your ci breaks or you need extra batteries.

I think a national awareness programme needs putting in place. Deaf awareness training needs rolling out nationally, especially within the Health & Social Care Sector. I feel people dont realise that all kinds/types of deafness is still a disability. I get the impression that only those who use BSL are thought of as disabled and thats discrimination…….

I attend Birmingham as does my son. When his CI breaks they give him a replacement via post immediately. When mine broke I had to go to them and they initially suggested I wait 2 weeks while it was fixed. Luckily after some debate they agreed to give me another one. But the attitude is very different for under 16. However the real point I wanted to make is that at 16 or when they consider you an adult there was in my day no-one to tell you what support you could access and support seemed to be bsl with little option for anything else. We need more awareness of the support this website talks about. I was born deaf and until I came on this site I had no idea that there was any other communication support available. Mabye it is just me never thinking to ask and always making do but I think if you go deaf later in life they may tell you about this support but they certainly didn’t used to tell people when they became an adult and lost all the support they took for granted as a child.

Not only do they need Deaf Awareness Training, but there should also be a programme of refresher sessions. These could also help to keep all involved up to date with the technology changes.

I am in London RNTNE. I absolutely agree with lack of info about other forms of support. It is simply not given out and your point about others not knowing and moving to use BSL just because they have no clue what is available is spot on.

I left school at 16 and after having hearing tests every year, I had no contact with any ENT department for approx 18 years (I think!) It was only when my HA’s were just about dropping to bits that I got my GP to refer me to ENT Dept. Although I realise I could have instigated an appointment much much sooner, there is a problem with the NHS keeping in contact with people once they reach ‘adult’ age.

Feel free to tell him that discrimination DOES happen within employment. whenever I have told the truth about my deafness on application forms I never get an interview. But, when I ‘hide’ it – no problem!!! Its 2013 – why should I have to ‘hide’ my deafness to prove I can do the job?????

I’ve come across deaf parents who wishes some schools send a text msg NOT voice if need to contact them regarding their child ie need to be picked up due to taken ill/injury etc but some schools only provide fax (not good as not guarantee parents are home that happened to me in the past!) and not use voice mail. Recently one parent asked if the school could text but they said they werent allows but only use voice, whats the difference?? Parents should have the freedom of which type of contact? Handy if schools need to be closed yet not all can use the radio…

True abt discrimination .. i applyed for 50 plus jobs . Told each one im deaf didnt get to job interview.. changed aporoach didnt tell them and got abt 10 interviews . When i told them im deaf for interview i didnt get pass that stage. If i didnt tell them and let them see i am capable they give me a chance .. im now employed. Social serv also seem to be slacking on support for deaf adults and i have concetns that vunerabble adults dont get the right support. How physical the disability can be eg going to the shop… oaying for things. Contacting doctors in emergencys… getting things ordered.. how hard n tiring it is to get someone to help u. To keep reminding othets u cant hear to speak clearly .. getting people to alert u . How sonetimes u develop a fear because u dont know if ur going to be left behind or in danger eg i got locked up in a library cos closed n never heard tannoy.got on wrong train vcos it wasnt on announcent board and ended up 50miles in another county.. ended up in the middle of a big fight on a street and had to be dragged out of it.. constantly having raming trolleys in the back of me cos im in the wsy . We do try to overcome it but life is hard hence why we need the support.

I was never offered a communication support at NHS. Maybe it should put it on standard appointment letter to inform patients who may not heard of it or need communication support.

all London NHS appointments do have that on their standard letters. The only bummer is that they ask only about language need.

I have neither been offered communication support for NHS appointments nor have I asked for any. Also I have never found a need for any as the people I see are generally one to one. No one should ever assume anything. They should first meet the individual and see how things go. Even a pen and paper, computer, iPad could resolve any issues. If there are more than one person dealing with an individual then that changes things and communication support will be needed

Increasingly the onus is on us to ask for support, even when we have no idea that we have right to it. Maybe what we need is something like “miranda?” . Every time police officer arrests someone, they must state that the person has right to free lawyer. It is a different scenario but still, more responsibility on authorities side

The biggest bugbear is people always assuming things (e.g. you are deaf and therefore a BSL user), not listening to individuals (e.g needed SST not an interpreter), imposing things that are not needed (e.g. interpreter provided even when not requested) The list is endless

