The NHS continues to fail its deaf patients, I discovered this Christmas as I learned first-hand of a patient who had to undergo invasive medical procedures without knowing what was going to happen, let alone giving consent.
The real names of the people involved in this story, at their request, will be kept confidential and so will the hospital in order to safeguard the patient; but the information contained in this account is double-sourced and is a first-hand account of the shambolic treatment of a deaf man, alone in hospital on Christmas Day.
It is yet another example of the NHS’s ongoing failure to provide deaf patients with information or dignity during their treatment while also denying them the chance to express their wishes and feelings.
“A few days before Christmas they starved Mark for 24 hours,” my source told me.
“That’s standard procedure before a (lower-gastrointestinal) endoscopy but they didn’t tell him that’s what he was going to have. As far as he knew they just stopped feeding him.”
“Then when he was due to have the endoscopy, it was delayed by a few hours so his hunger went on and on and no one told him why he was being starved until he figured it out for himself when the time had come. He didn’t give his consent for it, that’s for sure.”
“Hasn’t he been provided with an interpreter?” I asked.
“Yes, he has for meetings about his discharge and when he was admitted, but most of the time he hasn’t got a clue what’s going on and that’s just because he uses BSL and no one else in there can.”
Mark, who is in his 50’s, was admitted to hospital following a stomach complaint and has been placed in a ward that is populated mainly by elderly dementia patients. In the five weeks he has been there, he has not held a single meaningful conversation with any other patient or member of staff.
“I don’t really know why he is in that ward,” my source continued.
“I went to see Mark on Christmas day. When we got there he wasn’t wearing a shirt. I asked him why because I know he would normally cover up. He just shrugged his shoulders. He is wheelchair bound so cannot get anything for himself and because he just can’t communicate any of his needs he has just given up trying. He told me he wanted to put a shirt on.”
“Then I asked him if we wanted me to draw back the privacy curtains around his bed. He said yes. It was 11am Christmas morning and that was the first time that day he’d seen daylight.”
“At home he has a wet room so he can shower daily.”
“‘Bad wash here, he said. Not enough’ and he mimicked being weakly dabbed with a sponge. I asked him when the last time he had a shower was. ‘Five weeks ago’ he replied.”
“Mark is personally very clean normally and now is being treated for bed sores and hasn’t had a decent wash for five weeks. The thing is, he can’t actually ask for a shower and has probably given up trying.”
On Christmas Day, the patients on the ward were being treated to a special dinner. A member of the catering team delivered what looked like a very sparse plate. Only two slices of turkey and a dash of gravy. No potatoes or vegetables.
“I asked the person why they were only giving him the meat and he said that was all he wanted and that he refused the vegetables or potatoes; but that wasn’t true at all. He just didn’t have a clue what he was being asked. They don’t have a clue how to communicate with him but at all seem to think they’re doing a really good job of it.”
“He eventually got his choice of mashed potato and carrots because I insisted. A couple of minutes later a man approached Mark and said something like ‘Mark, yes? Meal is good? Yes.’ Wrote something down and walked off, all without getting any response.”
My source then confronted a nurse about Marks treatment.
“The nurse just said he’s fine and he can understand everything and there’s nothing to worry about. She insisted he knew everything that was being said to him. I couldn’t believe it, but she just demonstrated how misguided they in there are.”
“After the last complaint Mark made about his treatment in hospital, which was about three weeks ago, the hospital said they’d make sure all the staff knew what his communication needs were. On his notes he would have ‘sign language user’ written across it; but even that hasn’t happened.”
Another complaint will be lodged but they hold little hope of seeing any improvement.
Over the Christmas period Mark has been starved without knowing why; had invasive treatments given for which he provided no consent and faced sitting alone in almost solitary confinement for weeks.
“He’s an intelligent man but in there they don’t value his intelligence at all.” They added.
“He has his rights trampled on, he can’t express himself, he doesn’t know what’s happening and he’s left behind a curtain. Even if some nurses just learned the basics of how to communicate with deaf people that would make a huge difference but it just feels like it’s too much to ask.”
Andy Palmer is the hearing father of a Deaf son, and is also a child of Deaf parents. He is Managing Director of the Cambridgeshire Deaf Association, runs Peterborough United’s deaf football teams and is Chairman of the Peterborough and District Deaf Children’s Society and teaches sign language in primary schools. Contact him on twitter @LC_AndyP
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Linda Richards
January 18, 2016
This is sad. I hope ‘Mark’ is out of there and feeling much better.
