Permission denied

I have a real problem with some medical staff here in the UK. My problem is they seem to have forgotten that my body is mine and that I have the ultimate say on whether they examine me or not. I think many medical staff have become so caught up in the job that they no longer see the patient as an individual who has autonomy over their body. Permission is not being asked for before intimate examinations are taking place and in my view hundreds if not thousands of patients are being assaulted every day in the UK through medical staff treating a medical examination as something that the patient has to have rather than asking for their permission.


You may think I am over reacting but where else outside of a hospital would you allow someone to touch you intimately or remove your clothing without consent? It simply doesnt happen and if it did the police would class it as at best assault and at worst sexual assault.


It makes me extremely angry that medical staff are routinely ignoring the patients right to say no and either putting pressure on them to consent or carrying out an examination without consent. If you think this doesnt happen I can give you two examples of when it has happened to me whilst in hospital and these are in 1998 and then again in 2014. In my opinion this has got worse not better. Implied consent is not enough and it isn’t under the law also. I dont think it will be long before a member of the medical profession will be prosecuted for assault in this country due to either assuming that a patient has consented because they are there or carrying out an examination / removing clothing without the patients consent.


Obviously in an emergency situation –  the patient is unconscious etc then yes consent does not need to be sought. I dont have a problem with those situations, I have a problem with a fully conscious and alert patient being bullied / coerced into an examination or not actually being given the opportunity to decline the procedure / examination.


In 1998 I had quite a serious operation and was opened up from just below my sternum to my pubic bone. The operation was to remove adhesions that had grown around my bowel and had stuck my intestines to my abdominal wall. I was told by the nurses this was one of the most painful operations you can have and I can assure you it was a 10 out of 10 on the pain scale. I had a morphine pump that I could self administer morphine with and I was allowed to press the button every five minutes. I would lie there watching the clock count down for my next dose because what ever was administered wasn’t enough to take the edge off.


 I was dazed and confused the following morning after the operation and in agony when two health care assistants whipped the curtains around my bed and informed me they were there to give me a wash. I wasn’t asked “would I like a wash?” I wasn’t asked if I wanted two complete strangers to strip me naked, I wasn’t asked if my pain was adequately enough controlled that I could get out of bed without screaming. It was presented as a fait au complet, I had no say in the matter, I was being washed whether I wanted them to or not. I cried and cried begging them to leave me alone, that I wasn’t well enough to stand and be washed. My cries fell on deaf ears, they pulled the sheets back and proceeded to man handle me out of the bed. I cried with the pain and humiliation of it all. The hospital gown was soaked in blood and stuck to the dressing that covered the wound, gentle they were not. It was ripped off me and I was left there standing naked with nothing to preserve my dignity.


I am an intensely private individual when it comes to my body. It probably stems from low self esteem. I always dress modestly, I don’t wear string vests in the summer I wear t-shirts. I don’t really wear shorts outside of my house. When I was younger when I wore short skirts ( as was the fashion then) I wore thick black tights. I just don’t feel comfortable flashing the flesh and can probably count on one hand the number of people who have seen me in a swimming costume. I just don’t whip my body out and display it. I take my hat off to anyone who can flash the flesh but its just not me.


So standing there that morning in the nude in front of two strangers was humiliating. I was vulnerable and helpless and they did nothing to put me at my ease. I had been bullied and coerced into being washed. I could have managed to gently wash myself in bed had I been given the option but options were not offered. My consent was not sought and this is what I am talking about, staff ignoring patients and not treating them appropriately. Where else in life would this situation come about being stripped naked by two strangers against your wishes? Anywhere else this would be seen as a criminal offence yet this regularly goes on in hospitals up and down the UK.


These things shouldn’t be happening but they are, fast forward to April 2014 and I am back in hospital for my octreotide trial. Within 30 minutes my dignity is being challenged when I am informed that I will have to be swabbed for MRSA. I stupidly assumed that this would just be a nasal swab but oh no its a nasal swab, throat swab and perineum swab. Not only do I have to swab my ring piece (well practically) but as privacy and dignity are lost as soon as you enter hospital I have to be observed doing it to ensure I swab properly. How hard is it to rub a long handled cotton bud on your perineum? 


This wasn’t the only issue I encountered whilst in hospital but thats a whole other blog post! 


On the evening of my admission I kicked up a bit of a fuss due to issues with my medication which was being administered at the incorrect doses. After the pain medication issue was sorted out a nurse and a healthcare assistant came into the room whipped the curtains around and without even talking to me started to remove the bed clothes. I sat bolt upright and demanded to know what they thought they were doing. The nurse answered and said “We are checking you for bed sores”. There was no “we need to check you for bedsores is that ok?” or ” is it ok if we check your body for bed sores?” Again it was treated as a fait au complet, which now being older and wiser I knew it wasn’t. I quickly informed them as I had only been on the ward 4 hours and was checked earlier permission was denied. This didn’t stop the nurse who then started tugging at my pajama bottoms to remove them. I jumped back and said ” take your hands off me, continue and I will call the police, what you are doing is assault”. She jumped backwards and said “we have to check you for bedsores”. It didn’t seem to compute with her that I was completely within my rights to refuse this.


She started to give me a long talk about bed sores and why it was important that she check my buttocks, back and heels. When she realised she had failed to persuade me she gave up. A weaker more vulnerable patient wouldn’t have put up a fight. 


