How often the term 'elderly' is used by professionals when describing Giant Cell Arteritis. As GCA affects mainly women, I am wondering if there is some sexism related to this term also. The term 'elderly is not an academic term, it means nothing! It is a judgment on someone's capacities and worth and agism is illegal in the UK. It's more a case of a mentality which says: 'what right have you to expect any treatment, NHS money is needed for the young! Shut up and die quick'!
This really angers me. Many people in their 70s and 80s are caregivers to their spouses, they might be care givers for grandchildren, neighbours or fulfilling volunrary and important roles within the community. Many people in their 60s are still working and not in receipt of a retirement pension until their mid 60s. Many people in their 50s are still paying for a mortgage and could expect to live another 40/50 years.
However, if you look through the statistics of people who have GCA there are many in their 50s, 60s and 70s who have been misdiagnosed and mistreated because GCA is described as an illness of 'the elderly'.
This is such an ignorant term and whenever it is heard, it should be challenged. No matter how 'elderly' or not a person is, if they have inflamed arteries which could lead to blindness in both eyes, stokes, heart attacks, dementia, etc.., they should receive treatment aimed at prevention of further incapacity. Being in rceipt of dismissive treatment can lead to serious disability, over the course of 50 years this is not only a huge cost for the patient and their relatives but also for the taxpayer through the NHS.
We are moving to a time when patients classify themselves, a time of patient centred care. If someone does not feel 'elderly' and does not wish to be classified as 'elderly', they can challenge this stereotype because it means nothing except in terms of manipulative prejudice. Professionals are not trained in how to avoid the use of power but how to use their positions of power to be abusive. This term is abusive. -
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I wonder if you are reading too much into the term " elderly". As someone who works in the NHS I don't find that this term carries all the connotations that you imply it has. We regularly admit patients in their 60's, 70's, 80's and 90's into our ITU and don't admit some patients in their 20's, 30's and 40's. Clinical decisions around treatments are complex, age is a very small part of it.
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Then why use an agist adjective Keyes? If a professional is referring to a patient 50+, they should use appropriate numbers. When most people think of 'the elderly' they think of people in their 80s and 90s.
If you are working in the health service, you will be aware of prejudical treatment. Whistleblowers are often bullied as you will know if you have ever exposed bad practice.
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To be honest " elderly " is not a term I hear used very often at work to describe patients and certainly not to describe patients in their 50's! The majority of healthcare staff will now have to work till they are at least 66 to qualify for their occupational pension.
As for your 2nd paragraph I am unclear of the point you are making/ context of this?
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I can show you dozens of academic papers online written by those with the highest qualifications which refer to GCA patients as 'elderly'. You only need to put Giant Cell Arteritis + elderly into a seach engine and 31,000 results are shown.
The NHS is awash with prejudice and abuse of all kinds and anyone who contests it needs to be extremely brave.
I think that's a sweeping statement that just isn't true. In my local hospital ward I'm often the youngest by a good 20 years - if not more - and we're all treated with the same dignity and care. Quite often when I'm struggling I think of the 'elderly' folk I know/knew and say to myself, 'if they could walk up this hill, not matter how long it took them, then so can I'. I do tease my 68-year-old friend from time to time when she gets annoyed at a driver over 65 being called elderly, but she could beat me to the top of a munro any time. I seem to remember I was classed as an 'elderly' first time mother because I was over 30. I was not in the least offended.
Me too - and I was only 27! Now we'd be the youngest probably!
In the academic use I have seen "elderly" is merely a relative term within the context of "adult".
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I can go one better. I was an elderly multi primipara when I had my 4th child at the grand old age of 27. They stopped labelling me when I had my 5th at 33....lol
Yes - like orsen-trapp I'm intrigued. Mind you - I always think ANYTHING sounds awful in Dutch. I have Dutch friends - but I can't think of any other language that sounds as uncomfortable to speak. Except maybe Schweizerdeutsch - can you tell me, is there a relationship between the two languages?
