The irony within the irony.

On Monday 31st March 2014, the SignHealth‘s #sickofit report was debated in the House of Lords which was televised as well as being live streamed via Parliament TV on-line. Finding out it was being broadcasted, a member of The Tree House took it upon themselves to find out if the broadcast would be subtitled and/or interpreted at least. After all, it was about us? As the disabled community established a few years ago that nothing would be about them, without them.

The vital question that was asked “Will it be subtitled to give deaf people equal access?”

“Ooooo, I don’t know. That would be the best thing to do, wouldn’t it really, considering the subject matter. Give me your number & I will find out & call you back ” was their response. How they could justify having a debate about a minority group that was being broadcasted live and debating inequalities when they themselves fail to make it accessible.

“Subject matter”?! Are we merely subjects for them to debate over while we are subjected to their appalling standard of inequality by not providing subtitles and in-vision signing?

To this day, Parliament TV have failed to give subtitles. Instead they make the extremely lengthy & badly laid out transcripts available after the event. With actions comes consequences.

Members of the deaf community were encouraged to voice their concerns using this email address hlinfo@parliament.uk or via the House of Lords information phone line: 020 7219 3107 

If one experiences problems with Text Relay please email Lorna on lorna.stevenson@bt.com with details of the following:
* your deafness (or deafblindness)
* your textphone type e.g. Minicom Pro 7000 etc
* your feedback/concerns.

After our initial emails, we all received an automated response which informed us that it will take them up to 10 working days to respond to us, when the debate was imminent. One reader who thought this was not on and wanted to empower the deaf community took to the phone once again and relatively we took to our keyboards, emailing both hiscockb@parliament.uk & lordspeaker@parliament.uk (who is considered the organ grinder by some.)

The more noise  we make, the better.

Samples of emails by members were made ie:

“Dear Sir,

It is with great sadness we will be missing out on the “Sick of it” debate tonight due to our deafness… neither will there be a BSL interpreter or subtitles to meet our accessibility needs on an united and equal basis. After all, the topic is regarding deaf people so it is rather ironic that we cannot even be a part of it.

Please set up some sort of system that will meet all our access needs, be it in vision signer, captions and so on. It’s about us but without us?….We have a voice of our own and we would like to be able to watch these things the same time as everyone else does. It’s appalling that a friend is making all these phone calls sympathising with the deaf community yet when we send an email we are told “10 working days” before we get a response when the debate is on this evening?!

So, I would like you to accept this email on my behalf (and my family’s behalf who are also deaf) as a formal complaint.

Thank you for your time and patience.

Yours sincerely,

Sara Jae”

Emails were shared with others for their peruse and over that short period of time, the emails grew more detailed and legally sounding. The end result being templates for members of our various communities to use. Thank you to her.

The Tree House gang was starting to kick ass!

As time elapsed during the evening, no one could access the debate and those who could listen along, were tempted to scream and shout at the screens. Why?

Because…they talked about how ‘public services’ should be accessible when their own debate wasn’t accessible. They are after all, also a ‘public service’?? Even more shocking was the fact that they actually talked about how things should be more accessible in BSL and subtitling. They basically shot themselves in the foot by not practising what they preached. To have one rule for themselves and another for others; but perhaps now we have emailed and made some noise they will expect us the next time they give us a reason to voice our concerns so hopefully they would want to get it right the first time around… (surely we’re not that bad??!)

Eventually the transcript transpired and the standard of English on this meant that some unfortunately could not grasp the whole context. SignHealth who kickstarted their #sickofit campaign have provided BSL versions to reflect their plain English versions on the Hansard publication to include the BSL community on an united and equal basis as a whole. As equals, regardless.  Thanks to SignHealth for their time and patience.

Within the transcript, we discovered this gem from Baroness Jolly: “… It is up to the service providers to anticipate the requirements of disabled people and the reasonable adjustments that may have to be made for them in advance before any disabled person attempts to access their service. The reasonable adjustment duty is an anticipatory duty, so it is just not acceptable for health services not to be equipped to provide communication support to those who need it”. Surely this should also apply to other services? Like their own online streaming service!!?!

Developments due to our emails, (Weds 2nd April 2014) Meanwhile here’s a link to a subtitled version of the speech as mentioned below (Please press CC)

“How will the government improve the health of deaf people? | House of Lords debate 31 March 2014”

“Dear Sara,

Thank you for your email regarding the debate below, initiated by Lord Ponsonby of Shulbrede, in the House of Lords on Monday evening.

