Expecting Parents.

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With each pregnancy I have experienced (and there have been five of them in total) I have people watched with great interest in the waiting rooms at two different maternity hospitals that I had been referred to, in the past. There have always been a good handful of nervous expectant couples,

Living in such a diverse community, there have also been those who cannot speak English. They just happen to be of another nationality. Myself, I just happen to be deaf. I have however, never seen a translator being provided, for any of these foreign speaking families. They always seemed to be happy enough.

A while ago I noticed a post on social media, by the BBC’s ‘See Hear’ about one of their upcoming programmes, concerning a couple.

The woman is hearing whilst her partner is legally deafblind. They are expecting their first baby but they are unhappy…. The NHS is repeatedly asking the mum-to-be to interpret, for her partner, at HER appointments.

The NHS say that since SHE is the patient, they do not need to accommodate / provide an interpreter for HER partner. Which I think is fair enough, having thought back on all my pregnancies and rifling through my hospital memories. The patients have always come first, regardless of who they happen to be. The dads,, mums, siblings, families and visitors come second, once again, regardless of who they happen to be.. For they are not the patient, it is not their well being, pregnancies or bodies being treated and/or monitored and if they need(ed) support, what is stopping them from arranging their own? Especially if they are otherwise, unsatisfied.

The NHS’s primary concern and priorities, are their actual patients.

Granted, there will be times when a loved one is being operated on and their anxious partners, who may happen to be deaf or a foreign speaking national, will not be able to fully understand, what is being said to them by the professionals. Then, the care system should assist in providing an interpreter or a translator to ensure their patient gets the full care and treatment by their loved ones, as this would mean a full recovery.

Fortunately, I have no complaints at all with each and every NHS experience I have encountered, despite being profoundly deaf myself.

I am more conscious of seriously ill premature babies being born abroad, to parents who are having to pay for incubators, medicine, tests out of their own pockets and on borrowed money. The same people who are having to live hand to mouth, daily. I do not see them complaining one iota for they, do not know how to take things for granted.

~ SJ (Sara Jae)

 

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Junior Doctors, Man Up?

spoiltI am becoming increasingly annoyed at all the posts regarding the appalling conditions that the Junior doctors apparently have to work in… Further to my post about how strike action diminishes trust and reliability, people are forgetting just how lucky these junior doctors are but not realising on the other hand, just how spoilt they are. They have realistically, en masse, thrown their toys out of their prams.

They have one of the best working conditions in the whole wide world yet they want even better… They *have* to do shift work but hey, so does almost every one else. The next time you travel by plane, just think about the pilots – if it wasn’t for them, the luggage handlers, etc, would you complain? Users then, would have more right to complain. Professionals do not reserve the right to complain about their career choices especially when they entered into it voluntarily.

I have seen with my own eyes just how basic the equipment is one has to work with in overseas hospitals yet they do not complain… They deserve to scoff about those here, in such an advanced and rich country abut their initial complaints.

I have also seen just how our NHS saves lives including my own and from my vast experiences, there was / is nothing wrong with their working conditions – at all.

So… Man up?

~ SJ (Sara Jae)

Seeing Is Believing

blurred-vision

We always seem to learn facts from those amongst us who may be deafblind but never experience it for ourselves, in order to be able to understand and relate in full. Therefore, here is a particular albeit very new experience of mine because, seeing is believing…

Without delving into the medical side of things for privacy reasons, I am once again unbelievably grateful for the NHS today. Without them, every one of us would have a very different story to tell. Having been born deaf into a deaf family, I was also exposed to people who happened to be deafblind which meant I never really took my eyesight (or anything else!) for granted. I know from not just my own experience but also others too, just how incredibly scary it can be, realising and seeing how quickly an organ thus relatively a life can deteriorate. It can be as sudden as a blink of an eye.

I had been getting a red eye now and again that was becoming bothersome but since it was not infected, my GP suggested I pay a visit to the A&E department at an Eye Hospital.

The moment I walked into the reception area, I sensed just how chaotic it was but patience prevailed and I made sure the receptionist understood I would not be able to hear when my name was being called. He quickly reassured me and said he will make sure they know and if necessary, he would call me too. As I went to find a seat, there seemed to be only one row of seats facing towards the communal area where names were being called out. All the other rows of seats were facing the other way, the wrong way in my opinion. There was also some elaborate hand waving going on, all dedicated to yours truly which I admired and appreciated. After all, their efforts made my heart smile.

