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ProfilePosted byOptionsPost Date

JoyLouise

JoyLouise Report 19 Sep 2017 12:24

Rollo, since you mention stroke victims in particular, here is my experience of the situation.

One Saturday evening a very close relative came to sit next to me and he was slurring. I took one look and knew what had happened. I did not wait for an ambulance as it is about a five to eight minute drive to our local hospital.

This is the hospital which, in my opinion, is not good. I learned that there was huge disparity between the various services in the one hospital.

I went into A & E, going straight to the reception desk, saying what I thought had happened. The young lady went immediately to fetch a sister who, without delay took my relative into a cubicle, bringing the doc to look at him. They knew what had happened and treated him without delay then he was admitted.

It was a holiday weekend so the next day he was discharged without any follow-up apart from giving me three numbers to ring for appointments. I got two of the appointments fixed for the following few days but one, Medical Physics, told me that it would be five weeks. I was not having that and spoke sharply, saying that this was a stroke victim and every delay meant loss of some aspect of his being. Eventually, they gave me an appointment for ten days' time.

When we got there, there was no mention of an appointment for him. They said that no referral had arrived from the hospital doctor/consultant. I said I would chase it up there and then. When I contacted the consultant's secretary, she told me that she was waiting for the doc to sign the form. She told me he was in the hospital and only made a move herself when I said I knew he would be on one of two wards and I would collect the form from her and go to find him for his signature.

She was back, within ten minutes, handing me the signed form to take to Medical Physics.

That is how I discovered the huge disparities between the wards, services and people in one hospital,

I blame the Chief Execs as they are responsible for the services. They are not paid peanuts but seem to act like monkeys, unseeing, unhearing and never speaking out unless they need to.

By the way, the relative recovered very well. Only those who know him realise that when he slurs after coming under stress or after one or two drinks he is not drunk but one small section of his mouth remains frozen. His reaction time, while still quicker than most in his age group is ever so slightly slower than it was before the stroke. We are all pleased that he was a fit, walker and climber before the stroke because his doc says that's why he came out of it well.

Hospitals are, as I've always said, hit-and-miss places.

SuffolkVera

SuffolkVera Report 19 Sep 2017 13:14

Rollo, I don't know what to say. I can't add anything useful to what has already been posted, except to send you my very best wishes for your mother and cyber support for you.

Reading the stories on here I realise just how lucky we have been. When my fil was coming up 92, and suffering from advanced Parkinson's Disease and prostate cancer, he was taken to hospital. He was clearly very unwell, mind wandering and hallucinating, even though he was normally mentally very alert. In spite of his age, none of the staff mentioned dementia, they diagnosed a lung infection and got treatment under way. His swallowing, already very bad, worsened so he couldn't take nutrition. The doctor asked his permission to put in a stent so that they could feed him direct into his stomach. By then his mind was back to normal and he decided for himself and refused. OH had the job of ensuring his father understood the consequences which he definitely did. He therefore wasn't fed but was looked after with great care and compassion for another week when he asked to be taken back to his nursing home where he died another week later. Through this time his mouth was regularly kept moistened by being cleansed with disposable sponges soaked in apple juice.

This was a few years ago but someone close to me is ill at the moment and will be having an operation on Friday. He is also receiving excellent care. I wish it were the same for everyone.

Thinking of you, and your mother <3

kandj

kandj Report 19 Sep 2017 14:17

Rollo, this is a very difficult time for you and I wish you well during your meeting with the Matron tomorrow. In the past I have also needed to confront the hospital authorities and found it daunting and intimidating but if we don't fight for the very best of care for our loved ones then who would?

On another hospital admission I have also had cause to challenge a Consultant and Registrar who were indifferent towards my husband's many medical conditions whilst supposedly caring for him. Neither seemed to be interested in doing their job.
I was proven to be right and they were clearly in the wrong...... I am still awaiting an apology from either, but I won't hold my breath!

Remember to try and find the time to look after yourself too. Take care now.

SylviaInCanada

SylviaInCanada Report 19 Sep 2017 17:42

Rollo .....

........ I send you my very best wishes for your mother, and for the meeting tomorrow.

RolloTheRed

RolloTheRed Report 19 Sep 2017 18:29

well I spent 90 mins with matron today, time well spent.

In today's NHS the matron is not a battle axe striking fear into staff nurses and beginners but rather chief exec with top notch management skills, hopefully.

My complaints about wrong use of oramorphine, delay of several days in surgery were accepted and I got an apology. Lack of resources and cuts were cited. Of course that does nothing to change my mother's predicament brought on in part by these errors.

Now the good bit. They have accepted to drop the "nil by mouth" and mother is free to eat/drink any morsel she can, they will keep her mouth moist and will model her menu from a list to be provided by my OH. Focus on easy to eat and lots of calories.
Otoh they decline to feed by tube.

We are down to support this for several hours each day. So if you know of a used Tardis (cheap) let me know.

