I’ve (fortunately) only been in an ambulance once – thirty seven years ago, when I had to interpret for my father as he was rushed to hospital and doctors needed to establish what was wrong.
He tragically died later that year but my memories of being a seven year old girl trying to be brave so that I could help medics make my Dad better are some of the clearest I have of my childhood.
My memories and tales of life as a hearing Child of Deaf Adults (CODA) are not unique; they’re shared by CODAs across the world and for many, like me, are the reason why I became a qualified interpreter.
I’ve often said that had we had access to interpreters back in 1981, doctors might have been able to make an earlier diagnosis of the brain tumour that took my father’s life.
Access to professional interpreters and an increase in mainstream Deaf Awareness (service providers are now more “aware” than ever) have resulted in better health access and outcomes for Deaf people. Right?
Fast-forward to 2018. And imagine my utter dismay to discover that, despite a long interpreting career and in recent years a more focussed effort to work with service providers to increase Deaf access, as a CODA (Child of Deaf Adults) I’m still an essential part of the healthcare system.
A few weeks ago my Mum was admitted into hospital. On arrival at the Emergency Department one of the first things I said was, “This is my Mum. She’s a Deaf BSL user and you will need to arrange for an interpreter” (like many, our local hospital has a “contract” as well as a staff Deaf Awareness Training programme).
As my Mum moved through the hospital process and the doctors tried to establish what was wrong I repeated that sentence to everyone we dealt with.
Twelve frustrating hours later and with no success in getting anyone to book an interpreter, day one ended with Mum being admitted and us being told that because it was a Friday evening, no-one would be able to do anything (about sourcing an interpreter) until after the weekend.
Mum ended up staying in hospital for twelve days. In that time she became seriously ill, eventually requiring emergency surgery.
In that twelve days we received just under two hours of professional interpreting support. The rest of the communication support was provided by me, her “BSL literate daughter” (as described in the discharge notes) and a family friend (also an interpreter).
The hospital’s contract did not allow for interpreters to be provided out of hours. Nor did it allow for the two interpreters that we did see to stay longer than the time (thirty minutes for the first interpreter and an hour for the second) they were each booked for by the agencies providing the contract; this, despite the fact that the agencies were paid the standard three hour minimum fee.
It also didn’t allow for video interpreting (“Wi-Fi issues”); this, in spite of the fact that I interpreted one early morning consultation from home, via FaceTime.
I’m a professional interpreter. I know my boundaries and ethics; and I’m very aware of the NHS Accessible Information Standard. As part of my day job I spend a lot of time working to improve mainstream Deaf awareness and access.
But in that hospital with a sick Mum I was a CODA, just like my seven year old self; responsible for communication and with no boundaries, my sole focus being my Mum’s access and well-being.
There were times during Mum’s stay that I interpreted whilst wiping away tears. I even found myself apologising for being upset whilst interpreting for the doctors speaking to us as a family.
Seeing my dilemma and not being well enough to challenge it herself was hard on my Mum, a fiercely independent and proud woman. All very distressing – and unnecessarily so.
The dilemma was clear – what took priority? Years of professional training, practice and an awareness of boundaries – or the instinctive need of a daughter wanting to make sure her Mum received proper care?
I opted for the latter – and the system took advantage. On day one I worked for twelve hours without a break; not wanting to leave Mums side for fear that in my absence someone needed to run another test or ask more questions. For the entire twelve days I was on call 24/7. All of this professional access provided without fee.
I wouldn’t ever expect to be paid for what I did with my Mum. The innate CODA part of me says that this is what any good daughter should and would do; and I know that if needed, I’d do it again. But. When the hospital team wanted to assess and treat my Mum I wasn’t allowed to be a daughter – I was clearly an essential means of communication; who just so happened to be the next of kin.
I spent hours asking for interpreters during Mum’s stay in hospital and have subsequently logged a very long and detailed complaint. She’s now home and, thanks to a team of excellent doctors and nurses, is going to be just fine. But. If she didn’t have me, a professional interpreter for a daughter, things could have been quite different.
I know that some hospitals and health trusts are excellent, with many doing all they can to ensure fair and equal access. However, I also know that our experience is not unique.
How is it that, after decades of campaigns, education and the lobbying of mainstream society to be more aware that, in 2018 my right to be a daughter is so blatantly unchanged from 1981 – and that for many Deaf people, access to hospitals and healthcare professionals is only available if they have a hearing child/ relative/ partner/ friend to interpret for them?
