The response to the open letter

You may remember we sent an open letter to the CEO of Sign Health, Steve Powell?  You’ll be pleased to know we had a response.  Their response is below, and I quote:

Dear Sara and the Tree House team

Steve thanks you for your letter, and for your interest in the work that we’re doing. He’s asked me, as the person responsible for the project, to reply.

SignHealth has been working for Deaf people for nearly thirty years, and the charity is proud of the improvements and services it’s produced. We’re also painfully aware of all that still needs to be done in many areas, including access to information.

In an ideal world all information would be available to all users in a form they can easily use and understand.

As part of our efforts to move closer to that ideal, SignHealth tries to lead by example. Our website is offered in English and BSL. Our leaflets have QR codes leading to BSL clips, which sign the content. Aside from our health clips, our recent videos are almost without exception signed and subtitled.

We do this so we can ask others to look at their own websites and publications, and ask themselves if they are truly accessible to all. A surprising number of sites for or about D/deaf issues are inaccessible to BSL users.

At present, the BSL health videos we make are not subtitled. That is because they are a special case, and I will explain why.

A year ago the NHS Choices website had only 10 health videos in BSL.

The Sick Of It report showed that a lack of information was one of the reasons that Deaf people are more likely to have poorer health than hearing people.

So, we decided to do something about it. We set out to give people who use BSL as their first language a source of information, which will allow them to understand health issues and to make choices about their own health.

For most of those health conditions, this is the first time that information has been available in BSL.

All of the information we provide in the videos is already freely available elsewhere. They are all covered on the NHS Choices website, where all of the topics are already covered in captioned videos.

As a charity we rely on donations to carry out our work. Before we make a video we have to raise the money to make it possible. So we are using the grants we are given to make as much information as possible available to BSL users, who until now have had no access to information. We do it in the knowledge that people with other communication needs can get that information from the NHS already.

With sufficient funds we would love to be able to provide a large BSL health library which included subtitles too. The truth is we are struggling to find funding to do the work that we are doing already.

SignHealth works to improve access and healthcare for D/deaf people, and we provide services where that is the best way to make progress. We use our limited resources to work where there is the greatest need, and often that is in the BSL using Deaf community.

The work we do is not perfect, but we do the best we can with the resources we have.

Our BSL Healthy Minds, DeafHope and InterpreterNow services are predominantly for BSL users, but they are accessible and available to oral deaf users too. InterpreterNow is working hard to broaden its services so that they are available to all D/deaf and Hard of Hearing people too.

We’ve worked closely with the NHS on the new Accessible Information Standard (1605). We’ve asked them to fix the problems that our Sick Of It study revealed when it researched the healthcare of BSL users. But, we’ve made sure that the solutions benefit all deaf people, and even hearing people with other disabilities.

You say in your letter that you would like to support SignHealth, and we are pleased to know that. We work closely with a wide range of D/deaf organisations, and co-ordinating and combining our efforts makes us all stronger.

Although our approaches and priorities vary we are all working towards a common aim. That is improving access for D/deaf people.

Let’s do that by supporting successes which move us ahead in even the smallest way.

Yours,

Paul Welsh
Director of Communications.

Your thoughts?  The PDF copies of the original letter are shown below should you need to see them.  Anyway, please let us know your thoughts.  Comment away!

Sign_Health_1_of_2Sign_Health_2_of_2

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An Open Letter To Steve Powell, The CEO Of SignHealth

Dear Mr Powell, 

We are writing to you as an open letter from The Tree House group on Facebook and blog (https://viewsfromthetreehouse.com/), we are disappointed to find that there is lack of subtitles on videos that SignHealth have produced.

We would like to remind you that The Tree House Group represents some of the 10 million deaf and hard of hearing people in the UK and we promote diversity, which means we welcome people of all backgrounds including all communication techniques they use. No one is inferior or superior to one another as we are all in the same situation.

We want to make a few points regarding your lack of subtitles on your videos

• There are approximately 10 million deaf and hard of hearing people – 1 in 6 people in the United Kingdom whereas there are approximately 17000 BSL dependent users.

• We believe that subtitling the videos will enable SignHealth to reach out more people who may be deaf oral, use signed supported English, hands on signing for deafblind. Reaching out to the deaf/deafened/hard of hearing people will make your cause stronger than ever because you have more people supporting the cause.

• We know for a fact that deaf people with various communication mechanisms do have problems with healthcare,

o Not enough time to familiarise with a doctor

o Inability to lipread doctors with accent

o Wrong assumptions about lipreading and mistaking that we actually understood everything.

o Inability to book communication support in urgent appointments

o Lipspeakers in short supply

o Having to use family, friends for communication support and many more to list.

• We want to be part of and support SignHealth, because of the problems we all have encountered in the NHS, but not having the subtitles in BSL videos makes it exclusive. It makes us feel that we are being discriminated for using other forms of communication not BSL.

• We would like to ask what are SignHealth’s aims? Are you focusing on the deaf people as whole or deaf people who rely on BSL?

We hope SignHealth would consider our request for subtitles on your videos to be taken into consideration, because we strongly believe that you will reach out to more deaf people who require your help. There are softwares that subtitles can be created on videos, as most of us have managed to do it when we make videos for The Treehouse group. If you wish to know more, please contact the admins of Treehouse Group.

