General Chat

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).

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.

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.

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

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

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.

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

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.

Rollo .....

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

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.

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

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.

I have been on the phone all morning. The NHS sure don't facilitate getting in touch with their key people. Expecting a meeting with the Matron tomorrow. I shall take all of the feedback from here with me.

I have experienced acute health systems in France, Benelux, the GCC and the USA. Based solely in that France, UK joint best for the health care at the point of delivery. The UK though has an organisational muddle which is compromising all the good work. It is also wasting a lot of money.

Here is an example. People with stroke or mini stroke symptoms need urgent assessment. The NHS web site tells sufferers to allow at least two hours for an appointment. Two hours plus is not urgent. In my case it was 14 hrs and recovery delayed.

Those of you who have fought and won v nhs must have remarkable stamina, patience and negotiating skills.

take care

I am so sorry to read this. I fully emphasise as similar appalling care and much worse after an op almost killed my father. The problem is that you assume the staff will do the right thing for the patient, but are reluctant to "make a fuss" at first.

If she can't swallow then there is no reason she can't be fed by an NG tube through her nose. When I realised that they were effectively starving my father to death by not giving him food and water, I stepped in big time and insisted that the ward sister made a written record of my complaints. This means she has to escalate it higher, so will actually start to do something.

Feeding through the tube saved my father and he had another eighteen months to live.

Of course there is the problem of her giving consent. The tube is uncomfortable and the natural reaction is to pull it out. After a few days because he was stronger my father did pull his out. Mercifully, it was on a weekend when only one consultant was on duty. It happened to be the geriatric lady who he had seen a few times previously. She knew him, so agreed to have one go at putting it back, but said if he refused she couldn't do it. Luckily he let her and afterwards had no recollection of having pulled the tube out and said he wouldn't have taken it out if he had known.

A few years later, incompetence in a failure to diagnose sepsis effectively killed my mother as well, so I have no faith at all in the ability of the NHS when dealing with old people. At one stage she was too frightened to drink because she had wet the bed because the nurses were too busy to be bothered answering buzzers. Having learnt from my father, I insisted the ward sister wrote down my complaints and there was an immediate improvement in the standard of her basic nursing care.

So my advice for you is insist on a meeting with the ward sister and or doctor and insist they record your concerns in writing. Also go and find the hospital PALs office and get their help in mediating for you

It is a pity that you do not have the new lasting power of attorney for your mother.
There are 2 types of LPA:

health and welfare
property and financial affairs

While many people make the financial one, not many people bother with the health and welfare one. OH and I have taken out both types, we have it arranged so that we will both be attorney for each other, then when either of us dies, the children will step in.
This gives us the right to make those medical,decisions which the hospital is talking about in respect to your mother.

I hope you manage to get them to listen to you

she has had a slow, weak swallowing action for a long time we just make the obvious adjustments. yet it is this which they say makes it too risky to feed her and as they refuse nutrients by iv as well....

everything was going fine before they gave her oramorphin which is not to be used on patients with weak kidneys. (source hosp guidelines). they claim to have rectified this error quickly.

imho if her strength was built ip she may be ok. She can make sensible answers yes/,no to questiond and recognises people by voice.

murder by protocol?

despondent

Second what Nyx says.

Also, if possible, take your wife or someother relative with you. They may hear or interrpret differently something that was said. Your head will be in such a whirl that you may miss something.

Ask why they aren't giving her thickened liquids by mouth or, if there is a good reason, when they hope to start that.

Oh Rollo I don't know what to say...

Ask the Dr if they have any reason to believe your mother had a stroke during the op ( they won't tell you unless you ask ).
Ask why she is not being given nutrients and fluids via IV if nothing can be swallowed.
Tell them that prior to entry into the hospital your mother was lucid and independent, and query whether the lack of fluids has caused a UTI and if so how is that being treated.

Go armed with a notebook and record what's said ( and note down now your concerns so you don't forget when under pressure) ... and, if you get no reasonable answers, 'suggest' strongly that any lack of care will be noted and acted upon.

Good luck.

well this is the current position.
she has an iv çonnection but it has no nutrients.
she has a weak swallow so she has been denied anything by mouth as "too risky'.

I thought the Liverpool pathway nonsense was history.
Seems not.

the surgery itself has been successful.

I have a meeting with one of the elusive doctors tomorrow.
What the heck can I do?

What are they on about? She hasn't given consent to be given liquids/nutrition ? What utter rot!
OK, you can't force someone to eat or drink, but you can cajole. Just as you might refuse a cup of tea at 2.30, you might welcome one at 3 :-|

Does your mother have other relatives or friends who can visit & keep an eye on her care while you're tied up with other events?

We do feel for you. It must be a living nightmare. Please look after your own health.

Well I often went in to see hubby was back on a drip because he was getting dehydrated
Am sure they didn't ask him do you want to be hydrated before they administered it

I often checked they were keeping up with his meds because he was on a 24 hour patch for his Alzheimer.

Yes it's been changed was one time a reply
Has it was my query cos it's in the same place as yesterday ????

Yes I did it myself. .sooo haven't you looked at how it has to be administered as it mustn't be in the same place within a 14 day cycle
Blank look from the nurse
I complained to the sister in charge only for it to be brushed off .
But the skin could develope a problem if wasn't rotated

Poor man just laid in the bed and they left him to doze and be quiet Cos it suited them