Amanda Casson-Webb has been a registered qualified BSL/English Interpreter since 2001 and is a member of the of the executive team at the Royal Association for Deaf people (RAD). All views expressed in this article are personal.
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Ivan
November 27, 2018
An emotive and lucid piece of writing, eloquently highlighting the plight of so many Deaf service users and their hearing family. Again we see that profit trumps provision. How on Earth, can provision not be provided at weekends! Are Deaf people expected to only fall ill within office hours!
Pamela Morgan
November 27, 2018
Amanda we do fully understand where you are coming from. Nothing has changed since 1981. We remember visiting your dad John in hospital, no interpreter was in sight! We have been through the same experiences with my nanny, mum and dad, also our daughters trying to help me when I have been ill in hospital. I hated it as it’s not fair on them at all. I don’t want to be dependent, but at times it cannot be helped!as we don’t have any choice. Recently I have been in A&E and stayed overnight. Given some new medications without any explanations. Took them and became ill with side effects, I am lactose intolerance and it’s marked clearly in my medical file!! I am so sorry to know Diane has been ill, but so glad she is now better, please give her our love 💕 and of course you and family! Thank you for sharing your experience with us. I wish I could copy, paste this and send to No 10 Downing Street, but will it work? I very much doubt it!! X
Merfyn Williams
November 27, 2018
This makes me so mad in this day and age.
Our beloved d/Deaf organisation need to stand rank together and represent properly once and for all and not to bark lack resources. I feel it has been the lack will and determination and often the case able-led . Sadly, I feel each organisation are too compartmentalised doing “their own pet project” and not working with the benefit and needs of the d/Deaf community.
I too have to fight my corner for every appointment that comes through my door for communication support finding “help” is “conditional” and “chaotic” and it has been very stressful affecting our mental well being.
The Hospital complaint process alongside PHSO is very poor indeed. The scrutiny and monitoring bodies too I feel fails us.
The Department of Health should hang their head in shame doing the preaching including NHSE and our local CCG – they too preach “to put disability into strategy it is expensive”and getting away with it. Our advocacy service are poor in the staff lack skilling the needs to advocate deafness and access. Preaching ideology is all very well – it is the walking that need to take place.
No wonder we are left to the wolves having no legal support, and urrmmmm what does the Equality and Human Right Commision do to represent our situation – it is very edividental that discrimination does take place?
The Sick of it Report – binned and forgotten me think ?
Alison Jones
November 27, 2018
Sorry to read this story and it is not good enough. Have you sent this to your local CCG commissioner and patient experience people?.
Merfyn Williams
November 27, 2018
Not forgetting CQC and PALS but again do they walk in the listening, learning and understanding. The hard bit about contacting someone at CCG is who and it can get lost in translation when you do report? Patient experience doesn’t have much clout.
June Hamilton
November 27, 2018
So glad your mum is going to be fine. She was a fantastic support to me and extremely understanding whilst during my level three NVQ my dad became seriously ill and subsequently died. You should never have had to go through this experience, being both worried daughter and interpreter. The latter should have been dealt with for you. I will share this as the awareness of the lack of support needs drastically improving! Please pass my best wishes to your mum. X
Mark Smith
November 27, 2018
Amanda – why not invoice them at your professional rate for the time you spent interpreting for medical staff (rather than simply being a daughter for you mum) and see what happens ??
For those who are not qualified I have written a draft of a disclaimer /acceptance of liability that family and friends and other well wishers who are not qualified interpreters can ask Doctors and medical staff to sign before they act as communicators (the doctors have to sign to say they understand the communicator has no professional liability insurance and is not qualified to communicate matters of medical legal or financial significance and should not be relied on for diagnosis or in prescribing or recommending a course of treatment and that they personally accept full liability for any errors of communication – I would love to see Deaf organisations adopting and recommending this approach to parents carers and CODAs and am happy to share what I have written – anyone from BDA , Action on Hearing Loss, RAD who might want to adopt this or any Deaf Lawyers who would like to cast an eye over it and make it more watertight?
Just an idea
Mark Smith
Minister with Deaf People in the Diocese of Leeds
Alison
November 28, 2018
Is it perhaps up to us as Interpreters to change the system? I for one am happy to be contacted out of hours for hospital work and I know many others are too.
It isn’t for a lack of Interpreters being available – like you said it is the apathy from the professionals in trying to provide one and the restrictions their ‘contract’ has like not providing Interpreters out of hours.
We can be contacted directly through NRCPD website and will be cheaper than going through an agency. It’s win win for everyone.
