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Old 12-01-2008, 01:49 PM
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OBL has terminal Lung Cancer T4, 0N, 0M NSLC squamous cell inoperable
OBL has intolerance to certain antibiotics
OBL has high blood clotting factor
OBL has undergone palliative chemo therapy
OBL has a chest infection requiring antibiotics
OBL is partially deaf


OBL became increasing breathless on Thursday at 1pm; I could not get an emergency appointment for him until 5.10pm that evening. He was seen by a locum GP, careful as she was, she did suggest that he goes to the local A & E for a chest x-ray and review.

OBL declines ambulance transport. Locum GP suggests probably pneumonia to us and maybe his lung has collapsed again.

We present ourselves at A & E, they are expecting us, but we have to wait an hour before being ushered through, during this time, OBL is increasingly breathless.

They do a 12 lead ECG, which shows he is tachycardic (this is new). He has regular 12 Lead ECGís done at the hospital where is being treated, the last one done 27 December 2007 for his cancer and every time his pronounced fit with a strong heart.

They take arterial bloods, these come back fine, and so they are waiting on the blood clotting factor tests. I tell them he has a high blood clotting factor and have all the blood test results taken over the last 12 months to show them, they are not interested. Bear in mind these blood test are done by their lab. Of course back they come, high blood clotting factor, so the chest x-ray is clear and even better than the last time OBL had an episode of breathlessness and high temperatures, caused by the antibiotic he was at the time for a chest infection. They do not read his records.

SHO comes to the conclusion as there is no pneumonia, it could be a pulmonary embolism and possible heart problems. Really? We have to start heart medication and anticoagulant therapy to thin the blood and you have to be admitted. They also want an overnight heart tracing done. This is where the fun starts.

OBL does not trust them, because they are only relaying their findings to the consultant over the phone and he recommends admittance. The only place MAU. This ward, smells of faeces and is the place they put everyone to be assessed. It is an open ward, they are mixed sex bays, the toilets are dirty and it is noisy and there is no privacy and dignity. We state that we are prepared to pay to go onto Mulberry if this has to be done. there are no beds on Mulberry.

Other factor in our request it is established OBL has a chest infection and could be exposed to further infection, Norovirus is rampant at the moment and they have closed wards to keep this virus isolated.

The bed manager comes and has a talk to OBL regarding his concerns going on to MAU and says there is a side room and he will put in there. FINE. 10pm, A & E four hour targets are not breached

His nurse comes along about half an hour later, why is he in isolation? She obviously hasnít listened or checked his notes.

She has a very heavy accent and is quietly spoken; OBL cannot understand a word she says.

Oh a junior doctor sticks his head in door and says, someone has already seen, and disappears. No questions, no nothing. OBL makes the remark that it is League of Nations

She takes his observations and leaves. Around 11pm she appears with another nurse and prepares to give the anticoagulant. Hang on a minute; what is it and what are the risks? She shrugs and says she will get the doctor. Young junior bounces into the room and announces that it has been prescribed to thing the blood, I look at him in wonderment. Really??? What is it, oh I am too junior I will have to get the Registrar. Half an hour [asses and the registrar appears, slightly put out that a patient wants some information regarding a prescribed drug, his words are the benefits outweigh the risk, I ask what are the risks, he says bleeding, I remark that his reply is not good enough and he gets defensive, he states it is the best and again says the benefits outweigh the risks, OBL is told he can have it or leave it. OBL reluctantly says he will have it but he is not happy. I am extremely worried, because I still believe they are treating him for something which is not been diagnosed. People will say, well it is better to safe than sorry. No, this is not safety and it could lead to sorrow. I need to go to the bathroom, is smelled of stale urine and needed to clean the seat before using it.

There is no evidence of the heart trace being commenced. I leave the hospital after midnight.

I get back there at 7am, with food and clean clothing and toiletries. OBL was not given a gown to sleep in, He slept in his underwear.

He was looking distressed and I thought what the hell. I asked him had they done the cardiac trace, he said nothing, apart from the antibiotic and the injection and he spent the night coughing. I said did they give any ora-morph, he replied no. The nurse had done her obs at 5.20pm Please note the times here, as this is a patient with suspected DVT and has cancer with a chest infection.

I find the nurse and ask for the ora-morph to help relieve the coughing. OBL has gone without carbosistene now for nearly 10 hours. The nurse replies she did not know he needed ora-morph to relieve the coughing, to which I replied, itís in his notes, she then states, I donít have time to reads the patientís notes and if I did I would not get my work done, you can see how many patients I have to look after. OBL gets his ora-morph at 7.20am, the coughing ceases. Still no sign of the carbosistene which he needs to bring the mucus up.

The day nurse comes in and gives him the antibiotic.

