Amelie Chan, aged 9, has Charge syndrome, a recognisable pattern of birth defects that occurs in about 1 in every 10,000 births. Amelie is deaf and cannot communicate with many of the healthcare professionals who support her during her regular trips to hospital.
Lesley, her mother, thinks its important that NHS staff learn sign language and some of the nurses have pledged to learn new signs every week as part of NHS Change Day, which was in March.
As her daughter grows up with the condition, Lesley says it is becoming more important that Amelie is a full participant in her own care, especially as much of it is invasive. Despite being visually impaired and spending a third of her life in hospital facing multiple operations, Amelia has learned to communicate with basic sign language – but that doesn’t seem to help in hospital.
“We’ve been going to hospital as an in-patient for nine years now and a lot of the time Amelia is just sat bored in her room with nobody talking to her and I always think why does no one ever sign to her? Why does nobody attempt to sign to her or even ask ‘how do I sign to her?'” Lesley said.
‘My husband has been learning BSL level 1, I’ve been working all the hours I can and learning sign language off mobile phone apps and we’ve picked up what she comes home from school with but there’s no support for parents to learn sign language if their children are deaf.
“The Children’s ward nurses are learning two signs a week at the moment but the nurses have got no support to learn sign language, no professional teaching them – they’re teaching each other and doing their best.
“The nurses learning sign is the difference between communication and no communication because nobody ever speaks to Amelie in hospital. The play specialist in the video we made about signing in the NHS, called Dave, learned the basics in five days and I thought, it took him five days to learn that and took nine years for everybody else to do nothing. So to me, him learning sign language was massive.”
“Every time a nurse goes to do something invasive to her and I tell them that Amelie is deaf and can’t talk, they look at me instead and tell me what they’re going to do to her – but I’m not the patient, she is. I’ve started saying to nurses that they shouldn’t touch her unless they have communicated with her about what they’re going to do because she won’t just comply and offer parts of her body or the tubes or the clamps – she’s not stupid and sensitive about her own body like everyone else.”
“Other girls her age wouldn’t tolerate it so why should she.”
You can read more about Amelia on her blog here
By Andy Palmer, Deputy Editor. Andy volunteers for the Peterborough and District Deaf Children’s Society on their website, deaf football coaching and other events. Contact him on twitter @LC_AndyP
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Methusalada
May 20, 2014
Wowee ! Thank you for the video & wealth of info on your email. My first impression was what a wealth of info their is in here to take in . So I have save to save this email in my feeds to be able to come back to discover 1. What is in this email of info that is useful to myself. 2. How can I help The Limping Chicken . 3. On the subject of BSL sign language I must get myself into gear locally on BSL level 1.
Diane Broad
May 20, 2014
Thank you for showing this. I would love to help you – however I don’t now how? I have a disability myself now (hydrocephalus) which has affected my walking and balance – so I rarely leave the house without my husband’s support. If you needed a Virtual Assistant – which in case you don’t know is a home-based secretary please contact me. Diane Broad
Lesley Chan
May 21, 2014
Thank you Diane your message of support is empowering me to keep going with my pledge x
Cathy
May 20, 2014
This is a powerful message and I would first like to say that I sympathise with your daughter’s plight.
Communication is indeed important for all of us, but we must remember that first and foremost that health professionals look after our health.
This type of problem would arise whatever the health of the person in question and to speak to the mother is a natural normal instinct.
If we insist that staff learn BSL we would then have to insist that they learn a plethora of other languages that now proliferate Britain, on the pre chance that a disabled Polish child could not be communicated with! This would be madness and totally unrealistic.
The staff may also not have the time for learning a language for someone they are rarely in contact with, as most sign language is largely forgotten when it is rarely used.
The best way forward would be to have her regular carers learn a few basic skills which they could then use for her hospital visits. So the signs they will learn can be linked to her care and made more personal. This should help to make her more comfortable with what is happening around her.
These carers could learn online as classes are not only dreadfully expensive but very time consuming, eating into their personal and family lives.
I know it would be fantastic if all NHS staff could sign, but we cannot expect it when we do not expect all deaf people to learn English.
I wish your lovely daughter well indeed.
ann
May 20, 2014
It isn’t really comparable to compare learning some BSL with learning polish. ..more along the lines of a nurse in Wales learning some basic Welsh. No, it isn’t feasible to expect all staff to be fluent on BSL, but it is reasonable to ask that health professionals with whom you have regular contact learn a little to be able to involve you in decisions in your own care.
Lesley Chan
May 21, 2014
Thanks for your message Cathy, but I think your missing the point. My daughter has had regular contact with the very same professionals for 9 years, why is it unrealistic for them to have some basic sign language for her to make sense of her care ? Why has no one attempted to communicate to her. Simple signs e.g. Medicine, pain, hello, please, thank you, nappy.