The next morning whilst I was chatting to the pharmacist about my medication a health care assistant waltzed into my room and announced she was there to wash me. She didn’t introduce herself or seem concerned that a male member of staff was in the room and perhaps I wouldn’t want to strip off in front of him. My dignity seemed to be the last thing on her mind. When I declined the offer of a bed bath with an audience she didn’t like it. I told her I would be taking a shower and then again I was told she would have to watch me. I joked with the pharmacist that all the staff on the ward were a bunch of perverts. The health care assistant stropped off. I simply waited for her to be distracted by someone’s bell to go off and took a shower without being watched!


I am still incredibly angry that medical staff seem to think their job overrides my dignity and the need for my consent. They need to understand that they have to ask for my consent directly and not assume implied consent because I am in the building. The NHS has produced this document Reference guide to consent for examination or treatment it clearly states “This booklet provides a guide to English law concerning consent to physical 

examination or treatment. This second edition provides an update on legislation 

relating to obtaining valid consent – the Human Tissue Act 2004, the Mental 

Capacity Act 2005 and recent legal cases – and provides references where appropriate.”


It goes on to say “Valid consent 

1. For consent to be valid, it must be given voluntarily by an appropriately informed 

person who has the capacity to consent to the intervention in question (this will 

be the patient or someone with parental responsibility for a patient under the age 

of 18,11 someone authorised to do so under a Lasting Power of Attorney (LPA) or 

someone who has the authority to make treatment decisions as a court appointed 

deputy12). Acquiescence where the person does not know what the intervention entails 

is not ‘consent’. “


If the NHS has this booklet circulating then either the issue of consent has been an issue for them or they are aware that many medical professionals are working under the notion of assumed consent. Whatever the issue it is clear that the education of its staff is not working. Since my experience in 1998 things haven’t changed and thats not in the patients best interest.


I am sorry this is such a long post but it is something that I am very passionate about. Patients are unaware of their right to say no and staff seem to be happy to keep it that way.



Reference guide to consent for examination or treatment


BMJ Paternalism or partnership 


Are women sufficiently well informed to provide valid consent for the cervical smear test?


A fundamental problem of consent


EDS information

As promised every blog post on a Monday throughout May 2014 will be about EDS to raise awareness of the condition or to simply help fellow sufferers. Over the last few weeks I have received a few questions / comments on and  asking for further information regarding the different types of EDS  after people had read

If you think you have Ehlers Danlos Syndrome  / (wordpress blog version of the same post) this has been one of my all time most popular posts and after all this time weekly can receive more views than my new posts combined, so clearly there is a need for this information.

I am not a doctor nor an expert on EDS and I can only provide links to information sources or tell you about my own personal experiences. I have had to reach out to my friends in the EDS community to pool some information together and my eternal thanks must go to Anna who has helped no end putting this post together.

Firstly I wanted to provide a link which explains the different types of EDS. provides a quite easily understood outline of the different types of EDS, their symptoms, how they are tested for and the way that they are inherited. Sometimes I find sites provide too much information for the “beginner”, I get lost as soon as they start talking about genetics my brain just can’t cope with it. This site explains it as simply as possible which is good for when I have those information overload issues!

My blog mainly focuses on my “flavour” of EDS which is hypermobility. I do have friends with Classical EDS but I can only write from my own perspective of how it affects my own health as each type of EDS can present with its own unique symptoms. As I have stated in previous posts EDS is a syndrome so people are affected differently, no two EDS patients are the same. So the blog is very much my own personal story and can not be claimed to represent the whole HEDS / EDS  community.

Having spent a while researching good sites / articles for EDS I came across this piece of advice on  How to prepare for your doctors appointment . This takes you through step by step on preparing a medical history  and how to approach the subject with your doctor. Many doctors seem to be working under the impression that EDS is extremely rare – it’s not that rare its just under diagnosed and that all cases of EDS are picked up in childhood ( again not true!). Having lurked on forums and from my own personal experience many of us are diagnosed in our 30’s and 40’s (my dad was diagnosed after me at the age of 61!) after years of being fobbed off and being told that we are suffering with anxiety, somatisation disorder or are just reading too much on the internet.

I think a lot of the problem in the UK is that health professionals work in isolation. As a child had my dentist and doctor spoken to each other red flags would have been raised (as I showed clear dental signs of EDS and my constant complaints of leg pain to my GP),  they may have seen the bigger picture. By the health care professionals working in isolation it meant I spent many years thinking it was my unique problem and there was no name for it.

I have found this link thanks to Anna EDS information it is the most comprehensive journal article that I have ever found and if you believe you suffer from EDS or have the EDS diagnosis I sincerely recommend that you print this article out (perhaps lose all the references as its 23 pages long in total!) and keep it, to shove under the noses of any doctors that you come across. I have had my diagnosis since 2011 but I have found information out that I had no clue related to EDS! It is an absolute gem of an article and one that I will read and reread because each time I do something else pops out at me!

I  have never done this before with any blog post but this post is being dedicated to Skye in Australia who was the inspiration behind this post and told me her story. Her questions also pointed to the need for my blog to contain more information about EDS that would be useful to those searching for a diagnosis and those already diagnosed.

EDS is a multi-system syndrome and needs to be treated as such rather than just being seen as flexible joints and pain! Our doctors need to be educated about it and so do we, otherwise how can we be our own health advocates?