hi had biopsy today and recovered well from anaesthetic 👏 but somewhat miffed as just looked at discharge letter when got home and says escalation plans and DNACPR- full escalation.
I wonder if anyone can shed light please as figure I know what it means but there was no discussion
thankyou
OMD Stiff I could not like your post because it is just awful. Firstly I am so pleased that you recovered well from the biopsy lovely. However I do think that when you feel well enough you need to address this with your consultant I am so very sorry. Huge hugs xxx
Thankyou Cecily I feel pretty good actually but this knocked me a bit , im trying to read up on it now but it was not mentioned I was asked about any objection to a blood transfusion if needed and explained I had initial concerns with anaesthetic due to undiagnosed and breathing and hhr problems but this was not mentioned and I dont know if it was in place for today or is to be discussed in future after results of biopsy but just in shock a bit I think. I do wish they wouldn't come round when still a bit groggy as I was shown some pictures but really dont remember what was said other than that they will be in touch after biopsy results🤷♀️, but Im more worried about this than any results now 🤷♀️. In my quick search just now I was a tad concerned to read that in the past couple of weeks there has been a rise in this with chronically ill people 🤷♀️but I know you cant take to heart everything on the internet but it was on a HU forum 🤷♀️. Oh well nothing I can do tonight but thought id pose the question and thankyou for answering Cecily, I hope you are doing ok 🤗🤗
I am glad that you made that good recovery. I am going to send you a link regarding the DNACPR .
Pls do read it up carefully. As it will need to be taken into consideration.
Thankyou for the reply 🙏
I am not surprised you feel shocked who wouldn’t be? It makes me so angry that things not ever discussed appear in our notes as fact. I recently had a gynaecology appointment I had waited 10 months for. In the letter that followed it said we discussed in depth my depression and anxiety ?? It was never mentioned. I have nit been on antidepressants for 14 months and never been treated for anxiety? Lies, thankfully I had my carer with me so when I feel better I will challenge it. The next letter was from the pain management team saying given the referral from the gynaecologist I was not eligible for their service or the pain blockers.
Take your time and then challenge them lovely. They cannot do this sort of huge decision making without consultation and discussion xx
Yes thanks I shouldn't be shocked as well my journey shows much, hence my having had to address (still waiting.) I will look into it , I just feel the nhs is changing and we are not kept informed, be it something or nothing 🤷♀️ I will address it though for certain, yet again a need for knowledge but its tiring .
I understand Cecily my family asks who my letters are about when I receive them they are that bad 😩🙏. Stay strong and alert and take good care 🤗xx
You too lovely xxx
nhs.uk/conditions/do-not-at...
This is the link have a good read it is very long .
Thankyou I will read it now 🤗
Stiff, I would first contact your GP, to see if they know anything about how it got added.
Then use the Compliants section at the end to follow up.
Although there may be other routes, eg the Integrated Care Board
nhs.uk/nhs-services/find-yo...
I think it is something many of us will now be checking on.
In my GP record I used to be able to see a log of what was viewed and when. It helped me see what was going on, after each GP referral and when I might get appointments, but access stopped.
Even when I was just having a CT scan I saw that hospital was checking on DNR status.
Unfortunately it is not information I can see, but know it must be there and that hospital is always checking it.
I wish they took as much interest in other things like just giving us proper care.
It’s just worrying that it can stay in place wether you agree or not 🤷♀️
I think it something that can continually change.
I think we should only do business with those we trust.
Whether it is GP or hospital once you have found out who it is you could change GP or hospital you go to if needed.
Yes from beginning of journey combined I have no help and no trust from either , well the departments dealt with. I’m glad my ophthalmology is another hospital though I will have to check the link with local hospital but 🤷♀️ thanks to optician have an appointment next month instead of 50 week waiting list with rheumy referral and wrong reasons 🙃xx
This charity has a helpdesk.
I have thought of contacting them recently. Although it is about medical accidents, this may be something that they might know a lot about. avma.org.uk/
Great news about seeing an ophthalmologist next month 💖
Thankyou megs yes its an appointment I will be glad to have hoping they can shed some light 🙏👍🤗xx
Hiya
I’m totally shocked you’ve been given a DNR - and without any discussion 😡😡😡. They haven’t even acknowledged that you have health issues, so how can they give a DNR!! Unbelievable 😤😤😤
The health care in your area is truly awful 🤬🤬🤬
Moving on, I suggest you ask those involved in your care to explain IN DETAIL your diagnosis and why this should cause a DNR.
