Hope so. My sister was supposed to go in to see him today while I was at home with the carpenter (who didn't show up … grrrr …) but then Mum needed the paramedics as she was ill, temperature and super confused. Fortunately no trip to hospital for her, just stronger antibiotics. I think she maybe had another TIA - weird behaviour which only lasted an hour or so then she miraculously returned to normal (ish) again. I spoke to Staff Nurse on Dad's ward. No change for him, but they said he'd be ok if we didn't visit today. Good grief, we must be screaming louder because the rollercoaster ride is getting faster and faster ……!I thought it was ironic that staff referred family to the dementia team 'so that they can understand dementia' when they clearly had little understanding themselves. It was really worrying that every issue was put down to 'dementia'.
Hopefully your Dad's pain will reduce with the patch. It usually takes 3 days for it to get to fuĺl strength.
JOHN'S CAMPAIGN
- Thread starter maryjoan
- Start date
This was a life saver for me when mum was in hospital, but ... although the Trust had signed up to it, it was proudly stated on their web site ... reception, ward staff, in fact everyone I spoke to denied any knowledge
Fortunately I was well prepared & I wouId highly recommend printing off the relevant pages from the site & having a copy to hand for any hospital visits (handing a copy to the nurses station works wonders)
Print off:
1. The brief summary of what Johns Campaign is
2. The page showing your hospital has signed up to Johns Campaign (
https://johnscampaign.org.uk/#/group/east-sussex-healthcare - East Sussex)
3. The Trust web page stating then have signed up & “ welcomes carers whenever the patient needs them”
Despite this I was repeatedly told I could not visit outside visiting times by Ward Sisters, I referred then to the print out left “at the desk” & that I wouId be staying to ensure mum ate & was kept hydrated. The nursing staff soon accepted that by being there I reduced their work load & we worked together
Our local hospital had it which meant we could visit Dad at any time when he was in hospital earlier this year. There were relative rooms that you could stay in too. Everyone was very understanding and supportive.
I spoke to dementia nurse, who had heard of the campaign, but didn't say much more about it other than that. I'm too mentally exhausted to get into fights with the staff about it now. When things are critical I get feisty, but otherwise I'm just cowed now (is that the right word/spelling?). You know what I mean. Pretty much given up, just doing as I'm told and hoping it doesn't all go too wrong.
Hi @VerityH
I’ve had a reply & have been asked for the Trust ....
I was not attempting to encourage anyone to join me in a campaign, just asking on your behalf, if a hospital might be expected to sign up in the future
If anyone wants to find out, please contact the organisers of Johns Campaign as per the contact details on their site
My apologies for any misunderstanding
I’ve had a reply & have been asked for the Trust ....
I was not attempting to encourage anyone to join me in a campaign, just asking on your behalf, if a hospital might be expected to sign up in the future
If anyone wants to find out, please contact the organisers of Johns Campaign as per the contact details on their site
My apologies for any misunderstanding
Countess of Chester Hospital. They have a (one? really? I've never seen another one) dementia nurse, who is sweet and sympathetic.Hi @VerityH
I’ve had a reply & have been asked for the Trust. Can you either let me know on here, or PM me if you wouId prefer & I’ll pass it on
Anyone else with a hospital that have not signed up, let me know & I’ll pass them on too
I always say ... don’t ask ... don’t get
Thanks for looking into this - I am constantly amazed by the lack of understanding of dementia, given that a huge number of hospital beds are filled with people with the condition.
It's weird on the website as John's campaign is mentioned but then you click and find out ithe is only for the cottage hospital at Ellesmere Port not the main Chester site
Yes Ellesmere Port seem to have embraced the campaign. No mention of it at all on Countess website, and dementia nurse just said she had heard of it.
Hi @VerityH
Have I got this the right way round? Before I reply ...
Countess of Chester Hospital only have one dementia nurse, who is sweet and sympathetic.
Ellesmere Port seem to have embraced the campaign. No mention of it at all on Countess website, and dementia nurse just said she had heard of it.
Have I got this the right way round? Before I reply ...
Countess of Chester Hospital only have one dementia nurse, who is sweet and sympathetic.
Ellesmere Port seem to have embraced the campaign. No mention of it at all on Countess website, and dementia nurse just said she had heard of it.
I don't KNOW whether Countess has more than one dementia nurse, but I have only met one, a lovely girl called Jenny. Yes, Ellesmere Port has mentioned John's Campaign in their website info, but nothing that I can see on Countess website (Ellesmere Port is mentioned on the Countess website - don't know if they are affiliated? But if they were, you would think they would both be enacting support for dementia patients in this manner?) I did ask Jenny about John's Campaign and she said she had heard of it. We were deep in conversation about my dad, so I don't think I pressed her any further than that as there were more urgent things to discuss. I didn't see her today.
