"My husband's patient journey"

I’m absolutely livid at what happened the last time my husband was admitted - There have been several previous admissions each with their own similar and different experiences but for now I'll stick to the most recent one.

Very briefly my husband has been in and out of hospital for various medical problems over the past decade but since 2015 he has had quite a decline in his health :-

2015 - After various symptoms a brain scan revealed 2 previous strokes.

2016 - April - Doctor called Ambulance

Admitted - flu type symptoms, low oxygen, high temp

Next day - Moved to Isolation Room

Various tests to exclude TB, Legionnaires etc

Diagnosed - Pneumonia

6 days later - HOME

2017 - Mid March - Ambulance called

Admitted - Rigors, very low oxygen, very high fever, rapid pulse,

confusion, breathless

- Moved from A & E to ICU

Put on Life Support

Organs beginning to fail

...... Transferred to High Dependency Unit

....... Later moved to Respiratory Ward

Diagnosed - Double Pneumonia with Severe Sepsis & Multi Organ Failure

Mid May - HOME

Early Sept - Ambulance called

Chest Pains

Discharged within an hour

Diagnosed with indigestion.

*** within an hour of being home pain started and violently sick ***

Next Day - Dr house visit - called for ambulance

Admitted to CAU

- Self Discharged due to stress and being moved to ward

Next day - After visit to ADOC was advised to go to A & E

Two days later - Diagnosed - Gastritis

HOME

2018 - Late May - Ambulance called

Rigors, high temp, low oxygen, confusion, rapid pulse

Admitted to CAU

Next day - Moved to Ward

Next day - Diagnosed Pneumonia & Sepsis

HOME at night

Mid July - Ambulance called on instruction from GP Surgery

High temp, low oxygen, Black Vomit, Rapid pulse

Admitted to CAU

Next day - Moved to Ward 5B

Next day - Diagnosed - Possible chest infect, Toe infect, severe constipation

HOME

As you can see the last 3 years have been pretty constant for my husband. He has had so many blood tests, x-rays, antibiotics, pokes and prods, tests and procedures both in patient and out patient. He has various other medical conditions which cause him distress. The worst stay of all obviously was last year (2017) when he almost didnt make it. The trauma of coming through such an ordeal has left him with a degree of PTSD, paranoia, fear and anxiety, anger and frustration. He has been left with several disabilities both physically and mentally. After he was moved to different wards last year, each one brought its own challenge for my husband and every challenge added more and more distress. He struggles now with proper understanding which sadly becomes worse when he becomes stressed. He takes a lot of daily medication and strong painkillers.

Going back to JUST this last admission there are a few things which I feel have to be addressed.

1 - Luckily when my husband was seen in A & E it was by the same Consultant who saw him the previous time so he had some memory of what went on before. He was very thorough and explained everything in great detail. So far so good.

The doctor listened to everything I was telling him (since I am his wife and also his carer and been with him through everything he sometimes finds it easier if I just take over and explain.) There were a few symptoms which I showed the doctor so he said he didnt want to miss something and would go through everything bit by bit so we were asked to be patient. It could be heart related, infection, gastric etc...he did say his chest had a few crackles on either side but there was a puddle of fluid on bottom right lung!!

The doctor did explain some of the medications that he was on would be stopped until they figured out what was going on. Unfortunately this means he was not getting his adequate pain relief. My husband had been taking a variety of pain killers for over a year solidly so to abruptly stop these medications surely would begin withdrawal too on top of everything else!

2 – My husband was then admitted round at the CAU - this went ok and the nurses there were very nice and explained what they were doing etc....No ID bracelet was put on him though which was unusual.

When the doctors came round things began to get a bit confusing as a lot of what the A & E doctor had mentioned as possible causes etc had been forgotten about and when we brought it up they didnt know anything about it. One doctor concerned about toe and one concerned about swollen abdomen...Neither about the chest. According to them chest was absolutely fine. I relayed back to them what the A & E consultant had said and they just dismissed it saying the x-ray was fine.

They decided they needed to do an enema as the bowel was very full, however, when my husband asked for a commode as his mobility makes it difficult for him to make it to the toilet in time, he was told to either hold it in as there was only 2 commodes for 23 people or he would just need to make it to the toilet. I feel that they didnt give a thought to his dignity or struggles. The rest of the day there was no real goings on. It was the following day everything went crazy.