We look forward to hearing your response on this issue within 7 days.

Yours Faithfully

The Tree House team;

Sara Jae,

Sebastiaan Eldritch-Böersen,

Andrew Arthur,

Daniel McManus,

Paul Leonard,

Michelle Hedley,

Kimberley Lucas,

Claire Leiper,

Jamie Danjoux

In addition, members of the public.

 

An Open Letter to the New NHS Chief Executive, Simon Stevens by SignHealth’s Chief Executive, Steve Powell.

The Deaf Health Charity SignHealth has written an open letter to the new Chief Executive of NHS England, welcoming his promise to tackle preventable diseases, and asks him to make Deaf people a priority.

On the day of his appointment, Simon Stevens said he would like the health service to “get a better grip on prevention”.

The Sick Of It report, which was published by SignHealth in March, showed that Deaf people are much more likely than hearing people to have undiagnosed heart and pre-diabetic conditions. It is also more likely that when a patient does have the conditions diagnosed, their treatment becomes no longer effective.

Steve Powell, Chief Executive of SignHealth, has asked Simon Stevens to act on the Prescriptions For Change in the report. They are simple and cost-effective chains which will help to improve the health of Deaf people, and save the NHS £30 million a year on late and poor treatment of preventable diseases.

The open letter:

SignHealth's open letter.

SignHealth’s open letter.

This letter is also available in BSL.

Note from The Tree House: If one needs to make a complaint regarding NHS and/or government services, please use this link as a potential alternative guide.

Sick Of It by Samantha.

Sick-Of-It-logo-300x300

During SignHealth’s recent “Sick Of It” event which many of us followed online be it via Twitter and/or Facebook, upon reading examples were being given that patients had to put pen to paper, Sara seized the day and tweeted them her article “Pen and paper“. Much to her surprise, she was tweeted back asking her if “The Tree House” would be interested in publishing them? Of course we were! It will always be our honour to assist in giving those a voice to be “heard”, on an equal and united basis – regardless.

The "Sick Of It" campaign by SignHealth.

The “Sick Of It” campaign by SignHealth.

My name is Samantha and I’m a Communications Researcher at SignHealth. For the last five years, our team have been researching Deaf people’s health with the University of Bristol, to get hard evidence about the barriers Deaf people face. We named our campaign ‘Sick Of It’ and on March 25th we held a conference to launch our findings. Myself, my colleague Freya, (our Communications Assistant) and the rest of the team have been working together to bring the report to life.

My work started with a trip across the country, filming individuals from the Deaf community in Glasgow, Manchester, Yorkshire and London. I met with each person, working with a researcher from the University of Bristol to interview each one and to get an understanding of their healthcare experiences as a Deaf person. Their stories were shocking. We showed some of the case studies at the conference to add a human touch; we wanted to make an impact on hearing health professionals to show that Deaf people’s problems are serious and real.

On the day of the conference Freya had a huge presence in spreading the word about Sick Of It via Facebook and Twitter.  She was behind the non-stop live commentary that was given all day long, to ensure everyone outside the conference, especially Deaf people, were being kept up to date.

The online event and the whole Sick Of It campaign is proving to be a success. We have received numerous emails from health professionals across the country wanting to make changes for the better for their Deaf patients!  That’s what we want to hear!

As I’m Deaf and a BSL user, I have had my fair share of experiencing ignorance and inequalities in the health service. My opinion about the Sick Of It campaign is that it’s wholly important and about time, too!  Deaf people have been neglected, received poor treatment and have missed diagnoses – it’s been going on far too long.  Enough is enough!

Enough is enough! Sick of it.

Enough is enough! Sick of it.

Our campaign strives to raise awareness amongst health professionals that provide services for Deaf people.  At the moment, it is not good enough and Deaf people are not being treated equally, especially because of poor communication.  We are fighting for equal rights for Deaf people and we want to see the day where Deaf people are able to communicate with health professionals without barriers; services and health information being made available in BSL for Deaf people whose first language is BSL; their general health being the same with that of hearing people; reducing the chance of missed diagnoses, therefore being able to stay as healthy as possible.  We also want Deaf people to know their rights and to encourage them to take responsibility for their own health.

As part of our Sick Of It campaign, we have introduced a section called ‘Prescriptions for Change’, demanding that all the issues raised from our research are addressed and solved. Changes have to happen; they are simple and inexpensive!  Actually, by making our recommended changes, the NHS will save £30 million a year!  To check what our recommendations for Prescriptions for Change are, go to www.sick-of-it.com. We have English and BSL versions of the Sick Of It report on our website because we aim to cater for everyone!

Our work is not yet done. There’s still lots to do; the health inequalities Deaf people experience everyday aren’t going to end overnight, and we continue to campaign for long term changes, better Deaf awareness and for all health professionals to think twice, putting themselves in Deaf people’s shoes!

This is just the start!

By Samantha.

Sam & the girls.

Sam & the girls.

Please feel free to find SignHealth on Twitter, Facebook and their website.

The Tree House would also like to wish SignHealth, Samantha and her team, all the best with their Sick Of It campaign. We admire all the hard work they have put into this and will continue to follow with great interest.

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.

Please feel free to follow us on Twitter @treehouseviews and join our Facebook group The Tree House

~ SJ (Sara Jae)