9am breakfast is served, or should say, head around the door and OBL is asked does he want, cornflakes, ricies and some other cereal with bread and butter and jam. Excuse me he has a gluten and lactose free diet. Oh I will get some gluten free bread from the kitchen. No, we donít eat bread, so in comes a bowl of cornflakes sloshed with MILK. We just look at each other. Since when are cornflakes gluten free? Isnít milk lactose?
Good thing I brought fruit and juice from home with me.

At no time did anyone come an inquire about dietary requirements Ė this is one size fits all. No wonder patients are leaving hospital malnourished and relatives have to bring food in for them.

10.30am and the consultant arrives with his entourage. He and I know each other professionally. He agrees, there is no trace of tachycardia and breathing is no longer laboured and just to make doubly sure he will get that CT scan organised to rule out the PE. He also stated that sometimes infection will cause tachycardia and it settles and it is obvious the breathlessness also has to do with the infection and as OBLís pulse is no longer erratic, he goes with what I originally suggested. I was worried that his lung had collapsed and that the infection had turned to pneumonia. The x-rays ruled that out

Charge nurse bounces in and announces she moving him on to open ward, because she has an infectious patient, umm, isnít OBL infectious? Oh this patient has diahorrea and needs to be isolated. Fine I will discharge myself as it is obvious I really donít need to be here. Oh no you canít do that she says, OBL replies just watch me, now get the discharge form for me to sign. Next thing movement, he taken around for the CT scan, a doctor pops his head in, I am feeling like death warmed up and needing the toilet urgently, but OBL told me he used it at 4.30am and it was filthy with urine all over the floor and the toilet not flushed, so I am trying to resist the urge to vomit and my stomach is cramping.
The doctor tells me OBL will have to wait on the open ward and I told him in a pigís ear. He than says we will try and find him a side elsewhere in the hospital then and I ask why, as he is not staying.. OBL comes back from having the scan and asks for the self discharge form, while this is going on the ward clerk pops her in and says I will order lunch for you we just laugh and decline her offer.

The day nurse is not all pleased, says a PE will kill you, OBL looks her in the eye and says I have terminal cancer. Oh, they have also lost his Advance Directive regarding in an emergency DNR. We have always stated it is quality of life not quantity since OBLís diagnosis.

We just make it home and I spend the afternoon and night in the bathroom, with projectile vomiting and diahorrea , anything I drink comes back up straight away. It has to be something I picked up in the hospital , because I have not been in touch with anyone or anywhere else to come in contact with it.

He had a good nightís sleep apart from some sweating (now as we all know, this means the infection is under control). This morning I am feeling a bit better, so we enjoy a bowl of home made chicken soup. OBL, says this is the best he has felt for weeks.

It beggars belief, that OBL did not have one dose of carbosistene, the night nurse was too busy to read the patientís notes to find out what medication was required for maintenance and not one person inquired about dietary restrictions or preferences.

I am making a formal complaint to the Nursing administrator and the Complaints Manager.

Oh, the bed manager wondered if the OBLís reluctance to go to MAU had to do with the standard of nursing around there, but he also commented that the there have been staffing changes, so that should not be an issue. We said no, it was the attitude of the doctors last time and being pushed to MAU so that A & E targets are not breached. Last time OBL signed himself out of that place.

There is no care and dignity, while there place smells, the toilets are dirty and there are mixed sex bays.

Oh the other thing, not once was OBL offered washing facilities or even told where the shower was.

When I went into MAU at 7am, there was wheel chair with two full vomit bowls on it and it was out in the open for everyone to walk past.

We did remind them, that everytime either of us goes into hospital there we have both come out with Staphylococcus Aurous infections. We have been screened before hand and are clear.

We are willing to pay for our health care, but in an emergency it is non existent. The is the closest hospital with A & E facilities and once in there it has been bad news for us each time.

There has been no follow up phone call regarding the scan, so we can only assume our presumptions were right all the time and had we let them start treatment for OBLís so called heart problem and objected to the Warfarin therapy, we could have been in an even worse situation.

Also they missed diagnosing his lung cancer at this hospital, that to was supposed to be a PE and then COPD when a PE was ruled out 12 months ago. It took an email to Australia describing the symptoms to get a diagnosis and then me shouting to get the correct tests done. No, OBL is not being treated by this hospital for cancer; we have made sure he is being treated by the oncologists we trust, at the hospital where we know he will get the standard of care required and he is being treated our way, not the usual bog standard treatment dished out in this area according to the financial restrictions of the PCT and West Anglian Cancer mob.

If the junior doctors had read his notes they would have realised there is pattern to these symptoms.

No wonder people die, because no-one queries, they just accept.

The reader might say this is subjective, but this is what happened to us in the last 48 hours.