“To ask Her Majesty’s Government what measures they intend to take to improve the health of deaf people”

We are grateful for your feedback and sorry that the live broadcast coverage of the debate was not supported by either British Sign Language (BSL) or subtitles. We have now made the footage of the debate available on the House of Lords YouTube channel with subtitles. This can be found at:

http://www.youtube.com/ukhouseoflords

If you would prefer to read the Hansard transcript of the debate, it is available at:

http://www.publications.parliament.uk/pa/ld201314/ldhansrd/text/140331-0002.htm#14033124000223

Your complaint has been passed to the Clerk of the Parliaments, the Chief Executive of the House of Lords, who is consulting ParliAble – the Workplace Equality Network in support of disabled MPs, peers and staff – to seek their advice on policy for the future. He has also ensured that Parliament’s broadcasting unit takes the needs of the deaf community into account as they develop their new audio visual strategy.

Many of those who made a complaint about this issue also pointed out that the email auto-response from our Enquiry Service stated that if a response was required urgently to ring the Enquiry Service telephone number, and that this was not an appropriate solution for the deaf community. Parliament operates a text relay service and the details of this service have now been included in the Enquiry Service’s email auto-response. We apologise for its previous omission.

Yours sincerely

Benet Hiscock

Director of Public Information

Information Office

House of Lords

London SW1A 0PW

Tel: 020 7219 0671

Mob: 07932 569 140

www.parliament.uk/lords

Follow us on Twitter @UKHouseofLords”

Several of us emailed back to thank them for subtitling the said speech and for their time and patience. Suggestions were made regarding Text Relay (and other issues) as not everyone uses Text Relay anymore these days. Guess what? We got another automated response :-/ Which is to be followed up in due course.

Here is their email response:

“Dear Sara,

Thank you for the further information you have provided. We will forward it to the Clerk of the Parliaments to inform future policy.

The Enquiry Service endeavours to respond to all email enquiries immediately. However, due to the size of the team, occasionally it does not have the capacity to do this, so we can only guarantee to provide a response within 10 working days. Though we can only guarantee to respond in this timescale, any email enquiry that is urgent, i.e. has a clear deadline by which a response is required, is prioritised so a response is provided in the appropriate timescale.

We apologise that our auto-response email message has caused confusion.

Kind regards,

Information Office

House of Lords

London SW1A 0PW

Tel: 020 7219 3107

www.parliament.uk/lords

The Tree House would like to end this on the same note as on the Hansard publication which stated “Equality is the watchword.”

May we take this opportunity to refer you to our recent blog regarding making a complaint regarding NHS and/or Government services in case you need to make any. Thank you ever so for your time and patience.

 

Making a complaint regarding NHS and/or Government services.

Sharing some mutual concerns that these days there are quite a few organisations and charities which potentially have good intentions but they are misleading when they can make one think they have power to make a change within the NHS. So please, be aware of those. This gives us another reason why the UK needs an approved governing body for deaf issues.

The ones who can actually make a change would be the Care Quality Commission (CQC) who I recently contacted as they did not provide any videos in British Sign Language (BSL) Eventually they replied with a link to their YouTube channel which was not good enough for the deaf community as the access via their website did not provide this. So once again I contacted them via Twitter…. eventually they provided me with a link much to my delight, now showing equal access to their context just as the other needs were met. Thank you CQC, for adding this format to make your context more accessible for BSL users too.

They the CQC, as a regulator, a major part of their job is to monitor services’ performance against national standards such as:

  • treatment, care and support provided by hospitals, GPs dentists, ambulances and mental health services.
  • treatment, care and support services for adults in care homes and in people’s own homes (both personal and nursing care).
  • services for people whose rights are restricted under the Mental Health Act.

CQC    CQC

Another service one could choose from is the Parliamentary and Health Service Ombusman whose role is to investigate complaints that individuals have been treated unfairly or have received poor service from government departments and other public organisations and the NHS in England. They too have added a BSL video on their website “make a complaint”.

There is another alternative which is potentially Healthwatch. Who state on their website, are the national consumer champion in health and care. They have significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services. Here is their video “What is the Healthwatch Network” which is in BSL and subtitled.

Also there is the Clinical Commissioning Groups (CCGs) who commission most of the hospital and community NHS services in the local areas for which they are responsible. Commissioning involves deciding what services are needed, and ensuring that they are provided. CCGs are overseen by NHS England, which retains responsibility for commissioning primary care services such as GP and dental services, as well as some specialised hospital services. All GP practices now belong to a CCG, but groups also include other health professionals, such as nurses. (You will need to find your local CCG to contact them.)

