Worried now about future of NHS for Alzheimer's patients.

wazzer

Registered User
Jun 4, 2008
112
North west England.
Brief history-Mum was diagnosed with AZ in 2003, now classed as severe, doubly incontinent, no speech, totally immobile, has to be hand fed and no recognization of anybody, including myself, her son.
Anyway, myself and my wife had a phone call from mum's Care Home approx 7.30pm last Wednesday saying they had been in touch with the Doctor as mum had been vomiting all day especially after food and the Doctor then arranged for a ambulance which turned up at 9pm.
We followed the ambulance to A&E (which was in a main teaching hospital in north west England) and when we arrived at 9.15, it was full. We were at the back of a long line of patients in a corridor. Eventually we got into the assessment room where mum was put on a saline drip with antibiotics and transferred to another room within A&E about 11.30. At this point we were told that mum would probably be admitted for observation but they would wait for a Doctor to see her. I remember saying to two separate A&E staff that if mum stays in she will need help with feeding.
The Doctor arrived at 3.15am said that mum would be staying in and a ward would be found for her shortly.
By now, mum was fast asleep so we left her assured that she would be on a ward soon. I remember making a point to the Doctor that mum was not able to feed herself and will need help, to which I received a abrupt reply 'Yes, it's in her notes'.
My wife rang A&E early the following morning and was told they where still waiting for a available bed in a ward. Two more phone calls around lunch time proved fruitless as the phone was permanently engaged. I then finished work early at 2pm and went straight to the hospital. I found mum in the same A&E room that we had left her in 14 hours before but what really annoyed me was that there was an uneaten sandwich and a stone cold cup of tea at the side of her bed left within arms reach. The bread of which had now began to go hard. I appreciate A&E staff are hard worked but surely, I had told three people that mum would need help with feeding and it was in her notes.
Amazingly, within 10 mins of me arriving they came to move mum to a ward. What an amazing coincidence. Makes me wonder if I had not turned up, how long would mum have been there?
Anyway, for the next 48 hours mum received what I can only describe as excellent care in the ward. We were kept fully informed, she had help with feeding, toileting and turned every two hours. Excellent care.
But then, for some unknown reason she was moved to another ward were standards fell short again. Notes of what she ate were not kept. When visiting on the first night on this ward she was still on the saline drip and whilst we were there an alarm went off in her room but no-one came. It was then that we noticed her wrist was swelling enormously. I went and found a nurse who said the 'needle had gone into tissue'. What on earth would have happened if we had not been there?
Then last night when we were visiting a nurse came into the room and said 'Hello Doris' to my mum. We corrected her and said my mums name is Mary. The nurse then said 'Oh sorry, the Doctor has put someone else's notes in your mums file'.
The nurse then left the room.
Again, if we had not been there could she have potentially been given incorrect medication?
Finally, this morning I had a phone call from the hospital saying an ambulance had been booked for 2pm as my mum was being discharged back to the Care Home. We went to the Care Home at 3pm and they said she had not arrived yet but they had a phone call from the physio department at the hospital asking if mum was mobile or not.
She has needed a hoist for the last five years!!!!!!
Care Home said they would ring me when mum arrived. Nothing heard by 6.30pm so we went back to the hospital and on arrival at the ward we found out that she had left 10 mins previous but out of interest I asked what she had to eat during the day. For breakfast she had a cup of tea and a quarter of a weetabix!!!! They could not tell us about lunch and tea as no notes had been made.
Am I glad she is back in the care home where I know she will be looked after properly.
Sorry it is such a long thread but does anyone think it is worth putting in a complaint about the standard of care especially about the feeding aspect in A&E and the incorrect notes in mums file on the ward?
Is my experience now a common occurrence in hospitals dealing with patients with severe Alzheimer's?
Regards
Ken.
 

lemonjuice

Registered User
Jun 15, 2016
1,535
England
I have to say concerns about this were what prompted me to ask that my mother no longer be transferred to hospital. She had had 2 'visits and even 3 years ago she was on a pureed diet and despite with lots of prompting would take 45 mins to an hour to eat her meal. Every mouthful needed prompting,and she would certainly have starved in hospital.

One reason for having a NH as opposed to a Care Home is they can deal with anything a hospital can, including end-of life care.
 

LilyJ

Registered User
Apr 13, 2017
248
What an awful story. How this sort of all too common occurence happens I don't know? It really makes me mad, and so ashamed at times of the nursing profession, of which I used to be a part.
I'm so sorry that your Mum, you & your family had this experience ; there really is no excuse for neglect, even if the staff are extremely busy.
Yes, I would complain, if only to try to prevent it happening to someone else. You can find out who it is you lodge your complaint with from your local health board's website.
I hope that you won't have to go there again.
All the best.
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
One reason for having a NH as opposed to a Care Home is they can deal with anything a hospital can, including end-of life care.
My Husband was in a CH and they had end of life care in place for all of the Residents when needed. District Nurses and GP's visited every day.
 

lemonjuice

Registered User
Jun 15, 2016
1,535
England
My Husband was in a CH and they had end of life care in place for all of the Residents when needed. District Nurses and GP's visited every day.
The ones I visited said that whenever my mother would need any 'nursing care' she'd have to go to hospital, which put me off. Plus I was told that Nursing Care funding wasn't available in Care Homes.

I suppose it proves how important it is to do lots of research well ahead of time.
When my mother went into her NH 5 and a half year s ago:eek:, she'd just come out of hospital after recovering from heart failure and honestly I didn't expect her to last very long as she'd always insisted she'd 'rather die than be put into a Home' and the Dr said it would be very unusual for her to survive very long in view of her heart ischemia and Vascular Dementia, so i just wanted her well looked after. Then the carers all knew her and although I did a little research there was no other choice considering she had nursing care needs- despite being refused CHC.:(
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
wazzer, what happened to your Mum on entry to hospital and on the second ward isn't acceptable and you need to complain (via the hospital Patients Advice & Liaison Service - PALS). You need to do what you can to stop anyone else experiencing the same harm - making a formal complaint will achieve this.

Please document everything you can as much as possible (eg several individual members of the family may have seen the incidents; and you may be able to get hold of copies of the ward nursing needs assessments that accompanied your Mum at the various stage of her journey through the hospital - look for key information that's missing on one ward but included on other wards).

NHS staff are usually doing their utmost to cope with the consequences of government cuts and bad policies, extreme difficulty in recruiting qualified staff and all the rest of it. I imagine all of us have a lot of sympathy with them. That said, the administrative and nursing mistakes made might have seriously harmed your Mum if you'd not been there to protect her. Other patients won't have anyone to protect them.