Communication needs & problems in A&E

[Not so Rosy]

Last time Dad was admitted to A and E following an AWOL episode and a fall, everyone was lovely to him even though the place was heaving. Food and drink isn't a problem in our local one, there is a kitchen with a fridge containing what I would call picnic bags and you always get offered one. Also a tea and coffee machine for patients and people waiting with them to use.

Once finished in A and E majors you get shunted to a neighbouring ward which I would really call an overflow place. Basically a full squad descend, Therapists, SocialWorker, Doctors working under a Geriatrician who start to work out your needs and discharge Careplan. I really couldn't fault the speed or their quality of care. The nurses and careworkers on duty however were a completely different kettle of fish. Basically sat by their computers chatting doing the very minimum and refusing to take elderly people to the loo. Every small request seemed a major irritation in fact I took one lady to the loo myself and fed another one. It was a ward with 8 beds with only 5 beds filled, everyone elderly. I asked them to watch Dad whilst I nipped to the loo, I was honestly only gone a few minutes but Dad had gone AWOL by the time I got back.

Dad gets admitted for the night and moved to the Medical Assessment Unit, which I always think of as a euphemism for we haven't actually got any beds on wards at the moment but with any luck we will have you out of here quickly before it becomes a problem.

Early the next morning I get a call from the discharge team to come in to discuss Dad. On arrival Dad is all over the place, sitting in doctors/nurses chairs, going through drawers, bothering other obviously very ill patients, pressing buttons, you name it he was doing it because he couldn't find his (imaginary) car keys. He was disheveled, grubby and completely disorientated. I felt very sorry for my Dad that there seemed to be no understanding of his Alz/Dementia but hugely sorry for all the other ill patients he was disturbing and quite frankly making their life a misery.

They couldn't get rid of him quick enough. Discharge team promised a package of care had been put in place and an hour after getting him home it had. So a very mixed experience for me.

 

[nita]

Can I just point out how painful it can be for elderly dementia patients to lie around on gurneys/hospital trolleys for hours? Last time my Mum had to go to A&E, she had to wait over an hour in a corridor. Once she got into the clinic, nurses did quickly provide a trolley with a foam mattress which greatly eased her painful arthritic limbs, after uncomfortably lying in one position for so long.

 

[Not so Rosy]

Can I just point out how painful it can be for elderly dementia patients to lie around on gurneys/hospital trolleys for hours? Last time my Mum had to go to A&E, she had to wait over an hour in a corridor. Once she got into the clinic, nurses did quickly provide a trolley with a foam mattress which greatly eased her painful arthritic limbs, after uncomfortably lying in one position for so long.

Comfort, yes I so agree.

This wasn't my Dad but my husband. Terminally ill with a brain tumour, so his head felt like it was exploding. Three times in A and E towards the end with no pillows and nobody could be bothered to find one. As rare as Hens teeth was the quote when I kept asking.

Shame on you the Royal Surrey County Hospital.

 

[BR_ANA]

Facts:
-I live on Brazil.
-My mom broke her femur on January. (She didn't have marks of fall)

So
-She went to A&E because she "lost strength on her legs".
-Tomography, resonance said nothing on brain ( she has dementia stage 6-7, )
-Then she was on a neurological ward to discover what happened to sudden lost of strength. I told every nurse that she has to be moved to avoid pressure sores. ( even Spinal fluid analysed. )
-2 days latter a neurologist realised mom has a broken femur. (Finally)
-While she was waiting to go to orthopedist ward NOBODY move her => 20 hrs on same position => big pressure sores!


Conclusion:
1- it doesn't mean that if someone has dementia that all his problems are neurological.
2- all staff must know how move a person to avoid pressures sores (even with broken bones)
3- pressures sores mustn't be neglect.
4- avoid giving apples or other foot that are hard to eat.
5- if a doctor is going to talk to patient/family at 5 am, please wait some minutes for career stretch for a nigh on a hard chair.

 

[Onlyme]

I would ask that staff read up on compassionate communication. Often it can take time for verbal instructions to be understood. Leave a longer than usual gap while waiting for a reaction.

 

[Izzy]

* If the 'Butterly' scheme is in place in the ward I would ask that all staff read the patient's booklet in order to understand the patient better.

* Listen to and communicate with the patient's main carer.

* Allow the patient's relative/friend/carer to stay with him/her for as long as they want to throughout the course of the day if they want to. This will help the patient, the carer and the professionals.

* Ensure all professionals undertake training in relation to dementia awareness

* Ensure all of the above is in place in all wards, not just care for the elderly wards

 

[jeany123]

My husband has been in A&E a few times and each time I get tired of having to say " he has dementia" to everyone who talks to him, there should be some way of noting this and it being passed on to everyone who comes in contact with the patient, as my husband does not remember that he has dementia it either comes as a shock to him or just goes over his head, I don't know which to expect.
When someone talks to him and then looks puzzled when his replies don't make sense or contradict what he is there for I think oh here we go again,

 

[Grace L]

My husband had VaD.... He had a major stoke, and several TIA's...