It is a sweeping statement but one that is justified. There are a huge number of people with GCA who are misdiagnosed because they are considered to be not of the 'elderly' age group. Obviously it is a descriptive word which is meaningless. Most of those who use it are 'elderly' doctors, ie in need of retirement or re-training.
Well, they thought it might be GCA for me at first because I'm over 50. However symptoms didn't quite fit and the diagnosis is TAK, for which, in theory, I should be under 50 and of Asian origin! It was my 'elderly' and soon to retire gastro consultant who sent me to the city hospital with suspected vasculitis. These old doctors know a thing or two - they've seen it all during their long careers. My rheumy, and the one before her, is considerably younger than I am!
Oh dear WMTuk! what a thing to waste so much aggro on! I am 71. Obviously there has to be some term to denote this when I am not present so the medical staff know they are not speaking of a 20 year old. Your body is not the same at 71 as it is at 20. Would you consider it insulting for a 10 year old to be called a 'child', or later a teenager, a youth, middle aged? I think you are being very politically correct. So many good english words can no longer be used because of 'word rage'. I am elderly whether I like it or not. It isn't an insult, it is a fact of life. Go with the flow and relax!
Dear amms43, you are missing my point entirely and are being extremely dismissive of something extremely serious. MY GCA was missed because I was not considered to be in the 'elderly' bracket, whatever this is. If it happened to you, then you might not consider trying to redress this misconception a waste of time. Missing GCA not only put me at risk of totally losing my eye-sight in both eyes, it did cause a deterioration in my eye-sight in both eyes overnight possibly caused by a stroke which could have been avoided with the appropriate level of steroid. The consequences of missing Giant Cell Arteritis means that inflamed arteries can be damaged, contributing to an increased likelihood of stroke, heart attack and dementia and damage to vistal organs. This might not be a serious consideration for some people, but for a person of reasonable intelligence with a busy work schedule, it is profoundly disturbing and should be taken with the highest seriousness. If professionals wish to provide age appropriate information, they should do so. 'Elderly' is an adjective and a judgment and is not an academic term which they are professionals should use if they have any intelligence whatsoever.
I like Keyes work in the NHS and am offended by the implication that the care I give to my patients varies according to their age. I work on a ward that is predominantly "older people" or whatever you want to call it. I think you should waste less time on such issues, relax and focus on your recovery. Your posts always seem to just make statements rather than asking questions and seeking support which is the main reason for such forums. I myself have "probable GCA" and am undergoing investigation, I am only 49, yet I do not take offence to the terms used in the literature. your time on the forum would be better placed supporting others rather than starting debates.
There is a lot of misinformation online runrig01, I haven't called it 'the elderly', I'm suggesting that the word is archaic and should not be used as it is not an academic term which is also 'agist' and implies discrimination. I am at liberty to make statements if I wish. They raise awareness and make people think - often people find this uncomfortable but they do not need to read the posts and respond if they do not wish to. There is nothing to suggest the forum needs to be used in the way you suggest. There are many ways in which a forum can be used, you can use it the way you like, I can use it the way I like. Please don't tell me what to do. I have worked in the NHS and also read the newspapers which are full of questionable treatment of people on account of their age, a matter which appals me and should also appal others.
If you do read the papers you will be aware poor care can occur irrelevant of age. Young girls too young to have cancer etc. the papers only publish poor care and never highlight the good that happens every day in the NHS. If you have worked in the NHS as you say, I would expect a more balanced view. You are quite right you can stand on your soap box and say as you please. It's your health and if you wish to get wound up over politically correct terms and aggravate your GCA then that is your right. Unless of course the information re stress aggravating PMR & GCA is incorrect also
Not sure if anyone has read this book, Polymyalgia Rheumatica and Giant Cell Arteritis: A Survivors Guide. I have read it and so has my husband John, it is an excellent book. There is a reference to the term "elderly" in the book. The book is written by Kate Gilbert from PMR/GCA and Kate also has GCA. amazon.co.uk/Polymyalgia-Rh...
John is also 71, diagnosed with WG (GPA) 14 years ago at the age of 57. He was a dentist of 35 years working for the NHS when diagnosed.
