Sudden decline of Parkinsons symptoms after life threatening double pnemoni?nia?


#1

OH recently in hospital for 101 days. 2 days before admission they were mowing the lawns and a few days prior to that took part in our annual branch sponsored walk. No prior symptoms at all except a visit to our GP 10 days before due to swollen hands and feet which was ignored.

They lost a stone and a half whilst an inpatient; came home weighing just under 9 stone. Managed with proper food at home to gain 7 lbs in 7 weeks.Thinking of making an official complaint regarding their lack of care. Many other things were amiss, not least putting a catheter in when it was not medically necessary, just a convenience. Ignoring a cough 3 times which was a chest infection, not addressing other ongoing symptoms for months which has resulted in an urgent referral to a colorectal consultant.

Any advice appreciated as to what to do next or where to go with this?


#2

Hi Benji,
So sorry to hear of your partner’s extended hospital stay and what you have both been through.
You are certainly welcome to call our Helpline for advice about this and any other support you may need. Normal hours will resume tomorrow and you can call them on 0808 800 0303.

Best wishes,
Edwina
Moderation Team


#3

Hi Benji

One thing would be to find the British Medical Associations address and name of whom you should address correspondence to and give them all the details of your complaint. Make a copy of letter and posting address and note the time and date it was posted to them. Details should be found on-line or be provided by an organisation like CAB I should imagine.

It’s disgusting that you have been put in the position of having to do this, but sometimes people don’t complain enough, so it is taken as a respectable way of continuing with the way patients are treated. Hope your OH was not too traumatised by their actions or lack of them I should say. The nursing staff are under a lot of pressure these days and this should be pointed out to the BMA for the patients sake.

Sheila x


#4

Loss of appetite during an infection is common, and 101 days means this was a very serious infection indeed. So weight loss cannot be attributed to poor care.
I suggest you are lucky to have OH back home. A letter of thanks would be more appropriate.


#5

Thanks Sheffin.

It’s finding the time to spend on the computer these days when I can’t leave OH alone but I will do it.


#6

Peter C

The pneumonia did cause some weight loss but the infection was resolved within 3 weeks. Waited for a bed on a rehab unit and that was a bad decision in hindsight as rehab was minimal and weight loss was dramatic. On re admittance for another matter they continued to lose weight as meals were cleared before being given the chance to finish, (slow eating), or assistance.

There were other instance of inadequate care and lack of dignity as well as those previously mentioned.

Many other things were amiss, not least putting a catheter in when it was not medically necessary, just a convenience. Ignoring a cough 3 times which was a chest infection, not addressing other ongoing symptoms for months which has resulted in an urgent referral to a colorectal consultant.

So, NO, there will be no letter of thanks. I thanked the Professor in charge profusely as he had taken the utmost care in treating the pneumonia. I have no issue with him.

The complaint will be about the GP’s failure to listen to OH’s chest or order a blood test as it is a rare occurrence for them to visit a GP at all so should have been taken more seriously especially with an underlying, long term condition.

The other complaint will be to the local health board. OH was discharged, again with a cough that I had mentioned many times. Coughed all weekend at home so I phoned our surgery and was immediately prescribed antibiotics, and, a blood test the next day confirmed that it was yet another chest infection that had been ignored whilst an inpatient.

After the catheter incident on day 2, I started writing down everything that happened; 50 pages of A4 should keep the health board solicitors busy for some time.


#7

Yet another week of coughing so an emergency appointment today AND we saw the same doctor that did not diagnose a possible pneumonia.!!! I mentioned our previous appointment with him, (and therefore my present concern), prior to the pneumonia, and the ensuing consequences, and he went through all OH’s notes, (copious after so long in hospital) and guess what… he failed to find our emergency appointment with him.He rabbitted on about dates with our neurologist and PSN appointment and memory clinic appointments in the weeks prior, but could not find, conveniently, any appointment with him, even though
the neuro appointment was just 2 days after seeing him!! Selective amnesia!

Back home, and looking at last years planner, (very old fashioned I know), we saw this doctor 2 weeks prior to a hospital 999 emergency admission. All the signs were there, according to the main lead in the ward, a professor, BUT, they were missed.


#8

It must be so frustrating for you, I hope your OH get sorted and soon. You can’t seem to get any satisfaction from the GP’s these days, it’s like trying to get through a barricade trying to get an appointment yet alone a diagnosis these days!

