“PALS”… The Patient Advice and Liaison Service at the hospital. I’d struggled to understand why Dad had been discharged from hospital in late October, when it was clear to anyone that he was unable to care for himself, and no-one checked that his carer – my Mum – was capable of caring both for her husband and for herself. At this point – when they were both in hospital, I found the need to contact them again:
24 Nov – EMAIL To Patient Advice PALS:
I’m sorry that circumstances are such that I have to contact you again, regarding my father. I have a few issues concerning communication between FEAU and Ward 81, and also the attitude of Dr *** (ward 81). I need to put this into context so…
Please try to imagine this scenario:
* Mum (dad’s carer) admitted to AMU (Tue 18th) because of breathing problems/lung infection. She appears to be receiving FANTASTIC care on ward 230/Gastro and I’m very grateful to all the staff there.
* Wed 19th Dad was admitted to FEAU. I was with him at admission and talked to both the Dr (privately as well as with my Dad) and the nurse. I answered the questions with Dad, clarifying and adding info when he was giving one word answers. Questions regarding the care at home (who shops/cooks/cleans) the amount he eats and drinks (barely anything), the distance he can walk (he is currently bedridden)etc. From the booklet the nurse had, they appeared to be pretty standard admission questions and I watched her record the answers. I made a point of telling the doctor that he had lost about 7 stone in around 7 months, and my Dad told her his waist was usually 48″. Before leaving the ward I made absolutely certain they had my mobile number, as his next of kin. I am 110% certain of this.
* I visited him on Thur 20th on that ward (FEAU). I spoke to two nurses again saying how much weight he had lost, and showing them a photo of my “usual” father – chubby-cheeked/jowly.
* On Friday someone rang me to ask a few questions, including about the domestic set-up and the care he needs. I again stressed about the rapid, severe weight loss and the fact that he hasn’t walked/stood since his discharge from Gastro on Oct 21st. At some point on Friday he was moved to Ward 81.
* On Sat I visited him. I spoke with one of the nurses (I believe she was in charge but can’t confirm) who said they needed to get him to eat and drink. I asked how he was doing, and the reply was that there was nothing in particular to tell me.
* On Sunday I visited him again, and he seemed far less chirpy. Eventually I managed to speak to the doctor who said he was only covering for the weekend. My Dad’s notes hadn’t been by his bed, but the doctor flicked back and forth through them. He said his job over the weekend was just to continue with the treatment, which was just to keep his fluids up; he still wasn’t eating or drinking much. This doctor said there would be a GI Multi Disciplinary Team meeting about him later this week. He said Dad isn’t in any immediate danger. I only felt partly reassured – Dad seemed to me to be weaker than before.
* Today, Mon 24th Nov. At 9.40am a young lady rang and started to ask me about the care arrangements in the home. This was about the 4th time I’d answered these same questions. I am at breaking point with worry about both my parents. Imagine… the phone rings in these circumstances, you presume its an emergency, that one of them has had a heart attack, that there’s some bad news… You don’t expect the same questions yet again. I told her that I’m exasperated with all of this. I told her yet again that Dad is bedridden, has lost 7 stone etc. I told her that I believe he has pancreatic cancer (I’ve not said this to anyone before. I’m not the doctor…) I apologized for ranting, and she dealt with it very well, saying she understood and that she would ask the doctor to call me.
* Much later, maybe 1pm, I’d not heard from the doctor so I rang the ward. The person who answered it rather brusquely said doctors don’t make phone calls. When I insisted I was told the doctor would ring me, she went to find her.
So… Dr ***:
1) First of all she said she had been trying to call me but every time she called there was no answer. I assured her I had carried the phone with me all morning; it hadn’t rang.
2) She then said she hadn’t got my number. I said they MUST have my number because I’d received a phone call this morning from the ward.
3) She said she meant that my number wasn’t written in the correct place, as Next Of Kin. So, I reminded her that she said initially she had called me but there had been no answer, and she completely denied saying it.
4) She then asked something like “He has lost some weight in the last month?” At which point my frustration went sky high. How many people do I have to speak to to make whoever is treating him understand that he has lost around 7 stones in about 7 months. That’s HALF his body weight. She actually said she hadn’t been made aware of this huge weight loss!! So, whether FEAU didn’t note it down or she hadn’t properly ready his notes I don’t know. What I do know is there is a terrible breakdown in communication,which is very distressing.
5) She then said his blood test results slightly suggest he might have Pancreatic cancer. That he has refused an endoscopy to follow this up. I know my Dad has refused an endoscopy, but until then no-one had given any suggestion they were looking at a possibility of pancreatic cancer. The ONLY time it has been mentioned was by myself, earlier today in the phone call… The Sunday doctor certainly didn’t mention it when I talked with him. I could have tried to persuade Dad to have the test. To add to my frustration, when I told Dr *** that I didn’t think ward 81 seemed to be the right place for him, since this was a possible diagnosis, she actually asked “Where do you think he should be?” I told her Gastro – co incidentally where Mum is. Dr *** said that since he was refusing an endoscopy, there was no point sending him there. I obviously see her point, of course, but I have to say the whole conversation I had with her has left me feeling a complete lack of confidence in the care and attention my father is having. Her “where do you think he should be?” question was not asked sarcastically. She actually appeared to be asking what I thought… Her tone made me wonder how experienced she is? It is completely different from the quality care Mum is lucky enough to be having.
