Hospital run around

User

Posted 30 Mar 2016 at 20:49

Unfortunately having enjoyed an improved spell over Christmas and the New Year Dad started to feel unwell with symptoms indicating an MRI would be required to confirm whether there was an additional bone mass on the base of his skull which was affecting nerves resulting in numb chin, hearing loss, nausea and dizziness and swallowing difficulties.

Whilst waiting for the MRI date which would be reviewed at a meeting with his oncologist on the 5th April - he deteriorated and was admitted to hospital two weeks ago with severe abdominal pain. He's been in the urology ward as the initial view was that this pain could be due to a blocked bladder caused by blot clots due to bleeding in the bladder. This was discounted and assumed the pain was constipation or bone pain.
Neither have been confirmed. His platelets are very low (25) and being monitored but Urology can't offer anything further.

Still no MRI after a 3 week wait and an outpatient meeting due Tuesday 5th with no MRI results to discuss at this stage. I asked the oncologist secretary today what would happen about that meeting - she advised that as he is now an inpatient he won't be able to have the meeting unless he can get dressed in outdoor clothes and turn up!

He's so weak as he can't swallow so has hardly eaten, his platelets are dangerously low - he can't attend that meeting. Asking Urology what next, they state they are waiting for Oncology to advise.

Oncology tell me they've been in telephone contact with Urology and provided advise. We don't know what that advise is and no one will tell us.

Palliative care nurses have visited him 3 times but no discussion of whether he is going to be prepared to go home, be transferred to acute oncology or when the MRI is likely to take place.

In the meantime Oncology have stopped all treatment and we have no update regarding a plan. They seem to have washed their hands of him. No one is concerned he's not eating and is becoming weaker by the day.

I'm being pushed from pillar to post with no answers from anyone. To top it all, last night after a nose bleed which wouldn't clot - he was given oxygen which was for a different patient. He wasn't asked his date of birth before they administered it and could have re-started his nosebleed and left him in a very distressed state.

If he is coming home, I've been told it's a lengthy process - I understand this, but all the time we are in limbo I worry that we are running out of time and he may not be with us long enough to do so. I am assuming the worst but I have no other information other than what I can see with my own eyes.

Originally a frustration, which I had hoped could be resolved by talking to the different departments - it's now becoming a very stressful situation for my family.

Any advise as to how we can get information? I don't doubt that something is happening but no-one is keeping us informed - he has a right to know the latest plan and to be aware and informed of any choices that may or may not include.

Don't think we will sleep much again tonight....

User

Posted 30 Mar 2016 at 21:51

Hi Maria,

I really don't know what to say, I have very little practical advice to offer.

I looked after my mother in her final years, and she had a similar month in hospital while they alternated between trying to get her to drink, or put her on a fluid drip. Everyone I spoke to seemed to think she wouldn't last long, in the event she lived another year in a Nursing Home, but it wasn't an uplifting experience.

So all I can say is that my heart goes out to you, hopefully you can speak to a doctor who can spare the time to let you know about your father's prognosis and what they intend to do, if nothing else at least to relieve his pain.

Dave

User

Posted 30 Mar 2016 at 22:07

Hi Maria,

Like Dave I don't no what to say but I just wanted to reply to your post so that you know that others can hear your pain and frustration. I don't want to swear on here but it makes me so angry that sometimes we have to fight for our loved ones especially when it comes to end of life care, I don't very often come out and say these things but I have witnessed myself just how bad the NHS can be at dealing with these issues. Bang your drumb don't take platitudes for an answer. Sometimes he who shouts loudest gets heard.

Honestly we sometimes put Drs on a pedastel ,confront them get angry this is your loved one that you are fighting for

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Mar 2016 at 22:15

Well I have never been very good at behaving well so this might not be the best advice in the world but it sounds to me like your dad is at risk to decline rapidly while people fail to organise themselves. In your shoes, I am afraid I would camp at the hospital, next to his bed, until you see an oncologist. Involve your hospital PALS service, ask to see the palliative care nurse, speak to the hospital social worker, whatever you need to do to get some answers. Are they looking for a hospice place for him perhaps?