Doctors had been round and they were explaining that as soon as they could get my husband disconnected from the insulin, oxygen, fluids etc., and they were basically able to get him on to oral antibiotics then they would be sending him home as it was "safer" for him to be in his own surroundings. What they didnt want to do was put him in a ward as a ward is so full of germs and he is vulnerable that he would be likely to pick up more germs there so if we were happy that he recover at home then that was the plan. I left my husband to go and make a phone call to inform our daughter but on the way back - less than 15 mins later - I was met by a nurse and porter pushing my husband in wheelchair. He was being moved to a ward!!! He was NOT happy at all. We both questioned it but were told they were following orders etc. My husband said that a nurse had come in shortly after I left and basically said right you need to get your stuff together you're going to a ward. My husband tried to explain that no he had been just told that that he was not to go to a ward but the nurse wouldnt listen and said yes, you now go to a ward. He asked for them to wait for myself to come back but they were rushing him out and bundled his bags on to the wheelchair and began moving him. As we walked out of the CAU, I counted 5 separate EMPTY rooms!! By the time we got to the ward, my husband was becoming very distressed, angry and frustrated. He uses a vape pen instead of smoking and was now desperate for a puff of his vape so asked if he could go out - he was told No, you're not going anywhere Mr ... He was really losing his ability to remain calm now (bearing in mind he is in a place where 1/ he nearly died the previous year and has left lasting traumatic memories, 2/ has brain damage caused by 2 previous strokes so anger, impulse, behaviour etc are all affected by this 3/ just been moved after being told that he would NOT be going into a ward 4/ been greeted by two nurses who did not know what had been wrong with him, why he was admitted, etc.) While my husband was questioning one nurse what he was doing there and asking why he couldnt go out for a vape since there was obviously nothing wrong with him the nurse turned round and snapped at him saying Mr ...... you cant go out - youve had 3 seizures and .....then my husband began laughing and said you dont even know what Im doing here - you know nothing about a patient that has come up. The nurse then said Yes, you’re right I havent any idea why youre here, I havent seen any of your notes yet. Meanwhile I tried to intervene and explain that I was present when we were told that my husband was not to be put up in a ward because of his previous sepsis and the fact he was left vulnerable and also busy fighting yet another infection...The nurse then turned and quite abruptly told me that they didn’t know know why we would be told that, nobody stays in the CAU longer than 24 hours, they get moved to a ward and that my husband was no different from anyone else. The nurse said that we wouldnt be told he would be kept down there! I felt the nurse was therefore indicating that I too was lying!!

I went out and had a quiet word with the other nurse who Id heard say to someone else what a “f***** s*** night this was going to be”! I apologised for my husbands continuing outburst but he did have brain damage, he was managing to cope in CAU because he was in his own room, own toilet, etc and not surrounded by others coughing, being sick, going to the toilet and being infectious. He was accepting being back in hospital because of where he was but the minute they changed the plan - without any explanation, they wouldnt even wait for me to come back before they moved him. The nurse just said there was nothing in his notes about this!!! He was scared and lost control and no one helped him or me. When my husband gets like that I get very upset too as I feel embarrassed, worried where it will escalate to, what will end up happening - will he be chucked out, will he self discharge (which he keeps saying he will) and then I’ll be left to watch him deteriorate and not know what to do...No one qualified to deal with a mental breakdown was there to help or offer assistance. I think this is very poor. I asked was there not even a single room he could be put in then but I was told no, there were no beds anywhere. Why couldnt he have just been left where he was. They were just about to disconnect his insulin down there anyway!!

3. While down in the CAU my husband’s blood sugars were high so he had been on an insulin pump. Plans were put in place to let him have a dinner, give his own injection of insulin, nurse was going to take a reading and if at a certain level would disconnect the pump. Fine.... Numbers were a little high still so nurse checked with doctor and was told check again in half an hour and if number at 15 the pump can be disconnected. Fine! This was a plan that we were all aware of and following. Then, someone made the decision to move my husband so he was still connected to the insulin pump when we got to the ward. After the confusion and the anger and upset I quizzed the nurse about the insulin - they knew nothing about what was to happen. The nurse asked me to tell them and said I probably knew more about it than they did. They said there was nothing in the notes to say when exactly it had to be taken off. Luckily my husband’s blood sugars were at 9 but, if I had not quizzed the nurse, when would that pump have been taken off?

I could detail so much more negative things that have happened. A one off mishap can be overlooked but as you will appreciate my husband has been in this hospital a lot of times. It is truly becoming a very worrying thing so I felt compelled to enter his story.

My husband is more vulnerable now than he has ever been. He was always a strong confident man, but now he is frightened, terrified of catching something that could land him back in ICU. He has nightmares of being in the different wards in the hospital. This particular visit was very traumatic for both my husband and myself and I now find myself worrying daily as due to his deteriorating health he is vulnerable to picking up infections and admission may be a regular thing so I’m already worrying about next time!

Surely there should be some sort of plan in place for if and when he gets admitted. eg., front page of his notes I think there should definitely be something saying he has a specific brain injury due to stroke and has difficulty with emotion, behaviour, anger, frustration, understanding etc..If at all possible, can he not just remain in one place?!

I think that communication between A & E and the CAU and then between them and the wards must be clearer. There was no consistency...One doctor told us one thing and then the next one told us something completely different.. same with nurses.....

I understand that during some treatments certain medications may be withdrawn, However my husband has had his painkillers stopped and has been going through some withdrawal. Day to day struggles are bad enough without having a forced drug withdrawal with absolutely no support.

I am absolutely dreading his next admission