Alison
November 28, 2018
Actually it is not always easy to book interpreters – I book interpreters both professionally and as a volunteer for a local charity. The agency I’m required to use at work actually has a statement on their automatic reply stating that they will do their best to find an interpreter but that there is a national shortage of interpreters. I usually need to give several weeks notice if I need an interpreter, which is clearly not an option for emergency hospital treatment.
James Watson-O'Neill
November 28, 2018
I’m so glad that you published this article Amanda – it’s a great reminder that we need to do more to ensure nothing less than excellent communication and access in hospitals and throughout the health system. As Chief Exec of SignHealth I’m committed to trying to do more – I hope that RAD and SignHealth can work together on that and lots of other things too.
MW
November 28, 2018
Fingers crossed but I rather buy in my own interpreter to attend hospital under the phb tht would get rid of high cost. Admin not doing their job etc. Deaf people need to own it. So why deaf can’t get phb or direct payments? Deaf org need to ask us what we need to see improving. It shouldn’t be able-led and us being passive with it.
Colette Phippard
November 29, 2018
There isn’t a lack of interpreters, there are 1,100 registered sign language interpreters with the NRCPD, this the most there has ever been. It’s true that the demand still outweighs the supply but making a blanket statement that there is a lack of interpreters does not take into account the real issue here – there’s a lot behind this. In Amanda’s case the agency that holds the framework agreement (she hasn’t said the name but from the nature of the provision she describes I can narrow it down) is one that offers such poor T&Cs, underpays and delays payments to interpreters and puts them in inappropriate or poor working conditions so that most interpreters won’t work for them. The issue is with who holds the contract and that is a problem between the hospital and the agency – it is not as simple as saying the problem is due to a lack of interpreters – a situation has been created where there are plenty of interpreters but few are willing to work under the terms of that contract. Interpreters refuse the work because they are professional people who won’t entertain the race to the bottom that such contracts encourage – otherwise its not worthwhile putting in 7+ years of training to be a registered interpreter and ultimately, standards suffer for the users of interpreters.
As an interpreter I have also experienced the frustration of getting staff to book interpreters to replace me when the agency (or maybe an administrator) has hugely underestimated the length of time an interpreter will be needed for. This two hours business is extremely common and they do it for things like day surgery where an interpreter is going to be needed all day (this isn’t communicated by the agency upfront who just advertise for a 2 hour consultation in a hospital – surgey is a very different thing) …. So they think Deaf people won’t need an interpreter to stay with them when they get bumped in the order of surgery? They won’t need an interpreter to be there until they are put under anaesthetic? They won’t need an interpreter there when they come round in recovery? They won’t need an interpreter there when that aftercare information they were given when they just came round has understandably been forgotton and needs to be repeated? They won’t need an interpreter to be discharged??? The belief seems to be that an interpreter is only needed for signing a consent form at the beginning ….. and also, sometimes such agencies send training interpreters to do this – that’s not appropriate as a consent form is a legal document and needs to be interpreted by an RSLI. The hospitals are paying agencies huge amounts of money under the current framework agreements and, for some reason, it is seen that their only role is to provide an interpreter. Actually, the hospital is paying for expertise to know whether a job needs an RSLI or a TSLI and for how long it would be reasonable to require an interpreter for. So far as I can tell, someone who knows nothing about interpreters makes a booking for 2 hours and the agency just provides it without asking any questions or challenging it (even when interpreters ask them to) – it is extremely poor value for that money.
In my ASLI region we had a talk from a Deaf CQC inspector and he took us through the parts of the NHS Accessible Information Standard that are relevant to Deaf patients – Amanda mentioned that she already knows about the contents of the act but he also encouraged people making complaints to hospitals to copy it to the CQC via the link on their website – https://www.cqc.org.uk/contact-us/how-complain/complain-about-service-or-provider by using the ‘share your experience’ tab. The CQC will then specifically focus on any complaints they receive when they are next inspecting that health care provider.
Julie
December 1, 2018
I agree Colette – the “national shortage of interpreters” is being used as a convenient excuse to cover up the inability of many agencies to fulfil the terms of their contracts with the NHS.
As an interpreter myself, I have experienced the same issues that you describe. In my opinion, the system for booking interpreters is not fit for purpose and because the NHS is being stretched to breaking point, staff on the front line don’t have the time to struggle with it.
I know the issue of fees is always controversial. However, if I invest money in a pension (for example) after taking financial advice, the paperwork tells me how much the advisor is paid by the company. I wish there was similar legislation that compelled an agency to show how much they are being paid to supply an interpreter.
