Never before have I been as disappointed with our NHS 😢
Disappointed: Never before have I been... - The Roy Castle Lu...
Disappointed
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Oursez
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30 Replies
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Why are you disappointed?
Oh where do I start . My brother has been in hospital for the last 4 weeks . He was diagnosed (after being admitted with Pneumonia) with lung cancer but treatment was delayed until an infection following the pneumonia had cleared. In all this time he has not eaten and the hospital don't seem to care. The man in the next bed is tube fed and I asked why my brother couldn't be fed this way to be told my brother doesn't want to eat 😢. He is now so frail and in so much pain yet he was in a ward where staff congregate to discuss their nights out, clothes and other non work related things. They shout and laugh while sick patients are trying to rest. Yesterday he was moved to a care home and we thought he might get more rest there but a guy with a summer frame is constantly walking in his room 😫. He was in so much pain yesterday and could not breath so he pressed his alarm...it took ages for someone to come to his aid as only one nurse working who did not know what to do so called a doctor who suggested upping his pain relief !!!
I'm heartbroken 😢
Sounds like a nightmare. Can you get the local Mac Millan Nurses or Palliative Care Consultant involved? They will be able to support your brother and your family and manage his symptoms. You could do this via his GP
Thinking of you xx
So sorry for your situation. I hate to say it but it sounds if the US goes to.universal healthcare we will be in same position as you folks in the UK.
Why?
Oh where do I start . My brother has been in hospital for the last 4 weeks . He was diagnosed (after being admitted with Pneumonia) with lung cancer but treatment was delayed until an infection following the pneumonia had cleared. In all this time he has not eaten and the hospital don't seem to care. The man in the next bed is tube fed and I asked why my brother couldn't be fed this way to be told my brother doesn't want to eat 😢. He is now so frail and in so much pain yet he was in a ward where staff congregate to discuss their nights out, clothes and other non work related things. They shout and laugh while sick patients are trying to rest. Yesterday he was moved to a care home and we thought he might get more rest there but a guy with a summer frame is constantly walking in his room 😫. He was in so much pain yesterday and could not breath so he pressed his alarm...it took ages for someone to come to his aid as only one nurse working who did not know what to do so called a doctor who suggested upping his pain relief !
I'm heartbroken 😢
Hi. I am so sorry to hear what you and your brother are going through although I hate to say that I am not surprised. I was rushed to our local Hospital with pneumonia 2 year's ago and was diagnosed with lung cancer. Adenocarcinoma in the right lung but the hospital had had the tumour on the Xray for 2 year's previously but hadn't told anybody so I had been walking around with lung cancer for all that time with no treatment. I had been ill for almost a year previously and was back and fore to hospital where they kept scanning my stomach when I was complaining of pain under my ribs. 2 Consultant's treated me as though I was a Hypochondriac while they had the tumour on a scan which was on their record's but they omitted to tell my G.P. who had battled for me to see another Consultant but they blocked that request. One in particular treated me with such arrogance and no compassion even though I had lost almost 3 stone in weight. Sorry! I'm still angry despite my Thoracic Consultant sending me to another hospital to have a Lobectomy.
So, there are good and bad medic's but unfortunately, when they are bad they are putting our lives at risk. I would love to have a meeting of patient's and hospital staff and point out to them that we know our own bodies and we know when something is wrong and what gives them the right to treat us as though we are complete idiot's!
I am SO sorry your brother is going through this with nobody listening to him and no wonder you are heartbroken watching this. My parent's went through awful treatment before they died so I do understand how you are feeling. Unfortunately you will have to be his voice and put in a complaint and speak to somebody at the top about what is happening. I don't understand what has happened to compassion. I will be thinking of you both but please speak up and it doesn't have to be with shouting because quiet, calm and factual is better or so I found and it's also good to write everything down.
Good luck and let off steam here if you need to because it's not just the person who has cancer who needs support but the people who love us and feel helpless who also need to be supported.
All the best to you both.
Danni
Thank you so much for your kind support..I am sorry to hear what you have been through and truly hope you are getting all the help and treatment you need.
We cannot understand why he has not been offered a place in a hospice where he would get all the help and medication he needs.
Here at the care home it's not the staff at fault as they do all they can but there's no doctor on hand and over the weekend they tell us the doctors are not available until Monday!
We are not giving up as have spoke to the palliative care nurse about our frustration ...so fingers crossed.
Hi Oursez. I hope that your brother's situation is better today and that you have managed to get some rest. I looked after a good friend who eventually passed in our hospice and the Staff there were incredible. I agree with the Administrator that there are some wonderful NHS Staff who are truly dedicated and after 4 year's I had my wonderful Thoracic Consultant and the majority of the Nursing Staff in the 2nd hospital were lovely. I think they are overwhelmed and for me the problem was with some of the arrogant, patronising Consultant's who have such power over our treatment and don't listen to patient's or families.
The Administrator's here are really good to talk to and the Macmillan Nurses are there with you and are amazing and they support your brother and you. I rang them a few times and they were so calm and supportive and they will give you practical help as well as emotional support. Please phone them because this is such a hard time for your brother but also for you and other member's of your family.
Please know that people are thinking of you both and I so hope that you get the help and support you need. There are also leaflet's in hospital or your Dr's Surgery with all of the phone number's which you need but please remember to look after you as well and if you need to vent this is a good place to do it! Very best wishes to you both.