It might sound terrifying but I 'kidnapped' my mum from a hospice and took her home against all advice. I had to pay for a private ambulance but once the medics understood that I was serious, they helped me put together a home care package so that she could spend her final days in her own house.

It might not apply in your case but something to be aware of - my mum was too far gone to understand anything that was told to her but the team responsible for her care in hospital insisted on telling her every single thing and just kept telling me that it was for mum to decide whether she wanted to pass that info on to us as her family. As she had a brain tumour, this was clearly ridiculous but that was how the hospital was interpreting patient confidentiality. Has your dad at any time told the medics that he didn't give consent for information to be passed to you? Worth asking, I think.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Mar 2016 at 06:43

I love you ladies ---- daaaaaamn , you rock ! I'm seeing Lyn with a scary face driving a private ambulance with blues and twos. In all seriousness fair play to you. You can be on my team :-))

User

Posted 31 Mar 2016 at 11:07

Maria,

please, please take the advice above and go in and fight like mad for your Dad. Too often we hear of cases like this where immediate family are left high and dry and feeling helpless.

I think Lyn has a great suggestion in going to the hospital social worker, if they see your distress first hand they should at least step in and help. Also if there is a Macmillan or Maggies desk as the hospital go to them and ask if they can put you in touch with the end of life care specialists in the hospital or perhaps at the local hospice.

The run around you are being given surronding appointments and the MRI is simply not acceptable and to be told he has to turn up dressed in outdoor clothes to keep his out patient appointment is atrocious. That really should be reported to PALS.

I had to resort to a last ditch effort this time 2 years ago when my OH was in the local hospital in a similar situation. I had tried all the normal rational things. so fell back to crying ... tears, a lot of them and literally begging a junior Doctor to help us. Lyn had told me then about 'kidnapping' her Mum which I always kept at the back of my mind just in case. Thankfully the junior doctor came up trumps even though he had worked right through the Easter weekend on the ward at daytime and on call at night.

I will be thinking of you and hope that you can get some much needed support

My very best wishes

User

Posted 31 Mar 2016 at 14:07

I don't think kidnap is something to recommend, but I suspect that tardy ward staff might move a bit quicker or take family concerns more seriously if it is threatened - "you are not caring for this person properly, it has serious case inquiry written all over it and I want to take them home because they are safer with untrained people than they are here" is a pretty serious allegation.

Maria, I hope you have made some progress today although my fear is that your dad has deteriorated further.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Mar 2016 at 16:41

Without a doubt go to PALS....if you feel they are now neglecting him it wouldnt hurt to mention this as a potential safeguarding issue to the ward staff, PALs, social worker, consultants

I too hope progress has been made

Bri

User

Posted 31 Mar 2016 at 17:43

Yes, A radical approach needed. Sadly there are times it helps to make as much fuss as possible, shouldnt have to be that way though. Had similar with my late partner. You cant assume you will be told anything and sometimes it appears no one person or service has responsibility for care. My heart goes out to you, it is awful seeing loved ones in this predicament, Kind regards,

Fiona.

User

Posted 31 Mar 2016 at 20:51

Maria, All of the above comments , you can as a family member call a meeting to review care, and be there, although you may be told it's a professionals meeting, stand your ground and attend.

Ask to see the social worker, and get him/her to attend the professionals mtg with you, they should do this. Take notes at the meeting PALS, may be able to attend with you as well. Makes me very angry, when family members are not listened too......
Please make sure you get the support you need. Take care.
Leila x

User

Posted 31 Mar 2016 at 21:26

Hi Maria as previously suggested first option PALS also Chief Executive of hospital has having worked in NHS for number of years strict tight response times have to be met. Jx

User

Posted 02 Apr 2016 at 01:02

Thank you all for your advice - Dad did finally receive Mri yesterday and oncology consultant visited him today. They were able to advise of this yesterday and this morning her secretary returned my call advising what time she would be there so mum and I were able to join her and dad. Big turnaround.