Merfyn Williams
November 29, 2018
Firstly, I realise this is a conversation amongst interpreters. But…. as a deaf service users I read with interest and concerns…
“In my ASLI region we had a talk from a Deaf CQC inspector and he took us through the parts of the NHS Accessible Information Standard that are relevant to Deaf patients” – i would have love the same opportunity for this person to also come and talk to d/Deaf service users too. I wondered if this has happened or not? If not, why not? Many d/Deaf people are not being empowered effectively.
Thank you for the CQC link – but I much refer a face to face chat with CQC and for them to take note. Email communications can get lost in translation. Do they offer this with communication support in place?
With regards Complaints – I have taken that journey with my local hospitals and unfortunately they are flouting the NHS Complaint Regulation in the handling complaint – having got a reference number and it is now 8 months overdue.
I don’t have confidence with PHSO having had a poor outcome with them – since in my opinion they are not listening and to really understand the politics d/Deaf issues.
My local Healthwatch was alerted since they inspected GP practice and wrote a report on the need for improvement towards d/Deaf service users but does not with the NHS Trust I became frustrated with them too because it is able-led.
I am very concerned with Agencies having vested interest and power in the dealing with NHS Trust such as Language Line. Sitting on governing bodies as advisors is an example I feel it is very wrong. Also, d/Deaf people sitting on them having become tokenistic gesture – I resigned.
As a deaf individual complainer it is much harder and much lonelier in the trying to communicate better access and deaf awareness. We don’t get enough support.
Advocacy services we have today does not meet a good level of standard in the understanding deafness and access to represent us.
Keep sharing/ informing and helping us be more aware of what is going on really does help. Thank you Collette.
Colette Phippard
November 29, 2018
Merfyn, it’s not at all an interpreter conversation only as it affects us all – ultimately interpreters exist because Deaf people are there and need access so it’s higly relevant to Deaf people. One reason so many interpreters don’t work for such agencies is because it would just be the beginning of reducing quality and standards for the Deaf and Hearing people that rely on interpreters and that is very much your business.
That’s a good question about the CQC thing, the reason we had this presentation at ASLI is because locally there is a deaf person who is a CQC inspector and interpreters have to do CPD training to keep their registration with the NRCPD so we approached that person and asked them to do the presentation. They spend most of their life being a CQC inspector so there’s not a programme to tour the presentation but I have the powerpoint presentation and it is perfectly fine to share it – happy to forward it on but don’t think I can attach it on here. I agree it would be best to give information to CQC in BSL but so far as I know it can only be submitted via the ‘share your experience’ link on the site. Sending the info to them is not ‘complaining’ to the CQC, more making them aware of your complaint to a hospital so that they will challenge them about it to see what improvements the hospital has made when the CQC inspect. They will put them on the spot with specific questions about access for Deaf patients. If you want to get in touch with me (I’m on the NRCPD register) I can ask those questions to the Deaf CQC inspector.
Francesca Tweedy
December 12, 2018
I had the EXACT same experience earlier this year. My father spent a month in hospital and I had to drop everything and be there for hours every day to interpret (I am not a qualified interpreter, but a BSL-using CODA). I’m the one who had to interpret and tell him he’d had a stroke. I’m the one who interpreted the doctors rounds and explained what was happening every day. And I did the exact same as you – asked for a BSL interpreter the MINUTE we were booked into A & E, and I asked EVERY DAY after that. I asked doctors, I asked nurses, I asked the physio team, I spoke to PALS – I FOUGHT AND FOUGHT and in the end? He had 2 hours worth of professional interpreting in the entire 28 days he was an in-patient.
When he was due to be moved to a rehab unit, I called them in advance and let them know he’d need an interpreter and they tried to then refuse him treatment and say that he wouldn’t be able to go there because they “didn’t book interpreters”. I had to back down and promise to interpret myself just so they’d treat him.
You can bet I gave the hospital and the rehab unit them both barrels – quoted law, got SignHealth involved, took names, recorded everything.
It was infuriation and hugely upsetting. I ran myself ragged fighting for him and caring for him. I had to commute 4 hours a day to get to him, for amonth – total cost for me was almost £1,000. But that was nothing compared to the emotional cost.
I desperately wanted to follow up and make a series of formal complaints but unfortunately couldn’t get my father’s permission to go forward as once he was home he just wanted to move on and forget about it. I remain quite traumatised by the whole ordeal and very anxious about the future as his health continues to fail.