My child deserves to be communicated to the very same as a hearing child. It’s a basic human right. I think it’s messages like yours that put a negative spin on “it can’t be achieved” when it took one play specialist just 5 days and a few minutes each time to communicate to Amélie.
Secondly, I have never left my child in the care of carers or left her hospital bedside. She is partially sighted and can not speak. Tailoring care is essential as is continuity for multi-sensory impaired children.
Universities can teach basics of care sign words and NHS staff should embrace it, signing to each other will ensure it’s not lost. I am also very proud to announce Salford University on the back of my NHS pledge are teaching simple care signs.
Let’s stop the negativity and barriers for deaf people, they don’t have the luxury of big word or telephone interpreters either.
ian
May 20, 2014
Re: Cathy’s statement “I know it would be fantastic if all NHS staff could sign, but we cannot expect it when we do not expect all deaf people to learn English,” this is an unbelievably ignorant statement to make. Any hearing person can learn to communicate using sign language. Many deaf people cannot learn to communicate verbally in an effective way. That said, it would be difficult for NHS staff to all learn BSL. However, this child obviously spends a significant amount of time in hospitals, and her regular caregivers could certainly make an effort to learn a few basic signs. At the very least, a professional interpreter should be provided by the NHS for Amelie for all of her health care encounters.
Lesley Chan
May 21, 2014
Ian I couldn’t agree with you more and yes people are ignorant, especially if it isn’t affecting them, so it’s a matter of cost and resources in BSL interpretation services rather than meeting individual needs.
dawni312
May 20, 2014
Cathy – touching Amelie and attempting to perform medical procedures on her without gaining her consent or talking to her is unfair, she has a right to understand what’s happening to her! NHS staff have a duty to care for a person in their entirety, not just the virus or infection. To believe otherwise is everything that is wrong with our medical model of care.
Lesley Chan
May 21, 2014
Exactly … I don’t touch anyone in my care without informed consent, is my disabled daughter different ?
No she is not and I expect the same level of care as any other. I am very pleased all nursing staff at CMFT who have watched our film have made tremendous efforts with Amélie since viewing the film. Sometimes the patient experience empowers NHS staff to make change! And that is my goal !!
pennybsl
May 21, 2014
Thanks for sharing.
The NHS need to know basic BSL, Matakton (there are many patients with learning and physical disabilities using it) and everyday gestures for all patients who need this visual communication in hospital.
Many times my late husband, deaf with a big D, got particularly stressed out by being forced to “lipread goldfish & mumbling lippatterns, no pointing or visual aids, even being spoken to with backs turned to him, by medical staff who changed shifts.
Either that his file did not have a clear label on top ‘DEAF – prefers sign and clear speech’ or that such communication preferences were not prominent online, this must not continue during the so-called technological 21st century.
It is inexcusable for trained NHS staff who all did a mandatory module on communication not to know common-sense human sign / gesture at times of need for the patient who wants this.
Parents of children like Amelie deserve such consideration as well.
Lesley Chan
May 21, 2014
Thanks Penny and I am saddened by your husbands experiences. I recently attended a deaf awareness session by a deaf “D” man and even I, supposedly deaf aware could not believe some of the barriers he had faced in life. Deaf people are completely excluded in so much of their health care and the “sick of it” campaign highlights this and the poor health deaf people suffer, because we fail their communication needs.
I am not asking for all staff to become fluent just to learn the basics is all I ask for Amélie, as that is all she is capable of learning for now. But for every deaf person not neurologically impaired they must have access to BSL interpreters for all NHS appointments and care. And that excludes using family members!!
joanne
May 21, 2014
sooo amazing i hope all over the uk will do the same it is the most important for deaf people who need communication ,,wish her get well and all the best in her future
Lesley Chan
May 21, 2014
Thank you Joanne for your kind comments … Communication in the NHS is at the forefront of all we say and do, just not for deaf people… This has to change !
Lesley Chan
May 22, 2014
I have a responsibility to communicate effectively to the patients in my care, I am accountable and I must provide an interpreter to those whose first language is not English.
Any person entering the NHS for care whose first language is not English must have an interpreter booked, or the very least a telephone interpreter provided, to ensure they understand the care and information about ther health needs.
Regardless of the millions of pounds this costs the NHS in interpretation services, it is essential people receive the correct information, so they can understand it, to enable informed choice.
Why should it be any different for a deaf person ?
Methusalada
May 22, 2014
I was In Abergele NHS hospital in North Wales waiting room today for a cataract removal operation to my left eye . All the patients in the waiting room were elderly like myself, I got into conservation with an 84 year old lady who was very hard of hearing.
After she left the room to have her right eye cataract replaced, I asked one the nurses “Mark” what measures the hospital would take for a profoundly deaf person & how many of the nursing staff were signed trainers. He didn’t hesitate or struggle to give a reply but stated that their were no patients in need of a signer for the deaf on duty today. But should a profoundly deaf person be in need of such a service they only have to make the hospital aware of their need & a signer would be provided for such a service, providing such a person or their carer make the hospital staff aware of their need.