Sadly not good news. The cancer has spread to the fluid in his brain and in his consultants words - he has lost so much ground already we need to get him home. He's being fast tracked as there isn't much time but we are heading into another weekend when everything grinds to a halt - someone needs to tell the cancer though.

This is all happening so fast I fear he won't make it home from that ward. I suggested to mum there may be a room he could be moved to perhaps, but they worry he'd be turfed out if it got busy and end up with an even worse position than he enjoys now, as at least he has the window view.

He is brighter at the thought of heading home and I sense some relief in finally having some answers albeit not what he or we were hoping for. He's still eating with sickness and pain under control - so grateful for that.

Somehow despite news today it all feels surreal - wish it could have been a bad taste April fools joke this morning, sadly this is reality. All our efforts now focused on ensuring that fast path keeps moving.

User

Posted 02 Apr 2016 at 01:51

Maria, I am so pleased that you have finally made some progress with the medics and although the news isn't great, I don't think any of it was a surprise to you and I can recognise the sense of relief.

I really hope he makes it home but d'you know what, I don't think it would matter so much to your dad now - just believing he is going home to his own surroundings, to be in the care of the people who know and love him best in the world, will be such a boost and will do so much to allay his fears.

Don't forget to be kind to yourself while you are busy trying to support everyone else - these next days will be very difficult for you all. I will be thinking of you x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Apr 2016 at 07:48

Thank you Lynn - not much sleep last night, hoping Dad had a better night. Your words are reassuring, I hadn't thought about things that way. My sister arrived last night so we are able to support Mum and Dad and each other - I'm relieved she's been able to come, we are all together now which will mean a lot to Dad as he worries about Mum.

User

Posted 02 Apr 2016 at 10:43

Maria

there is no easy way to say this but another thing to consider is that any vehicular journey now could be traumatic for your Dad and possibly for you. When someone has been lying down for even just a few days the transfer to a wheelchair and into a vehicle or onto an ambulance stretcher followed by a journey (even just a very short one) can make them sick, its motion sickness but it can be really hard hitting. In the hospice our consultants sometimes advise against any transfer. If Dad is able to come home please ask the medical staff about administering anti sickness and fast acting pain relief prior to his transfer.

I know the desire to meet someone's wishes can over ride every other thing, I honestly know how hard this is for you so I just wanted to let you know that your Dad will probably be content knowing he has all of you around him. Also he will know you have all done everything you can to make him as comfortable as possible, because he knows how much you all love him and that he loves you right back and some.

Thinking of you all

my very best wishes and a big virtual hug as always

xxx

User

Posted 02 Apr 2016 at 21:13

Thank you Mo - he is receiving anti sickness medication already but it is helpful to understand the implications of the journey home. He had a bad night last night and spent most of today dozing although was able to eat and speak to a few visitors for short spells. Increased morphene and progression of symptoms are taking their toll but thankfully the pain is still being controlled.

I'm sure he knows how much he is loved - if love could heal him he'd be as strong as an ox!

And thank you for the virtual hug - feeling very uncertain about forthcoming days so it is very welcome x

Edited by member 02 Apr 2016 at 21:15 | Reason: Not specified

User

Posted 02 Apr 2016 at 21:34

Hi Maria

I do think there is a sense of relief for many of us when we know the situation we are facing, all the uncertainty is very wearing and I know that I face fact much better than I face uncertainty. It's because you know what to do, no wondering if it's the right thing, you just know, even if that means playing things by ear. Is there no local hospice that could help? Hospitals are strange places at the best of times but hospices are another thing altogether. Mind you I suppose it would be as traumatic to move to another medical facility as to move home.

Anyway, I wanted to pop by and say that I'm thinking of you and your family. Many of us here know what it's like to face your situation. It isn't easy but knowing you did what you could is enough.

Big hugs

Devonmaid xxx

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