This sort of stuff is happening far too often.
Is there no Deaf organisation (or group of Deaf organisations) who will take up such cases, raise the public profile of such shortcomings, such discriminatory and neglectful behaviour, such illegal practices, and seek resolution, recompense and mandatory improvements?
How many Deaf organisations are delivering ‘health-elated’ projects for which they have received funding but which aren’t addressing cases like this, changing practices or clarifying the mis-information relating to health issues?
We need a legal team here. Enough is enough.
David
January 18, 2016
Disgraceful and heartbreaking case!!!
Judith Pryer
January 18, 2016
Mmmm ! I understand the point of the story and I’m not doubting whether it is true or not. The story however states that Mark is an intelligent man and yet there is no mention of him trying to communicate by writing notes. I don’t say it is ideal to use anything other than BSL but surely one has to try and find another way to communicate in such circumstances. I too have just been hospitalised but only for three days. During that time a pen and paper were constantly at my side for exactly the same reasons that Mark experienced. In hospital for 5 weeks and simply allowing poor treatment to continue without at least attempting another form of communication whether one should have to or not is incomprehensible ! Why ?
Kirsty
January 18, 2016
I was wondering the same thing Judith
Cathy
January 18, 2016
Same here, Judith. I kept thinking how can an intelligent man not use pen and paper???
I was in hospital over 10yrs ago for 3wks, with no interpreter whatsoever! This did not stop me from communicating: pen n paper was my saviour. I do not like stories where deaf people are portrayed as being absolutely totally helpless! It does our cause no good at all.
Where was the hospital’s menu list for meals? Mark should have got exactly what he wanted by ticking the list, as I did!
It is not always possible to book interpreters for whole days on end, but they should be granted for pre operations and post operation so Deaf people understand their health problems and after care.
There is still a long way to go in the nhs but please do not portray deaf people as “dead end robots” who appear to have not the slightest means of communication because its a false picture!
Andy
January 18, 2016
Hello. The chap is unable to write as he doesn’t have use of that arm
Sarah
January 19, 2016
Judith Peter have you read what Andy said? He unable to write……
katyjudd2013Katy Judd
January 18, 2016
Healthcare staff often say communication with their Deaf patients is fine and don’t realise important information is being missed. They don’t realise the interpreter is there for both of them, not just for when the doctor needs to gain informed consent to a procedure for example (though even that appears to have been missed in the above example). D/deaf Awareness training is needed at all levels of the NHS and should start with senior managers and include patient stories, so they understand why it’s so important to pay the trainer and release staff from other duties to attend. Deaf patients can take some responsibility for trying another form of communication, such as written English, but remember that they feel sick and are in a strange environment. Healthcare staff however, are required by their codes of conduct to take responsibility for good communication. Unfortunately they often just don’t know where to start, panic and don’t think of apparently simple things like finding out how to book an interpreter, drawing pictures etc. Becoming Deaf aware takes time and many healthcare staff never meet a Deaf patient – that maybe hard to believe but I swear I worked in the NHS for 30 years before coming across Deaf patients at work!
pennybsl
January 18, 2016
Extreme story but it can happen to a single Deaf individual.
Nurses who are CODAs could do only so little within the institutional framework of the NHS.
I have seen near-ignorant issues at occasions when Franco was treated. His two Macmillan nurses, one then another over 4.5 years, who acted as a go-between with him and the healthcare staff by texting and emailing avoided such instances as much as possible.
But such non-accessible instances are too common in non-cancer cases like Mark’s. It happens still with a young mentee who has mild LD in London hospitals.
There is no clear, enforceable, Deaf-involved policy throughout the UK for both staff AND patients visible enough to avoid what happened to Mark.
Institional staff ethos pressed by polarised opinions about patients who miss out on the medical staff’s sayings (including older people, learning disabilities etc) are to be blamed. It is easy for deaf patients to be intimidated by the system of ‘medical care’.
It is astonishing that not even the staff attempt to write notes, too.
Training includes good communication and it is gobsmacking to see that no staff seemed to notice that Mark was still clueless!
There are Q&A tactics to ensure the patient is properly informed.
No mention of family and friends apart from the witness who share with Andy.