He was coughing up blood, and went down hill very fast. One doctor had an idea that John may have WG. But we had to wait 6 weeks for a proper diagnosis because TB and Sarcoidosis had to be ruled out first. The cultures for the TB seemed to take forever, John was bedridden, unable to move and on oxygen, we thought we were going to lose him. But we knew if they had treated John for the WG immediately and it was found he had TB, then the treatment for the WG would have opened the flood gates for the TB and we would have most certainly lost him. Any type of Vasculitis is difficult to diagnose and to treat. A GP may only come across "any" type of vasculitis maybe once or twice in their working career, a local hospital maybe 3 or 4 times a year.
John has never taken offence at being seen as "elderly" and is given the highest respect when he visits the hospital for appointments and for the odd occasion he has been an in patient. The definition in the dictionary of elderly say "old: bordering on old age". John is also respected by the medical professionals who have an interest in Vasculitis and has been invited to sit on several advisory panels for Vasculitis. He was also part of the panel who were responsible for updating the UK and European guidelines for treating adult ANCA Vasculitis in 2012. He also sits on the EULAR panel, they look at all the evidence and draw up guidelines, as this includes members from the US too, these will be International guidelines. It is a very rigorous process which involves looking at all the available evidence, these guidelines are based entirely on evidence and not opinion. John is attending the next EULAR meeting, representing the patient with Vasculitis, in Zurich at the end of this month.
In April it is the International Vasculitis and ANCA conference and Vasculitis UK are also hosting the Vasculitis Patient Symposium, along with support from other Vasculitis organisations. There will be a break out session devoted mainly to GCA at the Vasculitis patient Symposium in April, these sessions will be attended by some of the best doctors for treating large vessel Vasculitis in the UK and possibly the world.
Kate Gilbert from PMR/GCA is speaking, along side John at the International Vasculitis Medical conference. vasculitis2015.org/index.ph...
In my opinion, if someone shares how he/or she is feeling and if that's a genuine sentimet, it's better to accept his or her feeling as it is. I do not feel someone would have to "defend" how she/he is feeling. No justification would be necessary. Feelings are highly personal, individual and often unique. Not everyone feels the same way as other people would do which makes this world far more unique. Individual feelings are all valid and if it's not hurting anybody (it's not some crazy racist sentiment etc), there's no harm done on anybody. Everyone is entitled to his or her sentiment and that's OK. Maybe, there's some truth in that as well whether other people do not want to admit it. Who knows? Some people are more "sensitive" than others, too..Kind Rgds,
You will probably tell me I'm wrong, but I think you are getting cross about the word 'elderly' and using it as a reason why you think that people with GCA are being misdiagnosed ot not diagnosed at all. I think that it's much more complicated than that, and the word, or concept, isn't the reason for problems with diagnosis. As I understand it, large vessel Vasculitis is probably a continuum of diseases that encompass GCA, Takayasu's, polymyalgia
Oops, finger slipped. And polymyalgia rheumatica (and possibly something that hasn't got a name yet?!) There has been an understanding until recently that GCA is for the over fifties and TAK is for those in their thirties or forties, while PMR seems to range more widely. That idea seems to be breaking down as more cases are diagnosed.
As someone who was diagnosed with Takayasu's when over fifty, I can honestly say that I have never heard the word elderly. Initially there was discussion about TAK or GCA, but that was sorted out when my scans were studied. And I have had the best of treatment with absolutely no reference to my age either.
(Sorry, except for the cardiologist who said tactfully that I probably should have died in my thirties, but obviously didn't so he wasn't going to worry about me now I'd reached such years of discretion)
I think your worries should be directed towards the genuine difficulties in diagnosing this disease, and building up more knowledge in both GP surgeries and hospitals. It took me a long time to be diagnosed, and I am the only case that any of the five GPs in our practice have ever seen. And I don't blame any of them... The range of symptoms I displayed was thoroughly illogical and difficult, but there was still no sign that being over fifty had any bearing on the way I was treated.
