Palliative Nurse, False information;

My husband was in hospital due to awful right side pain, turned out the sclc has spread to liver & tummy nodes. His pain relief was under control and he was waiting for chemo to start again. On Wednesday 15th March a student nurse took his temperature, the thermometre had a broken part on the front of it, so his temperature read low, instead of getting a replacement and taking his temperature again this is what happen. In came the palliative nurse to my husband side room, she told us that he wouldn't be starting chemo due to the fact that his body was shutting down. Of course we were both extremely upset, at the time my husband was sitting in chair looking shocked. I left room as I didn't want my husband to see my tears. Palliative nurse took me to a side room, she told me my husband had 3 days to live and if family and friends want to visit they would have to do it today or asap. So I contacted friends and some of my husbands family, as my family live to far away. I just broke down. After pulling myself together I returned to my husband and he said what did she tell you, so I told him what she had said. Bless him, he said I'm not dying , why didn't they retake my temperature again, I did ask but it went on deaf ears, Palliative nurse had told everyone my husband was dying. Our friends & family came to see my husband , they all said he looks so well, as my husband was sitting in chair chatting away. They found me a lounger to sleep on as they said I could stay night as he will be deteriorating fast during the night. Well during night my husband was walking to and fro from toilet several times, my husband complained to the night Sister that the thermometre was faulty as it gave incorrect reading. We both couldn't sleep. The next day in comes Palliative nurse, she was waving her arms about saying, yeah I knew you would make it. Well we just looked at each other, to shocked to say anything. I have NO FAITH in her now. She never said sorry for putting us through unnecessary worry & stress plus our family & friends to. When oncologist walked in he ask my husband how he felt today, he said well after being told by Sarah (palliative nurse) that I had 3 days to live yesterday, he said I feel really well , at that point she walked out of room. We told him what happened then, he said he will look into it, as she should never of said that to us. My husband has had his first dose of chemo that day and released from hospital to. For a few days I was in shock, Just couldn't stop shaking. I know my husband may not have long maybe 6 months. I just pray we don't see her again. I don't know who to believe anymore.

[Cellophane]

Dreadful business. I can completely understand! From my experience most of the time the thermometer doesn't come into contact with its target. I have a theory that they try to get the reading as low s possible, so many times my own thermometer read 38 ish but when they took it more often than not it came out below 37.5 so they dont have to report it, which saves everyone a lot of extra work . The blood pressure machines rarely worked. The docs read these charts and act upon them so it is dangerous. So sorry you both had to go through, that, what a nightmare.

[Fifi24 in reply to Cellophane]

My husband had been in for 2 weeks, within a few days I knew the thermometer was not reading right, so I taken my own in.

He had a temp

If 39.4, they got a reading of 37.9...

My husband said his vision was blurry... his head was pounding... he looked dreadful... the nurse offered oral paracetamol... I put my foot down and said he needs iv paracetamol, he needs to see a dr now.

my husband does not feel right.

So the nurse called the dr I recorded all the temperatures I got, as well as what they got.

It's dangerous, despite I have risen it a few times... it's still on going.

The following week my husband was in theatres having a none invasive stent into his bronchus.

4 hours later he arrives on the ward, theatres could not get him temperature up, this is why he could not leave the theatres, he then requested a war thermometer which read a better reading, they then let him back to the ward.

It's ridiculous, how can they let this carry on...

My worry is if a patient is septic... he or she will be really sick before something gets done.

[Brogan-12]

That is shocking this illness. Is dreadfull enough. My boyfteind has sclc and i have lost trust in the health system i find your left to your own devises. And to be honest ithink we no best those. Words are the worst. Thing mostpeople want to heer people should live in hope until therelast breath thats my oppinion but theres always one who carnt say them words to you quick enough dreadfull hope your husband stays well god bless. Xx

[Ry8tes]

Betty, this post has really worried me. Are you able to say which part of the country this happened in? I know that when I have had a number of tests done, even blood pressure, they have tried the other arm then gave it a rest and retried. I thought that this was to give me as best possible chance as they could to get the treatment. I never considered that, as some other poster has said, it could be to save less paperwork through not having to report it. I will be watching more carefully next time. Thank you for letting us know.

[Hidden in reply to Ry8tes]

Hi Ry8tes, It happened at Airedale Hospital , North Yorkshire UK. Don't have much faith with the cancer unit there. Blessings xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello betty444,

I am sorry to hear that your husband has had this bad experience with the palliative care nurse, when you are in hospital it is important to have confidence in the team which is responsible for your care and to feel that they are listening to any concerns that you may have.

The patient advice liaison service ( PALs ) can be approached regarding any concerns that you have in the care that your husband has been receiving during his treatment in hospital, I have added a link below on the service they provide and it gives you information on how to contact them.

nhs.uk/chq/Pages/1082.aspx?...

If you wish to discuss anything you can call our free nurse led helpline on 0800 358 7200

Kind regards

The Roy Castle Support Team

[GlynnBar8 in reply to RoyCastleHelpline]

Hello Roy Castle Team,

I have read your response and you have you have brought to light something that is so important, which I didn't think about, the importance in having confidence in your team. This is missing in my case as I have been seen by three different hospitals, not all at my request, but to try and ensure I was seeing the specialist with the right experience. My last move was to get me seen at a hospital where I could travel to easier. I've read a few posts now and would like to ask a question if I may, base on having read some posts.

I had a clear CT scan in March 2016 after 18 months or so of non specific symptoms, fatigue, weight loss and so on. At the time this ruled out any suspicion of lung cancer. At the end of 2016 I was diagnosed with small cell lung cancer. I keep wondering how likely all my symptoms, for well over two years, could have indeed been related to the small cell, even with a negative CT in March 2016?

As I say I have not had time to build any relationship with my care team, so was wondering if it could be something you could answer, based on your experience. I have looked online and sway between it would be so unlikely to reading other peoples experiences and think it could be likely. It would be good just to find out from someone who has been experienced in lung cancer if this is something that comes up in daily practice. Reading the internet is not a great idea to form an opinion.

Thanks

Glynn

[Lainey3615]

Betty

First of all so sorry to read that you and your husband have been treated so badly by someone who obviously should be rethinking her career. I would strongly urge you to make an official complaint to the CEO of the Hospital as you and your husband deserve answers. Secondly you can request a new Palliative Care Nurse and thirdly never give up hope for your husband, he could have years in him yet. I send you both huge hugs, strength and love xxxx