I’m soooo sorry you’re going through this. Sending hugs 🤗🤗🤗🤗🤗🤗🤗
Thankyou yes its all a bit concerning as you say when I dont even have a unifying diagnosis and was shocked to read it on discharge notes to say the least 🤷♀️ I will let my advocate know and see what she says but im at a loss and feel like im being kicked when im down ,but will for sure have to find out about it , 🤗xx
My thoughts are with you. Do ask for a full discussion on this with those involved. You have every right to ask them to justify this and to have been involved in decision making. No wonder you are shocked. Can you speak to your GP / specialist nurse tomorrow? x
yes I just wish things were explained they might do me a favour putting it in place as I have diminished trust but this not explained goes nowhere to help. I just feel there’s no involvement with my own body or not enough , I can’t even get a diagnosis for 6 years soo this just saddened me further 🤷♀️ . Gp is a no go but perhaps I can ask when biopsy results come back and any further appojntment. I’m convinced I have derma myositis helped by steroids so will need a specialist in this and looking past bloods and go for private consult. It’s fitting very well and if not maybe an alternative, but in my gut I think it is .🙏 Thankyou x
Hi nice to meet you
Glad you got biopsy done
Hope your not to sore
So that means you agreed to
Not being rescuitated
In instance of cardiac arrest,or stopping breathing
Or that they want you to agree to one
My parents had that but only when elderly with serious life threatening conditions.
Bless you I'd speak to you GP about this.
hi nice to meet you too , I agreed to no such thing I can assure you and if this is some kind of mistake or error on their part its appalling and none of my family were there or able to say anything on this subject and certainly wouldn't have agreed to it anyway as im undiagnosed presently with ununifying symptoms except fibro. I wont agree either unless they tell me why they think it should be in place if as you say they want me to agree to it. Yes I need to speak to someone about it. thankyou 🙏
HiSo sorry hear this
That's not acceptable,you will have to complain have it removed you didn't sign or agree.
Bless you they often make mistakes on discharge letters did on mine.
ive realised reading the replies ive had (thankyou all) that it may or may not mean I will get the help if needed. I am only certain of the fact that I have not been spoken to about it. If it means I will be helped if needed all well and good but in my minds eye (though I may be ignorant) I just assumed that I would be and so maybe I shouldn't be so presumptuous. cd6728 replied saying it meant I would be helped (thank goodness) which just leaves me thinking something like this on a discharge letter should be explained so you know what it is and to avoid such worry. Of course I will need to find someone to speak to about it. When my health authority have already left me with no trust this just adds to the dilemma im in and a bit scared though somewhat reassured by being told it means I would get help saying full escalation. I just think we all deserve to be aware and explained to especially on what's written and handed to us, and that goes for everything. It's surely only natural to want to understand what's written down and passed to us🤷♀️when it concerns us our bodies and lives as we only have one. For far extending reasons I was initially mortified to see this and is certainly something I will need to have clarified by those involved and something I could do without worrying about on top of everything else to be honest.
Thankyou 🙏
Hi stiff19,
Sorry to hear this but the medical team have acted ignorantly, illegally, unacceptably and abhorrently!
Let me clarify!? The DNACPR means DO NOT ATTEMPT CARDIO-PULMONARY RESUSCITATION!
This document AFTER a full face to face consultation and negotiation with your GP/consultant has to be signed (by patient) and witnessed otherwise it’s invalid.
I would make a formal complaint to the hospital trust and/or GP. Patients should NOT be treated like this!
Totally out of order!
Best wishes,
❤️
Suvi
Thankyou yes thats my understanding what it means after reading it and looking it up but I cant understand why it is there. I had to look it up so obviously no discussions or anything of the sort.As for my gp I have not even seen for ages , and ive signed nothing.
Thankyou 🙏
I’m hearing this more and more that people aren’t having any discussion regarding DNA decisions. I don’t know what to say but I guess you could raise your concerns with PALS, the details should be available on your hospital website. Also make your wishes known with your GP as then there’s a record on your medical records. I would do the same with every consultant you see over the coming months. Particularly as medical records often aren’t shared between community based health care and the acute sector (mainly due to incompatible computer systems). Of course I don’t know which Health Authority you’re in, so I could be wrong on that but personally I would cover all bases so the message is loud and clear and led by you, the patient. You have rights!! Most of all I’m sorry that this has happened to you.