Organisations are actually toothless by their charity obligations and the success of successive Governments’ divide and rule manner in UK citizens, especially UK’s Deaf & Disabled people. The Government is full of abled-bodied decision makers who cause policy decisions which expose the unacceptable ignorance of informed diverse processes, causing charities to use expertise and donated money to ‘advise and educate’ the Government.
Especially in healthcare issues.
LJ.
January 18, 2016
I wonder if compensation culture is at work here because the story doe’s not sound right. Has ‘Mark’ got severe learning disabilities? Even with one arm he could ‘tick’ the menu with the other.
Andy
January 18, 2016
No one is claiming any compensation as far as I know and I completly believe my sources who are both professional people of good standing and totally unrelated to Mark.
Neither them, Mark nor me have anything to gain from making up stories about deaf people in hospital.
I have already said he is an intelligent man so I have absolutely no idea why you introduced a severe learning disability into the mix. Or compensation culture for that matter.
I wrote this article with their permission using their words because I was so disappointed to hear it. I do understand that it all being nameless can arouse suspicion about its legitimacy, but I wouldn’t write unless I was convinced by my sources testimony.
It is unbelievable. There are many questions unanswered and it seems incomprehensible but that’s the way it was told to me. I could have gone deeper on the detail but I wanted to keep it to the major points. Also I didn’t put any of the alegations to the hospital when it would have been interesting to find out more about the details. The how comes and why nots.
Good question though.. Why wasn’t he given the choice of food presented in a visual way so he could make a choice? That’s what I would have done and I’m sure you’d be just as thoughtful.
But that didn’t happen. Go figure.
Natalya D
January 18, 2016
I wish I could say I was surprised but I’m not. I’m a veteran of hospitals and one of the reasons my mum stayed with me almost 24/7 as a child while I was in hospital (not the done thing in the 1980s) was because people would ignore BIG SIGNS saying I was deaf and fail to communicate with me properly or panicked cos I wouldn’t wake up when they shouted at me.
I’ve had some GREAT deaf awareness from hospital staff but my needs are comparatively simple, I hear OK IF I have a hearing aid in and I have “good speech” so can use my words at people. I imagine if I was a BSL/SSEer things would be much harder. I also grew up in a medical family, so I learned over the years how to demand clinicians meet my needs and even so it’s a constant tiring battle. I worry more about people like Mark who sign, have other impairments and medical staff who insist he understands when he clearly doesn’t.
The problem is our Equality Act is designed to make users go through administrative complaints first which eats up the time allowed for legal complaints which are bureaucratic and difficult. In the USA the Americans with Disabilities Act is much more civil rights based and people can take a case without having complained to the discriminatory organisation first.
Linda Richards
January 18, 2016
I wasn’t aware intelligence was linked with the ability to use English.
Cathy
January 20, 2016
No, intelligence is not linked to the ability to use English. It is the ability to think outside the box. Mark had a bad arm, but couldn’t he have used the other? And even without speech one can mime. I often use it to great effect. Lateral thinking can go a long way especially in communication.
Linda Richards
January 20, 2016
it might just be hard to think when your on your own, isolated, starved (in more ways than one and deprivation of food will have an impact), frightened. For hours, days, weeks on end.
Let’s have a bit more of the “There but for the grace of God ….” And well as an effort to direct this to the attention of those who should have more than their wrists slapped for such despicable, discriminatory and dangerous practices.
And let’s do for anyone who needs BSL- regardless of any other issue or need there may be.
And let’s do it for those who may not be able to do it – including those who are very young or may have dementia.
And let’s stop these offensive statements.
Andy, how can we get back to the issue in hand, which is to raise this case at the highest level possible and draw the right publicity to it?
pennybsl
January 19, 2016
Andy, most of us believe you and your approach in presenting the issues.
As you have explained in your last comment, no one would disbelieve you.
It is evidence of the ‘divide and rule’ handling by our Governments upon the Health Serive, especially where Deaf & Disabled patients are concerned.
Kings College Medical School at Guy’s continue to train medical students BSL and Deaf Awareness after a decade; more examples urgently needed elsewhere.
pennybsl
January 19, 2016
Another serious issue: if communication and Deaf Awareness were appropriately used, Mark would have stayed in for far less time; what is happening with his DWP benefits?
.