Ellesmere Port is part of the same trust as COCH and is a couple of satellite wards effectively, and is known locally as the cottage hospital, as far as I know elderly patients are transferred out to Ellesmere port from the Countess, and the consultants are from the Countess, there are only 2 wards which I think are all elderly, and would only go to Ellesmere Port from Countess, not a direct admittance. I know of friends whose parents have been moved there from the countess, however I have only used the drop in blood testing as nearer to me than COCH (about 3 mins instead of 10).
The Ellesmere Port phone numbers are all via the countess switchboard, seems odd that Ellesmere Port has the John's Campaign info but not the whole hospital.
All info for EP is on the CoCH website, it doesn't have it's own website.
It is a few years since my mum was in the Countess (with pneumonia) but the ward she was on certainly didn't have a clue about dementia, and protocol and how to manage it. Whilst on the ward mum was fine, discharge was another story.
We're getting close to discharge now. I expect dad will go back to care home he was in before he was admitted to hospital. They're not brilliant, but we'll give them one more chance. He was taken into A&E twice and admitted once during the last month, not necessarily the care home's fault, but I'll expect them to be keeping a closer eye on dad from now on, or he'll just keep ending up in hospital. It's such a worry.
Just to update this thread with the disasters which have befallen poor dad as he is in hospital with dementia. Discharge happened all of a sudden - discharge nurse unaware it had been arranged, dementia nurse unaware, ward manager unaware … currently it appears a member of staff had taken it upon themselves to initiate booking of transport etc after a visit from the care home concluded that he could return there. (MDT meeting has concluded for over a week that he was 'medically fit' but needed to get his back pain managed before discharge). My sis was with dad for 1.5 hours before a wheelchair arrived to take him home, in cotton pjs, in about 2 degrees. Sis said wait I've got some clothes and a coat in the car. Dementia nurse, who was on hand, sent sis away as she could see she was about to explode, and dressed dad. As sis drove to carehome, ward manager phoned to apologise for cock up and said she had been 'shellshocked' to hear of the discharge. Dad arrived a few mins after sis with a dangling catheter and no stand. Sis had to go to work for an hour (teacher with a private pupil), within 5 mins of her going dad had ripped the catheter out as he obvs didn't know it was in (5 second memory span). District nurse called. Couldn't find all of catheter so sis called back to take dad to A&E, where he was finally readmitted to hospital at 2.30am. It now transpires he has 14cm of catheter tube stuck in his bladder and will now have to undergo surgery to remove. ALL BECAUSE THEY CLEARLY HAVEN'T FOLLOWED PROCEDURES AND HAVEN'T BEEN COMMUNICATING WITH CARER, WHO WAS SITTING IN WARD WITH DAD AT THE TIME DISCHARGE WAS BEING ORGANISED!
Sorry for caps, I'm furious. Another day has passed and they're discharging him again. Now they have failed to add his painkilling patches to his prescription (it took them 2.5 weeks in hospital to get his pain from fractured spine under control, which was why he was in so long and its being resolved was the only reason he could be discharged).
Is it me? Or is the NHS broken? The individuals are all (most) lovely and seem to care, but their understanding of dementia seems to lead to money being spent on a 'memory corridor' outside the ward (I kid you not) rather than providing training for staff to understand the condition and that dementia patients often need their 'translators', i.e. family or carers, to be there for them. The patients on dad's ward couldn't move or communicate, let alone get out of bed and look at some jolly old pictures of wartime Blighty. This series of cockups (and there were more I haven't bothered to mention here) could all have been avoided if they followed procedures and actually allowed the family who have POA to be present when doctors visit and decisions are made. I appreciate not all dementia patients have available family, but my dad has two daughters, both who've given up work to care for the parents as it was interfering with our jobs too much, and who can cover 24/7 if absolutely necessary (though clearly not desirable!).
Aggghhhhhhhh!
Rant over. Sorry.
Sorry for caps, I'm furious. Another day has passed and they're discharging him again. Now they have failed to add his painkilling patches to his prescription (it took them 2.5 weeks in hospital to get his pain from fractured spine under control, which was why he was in so long and its being resolved was the only reason he could be discharged).
Is it me? Or is the NHS broken? The individuals are all (most) lovely and seem to care, but their understanding of dementia seems to lead to money being spent on a 'memory corridor' outside the ward (I kid you not) rather than providing training for staff to understand the condition and that dementia patients often need their 'translators', i.e. family or carers, to be there for them. The patients on dad's ward couldn't move or communicate, let alone get out of bed and look at some jolly old pictures of wartime Blighty. This series of cockups (and there were more I haven't bothered to mention here) could all have been avoided if they followed procedures and actually allowed the family who have POA to be present when doctors visit and decisions are made. I appreciate not all dementia patients have available family, but my dad has two daughters, both who've given up work to care for the parents as it was interfering with our jobs too much, and who can cover 24/7 if absolutely necessary (though clearly not desirable!).
Aggghhhhhhhh!
Rant over. Sorry.