Maybe that was the same cardiologist who told my husband (aged 18) his heart murmur could mean he'd drop dead tomorrow - but on the other hand he might live to 90+. Forty five years on we're working on the next 30 years.
BTW - if you click on the 3rd box with the little v in it, it will offer you the option to edit or delete your post. Only works for your own - for others you can report them but nothing else.
The Government has moved from a stance of doctor dominance to patient centred care and for this reason, patients should be listened to. There are some good guidelines about this in several places including the GMC website. Patients are deciding how they wish to be classified, for instance, those with Downs Syndrome do not want to be called 'Mongoloid' and this is their right and I endorse it. Because there is so much confusion, even amongst professionals about GCA, it is very important that clear information is provided for doctors and patients, yet struggling through pulses and blood pressures of the extremities, etc., it does make it difficult for the patient with a burnt out or otherwise affected GP. It would appear that information once disseminated on the internet, (such as the use of the word 'elderly') has being repeated ad infinitum, rather than be examined and changed in the light of more specific, pertinent and accurate age related information.
I think it is scandalous that there are elderly people in care homes who might not even be diagnosed because it is normal for elderly people to have aches and pains and lose their eyesight! If these were assessed, the ratio of patients to doctoring years might be raised.
I don't patronise people and don't like it when others patronise me. Getting one's point across is very difficult. Shining a light on what needs attention is often met with reluctance and sometimes resentment. It requires such a huge amount of work and I only have a small amout of time: "I met a GCA sufferer online who was misdiagnosed and was adamant the word 'elderly' should be changed to 'most frequently over 50' is all that is required. No big deal!
That's too sweeping a statement too. It wasn't until my grandmother went into a care home that her medical problems were diagnosed and treated. Until then she 'hadn't wanted to bother the doctor'. There must be many like her. As she made 99 3/4 they did a good job. Like all these things it depends on the institution and the people running it, and there are both good and inadequate. The local care home that I visit regularly is good, and I would be very surprised if there was anyone there that has been left undiagnosed.
It is so impressive that members posting on this page have such great language skills!
Patients who are expecting a baby who are described as 'elderly' should receive greater attention due to the greater likelihood of possible complications. Alas, patients over the age of 50 who have stiff joints and muscles and headaches can easily be dismissed as having age related complaints and instead of receiving greater attention for necessary assessment, receive less. Unfortunately, some patients in care homes are very neglected and have only rare visits from anyone who might complain about the care (or lack of it).
Tip top! This topic is getting 'popular' billing. many thanks for all your posts!
Some of us over 50 (who are not in the least elderly, by the way), put the aches and pains in joints, the fatigue, and a great deal more besides, down to 'getting older' and the aches due to having worked our bodies hard for the previous 40 years and therefore didn't pay any attention to the assorted symptoms - certainly not worth bothering a GP about. In my case it took 3 emergency admissions with 'septicaemia' for my excellent doctors to notice a pattern. Twice does not make a pattern; 3 times does, and to their credit they noticed, tested for just about everything, and sent me to a specialist pronto.
I agree with all scenarios expressed within respective comments, which seems to come down to individual experiences and interpretation. I was approximately 20 years over the perceived upper age for CSS diagnosis; misdiagnosed possibly over two years even though my GP had come across two CSS cases, albeit about 15 years previous (less was known); I have never been referred to as elderly by the medical profession who, since diagnosis, have been totally committed to my problem (rheumatology, ENT, dermatology and stroke departments - I gave maternity a wide birth!). I was diagnosed following a 999 call, 6 hours in A&E before I was pain free, consultant explained to my wife that if I hadn't been 'fit' at age 68 another two days without treatment would have been very different.
I would not like 'elderly' to be consigned to the waste bin because in my opinion it also fosters compassion from many of us who recognise that someone is less able and, as a consequence, may need help. Like much of the English language today words are used and taken out of context. From a simple word's meaning the issue has become much broader. If the same 'best practices' were adhered to nationally, financed and monitored effectively, there would probably be no need to question the meaning of the word.
My philosophy is that life's too short not to enjoy it, age is just a number, and I'm going kicking and screaming!
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