Communication needs & problems in A&E

[GsB]

Dear Talking Point forum members,

My name's Guri & I'm currently a junior doctor. 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

 

[CJW]

Hi Guri,
How wonderful someone actually wants to know what we think! below are some of my observations re A and E. My mother was admitted to hospital via A and E last april. Alerted by a neighbour that she was very strange, and the emergency team having refused to go out to her because the carers, 3 times a day for meals, said she was ok, I drove from London, 3 hrs, and found her on the street with her bag full of knives trying to escape from the americans and get to the airport. I could not get her into the house so told her I would take her to the airport. Luckily the hospital looks like an airport!!!! She waited in the waiting room while I checked in and we were quite swiftly taken through and seen by a doctor. My mother was very distressed and abusive with me. The doctor was very kind, realised the extent of the problem and mum was admitted and subsequently released to a care home.
Regarding her time in A and E. The assessment process is painful for dementia sufferers who feel they are being tested,and brings out all the frustration and anger they feel at not being able to answer the questions. My mother was so obiously out of it that it would have been kinder to admit her and then let her calm down before testing her. As it was she lost the plot and became violent. It would also have helped if there was one person, nurse or assistant to stay with her throughout and with whom she might have gone quietly to the ward rather than have to be forcibly taken.
My mother should have been in a care home for the six months prior to her visit to A and E but her refusal and the GP and Social services insistance that she should stay at home although she was refusing help from me and the carers etc and living in a permanant state of stress, losing weight through not eating and unable to keep herself or the house clean meant that the A and E doctor was the first person to hear what I had been saying, writing and begging for help about for months.
My mother should never have had to reach the stage where she had to go to A and E.
In my opinion by the time a crisis leads patients and their carers to A and E there is no requirement for information. Just kindness and compassion for both patient and carer do the trick. the communication problem comes once patients are admitted when there is no real way to liase between Drs and carers and the patient is treated as they are percieved to be and not as they really are. Mum's Dr thought she was admirable, especially interested that she had worked for the ministry of defence during the first and second world wars. The fact that she hadnt been born for the first and was a teenager for the second hadn't crossed his mind!!! I think the most important thing to understand is that carers tell the truth and they have vital information that can speed up correct diagnosis and treatment and effectively get the patient out of the hospital much faster.
Great good luck with your project and hope this has helped.

 

[teahound]

Hi Guri,

I think it's so lovely of you to be doing this, thank you.

I had to take my mum to A&E with a broken wrist recently. I'd like to echo what CJW said about kindness and compassion. The person we saw in A&E first was lovely and so kind to mum. It made such a difference.

I was very worried as mum has always been stoic and now can't really communicate when she is in pain. The ambulance staff were also very kind but thought it was just a sprain as mum was happily singing. I think knowing that staff have an awareness that people might not respond to pain normally or be able to communicate this would be reassuring. My mum has to be quite closely observed for signs something is wrong and even then it's not always easy to spot.

Another thing that worried me way more than mum was that when we were waiting she kept wanting to use the toilet. I was worried that we might be in there when her name was called. I couldn't wait outside to listen as I had to help mum. I felt bad bugging staff after each visit to see if we'd missed her name being called. If there was a way to deal with this please that would be great.

The only other thing I found was if it is possible to give an indication of waiting times please. It's useful to know so as a carer you can help reassure or distract a bit better because you know it either won't be too long or that it will be a while. I think it was easier with mum when I could be a bit more certain that we wouldn't be waiting too long as I could reassure her when she repeatedly asked.

Thanks again and best wishes with your project.

 

[Oxy]

Following apply to non dementia patients too but I feel they all affect dignity.

1. Some need the toilet quickly and it increases stress if they have to wait an inordinate length of time. Would the so called professionals enjoy seeing a care assistant sauntering along to get a commode/ bedpan when they are desperate and know they can't hold on for long. Show carers how to raise/lower bed so they can help get them to toilet if they can.

2. Hard of hearing patients need to speak to staff who speak clear slow English -not a strong regional accent-no good shouting-it frightens. I never shout to be heard. hearing aids are designed to be worn. A countrywide problem is that patients especially on the wards or after a night in A&E do not get their hearing aids put in for them I do not expect a nurse to say 'I had to shout at her to hear me.' Put the aids in-it doesn't require a PhD .this is loss of dignity as you appear stupid when you are not able to hear.

3. Sight impaired people which can be through a number of eye conditions or dementia need dignity upheld. Read the menu to them. Wait for a reply. Don't just give food they would not eat at home-you only get better with nourishment.

4. Net knickers that go with pads are expensive. I order them in from supplier. NHS only gives 5a year. They are £1 a piece. Please ensure that soiled ones are returned to carer and not just thrown away. Some IV antibiotics cause the faeces to run from the bottom-they can't help it but just thinkof the carers and patient. Most of us have a washing machine.

5. Elderly and dementia patients are more susceptible to infections than the general population. Individuals surrounded by the Border force could conceivably bring infection like TB with them. Therefore please treat in separate room. Same applies to criminals as it is frightening to have police by a bed near you. Similarly those vomiting should not be placed next to elderly.