My diagnosis after personally researching upon returning home made me stop in my tracks. I had assumed it was something almost trivial yet in the end, without the appropriate medication or specialist care the quality of my vision (in one eye) would have deteriorated. As it is right now – at this precise moment in time, I hope, the “insult” will be contained and eliminated, the quality of vision improving with the help of prescribed medicine and patience. For it is not easy at all, not being able to see or hear very well simultaneously. I now have a much more detailed understanding of what deafblind people may personally feel, and experience. It is extremely exhausting, not being able to lip-read, let alone reading, despite feeling even more vulnerable when outside, exposed to all the elements and the vast lack of awareness in sensory loss be it sight and/or hearing.

Overall, the whole experience is proving to be a good challenge.

People sadly forget just how precious life can be so please, do look after yourselves exceptionally well and enjoy life to the max. For the rest of today, I am going to slumber, cherishing each moment with my children alongside mugs of hot chocolate and some extremely sensual chocolate cake. Hmmm mmmm indeed! Mamma mia 🙂

Carpe Diem – Every day x.

~ SJ (Sara Jae)

A related post; The Next Hurdle

How Would You Like To Be Called?

I had been anticipating my ENT appointment for months now and finally this day had arrived. But, what a day?!

To begin with, I had been a regular patient at my local audiology department but when we last phoned for another appointment – I was notified I had to be referred back to audiology by visiting my GP, to ask to be referred to ENT who would then put me back through to audiology. What a palaver but if I needed new ear moulds and hearing aids then so be it. I persevered.

Going through the broad spectrum of emotions and thoughts, as I decided I needed to be there at least twenty minutes early to claim a prime position, in the waiting room – close enough to scan lip movements for any names being called out. I had clarified with the receptionist if they would be calling out names, she confirmed this and that she would let them know I was hard of hearing. I explained that I was deaf to reinforce just how profound my hearing loss is. “Oh ok, same thing” she replied. I had to remain calm and took my seat albeit feeling rather surprised.

“Mumble Mumble” started off the processing by the nurses and trainee doctors. Feelings of dread were not appeased nor swayed when I noticed this LED display board to one side welcoming patients;

“Welcome to ENT you will be called through to see a member of the ENT team”

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My GP’s surgery has the same sort of contraption except they use it to announce patients’ names on it, for a certain designated room to be seen by Dr X or Y. So relatively I wondered why the ENT and Audiology departments despite being specialists, could not implement the same quality of service to be inclusive of all. Digital technology in this day and age has advanced greatly but not in our NHS hospitals it seems. This needs to change for the better, for their sake and ours. After all, they did ask how patients wanted to be called.

How would you like to be called?
How would you like to be called? On the screen in ENT.

A Tree House dweller informed us that he once had a placard with his name on it whilst waiting for his appointment, much to the other patients’ amusement at the time. Unfortunately that is how appalling services can get and this is what he felt he had resort to in order to be seen.

I was now sensing the other patients in the ENT waiting room were becoming restless, demanding to know when they would be next seen and this poor nurse was trying to appease them. By this time I had managed to pull myself together from feeling quite annoyed at being passed to audiology and then back again to ENT not knowing why or if I would be seen, if at all. If they were getting angry at being delayed by mere minutes, I thought to myself how should I be feeling only to be made to wait potentially a few months extra for my new ear moulds and hearing aids after waiting months already, especially in such an environment?! I decided I was not going to let them feed me any negativity and found some inner peace to remain patient.

Patience is a virtue.
Patience is a virtue.

From not the usual place names were being called out (the doors in the photo above) but further to the side – I just about saw my name, whilst glancing, being clearly spoken. My turn – Glee and amazement at catching that! I had the consultant this time around who was particularly interested in my family’s history of deafness – why they were deaf, how and if my children were “ok”. He then enquired how my hearing aids were. I mentioned I had had them for about ten years now and the last time audiology tried to provide me with a new pair they did not suit me so handed them back hence why I was now eager to try again as my current ones were starting to become slightly temperamental. I am also scared of being left stranded with nothing to hear with. He explained to me that any new pair of hearing aids is most likely not going to suit me based on my audiogram so he is ordering a head scan to find the biological cause of my deafness since my mother was born deaf – cause also unknown and my father became deaf through meningitis. He was especially interested in my mother’s deafness and if she could talk well. “Yes” I replied, “Just like I can”. The consultant then expressed. “I would like to put you down for a cochlear implant if the new hearing aids do not work for you”. Instantly emerged a brand new, never experienced before emotion and it is one I cannot find the words to describe.

As my consultant returned me to the audiology’s waiting room and found me a seat; I thanked him for his time. Suddenly I found myself dismayed, wondering why I was once again back in Audiology! Recurring feelings along the lines of, “Do they know I’m here / am I in their queue?” I scanned once again for any names being called out. Whilst scanning one caller, I had not noticed another came out to call but noticed she had gone into reception to make a query about this piece of paper in her hand. She came back out and said… My name – Glee once again! Phew, that was a close call I determined– I had missed that first time around because I only have one pair of eyes.