Thank you . We have spoken to our village doctor and also the pallative care team...both promised help but as yet is non forthcoming. We ensure someone is with my brother at all times during the day but it is now when he is alone in a room with no help around him when we worry. His pain relief is given most of the time when he is in pain and not periodically. Yet on 2 occasions he was woken in the early hours to be given an injection!! The nurse who works there most of the time is so uncaring and abrupt if we ask her anything ....it should not be like this 😢
This is so similar to what happened with my mum. 'Pneumonia' in March suddenly became lung cancer in October... they waited until she'd been turned away by the GP with unexplained back pain three times and coughed up blood then they basically looked at the exact same scan from 6 months previously and said the shadowing was cancer. I just can't understand why they don't take the opposite tack and screen for cancer from the outset in patients of a certain age. My mum never smoked but even so, she's 74 and they could've reasonably assumed she was at risk. Many never-smokers get lung cancer alas. It would save the NHS so much money in the long term, early diagnosis. Nuts.
Hi. I am so sorry to hear about your Mum. How is she now and did her treatment get any better? Did you get any support? I have spoken to a few people here who have been in similar situations and have had delayed treatment because the G.P. s or Consultant's didn't believe them. It makes me so angry because the 2 worst Consultant's made out that I was a hypochondriac and they kept looking at the large bowel despite the fact that I kept saying that the pain was on my right side but under my rib's and eventually a Gastroenterologist sent me for an Xray which included my right lung and that showed the tumour but they didn't even tell my G.P. and so 2 year's later and only because of the pneumonia did the Thoracic Consultant find my tumour again and looked back through my record's and found the first Xray and was horrified that nothing had been done. I have now been left with multiple problems and all because arrogant Consultant's didn't believe me and wouldn't listen to me.
Sorry to rant on but please, anybody out there who is going through the same thing, keep fighting to be heard and for anybody who has a loved one with cancer and is not being listened to, then please fight for them. There are some amazing medical people who will help so don't give up. I found that cancer tiredness was so exhausting and different to anything else I had ever known which is why, I think, cancer patient's need a lot of support from relation's, friend's, partner's but this site is wonderful to point you in the right direction.
I want to try to do something to get Consultant's to listen to their patient's more and listen with their ear's and brain's open! While I know these people are academically intelligent they need to have empathy.
I hope you are coping all right. If you need to offload then we are here for you but please ask for help and advice from the Administrator's here or from Macmillan and I really hope that you look after yourself as well. Please let us know how thing's are if you want to and good luck.
Thank you so much. Same to you - I wish you all the best. Quick question - did your cancer tiredness ever get better?
After I recovered from the Lobectomy which took 5 or 6 months, the tiredness was a bit better but it's come back and it's that same weird tiredness. Sorry! I have met other people who have had a Lobectomy and for now, they are cancer free and they say that they have more of their energy back though not 100%. Everybody being different I suppose.
Take care and be good to yourself.
So sorry to hear this about your mum. I don't understand either 😢. People's lives matter!
Meant to say Zimmer frame
No, it shouldn't be like that. I don't know why some people become Nurses but there are good one's. My story is too long but when I was in hospital having the top lobe of my lung removed, I had an allergic reaction to one of the pill's which they gave me and 2 of the Nurses didn't believe me and turned their backs on me and walked away. I had sent my husband off to get some food when this happened but he had been holding me up for almost 4 hour's because my muscle's were jerking and when he found out what had happened, he spoke to them but they still didn't believe me until the Night shift came on, they got the Pharmacist and he got me some pills to counteract the allergic reaction and within 10 minutes I could lie down....absolutely exhausted and in so much pain. This happened 2 days after the Lobectomy!
Keep fighting but try to keep it calm and I know how difficult that is but the situation could get worse if you start shouting! I feel for you both so much and wish that I could help but please look after your own health. I will send up prayers for you both. I don't know whether you believe in the power of prayer, I just know that it helped me through!
Please, please phone Macmillan and get some support for yourself.
All the very best to you and your brother,
Danni
RoyCastleHelplinePartnerAsk the NurseRoy Castle
Dear Oursez
So very sorry to hear of the experience that both your brother and yourself has had in the hospital and the care home. It is a time when everyone needs that bit extra compassion and care.
Perhaps consider discussing with the nurse in charge or ask to speak to the Consultant about your brothers care. A few things you could do is request that he be moved to a hospice, contact the Macmillan team in his local Hospital or even discuss with your brothers GP.
Do not suffer in silence or think this is all the NHS can offer, there are wonderful care providers around who provide excellent care to both the patient and their family.
If you would like to discuss anything, or find out who you can contact next, you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200
Kind regards
The Roy Castle Support Team
Thank you for your reply.
We have raised our concerns to the pallative care team and are awaiting a response.
Thank you for your support.
We have spoken to the pallative care team and are waiting a response.
Thank you. We have asked about a hospice and have had no reply. We have also raised concerns about the care he is getting and no one seems to care 😢
Dear Oursez
Sorry to hear you are not getting any satisfactory response to your concerns and have sent you a private message.
Kind regards
The Roy Castle Support Team
RoyCastleHelplinePartnerAsk the NurseRoy Castle
That is good to hear, hope you hear from them soon.
The Roy Castle Support Team