I happily went in the anaesthetist room thinking about tiny Amelia. I was greeted by the anaesthetist. After 25 minutes Mr Mathews then declared “It’s all over , how do you feel” I replied “wonderful, I didn’t feel a thing” As they prepared me to leave unravelling my leads , cords & hooded face Ms Jones entered the theatre & was congratulated & embraced by Mr Mathews . I gave out a whimpering sigh , and silently thought to myself I am privileged to have met, two of the most wonderful humanitarians in a Welsh NHS eye hospital . Not thinking at the time about all the other dedicated humorous nursing staff to whom I now I duly apologise. You were also part of my day with your dancing singing and laughing , beef sandwich & tea.
Would I have written this comparison of treatment of the Welsh NHS & the English NHS without hearing about the needs of a tiny 9 year old deaf child in hospital and whose needs not being fulfilled to prevent her tiny fearful memories lingering on emotionally into adulthood. NO ,I don’t think so ! Can things change for other little Amelia’s or Andrew’s ?
Not in all English hospitals I fear, but hoping & knowing that it need not always be that way.
Liz
May 22, 2014
In response to Cathy! A polish speaking person would probably have an interpreter at hand for consent or explanation. Your statement leaves me bewildered. Sign language is in the main a universal language. Most of us speak using our hands. In a foreign country we try and try again to get our message over using different phrases and Hand gestures. Amelie’s mum is not insisting she is mearly pointing out an area where we all, not just health professionals everyone should be aware of the basic signs. If a child doesn’t respond when spoken to they are classed as rude. Maybe Amelie thinks all non-signing people are rude. I take my hat off to Amelie’s mum and entire family. She is doing something by making a stand for her daughter, fighting a cause in the hope that her daughters life will be enhanced by something we all take for granted – communication. The beautiful thing about this is that it is not only Amelie that will benefit. You keep going Lesley, you are an inspiration to all.
Lesley Chan
May 22, 2014
Liz I really value your reply, I never started my NHSchangeday campaign selfishly just for Amélie. I always have in the forefront of my mind “every other deaf child/person thereafter” would benefit too. I am a midwife and 45,000 children are born deaf each year. I feel I have a responsibility utilising my own experiences to try and make a positive change for those families too.
Parents of disabled children have to fight their way through a mine field of what their child’s needs and deserves, not what fits into resources and a budget.
One example; I had to fight the education system to have Amélie taken out of a special needs school and placed in a school for the deaf. This took years and was exhausting, so many times I wanted to give up and leave her stuck in a world where she didn’t understand the class room or people in it.
Amélie deserved to be amongst deaf children, and while she does have additional needs, it’s the deaf children and teachers who have managed to tap into her uniqueness and teach her signs. Teachers who embraced her medical needs and learnt to change her tracheostomy in an emergency, so she could join them. Amélie now has many signs and communicates perfectly her needs. No she will never be fluent BSL, but what an achievement she and the deaf school have done.
Lorraine
May 25, 2014
Hi
I work in the NHS in an eye clinic and I am currently learning BSL at level 3.I started to learn because one of my patients lost confidence and refused an operation because we couldn’t sign .I have funded it myself and it is not easy to learn but I can now help deaf patients and their familiies when they come to see us.
Personally I think they should teach BSL in schools .
In Amelie’s situation why doesn’t she have a BSL interpreter at all appointments? . Isn’t she entitled to one? I know there are new recent guidelines to look at supporting this.
Perhaps it is worth trying with one and see how she goes??
Good luck
Lorraine
amelieincharge
May 27, 2014
Lorainne it’s people like yourself who are an asset to the NHS. I have managed to engage a University to teach basic care signs and I strongly believe it should be taught throughout the 3 years of the degree. I also discovered a member of staff whose daughter is deaf and she has BSL 2 and will help me get my sign seasons at work up and running. Perhaps it’s people like you and I that can make these changes at grass roots level ? Also proud to say my eldest daughter is going into her 3rd year as a children’s nurse and can also manage care signs.
I hope within the next couple of years to have made an impact and change in attitudes, and people embrace learning BSL for the benefit of their patients.
tahmna
June 10, 2015
hi Lesley! don’t know if you remember me, it’s tahmina – Rayyan’s mum – you met Rayyan back in 2008. I think about Amelie now and again and when I found this article and saw how beautiful she is it brought tears to my eyes. I am so glad to hear and see that she is doing so well and that you are still the great trooper you are in getting things done and changing things for the better. I hope things work out for you all and I hope you accomplish your mission with the nhs!
love to you all
tahmina xx
amelieincharge
June 10, 2015
Tahmina I couldn’t possibly ever forget your family and especially your beautiful boy Rayyan. I’m forever thankful our paths met and I had the pleasure of meeting Rayyan before he sadly passed away.
Amélie has a blog you can catch up with the life and times of the Chan family.
Take care, Lesley x