I wish you both well - Sheila


#9

thought I was replying to a private message but it ended up on the forum by mistake


#10

Thanks for your good wishes, much appreciated.

Ro


#11

Hi Benji

On the old forum as we keep saying everything seemed so much simpler, and even sending a message was easier, you knew how and what to do and knew it went to the one it was meant to go to in private.

Anyway all the best - Sheila


#12

Hi Sheila
I’m still struggling with the new complicated forum!
What a performance!
Love
GG


#13

Hi Benji
Today the geriatric consultant told us my husband has 'hospital deconditioning '…he has been in hospital for 4 months and can no longer stand up or walk.
I looked it up on Google and it was like a light coming on!
It explained what had happened to cause such a dreadful deterioration.
There are lots of articles about what to do…a bit dispiriting as it will take a year to overcome…at least… but at least something to cling on to.

'http://www.uhnm.nhs.uk/OurServices/Elderlycare/Pages/Deconditioning-Awareness-Campaign.aspx

How come I’ve never heard of this before?
Does it explain something about your husband’s situation?
Love
GG


#14

Thankfully, Shefinn,as it contained personal information, I was able to delete it.

Anyone know what is the difference between an e mail notification of a post on the forum and an e mail notification of a private message? How to differentiate??


#15

It explains a great deal GG, thanks!

First admission was with the life threatening pneumonia and then, after 10 days at home, a second admission because they couldn’t stand or bear weight. Admission, and 2 days in an assessment unit confined to a bed, where I begged them to get OH out of bed but they wouldn’t… the worst possible situation for mobility. I can now see how his first admission may have caused the second one.

Discharged 8 weeks ago today and with me here 24/7 he has had no further falls, (lots of them in hospital), and from being under 9 stone he has gained 7lbs. He is walking a little better but still needs a 1:1 to walk, get out of a chair or to the loo. BUT, he is, thankfully,making very slow progress and I will willingly wait a year if I could get him back to anything like what he was before; even half way to that would be good as I envisaged no progress at all.

However, all those days in hospital, and, when I asked if he had been mobilised, staff thought that walking him a few metres to the toilet, once a day, was enough. I was there for at least 4 hours every day, mobilising him, taking in calorie laden foods, feeding him when necessary; staff had little to do when I was visiting and actually never had interaction with the other patients on the bay during the time that I was there. Too busy with paperwork etc.

All I can suggest GG is, if you possibly can, get him home ASAP and you will do far more for him than the hospital can. I am giving my OH an enriched diet which was never provided in hospital until Dietetics gave me a booklet on discharge… why not the same for in patients?


#16

Hi Benji,
The more I read the more I can’t understand why no one knows about this!
How on earth did they decide to keep my husband in a wheelchair when at Xmas he was walking with a stick?
Now he can’t stand up or walk.
Googling ‘exercise to fight deconditioning’ brings up lots of helpful sites.
I am working towards getting him home then the battle to get him to exercise begins!
I am not giving up hope!
Good luck…keep in touch…
Love
GG


#17

GG,

This sounds so familiar GG. The other thing is that assumptions were made…they only saw OH as he was then, sitting in a chair, and thought, well, he has had Parkinsons for 20 years, this is how he is. I showed them photos of what he was doing in the week prior to admission, mowing a large lawn and doing a sponsored walk, and even then they took very little notice. Probably put me down as a fussy individual and also delusional.

Like your OH, he was walking quite some distance after the pneumonia was cured, but then, after waiting for a bed on a rehab ward he went downhill as the physio was useless and did not take off from where he was previously, just started all over again, resulting in regression and not progression.

Likewise on their 2nd admission, MY OH need not have spent 101 days in hospital IF they had not assumed so much and IF they had had some liaison between wards. They caused bed blocking and a deterioration in his health.

The best thing, IMO, GG is to get him home as soon as you can.
Even now we are on yet another round of antibiotics for another chest infection but at least he is not on a ward with flu,( he was as an inpatient), or any other nasty conditions that are prevalent in hospitals.

Hi Admin.

Once again I thought that my e mail notification was a private message and not a new post on a thread. How do I know which is which???


#18

Hi GG - sorry to hear about your OH, hope you can get him back to some sort of normality. They (NHS) have made the mistakes and you are left to pick up the pieces! As if you haven’t got enough to do. But I wish you well and keep strong and focused for both of you

Sheila x


#19

:heart:️:heart:️:heart:️:heart:️:heart:️:heart:️


#20

Weird forum…why can’t it just show the hearts?