The DWP, if it discovers the five weeks’ stay, would cut off the benefit…or takes out one month’s benefit inc DLA from Mark’s bank account.
When Franco was hospitalised in October to early December 2013 he was out for one weekend, meaning less than 3 weeks each stay.
Yet the DWP insisted and insisted on knowing the dates of his hospitalisation and insisted on taking out money. At the time, already I reported F’s passing to his bank, his account was frozen; the DWP still persisted in its demands for its money!
My explanation of the circumstances and the need to cover access costs were stonewalled mercilessly.
It was very very small amount; the executors paid that last year.
Previously in 2011, when F’s tiny part-.time role in North Downham’s Deaf IT class ended due to local cuts in funds, the DWP decided itself to take money from F’s DLA..long story, but caused F NOT to apply for JSA, it was traumatic, he was still a cancer patient then.
Therefore: if the DWP pokes its nose into Mark’s situation, support him please.
Tim
January 19, 2016
I am dismayed to see comments like ‘Why didn’t Mark use pen and paper, why didn’t he do this or that…’ It seems that Deaf people are quite vulnerable to the ‘blame the victim’ sort of oppression, even from other Deaf people. If that’s not bad enough, now people are ascribing ulterior motives to the complainant.
You have to be very careful about using omissions to point the finger of blame. We’re not all the same and we don’t know anything about Mark, except what is put forward here.Deaf people are very varied and have very different personal circumstances. Not all of us are not pre-lingually Deaf, we did not all have a good oral education which gave us a good command of English. We do not all have a good, supportive middle-class family, we do not all have a lot of luck and opportunities. We do not all have to deal with just Deafness and nothing else.
Saying that Mark is intelligent is not the same thing as saying that he has a competent command of English. His complaint should be taken seriously and he should not be blamed for things that went wrong.
Linda Richards
January 19, 2016
And Mark most certainly should not be blamed for
1): a failure to exercise a duty of care
2): an audist society (some proponents of which appear to be here!)
3): Titan disregard for the Equality Act and other legislation, policies, and decent behaviour.
deaflinguist
January 19, 2016
This is an issue that applies across the spectrum of deafness: there really needs to be a national policy in place to ensure that communication needs are met (whatever those needs are) – right across the NHS – from audiology to oncology and beyond. At the moment it’s piecemeal (it’s a postcode lottery) and it’s not consistent or advertised in the right places to the clientele who would benefit. I happen to live in an area where support is usually very good. I suspect that the plight of elderly deafened people is just as acute, adding to the misery of their final illnesses. My mother was severely deaf and visually impaired through age and culturally conditioned not to ‘make a fuss’ or ‘be a trouble’. I think she was written off as confused = probably dementia on the grounds of her age, when she was confused because she didn’t physically understand what the doctors were saying! She would nod politely when they did their rounds and what not. It is not right that I, deaf myself with a dad also with age-related deafness, had to stand my ground with the doctors to ensure that she understood what was going on and that she had appropriate care measures put in place on her discharge. The social worker commended me for standing up for her, but it shouldn’t have to be like this! (I wrote about this on a Secret Deafie article some time ago and it still angers me hugely.)
Hazel Patterson
January 21, 2016
I work for NHS Scotland in the community. We regularly receive emails offering deaf awareness training and an introduction to BSL. That’s where I first learned and loved BSL. I have been fortunate enough to obtain funding right through to my current BSL level 3. I got my funding through our equality and diversity department. So the training and funding is there for staff who are willing to learn. I’ve now condensed my hours to take a Friday off. I have an interview with Deaf blind Scotland this week to see if I can help out a few hours a week. If I knew Mark and he was in one of my local hospitals I would have visited him. It’s a disgrace that the stressful situation of being in hospital was made worse by lack of communication. My mum was in a similar situation with dementia. I always used to defend the NHS to the hilt but some so called health professionals lack of compassion and willingness to go that extra mile beggars belief. I think we need to remember that without patients we wouldn’t have a job.
angela
February 23, 2016
This is happening today for my uncle, no he isn’t totally incapable but at the moment he is very poorly he is 76 been in hospital for over a week
We were told he was dying one day ready for discharge the next had pneumonia the day after have been arguing and pleading for sign language interpretation until today none was apparently available (finally tomorrow one is coming) the majority of staff have tried their best even got a picture book for him to point things out but this could all have been organised so much bett