After a year or so from the initial stroke, he developed severe epilepsy, this required hospital admission.
Eventually VaD was diagnosed.

On one admission, having come in my ambulance, (middle of the night) , A&E doc asks my husband if he has any chest pain...
Husband says ... "Yes"... Doc then gives him a pill (the one under the tongue) ...
Doc comes back later and says ..... "Hows it going with the pill?"...
Husband says .... "What pill?"
Doc (who's really tired and rushed off his feet)... Says "Didn't I just give you a pill?"
Husband says ... "No"....

I'd already discretely told the ambulance staff and nurses in A&E about the VaD diagnosis.

If I had not been there to verify that the doctor HAD given my husband a pill, he would have given my husband another one.
(PLEASE DOCTOS AND NURSES ..... Makes sure you sign immediately if you give medication)....

And also...
This was much later on his VaD .... aggression was a problem.
Do not leave sharp objects scissors, syringes etc... near an aggressive VAD patient.

 

[CJW]

Just a big small point...dementia patients dont neccessarily say when they need the loo, or are hungry, thirsty or in pain. A nurse walking past, and asking if they are ok will probably be told yes even if they are wet or worse, or suffering. My mother always tells everyone she is fine except for me, but when I say she is in pain the docs/nurses turn round and say no she said she is ok...

 

[Oxy]

So true, they are most comfortable talking to the person they are closest to, hence the need for flexibility regarding visiting times at all times-not only at whim of staff in charge at the time.

 

[Annebags]

Some excellent points already. Based on my mum's most recent hospital admissions, I would say:

1) toileting - assist the patient to go every four hours whether they ask or not. My mum will never ask and we were in A&E nine hours.

2) give Carer some idea of waiting times. I too spent nine hours crossing my legs just in case at the vital moment of going to the loo, the doctor turned up.

3) If using the Butterfly scheme, and my mum's local hospital does, ensure that all nursing staff know what it is and how to use it. Sadly not the case.

4) If Carer is absent, do not leave patient with menu sheet to fill in - impossible for most dementia patients, if not all

5) Once on ward, ensure that patient's bed is in a position to enable eating and drinking. Sounds obvious but frequently not done.

6) Consider small finger foods rather than huge jacket potatoes. Most could cope with cheese and biscuits or soup; very few people can cope with cutting up a potato in bed.

7) When speaking to the patient, FACE THEM. Make eye contact and smile; offer reassurance. Speak slowly.

8) Do not leave tablets for patient to take. If anything like my mum, they will be wrapped in a tissue and hidden under the pillow.

Also, a radical idea, if dementia patient has carers at home, could that service not continue in the hospital? Carers could visit to assist with feeding and washing.

I think your leaflet will be a long one .... Good luck! Anne

 

[Beate]

And in case it hasn't been mentioned yet, don't discuss illness or give diagnosis and treatment options etc. to dementia patient when they are on their own - they will neither understand nor remember anything! Wait till carer is around! I couldn't care less about "data protection" - if you only speak to dementia patient about this, you risk their well-being as they cannot digest this information!

 

[Isabella]

Not sure if anyone has mentioned this, but I;ve had so many problems with personal belongings when mum's been taken to A&E without me with her. On one occasion she lost her glasses, house keys, handbag with wallet and bank cards. I know hospital staff are lookng after the patient's more urgent needs, but please can they be aware that someone with dementia isn't going to be able to take responsibility for their own things. Mum then ended up being transferred to another ward where she didn't have her glasses, so as well as being extremely confused she couldn't see a thing which made matters so much worse.

Eventually I found her belongings were in the A&E office. If only the reception staff had checked her drivers licence they would have realised she was still in the hospital and they would have been able to return her items to her. Having her specs would have made her feel a lot safer and made it easier for her to cope in unfamiliar surroundings.

 

[clareglen]

Get staff to read the notes! My mum currently in hospital after coming in through A&E. It was 8 and a half hours from coming in to me being able to go home from the ward at 4am. But even though I said she had dementia some staff in A&E weren't very compassionate. One got really cross with her because she couldn't do what she was being asked & I said 'she has dementia it takes a bit for her to process things'. The nurse became more compassionate because she obviously hadn't read the notes. So as some have already said mark it big on notes or implement the butterfly thing.

 

[PamD]

Top priority: Allow carer to be there all the time that they can - when Mother was in Acute Surgical Unit with a broken pelvis last year, most of the staff thanked me for being on the ward roughly 8am-8pm, but one or two pointedly said "It's not open visiting on this ward, you know". She needed me there to help with menu, answer questions, keep her contented, etc. Then last month when she was admitted by ambulance 10pm I sat with her all night in A&E and then on ward, preventing her from removing the oxygen mask "Yes, Mother, I know it's noisy and you can't sleep but oxygen is more important than sleep tonight: keep the b****y mask on!".