Services CCGs commission include:

  • most planned hospital care
  • rehabilitative care
  • urgent and emergency care (including out-of-hours)
  • most community health services
  • mental health and learning disability services

Please contact the CQC, Ombusman, Healthwatch, CCG and your country councillors (as one or more is delegated to liase with the NHS) via their website links as provided on this blog to make your complaint and voices “heard” otherwise, how will they know the deaf / hard of hearing community exist? How will they truly make changes to meet our needs for equality and full inclusion? If we cannot share our experiences directly to them and that we too have a voice of our own (which others may be taking advantage of for their own gains).

There are those who do have genuine intentions and want to bridge the communication barriers between both the hearing and deaf worlds – I tip my hat to those but nevertheless, please keep your wits about you and look outside the box, to see which service will and can make a change, for the better. For inclusion and equality within the NHS and government services on an united basis.

Please take a moment to remember those in developing countries especially where there is evidence of corruption, bribery and lack of rights for the residents there. Those who face difficulties and challenges a hundred fold due to their disabilities. I have seen with my own eyes how their governments have neglected them and believe me, some people in this country take for granted just how lucky they are. To have roofs over their heads, warmth, comforts and food. Free NHS and plentiful medicine. I have no issues with those who want to strive and improve on what we already have in a positive sense. Yet we should not rest on our laurels. It is important to keep the people in charge in check otherwise the standards will inevitably drop. Imagine what it would be like, if you could not express yourself via spoken word or sign language, being unable to read or write?

Thank you for your time and patience.

~ SJ (Sara Jae)

A plea for change by Hulusi Bati.

To whom it may concern,

When my wife first started experiencing labour pangs, we immediately went to the hospital. We were then taken to the birthing room where my wife was checked by a mid wife. She spoke to my twelve year old daughter who was put under pressure to relay to us in sign language what the midwife had said. My daughter felt very stressed due to the fact that she was being used as an interpreter when the staff should have made more effort to make arrangements for one. Especially if it is in their policy to provide one. Children are not there to be used as interpreters, in any sense. Be it a foreign language or sign language. It is not fair on them and it is potentially damaging. Please do not allow this to happen again in future. If my daughter was not present, how would the staff have dealt with the situation?

From a personal point of view, of which I am sure many other deaf people share a mutual natural concern, what would happen when we (the deaf community) suddenly have a car crash – how would the medical services deal with us? How can they feel 100% confident that they have covered all the medical questions and satisfied they have all the information they need? How can they reassure us? When they have no knowledge of sign language or a deep awareness of deaf issues. How can they do their job properly?

Being awarded a piece of paper after going on a deaf awareness course does not qualify them or the hospital in deaf awareness. Deaf awareness is not only about speaking clearly, tapping them to get their attention and so on. Deaf awareness is about knowing and understanding the predicament deaf people have to face every single day. The language barriers we have to encounter, the discrimination we feel, lack of dignity and inequality we see. Being treated as second class citizens. Holding at least a level 2 or 3 sign language qualification would not only benefit the staff and patients but the hospital too. Only then, can one say they have qualified in deaf awareness.

This is why a qualified and registered sign language interpreter must be provided to protect both the patient and staff in order to relay and convey the questions and answers to prevent any misdiagnosis being given, a more serious predicament from happening which is inevitable. One day a patient who is deaf WILL die from a misdiagnosis, a result of not being treated as an equal to that of other patients who are hearing.

Please prevent this from happening by taking heed and “listening” to our pleas. For change, action, equality and inclusion.

I would like to point out that a friend of mine (Sara Jae) has kindly transcribed my views in sign language into words for your reading ease. As I am unable to put pen to paper in order to convey my thoughts and concerns with confidence. This is my wife and I badly needed an interpreter during her ten day stay in hospital. She had to endure being manhandled, being given injections, watching our new born son being given injections – all without fully knowing what the injections are or what for.

Thank you very much for your time and patience.

Yours sincerely,

Hulusi Bati.

The Guardian’s article: Deaf couple angry with hospital over lack of interpreter during birth of son

How long before a deaf person dies in hospital for want of an interpreter? – This is inevitable.

Carpe diem – Every day x

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One rather hazy summer, during the cool comforts of the night I was disturbed by a pin pricking sensation from within, in my stomach. I turned myself over in search of a cooler spot to try and return to my favourite place, a world of silence mentally and emotionally – Sleep. This sensation continued for a few days, even though I was not exhibiting any other symptoms I decided to grace the GP with the pleasure of my company, a visit to say “Hi” and for my peace of mind, for my children’s sake.

The GP turned out to be a locum who I had met a few times previously. I explained despite my deafness as best as I could, what was bothering me. “Hmmmm” She said, doing a check on my stomach. “You need to have an ultrasound scan which I will send off right now, for you.” I looked at her in wonder and accepted her decision without question.