Doesn't full escalation mean to do recessitation? You don't want those measures taken? It was for a skin biopsy? Maybe it is on your file to discuss with you (,once they determine what you may or may not have), and discuss it with you should you ever have to face this scenario? I think that is the downside to reading medical files - it may not mean what you google. Speak with your specialist first to see what that means. Legally, I don't think they can just decide for you. I have been to many operations and minor procedures and have been asked to sign one just in case. Doesn't mean it will be used but is nice for them to know where you stand. No way can they just decide for you.
I have had many thoughtful replies but until I speak to someone concerning this I have no idea why it is there. I HAVE NOT read medical notes at all it was given to me on my discharge papers therefore not something I shouldn't have seen or why was it given to me.No it wasn't a skin biopsy and I wasn't asked to sign one. It is not where I stand I haven't had any reason knowingly apart from suffering high heart rate to enter such a discussion and no one to enter it with so no I dont want it decided for me and certainly without any discussion. I will make my own decision if ever asked and no it shouldn't be made for me and without my knowledge.
thankyou
Hi stiff19
I suggest you speak with GP (or any Dr) & discuss having a RESPECT form put it place.
It something we are all entitled to. (I’m a retired Paramedic)
resus.org.uk/respect/respec...
Best wishes 🌼
thankyou 🙏
Hi,Just to clarify-
On discharge summaries, it is a generic form for all types of discharges (including post procedure stays, emergency admissions and long term inpatient stays). It is also a generic tick box form when completing it and all sections need to be completed to finish the form. You may have other sections on that form including social care involvement and care home considerations, which may not be relevant to you, but still need to be recorded as it's generic.
The DNACPR and escalation section is mainly for patients with complex needs when the medical staff have had a discussion with patients and their carers / loved ones about resuscitation options and ceiling of care (whether patients would be able to benefit or want cpr or ventilation on ICU, or comfort measures only etc).
The fact that yours says FULL ESCALATION means that YOU ARE FOR CPR AND ALL MEASURES to keep you alive / save your life should you need it in community /medical settings like hospitals. It often not discussed that you are for CPR and ICU admissions etc as it is presumed that you will want this and you are likely to survive a cardiac arrest/serious medical episode affecting your life/a life threatening condition.
However, if this is not something you want or you would like further discussion to clarify your stance, I agree with Turquoise-1 that you can research yourself and speak to your medical team or GP about your wishes going forward.
Take care
Thankyou for the reply . I guess it seems just an area that needs clarifying with each individual. It's been a long time since ive needed discharge notes and this was the only part I didnt understand hence my post. So that is a relief if you say that I am for cpr and all measures with it saying full escalation and eases my mind somewhat. If the case though and it is noted on a discharge summary for patient then as the patient I would think it should be explained so that its understood what it is and why its there , you say its often not discussed but maybe it should be the same as I WAS asked to state that did I agree to or oppose a blood transfusion should I need one. I understood that when being asked but to just read DNACPR on paperwork handed to me with no explanation it is no wonder I think that I should worry and wonder its meaning. I am pleased you said it is presumed that I would want this rather than not but then I presumed that it is just natural that if under hospital care did I run into trouble that everything would be done to help save my life unless I had otherwise stated ,(and surely this would have involved a discussion) and given the medical team and gp I have that have not been as a patient could expect then I would not be speaking to them about this .
It has opened my eyes to a wider situation, how broad the medical system is, despite the ununifying diagnosis then this, and how important it is for us to take more care of our side of things which sadly so many of us are unaware of.I have never heard of this and it is quite shocking to be honest, for reason stated .
explanations make life easier if only nhs (at least in my area or experience) did this. Of course I still need to clarify things but im grateful for your somewhat reassuring reply that it means I am for cpr and other measures. Before going for procedure warranting the discharge summary I half joked that I wouldn't be cared for with my family as I have been let down by medical team (not related to procedure) and felt unsafe (hence half joking) and to then read this on notes was shocked (with no understanding of it).I hope this is the case and that my concerns are limited .
I appreciate your reply 🙏 thankyou
Full Escalation – It is anticipated that the patient could make a full recovery and all treatments including ITU referral and CPR should be considered.
thankyou very much 🙏🙏
What does DNACPR mean?
Do Not Attempt Cadio Pulmonary Resuscittion - (DNACPR) .
Hi Stiff
I'm glad that you're recovering from the biopsy and after reading the links that others have shared I think you need to contact the Consultant. Maybe phone their secretary and ask if he can ring you to clarify why thats on your discharge papers.
I'm terrible after I have anaesthetics and I have it written on my notes if they need to discuss anything with me whilst in recovery then one of my daughters have to be present.
I hope you can get this sorted. Take care
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