From where we are now it may be too little too late but at least is a fair do.
Thank you for all the support it was very helpful when I felt like giving up.

You never know what you've got till its gone.




+++DetEcTive+++

+++DetEcTive+++ Report 19 Sep 2017 20:33

Good news, Rollo, of a sort. At least now your mother has a fighting chance <3

RolloTheRed

RolloTheRed Report 20 Sep 2017 17:56

Never count your chickens.

Despite the ruling of the matron that feeding by mouth should go on the guys on the spot refuse to follow the ruling.

One of the reasons they give is "planning" ... pinch me.

LindainHerriotCountry

LindainHerriotCountry Report 20 Sep 2017 18:44

Oh dear, that is dreadful, I hope you are camping on the Matrons doorstep, so you can get hold of her

SuffolkVera

SuffolkVera Report 20 Sep 2017 19:22

I am lost for words. You must feel as though you are living in a parallel universe at the moment. Keep making a nuisance of yourself and keep written notes of what is said and when.

Thinking of you and sending best wishes for your mother <3

kandj

kandj Report 20 Sep 2017 22:33

Rollo, this situation is unbelievable! I think you need to speak again with the Matron and insist that your mutually agreed plan is implemented on the ward ASAP.

I have learned from past experiences that polite requests to NHS staff fall on deaf ears and so you will need to push forward and insist your Mum gets the very best of care.

I wish you luck and remind you that you need to find time to look after yourself too.

RolloTheRed

RolloTheRed Report 21 Sep 2017 18:16

Yet another meeting nearly an hour.
The "team" backed off and conceded current treatment plan could continue inc by mouth and anything suitable I brought in. They will keep her mouth moist.

Mum's cognition has improved no end and she can enjoy family stories, answer her pref to quite complex questions. Cannot talk though trying. Her eyes are open, china blue. She is wiggling her toes. Breathing without oxygen. No severe pain, just liquid paracetomol.

Despite all this they still wanted to embark on "the pathway".

Lunch delivered by an "experienced person" (think: washerwoman in Wind in the Willows") was a tray with dry mash, an evil green concoction and something brown. A spoonful if the green stuff was dumped on her tongue, wiped off a minute later followed by the other two items in like manner. Person then vanished with the tray. No wonder malnutrition is a growing problem in NHS hospitals.

After that I was allowed to give her a few spoons of v soft tira misu which went down ok.

Thank heaven for the internet which allows you to be in two places at once + fast 4G connectons.

Tomorrow is another day. Thankyou for the support.

Rambling

Rambling Report 21 Sep 2017 18:34

Get some decent sleep if you can Rollo. I do hope your persistence will pay off.

On a practical note, blancmange is good, it slides down quite well when swallowing is difficult, soup if you can make it at home and take it in?

I am not surprised at the food 'quality', even when my mother was in 'just' for the broken hip, the food was poor and sparse, one sliced carrot and a small scoop of potato ( despite the 'problem' that she was a vegetarian I think they might have done better than that).

LindainHerriotCountry

LindainHerriotCountry Report 21 Sep 2017 18:45

I am glad they have backed off. It is ridiculous that they want to put her on the pathway when the operation was a success. All yo can do is try to feed her as much as you can. I know being there all the time is difficult, I have done it twice, for extended periods, but that was the only way my father got anything to eat or drink

+++DetEcTive+++

+++DetEcTive+++ Report 21 Sep 2017 19:03

Rather surprising they didn't suggest you tried to give her their slop. When someone is 'red tray' ed, the staff usually appreciate all the help they can get.

They do seem to have a problem accepting that a number of patients need moistened food to enable them to swallow. I've been told off when asking for extra gravy for my stroke victim father, but it was something he'd always needed.

Fight the good fight but remember to look after yourself.

LindainHerriotCountry

LindainHerriotCountry Report 21 Sep 2017 19:23

I took a tub of gravy granules in and made gravy every day for my father, so he could eat the meals, they were far too dry without that

RolloTheRed

RolloTheRed Report 24 Sep 2017 01:09

My mother has passed away.

Instructions from the matron following a 90 min meeting on Thursday and a family meeting with the doctor on ward Friday viz. continue drip painkiller, hydration were ignored.

I shall never forget the house doctor's beef that he had "planning" to consider and they "needed the space".

Anyway this morning I played to her a bunch of her favorite songs from youtube hands locked together rocking. She had a fine voice when younger.

sic transit gloria mundi


Allan

Allan Report 24 Sep 2017 01:21

My sincere condolences, Rollo

SylviaInCanada

SylviaInCanada Report 24 Sep 2017 03:32

My sincere condolences, Rollo xxxx

It is never easy when a parent dies xx

LindainHerriotCountry

LindainHerriotCountry Report 24 Sep 2017 05:57

Oh, I am so very sorry, there is nothing else to say at this dreadful time.

Shirley~I,m getting the hang of it

Shirley~I,m getting the hang of it Report 24 Sep 2017 06:18

So sorry for your sad loss