I had to wait, for a phone call?! They (who would be doing the scan) would be contacting me to make an appointment. Feeling unnecessarily stressed, at the thought alone of a phone call since I cannot answer it or make the appointment myself, being profoundly deaf from birth. I have never been able to decide whether to be amused or perplexed at phone calls requiring my immediate attention so I usually end up combining the two, especially when they know I am deaf.

Damn…. The referral form for the scan was not accepted apparently due to some errors on it so the GP had to refer me once again. This was two weeks later from the date I last saw them. Quite spontaneously, I spotted my husband looking at the calendar, talking hesitantly…. I had hoped he wasn’t talking to himself! Too many times I had spied lone passer by’s talking and I do a double take out of care to make sure they were not vulnerable…. Only to realise short moments later, they were holding a conversation over their mobile phone. Relief overcame me finally finding out I had an appointment for a scan. I was still feeling that niggling pain and it started to prey on my mind, just a tad.

The scan date was not for another week but waking up to each brand new dawn, I anticipated it that bit more. To finally know the cause of this mysterious symptom which was starting to make me feel just a little bit nauseous. As one would say, “Patience is a virtue” and I have a lot of patience for only those that deserve it.

The nurse prodded and scanned me relentlessly with her probe, for an hour and a half. Escaping the room, only to return with her colleague in tow for a second opinion. By then, the atmosphere had turned ominous. The look on my husband’s face was one of concern. We tried in vain to hide this emotion from our children, pretending it was natural to have a scan, for so long. The nurse looked at me and said, “Your doctor will phone you within the next few days.” Another phone call?! I decided not to let these phone calls get the better of me as it seemed somewhat trivial compared to my health. Even though I felt physically fine and looked extremely healthy, I knew I was becoming seriously unwell. I have on occasion been blessed with premonitions and instincts so I started silently mentally preparing myself to embark onto a solo ride.

That night I ended up in A&E due to a bout of bad pains that was slowly subsiding… the emergency doctor there put it down to ‘Ovarian Cysts’. Which I was rather dubious of but she was qualified so she must have known what she was doing? The kids enjoyed the late night outing nonetheless.

A few days passed by slowly yet still no phone call came. Thoughts were trying to creep into our minds so in order to take a break from being on standby, we decided to take the kids to enjoy the wondrous weather and Mother Nature in our local park. Yes, you guessed it – we missed the phone call?! Sod’s law at its best. Fate works in mysterious ways. I was invited back to see my usual doctor and could I come in as soon as possible? Relatively, an appointment was made. “You have a mass in your stomach and you need to go down to A&E – now!”… Looking serious at me with such concern. “Okay” I reluctantly agreed… Wondering what this next part of the ride would consist of. You can’t stop the waves but you can learn to surf. Hence, going with the flow suits me so. Once again, I had to go with the flow.

Walking home cautiously, wondering what to say to my husband as a potential immediate holiday overseas to attend a family wedding was in the pipelines.

Honesty is the best policy. “I have to go to A&E now, they are expecting me” I told him sincerely. The GP had phoned ahead to let them know I was on my way. She had chosen this hospital for a good reason – they had at present one of the best oncology departments.

Another ride out for the kids once again oblivious to our worry and deep in thoughts. Innocent with their childlike ways. I did not have to wait very long at all in the reception area, I was ushered onto a bed and incessant questions were asked. treating me as if I was a pin cushion because they could not find a vein which had become the norm for me. I explained how one night I had this surreal experience of my chest turning ice cold, I could not breathe or feel my chest. I decided to lay upon the sofa and stay calm, riding it through. What must have been only thirty seconds felt like never ending minutes. Suddenly, much to my relief, I felt my chest resume beating away and myself breathing again…. Which had scarily happened twice on separate occasions. This seemed to give the nurses some more cause for concern. They immediately wired me up, monitoring my heart beat and at once, admitted me onto a ward.

The time came to bid my children goodnight as I had to remain on the ward while they returned to the comforts of their home. I hate goodbyes and this was one of the hardest goodbyes I have ever had to endure. The look on their sweet angelic faces as they turned away to leave was imprinted on my mind the rest of the night – It is still imprinted to this day which breaks my heart.

However, I had to fast with each day I remained as I was on the emergency waiting list for a CAT scan. Yet again, a few days more had passed before my turn under the CAT scan came…. To that date, it was a total of almost five weeks since I first presented myself with what I thought was a tiny, simple, trivial symptom. My instincts had informed me otherwise.