Ear moulds casts were made and she too concurred that the new hearing aids might not work very well for me due to the “different new sounds” they would make. But as anticipated I was going to have to wait at least two months more for another appointment to get and try out these new hearing aids. If only they had seen me when we first called as I was already a patient then, I would not have had to wait so many months more. She understood my frustration and said she would try to get something earlier.

A cochlear implant? Me?! I must admit though being an honest person, if I hadn’t written this article regarding cochlear implants I most probably would not have been as open to the idea. One thing I do know at this point in time is that I am not looking forwards to the realisation of being left with less than adequate hearing from prospective replacement hearing aids – my current ones have lasted me for so long and they will not always continue to serve me well. Remaining positive though that the new pair will work just the same or better and if not, perhaps the next steps are meant to be. I would very much prefer to have the same quality of sounds or better – not less. Just as you would expect a replacement PC of the same specifications or upgrade to better specs.

Does this mark the beginning of what could be the next stages in my journey? Only time will tell and more patience once again. Upon reflection, I realised that by asking patients to be referred through all over again it was giving the consultants a chance to catch those that may have filtered through first time around and a chance to produce a more updated yet better care?

Going back to the title of this article, “How would YOU like to be called?” Be the change you wish to see so start that ripple effect by being courageous and letting your GP’s surgeries, Audiology and especially the ENT departments know, just how THEY can be more inclusive and improve their services.

Carpe diem!

~ SJ (Sara Jae)

Giving & Gratitude

When it comes to kindness, there is absolutely no need to discriminate against any identifiable means because it is about humanity in general and acts of giving without any expectations of receiving in return.

For so long there has been a frustration of sorts building within me seeing the simplest things in life being taken for granted. Be it the roof over your heads, certain (branded) clothes being worn, the hot meals and comfy mattresses you lay upon, the NHS and free medicine being provided for us – the list is endless. The extremely close shave I experienced a couple of years ago taught me to take nothing for granted, now cherishing every little thing and being all around me.

“Be kind for everyone you meet is fighting a harder battle” – Plato

For this reason, I am now trying my very best to spare a moment to remember those who may have been left outdoors, especially during those cold winter nights. Recently I, via the Tree House, have been able to appease that frustration of helplessness. In true spirit of the Tree House, this has meant this is now starting to catch on with other dwellers through their acts of kindness. So far, we have saved numerous left over meals and received donations of various kinds of cakes with which we approached homeless people and gave.

“Thank you” they gratefully say. And if they have a pet with them, they are more than happy to share with their “best friend” – Without a question.

Nigel and his best friend who enjoyed the leftovers from our Chinese meal.

There are those who had everything and lost it all and there are those who dedicate every minute of their remaining lives to make sure the homeless has a hot drink at least. They are among the unsung heroes of today’s societies. They are trying their very best in being the change they wish to see in the world.

So let us organise café meet ups with CAKE(!) donating to a charity of your choice, perhaps asking cafés to participate in “Suspended Coffee” schemes too. When you have a meal, please save your leftovers and seek out the homeless in order to make their day. Maybe even nominate/challenge your friends to pay it forwards too. Please?

One can only hope this act of compassion and kindness will help to keep them going, to keep the faith and to have hope. That not everyone has a stone cold heart, that they are not oblivious to everyday people. They are still someone’s child who were brought into this world for a reason.

A drop of kindness goes a very long way, much more than you realise.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” ― Leo Buscaglia

Carpe Diem – every day by being true to yourselves.

~ SJ (Sara Jae)

A Show of Gratitude.

“Yesterday is history, tomorrow is a mystery, and today is a gift; that’s why they call it the present.”

– Eleanor Roosevelt.

gift

On this exceptionally memorable date, I would like to extend my annual show of gratitude to the doctors and nurses of Charing Cross Hospital who several years ago gave me the best birthday present one could ever ask for. 

A second chance to cherish life and being able to watch my beautiful children grow up of which I intend to make the most of.

I never ask for much but I would very much appreciate it if you too could show your gratitude to our NHS services, especially the Doctors and Nurses who devote and dedicate so much of their time and passion to ensure we get the best care around the clock – please could you join forces against any NHS closures and get involved?

For if Charing Cross Hospital had closed down then, I would not be around today.

And last but not least, to our beloved Tree House and its dwellers for creating such a unique place without any barriers.

It is what we all make it.

Please accept this dedicated post as a token of my gratitude for being true to yourselves.

Thank YOU, to each and every single one of you, my family and my friends – for putting up with me 😉

Carpe Diem – Everyday x

~ SJ (Sara Jae)

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.