It’s breaking my heart – I think he is not being helped at all. No one has talked to him about why he isn’t eating, why he refuses an endoscopy, how he is feeling. He looks completely lost and in my opinion is deteriorating.
6) Before closing the conversation I asked Dr *** to confirm that she had made sure my number was now clearly visible on my Dad’s notes. She refused to use the word “clearly”, until I asked her for the third time, when I said “so you won’t reassure a sick man’s daughter, who lives 100 miles away, that her number is now written clearly on his notes”. Finally, she said it was.
I told her I was going to pursue a complaint about this lack of communication, and she sounded nervous and then apologized for anything she might have said. I accepted her apology, but said I would still pursue this. In particular, I need to know:
1) WHY my number was NOT listed as next of kin?
2) WHY/IF the info regarding his rapid, severe weight loss was not passed from FEAU to ward 81.
3) Why no-one has mentioned the possibility of pancreatic cancer to me until today when, strangely, I mentioned it myself.
I telephone FEAU after speaking to Dr *** and was told someone would return my call. I’m still waiting 4 hours later.
If I sound frustrated it’s because I am. I’m a realist and I’m not expecting them both to be miraculously cured and discharged fit and healthy. I want compassion for them and for me. I want consistent communication and people to care – Mum is very lucky, Dad seems to have drawn the short straw. If I sound at breaking point it’s because I am.
It’s so clear to me now, 4 years later, that of course my Dad – old, frail – was clearly unimportant to them. They were doing the bare minimum because they knew he was dying.
TEXT from Mum on 24 Nov (2014) at 17.19
Mum: Tell me when i can ring u doc been xxxx
Me: Hello..Please will you check they have MY mobile as your NEXT OF KIN? I will explain when I see you! Hope you’re ok. xxxx
Mum: Yes i will xxxx
Me: Thanks! Henry sends a big hug xxxx
Mum: I send him 1 xxxx
Email to a friend, 24 Nov 2014
Hello…
How lovely to hear from you…
Things are not good. I had a meltdown in the early hours on Friday, and although I went to work I couldn’t face teaching. School is being brilliant, and said they’d cover me until the end of term (3 weeks). However, because I don’t know what’s going to happen, although I’d dearly like to take it – I’m not coping – I daren’t. I went to talk to the Head whose wife died 3 years ago. We agreed I’d go into work when I can, but he said they’d understand if/when I couldn’t.
We visited them on Sat and Mum looked good, Dad just ok. We stayed with one if my friends on Sat night – she lives an hour from them. On Sunday, Mum was very tired, but chirped up with our visit. I talked to her Dr. They’re having a multidisciplinary meeting (MDT) about her on Thur, to discuss treatment. They want to try a different type of stent so she can eat/drink. If that’s not possible she could have a PEG, a tube which fits to the stomach, so you feed through bags attached directly. You NEVER eat/drink again… She also mentioned radiotherapy, but I can’t bear for Mum to have this; it’s horrifically painful on the throat. Mum’s brave and I’m scared if offered it she will say yes, not fully understanding the implications… But I’m sure I’m doing her a disservice. She is, though, 81 and with angina and asthma (a recent diagnosis), and I suppose I was surprised they are considering trying to treat it. I’m so scared of her suffering more than she needs to – she looks so very tiny lying on the bed. She’s in a lovely private room and the nurses are so kind.
Dad on the other hand is now on a Frail and Elderly ward, where on Sat two men were shouting out and throwing. It’s hideous, and I can’t bear to think of him there. They are so far apart, too,that they can’t visit each other. Dad can barely speak so they can’t really phone. I got so angry with his Dr on the phone today. Only after I mentioned the possibility of pancreatic cancer did she say that’s something they want to look into but he is refusing an endoscopy. I don’t blame him… They scare me too, and even if they find cancer they can’t treat it. He is unbelievably skinny. It’s hideous…. They’re having an MDT meeting about him this week too, but his useless Dr doesn’t know when. I’ve actually written a letter of complaint about her and the Frail and Elderly unit in general this afternoon. She lied to me, blatantly, on the phone today. They also didn’t have me/my mobile number down as Next of Kin, despite me making a huge point of checking they had it when he was admitted. She also said ” he was admitted with weight loss? He has lost some weight in the last month?”…. I’ve told them ALL over and over – he’s lost around 7 stone in 7 months. She said “I wasn’t aware of that”. What do I have to do to make them aware…?
So… Both doctors have told me they’re not in immediate danger (though Dad looks at death’s door to me). My plan is to go to work as normal this week – I get Thur pm off, so can visit them then – unless I’m called away before then. Hopefully, the MDT meetings will throw some light onto the next stage.
Having them both in hospital 2-3 hours drive away (each way) is awful. The parking at the hospital is unbelievable – impossible. They’re about a 20 minutes walk from each other, outside across the site. It’s so hard visiting them both, and trying to speak to the nurses/doctors, and to check things are being done, as well as actually visiting them. More than anything, I’m traumatised that I can’t find a way to get them together, or closer, so they can talk/see each other. I’m a problem solver, and I can’t solve this most importing problem. I can’t rest until I can find a solution. There is no solution, so I can’t rest… My GP is ringing me tomorrow – I think I need something to help me cope. I feel so pathetic admitting this but am really struggling.
Sorry to go on… As they say, ” it helps to talk”.
Much love,
B xx
“Pain moves us forward, changing us into something else, something we need to be.”
― M