Advice required, unbelievable scenario.(10 Posts)
I will try to make this as short as possible:
My uncle was rushed into hospital just after xmas as he suddenly became very confused, getting names of relatives wrong etc, he has been in the hospital for over 3 weeks now and has deteriorated on a grand scale, now he cannot speak, use the bathroom, remember who any of his family is, they are throwing words around such as Lymphoma, cancer, brain tumours but still...no diagnosis, missing test results and no prognosis however my Aunt has been given the decision to make of "transfer to different hospital for brain surgery however will have permanent impact on his memory" or the latter "take him home and enjoy the time you have left".
How can they send somebody home to pass away in "comfort" without giving a diagnosis? Should my Aunt get in contact with P.A.L.S? On a similar note, how can they ask about agreeing to a life changing operation without telling us of the success probability, time he could have left afterwards etc?
She has also been told that to take him home she must have a suitability assessment and must pay for all home adaptions and care (including the assessment) which is going to cost thousands of pounds. She can't afford that! They don't even own their own home and have no assets to speak of.
The point of my post is this:
Upon the lack of information provided can we insist on having him transferred to a different hospital for a second opinion and a new set of doctors to shed a different light?
Can my Aunt get help with care costs if she literally doesn't have the money to turn her home into a secondary hospital, if so where from?
No particular knowledge here. Presumable they have done scans? They can't tell you what kind of brain tumour it is unless they biopsy it. That is pretty invasive.
The surgery will buy him time, but leave him impaired.
Quite honestly having been a nurse for many years this sounds ludicrous.
You need to grab the consultant who is looking after him and demand an explanation in a way a non medical person can understand.
If they don't own their own home and don't have any money then surely they would have had a financial assessment and if they qualified they would send in occupational therapy to convert the home.
This smells of fish to me.
So presumably a head CT scan has shown some kind of mass? I'm guessing they don't know for sure what the prognosis is until they operate, they need to help your auntie make this decision by going through each option very thoroughly with her. If she feels she has not been given enough information then yes PALS would be very helpful. She can ask at the hospital reception for the PALS office or she can ring them.
Who has spoken to the consultant? Is it possible shock/stress has led to a bit of confusion?
My interpretation of what you have described is a brain scan has shown a growth. Further investigation is highly dangerous, -brain surgery is hugely risky. The position of the mass might give some indication of extent of risk. So it's not there is no diagnosis; reaching a firm diagnosis is too risky.
Sadly, my sister is going through all this and doctors have always been very honest that they can't be precise. We have had incredible support from McMillan (who gave her a grant for some mobility equipment) so might be worth speaking to them? Her Mcmillan nurse has been phenomenal in cutting through bureaucracy and making things happen.
Thanks for your replies everybody. He has had two CT scans, an MRI, a lumber puncture, a bone marrow biopsy and numerous bloods etc. They have found a "mass" on his brain however haven't confirmed or denied an actual brain tumour. The hospital have said that it will be a further 2 weeks before a diagnosis is confirmed but judging by how fast he has gone down hill in the past 3 weeks then a further 2 feels like we are just leaving him in there to deteriorate. They have said his lymph nodes are all swollen and thrown words around such as Lymphoma but as a theory, not a diagnosis. They haven't sat down and explained everything, she just got a phone call last night saying he is either moved to a different hospital for brain surgery which will leave him mentally and physically disabled or bring him home to make him comfortable. I find it incomprehensible considering she hasn't even been told what is bloody wrong with him yet. I have always championed the NHS, as having been on the receiving end of it myself I can appreciate what a valuable commodity it is and how fortunate we are to have it, I think I am frustrated with seeing my Auntie completely beside herself after being told she would have some test results, then when she goes in to speak about them she is fobbed off. She read in his notes today that he is suffering from severe Hyponatremia! This has never even been mentioned to her. Its totally nuts!
As your aunt is the next of kin, the hospital staff are unlikely to give answers to anyone else without her express consent and will generally assume there is none given.
The best way forward may be for 1-2 people to accompany your aunt (with her agreement of course!) to a meeting with the senior consultant in charge of your uncles care. Your aunt will likely have to become something of a nuisance to get this, so ask the nurse in charge about when is a good time to speak to the consultant and see if he/she can help you arrange a 30 minute timeslot where you can sit down with the consultant (and perhaps a representative from a charity that works at the hospital - perhaps Macmillan, or a hospital based social worker) to help you understand the choices for your uncle and the implications of each.
You will also need to speak to a social worker and/or occupational health in the hospital to help you understand what help and support you can be given. You may also want to speak to the person who has made the decision that the surgery cannot be done at your current hospital (this is likely to be a member of the surgical team at the hospital, and not the consultant in charge of your uncle's care)
It might be best to ask for a multidisciplinary meeting that involves all these people, so that you can get a comprehensive understanding of how things will go with each of the options.
This may or may not work but it might be worth telling your aunty to ask for an assessment notice to be sent to the adult services department for the hospital (social services). Whilst it does not sound like your Uncle is displaying social care needs (definitely sounds like health needs), a social worker could be allocated to help your Aunty navigate the situation. I'm a hospital SW and I've helped in similar situations but it may depend on how their systems work.
Something very similar happened in my family. Same sudden deterioration. Scans showed a mass, but not possible to find out what it was without surgery. A slot opened up so he had it done very quickly, then the results came through a week later.
Depending where it is though, the surgery could do a lot of damage, but they can't tell you anymore until they've done it.
It seems that these things really can go from no symptoms to nothing to be done really fast.
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