Why do Job Center plus Havant and Portsmouth STILL refuse STTR’s a lot of time? I was 1 once and is still to late to sue them? Remember all they look at is Deafness and no further, ie ears can do many things, balance,Tinnitus,Distress,Isolation, Depression. But as I said Deaf is Just Deaf to them. A blind friend finger spelt on my had once ” you know at least blind i can hear and join in conversation, you cant”. To face Atos without support is like commiting suicide, but what you if support you ask for not there? Walkout then lose benefits? As someone said earlier the LIST is endless. No disrespect to sir malcolm’s daughter being Deaf,but I felt at younger age the help was there. Acquired loss to others later in life is HELL. no BSL etc etc etc. Sir Malcolm Bruce …..Mp..
Strong B.S.L supporter, rest tag along.

the reason why people continue to sign is to get you to start learning which you are doing. To me that is a ruse to get non signers to start learning. As far as I am concerned they can b**** off. If people continue to sign to me I simply walk away and ignore them. It is no loss to me. I flew to Ottawa last year to meet some cousins for the first time. One of the cousins met me at the airport and we were chatting fine. I was annoyed when a woman came and asked if I wanted an interpreter as she would do that. Told her no and before I could collect my thoughts in what I really wanted to say to her the car she was waiting for turned up and she hoped into it.

Ask for a bill on total communication for all from nursery level to senior age. Speech with signing helps many people regardless of type of hearing loss. It is the whole spectrum that makes communications easier and helps the hearing impaired understand what is going on without stress of following lip patterns alone or straining to listen without missing out.

Speech with signing also means a dependency on both. It would be very hard to separate speech from signing. A lot depends on the aptitude of the individual.

do you mean you would want all children to learn some sort of signing, or just those with a hearing loss? If you mean all children, thats never gonna happen. Its ‘deaf awareness’ that needs pushing out nationwide like dementia awareness was – I keep saying this over and over, lol lol!!

Lots of things being suggested here. It’s worth remembering that an MP – those who really do their job – will have time constraints. I think my own suggestion would be to tell him we are people; people who are easily hurt; people easily dismissed by ignorant people; people who, despite our silence, our tinnitus, our Meniere’s disease, our Labyrinthitis (sp) are desirous to communicate as are those without hearing difficulties. We are people; many of us have and do, achieve great things, and we do these things because we are people. Whatever can be done to assist in any viable, positive way, is good, but above everything; we are people… Treat us as people…

Deaf and disability awareness and more help getting disabled people into employment

I have just emailed the matron of a local hospital asking for just that …. Questions regarding coms support and contact SMS email etc for HOH, along with suggestions for support (a dept is using Dragon software for producing instant reports on scans, so suggested looking at that for coms support), oh and a notice board in Reception, for information on local, national orgs etc. very v positive reply! But I have my fingers crossed…

All GPs to have software uploaded on their computers for remote text or signing access to clear communication. That should be compulsory in every health practice and hospital centres.

Easy access to GP (TEXT number!) All Taxi services, subtitled educational materials. These would benefit EVERYONE, and are easily doable!

I know my GP centre has given me SMS numbers to text the receptionist.  I have to ask my mother to get them to provide SMS numbers for me,

They do sms at my surgery for doc appts thats it

Not at ours. Will have to take it up with them

Only just introduced it thou . Mind u i cant fault my doctors they are great should use them as a model cos when i had my ci surgery they used pc to type up what saying. Even has a electronic board for names n receptionist always comes to get me. And they emailed me aswell if any queries can say much abt personal stuff due to dpa but they always say oh ur bloods bk can u please contact us. And have been gd with text relay too

point out that the immediate problem is one of recognition. How does he know that you are deaf? Thus emphasizing the starting point at the very least of every single public sector service. The sympathetic hearing scheme needs to be renewed because like two ticks everyone carries the badge but when it comes to it no one really knows how to use it. All Government departments discriminate against deafness whether they like it or not. Especially HMRC, DWP and the NHS. There needs to be an emphasis on private outsourcing too. ATOS being a case in point who think it is acceptable to stand behind someone and shout at them. Dignity aside it measures nothing. I would also suggest that with the growing ageing population deafness awareness will be a key factor more so in the years to come and at present there is not any provision. Perhaps a redefine of “Reasonable Adjustments” might be asking a bit too much…

I have just been onto my surgery web site and was surprised to find that I can now book my doctor’s appointment on line. It gave me a choice of ‘all clinicans’ or my own doctor. When I prompted this it came up with a list of times my Doctor was available and a box with an option to explain what I wanted to see him about. To start with I had to choose the surgery and a list of surgeries throughout the country came up. So this means this scheme is not restricted to my local surgery. It may be worthwhile you checking your own surgery to see if it is available. I think this is much better than a sms. The scheme is called ‘Vision on Line Service’ You have to register for this.

I have just checked my own surgery and have found a similar system now in operation called “Vision on-line services” so thanks for mentioning this.

I have a dream, that one day recognition will be given to the perils generated by a lack of understanding, or not wanting to understand, those who struggle against waves of misinformation