Something has to be done, and how it is changed I donít know, but unless we all make our concerns known, nothing will change. We also have to lodge our complaints and concerns.
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Old 12-01-2008, 02:13 PM
Lefty Lefty is offline
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Sorry to say DL that I've seen & heard it all before - & it'll never get any better whilst the hospitals are run for the benefit of the staff & not the patients

Do hope your both feeling better
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Old 12-01-2008, 02:58 PM
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Lefty, we are both feeling brighter this evening, and I think Nanna's Chicken soup receipe helps, she always referred to it as her Jewish Penicillin
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Old 12-01-2008, 03:37 PM
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Belibaste Belibaste is offline
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Oh my goodness DL- this is awful.

Hugs to both of you

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Old 12-01-2008, 04:32 PM
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Dl what an awful 48 hours i hope you are both more comfortable now.

I'm not sure how it will change its been bad for so long, the only thing Ive thought about recently is why can't a person walk into a hospital and pay there and then for blood tests or an assessment at any given time, cut out the middle man GP, GPs waiting lists and being referred takes weeks to months.

Many people are willing to pay money to get a quicker reassurance and in turn it would take the weight of the NHS, and reduce ( hopefully) the amount of misdiagnosis which i believe is done to save money and no other reason.

No one should have to pay for anything when there is an NHS in place but the system doesn't work, so if a person is able to have the choice then the access to it should be much easier.

if i want to have an xray of my foot then let me go in off the street cutting out the A&E and pay for it, blood test let me walk in and pay for it, ultra sound, MRI. IF you can pay then you should have access as and when wanted, its all the being seen and being placed under a diagnosis which is way off the mark that causes the problems and being shuffled from one person to another.

my rant over.
hugs xx
I will not be on the internet after the end of January 2009, so will not be around as much as usuall.
Anyone who wants to email me still go ahead but i won't be checking daily, more like weekly up the library.

" the cages we live in are often of our own making"

time for a life style change

Last edited by Hocuspocus : 12-01-2008 at 04:34 PM.
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Old 12-01-2008, 05:35 PM
Angry Cat Angry Cat is offline
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An Utter DISGRACE and a total SCANDAL!!!

What on earth is going on on this country?

The whole NHS is a shambles.

I am so sorry that you both had to endure such incompetance.

Give Oby a great big cyba cuddle and kisses from: AC

Plus Big Warm Cyba Hugs to you DL

All my Love
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Old 12-01-2008, 06:06 PM
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happyhour happyhour is offline
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DL - I am keeping abreast via this and your e-mails.
I'm actually at a loss as to what to say to you (and that must be a first!)

I can only think back to the dreadful night when I knew what was happening and we got my Mum into hospital via a 999 call. After 4 hours (1.00am by then) during which time my Mum never regained consciousness and we had been directed to the "relatives" room - a doctor came and asked my Dad "why did you want her to be admitted?" she died 8 hours later, never regaining consciousness.

At that point, I'm afraid I completely lost it (with both my Dad and my daughter there) - and I replied "why the f*ck do YOU think we wanted her in here you prat"

Although I can't be sure the medical treatment in the southern hemisphere is any better or worse than here, I do feel ashamed of ours.
I'd hate to be a teetotaller. Imagine getting up in the morning & knowing that's as good as you're going to feel all day.


I am always happy to give my time, advice and support without prejudice and based only on my own experience and knowledge, however, you must seek legal counsel if you are at all unsure of your claim......

Please do not publish my posts elsewhere without my express permission beforehand. Thank you!

Last edited by happyhour : 12-01-2008 at 06:12 PM.
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Old 12-01-2008, 06:22 PM
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Disgraceful state of affairs.

Hope your both feeling more comfortable now. Our hospitals are a sad sorry state currently and something needs to be done quick time to improve things.
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Old 12-01-2008, 07:22 PM
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I would like to swear

How disgracful DL.

As many have said I hope you are both feeling more comfortable now.
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Old 12-01-2008, 07:50 PM
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I am so sorry to read of your traumatic and shocking experience and am glad that you are both recovering from it now!

I have worked in NHS admin for over 20 years now, and have seen the quality of care gradually declining over that time. It is now all about targets, 'initiatives' and paperwork. The nurses don't have the time to actually care for the patients any more - they are too busy filling out endless forms (and we have to collate and file the bl**dy things)!

One of the wards I now cover as a ward clerk is the trauma ward which has 2 bays specifically for elderly trauma patients (mainly hip fractures). I have frequently had to point out to the nursing staff that a frail patient has been trying to reach a meal or drink that has been dumped out of their reach, or that one of them is distressed, soiled or uncovered and semi-naked. Many of these poor old souls are confused and frightened and many get no visitors whatsoever. I have often gone myself to give a little assistance or to try and comfort a distressed patient because I couldn't bear to sit there any longer hearing the pitiful cries for help. Usually all they want is a bit of reassurance or soothing, but this does not seem to be part of nursing any longer!

I have to say though, that the Royal Devon & Exeter is still definitely one of the better hospitals overall and excels in many respects. There are several excellent surgeons and consultants there, and also many dedicated and very caring nurses. I think it is not so much that the staff (in general) are to be found wanting, but rather that the system is failing both us (as patients) and them!
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