My consent was needed for them to carry out an operation the very next day, “to investigate” the cause. To observe with their own eyes what the mass was. I willingly gave them my autograph, for free.

Overnight, I felt endless chills and asked for extra blankets. This was early August so the nurses started monitoring me. Were they not telling me the whole story? I pondered.

More fasting as it was now operation day. I would finally know the cause for certain and hoped to be put onto the road of recovery. To be reunited with my children. I had been contemplating discharging myself and going home as I could not bear the children visiting me each day only to say goodbye but thankfully, I decided not to listen to that call for emotional peace.

Extreme nausea overcame me and I rapidly deteriorated, severely vomiting green liquid numerous times. The dividing screens were slowly draped around my bed and a dutiful nurse stayed by my side. Taking my temperature every so often and passing me the sick bowls. My husband arrived with the children only to take one look at me before his face dropped with worry. My skin had turned grey, my eyes were sunken…. I was drifting in and out of sleep due to the sickness and anti-nausea medication. I did not want my children’s last memories of me to be ones being in this state so I asked him to take them out, treat them to a meal and have some fun. Which he obliged to and during the meal, my son’s milk tooth finally fell out – biting a burger! They thoughtfully sent a media message to show me his new smile which relatively made my heart smile.

Sporting brand new hospital wristbands, the nurse noticed the matching dates on it. She looked at me with such kindness and exclaimed “Happy birthday!” I managed a smile back albeit weakly to thank her. There stood a porter at the end of my bed, waiting to whisk me away to the very top floor of the building, the fifteenth floor I think it was. I envisaged myself going to a ball in the penthouse suite. “Happy birthday!” someone else exclaimed after examining my wristbands to make sure I was their correct patient. I smiled weakly once more, to express my acknowledgement and gratitude. Pausing outside the “penthouse suite” my heart started to frantically thump away, my mind wanted to travel everywhere. I sternly told myself to remain calm and that “What will be, will be, I will survive if I am meant to” and mentally said my goodbyes to everyone I loved, there and then before slipping away into a void of darkness.

Sensing systematic lights were passing by overhead, I was groggily beginning to wake up and realising I successfully made it through. I was being trolleyed to another ward, trying to make sense of what had happened from the dressings and drains on/in my stomach. Endless tubes seemed to be everywhere. I feebly asked the attending nurse “What happened?” She responded “You had a ruptured appendix… The doctor will come and see you very soon.” Reassuring me I was in safe hands. I felt secure enough to drift off into a world of my own, to sleep.

The doctor’s face when he visited me relatively soon after I woke up, was a sign of relief. He was extremely worried that I would not survive as I should not have done. It is only because I was young, healthy, did not consume alcohol or smoke that my body did its job fighting the already ruptured appendix and internal abscesses it caused. My body had sealed it off; my entire stomach had stuck together which gave the doctors one hell of a cleaning job to do and it turned out to be one that took them quite some time. He told me whilst tapping the wooden bed table “You are extremely lucky.” Words seemed to fail him but I got the gist. For them, I was the centre of attention but I was too ill to know it. Naturally, I thanked them all for their help yet words too would not suffice my expressions of gratitude.

This confirmed how high my pain threshold was. No pain no gain?!

carpe diem photo2

If it had not been for modern medicine and professionals, I most certainly would not be around today to watch my beautiful children grow up into content, richly educated in life, adults. The emergency operation fatefully done on my birthday, some may say would add insult to injury but not for me. It gave me a second chance, a rebirth. Since experiencing a further two close calls within the subsequent year, I now cherish each and everything in my life. The warmth of the sun, the drops of refreshing rain upon my face, the tastes I sense, the laughter which is music to my eyes and ears… To put it simply, the beauty of it all. Life is too short and I for one know just how short it can be. Despite this, I observe many more people being ungrateful, being trivial, being petty, and being negative. This only frustrates me even more so and then some. I have learnt to try and put them aside until the appropriate moment arises to try and open their eyes, in order to educate regarding priorities, importance and positivity. Unfortunately, some people will never learn.

With each birthday that passes me by, I annually extend my gratitude to the doctors and nurses who gave me the best birthday present ever one could ask for. A second chance at life. Thank you.

I intend to make the most of my second chance so “Thank you” in advance, to each and every one of you, my family and my friends – for putting up with me.

Carpe diem – Every day x

~ SJ (Sara Jae)

(Photo 1 – a birthday present which I seized last birthday for myself, my motto “Carpe diem” tattooed for posterity as is this blog

Photo 2 – flowers and a home made get well card from the kids and my husband)

Part 2 “Dearest Sara,” https://signsounds.co.uk/2017/08/05/dearest-sara/