Butterfly scheme / "This is me" form, or whatever: yes, use it as much as possible. Mother's care home had the sensible idea of getting it filled in in advance and put in a file which would accompany any patient into hospital ... unfortunately they hadn't fully implemented it yet, so I had to fill in the form again in the hospital having carefully filled it in for the home. While she was still living at home, I had a copy of the "This is me" stored in the fridge in the emergency information pot supplied by local charity, along with their standard form: the idea being that if emergency services were called to the house they'd know where to find the information, and I was supplementing the standard info with extra info in case she ever had to be ambulanced into hospital without me being around. (Not sure how common this pot-in-the-fridge scheme is, but it seems really sensible: an identifiable plastic pot in the back of the fridge is findable in pretty much every house).

On the whole we were very lucky with both her 3 weeks last year with the pelvis, and her 14 hours last month: she died unexpectedly but very peacefully, having been very well treated by all the ambulance and hospital staff. But I'd echo the problems about loos: she wanted to go quite often and we sometimes had to wait for someone to come with a bedpan, and I was always worried to pop out to the loo myself in A&E in case someone came to her cubicle while I was away.

I'm delighted to hear that someone is looking into the problems of dementia patients and A&E. Getting the car parked on arrival, somewhere it can be left for a totally unpredictable time, is another nightmare of course. I had to rush out at 10am because I'd parked on a "only 2 hours 8am-8pm" spot, and shift the car to another "only 2 hours" spot; when she died at 12.05 I was fretting about the car but one of the staff went out and put a note on it to tell traffic warden to contact the ward before ticketing it. Just another level of stress. (Did I think to use her blue badge? Can't remember.)

 

[Oxy]

Always have wheelchairs that are in good working order to hand for all times when needed in hospitals. Fed up of running the length of hospital looking for one. Have adequate disabled parking lots.

 

[henfenywfach]

you hquite atask aheadave

Dear Talking Point forum members,

My name's Guri & I'm currently a junior doctor based at the Conquest Hospital in Hastings. I have a particular interest in dementia having cared for my late grandmother who died with Alzheimer's.

As part of a national project to help improve communication between healthcare staff & patients & their relatives/carers in A&E, I have been asked to produce a leaflet which provides essential information for patients with dementia & their carers at point of hospital admission.

I have several ideas for the leaflet, but I thought it would be a good idea to hear from carers directly about experiences they've had, & information that they feel would be helpful to know. I would be very grateful for any feedback.

Many thanks,
Guri

Have been to a and e this week with my dad who has dlb! He has his I have dementia card that the society give out which says have patience with me please..this is what I have and who to contact...Our health board have listened and have a dementia scrutiny panel which will be looking at what carers like myself think. firstly.. before completing the leaflet the families need to be confident that staff have dementia training??? and lets face it if you go to a café you expect to see their hygiene qualifications! what dementia friendly training have they had.. use the society dementia friends flower maybe with their permission obviously at the desk to show they are dementia friendly and trained?

the this is me leaflet is fab..has to be used at all times. Basically as every individual is different and affected by different things there should be a leaflet saying our ability to help and reassure you is as individual as you! meaning if listening or suggesting a quiet area helps or saying that you understand that the patients environment can affect their medical symptoms...The journey from clinic or a and e to admission is an unpleasant one for everyone but to understand and minimise making things worse for both carer and patient is paramount!!!! eye contact with patient and carer or family member..respect and dignity for the patient and carer...dignity and respect from staff to patients delivers good quality care. some people are quite embarrassed when being asked questions about the patient at reception desks..mindfulness matters!!!

firstly looking at the environment and seeing it through the eyes of a person with dementia would help..alzheimers society can do such a thing. there should be a dedicated member of staff that is dementia dedicated not necessarily for treating patients with dementia but just to to do a 2 minute assessment to ensure that that particular shift is mindful of dementia.

I would suggest ..... information - able to talk openly honestly in confidence and with repsect to someone that has dementia training.
reassurance - that you will be treated with respect and dignity and so will the carer or family member.
understanding of the surroundings and how it can be adapted easily to ensure a visit to the dept and the stress it can cause is minimised.( without cost to the hb like quiet room no loud tanoid, temperature controllable.. not too hot not too cold)
being kept informed and aware of time and delays having an impact.
Age appropriate treatment....(young people also suffer from dementia its no longer the older persons disease)
support - offer further information of charities and support agencies.
mindfulness..respect... dignity...information sharing..offering information.

This could be roled out into outpatients and day clinics and day surgeries as well as care on the ward.

I wish you good luck