6.a patient who is accepted and expected should be shifted through the system quickly. When ill confusion is at its greatest.

7. Have spent many hours in A&E at night. Please provide us with a chair -even when young we have possibly had a long stressful journey after work to get to A&E to our loved ones and then have to stand!!

8. Don't expect loved ones to collect their relatives in the middle of the night. Not good for patient and can cause more work as we may return in an ambulance having had an accident!!

9.just ask questions once. It seems every so often someone appears and asks same questions already asked. Waste of time and confusing.

10.Treat carer with respect. Usually happens but last time a junior doctor treated me like a naughty child.
11.Everyone must sing from same hymn sheet. Nurse and doctor should give same diagnosis eg UTI. If in doubt retest don't just send home with a UTI. Costs more in the long run because they will fall again!!!

12. If you are told by carer the patient is known to be difficult to bleed then give them an experienced person to take bloods as it is painful being a guinea pig to someone who has only practised on an orange. Result more stress and more need for a commode.
13. Dementia patients feel the cold more. Give warm blankets over gown-not just a thin cotton affair.
14. Listen to the carer. The patient may not be able to tell you what happened. Please understand their needs.
15. If the patient wants the carer in with them all the time-allow it-rather than them calling through curtains all the time. We do personal care so have seen them naked before!
Sorry-I realise this is not quite what you wanted but I feel especially strongly on these issues and have an unhappy person next tome who wants attention and go to bed.
Hope your studies go well for you.

 

[fizzie]

This is lovely, I can only echo everyone else's comments and wish you the very best in your career.
The toilet is definitely a problem and long waiting times are really difficult - it is so hard to distract and the more tired they become in an unfamiliar environment the worse it gets. We don't make children with autism wait for hours (I have a son with autism so this isn't a dig) but we seem to think it is ok to leave 90 year olds who get cold really quickly and who have memory probs so 1 minute seems like a day, to sit for hours because they are adults (hmmmmmmmmmmmmm).

The saving grace for us is always the nurses - most of them are angels and understand and are kind and compassionate.

We are lucky but a few tweaks would make us even luckier

 

[Jessbow]

Use the 'This is me' form that is already available. Have then in a designated place - VISIBLE- and makes sure everyone knows to refer to them. Having taken an age to fil one in in great detail, it is Extremely annoying to find in under 4 nighties in a drawer

 

[Linbrusco]

Just my opinion from the other side of the world, but am sure the same could be said anywhere.
Having had Mum with Alzheimers in hospital for bowel surgery, and Dad with cognitive impairment in hospital for prostate surgery, when doctors are doing their rounds and if a carer or family member isn't there please do not discuss anything of importance or give a medical diagnosis.

After Mums surgery and pathology results came back, her surgeon and registrar went to see her early that morning, just 30 mins before I was going to be there ( which the nurse knew)
The phone call I got from Mum ( that the nurse dialled for her) was a rather garbled one to say that she had had her xray and her chest was clear and everything was fine.
A frantic call to the registrar resulted in him saying " your mothers lesion was just pre cancerous, with no spread to her lymph nodes, so no further treatment was necessary. Her chest MRI scan was clear, apart from some swelling in lymph nodes from her Chronic Lymphocytic Leukemia but no concern at present"

When Dad was in hospital for his prostate surgery, the surgeon saw him and discharged him before I got there to pick him up. I got the discharge summary, with no mention of a follow up appointment, but Dad was insistent that he was told that he would get a letter in the mail. No, I had to phone and make an appointment. If I hadn't questioned this knowing Dad, we would have been waiting weeks for a non existent letter.

Things like this really bring to me boiling point.

 

[lovesmiles]

Great Idea

Hello

Firstly I would like to say what a great idea - I have had both massively negative and a very recent positive experience in hospital A&E's with my grandmother who I care for.

1/ Staff being friendly and understanding the background of the patient - this is so important.

2/ If there is a carer with the patient, understanding that they are the best point of contact and not asking them to leave the room - understanding that the job of doing obs/taking blood/putting in a canula can be very distressing for those with Alzheimers so having someone that they are familiar with can be very useful for both the A&E staff and the patient at putting their mind at ease

3/ I agree with the point about toileting - in both instances I have stayed with my grandmother day and night and found that elderly patients are unfortunately left waiting a long time to get a commode/bed pan (this is often down to staff shortage). In addition, if you are far gone and cannot ask for help, as with a lot of patients, it is down to the staff to check on them every so often - many times the night staff for example will 'ask' the patient if they have wet themselves - an answer many patients with alzheimers cannot give

4/ Let a carer stay the night if they are admitted - speak to the ward sister on their behalf and explain the situation. I have previously had to fight for this right and to be honest, I ended up being the nurse looking after my grandmother. Granted not everyone will want to do this but if they want to, it should be allowed.

5/ Often when going to A&E, you will have to repeat yourself about what happened, the medication, the medical history several times. It would be helpful if there was a document which was read and carried through, I also think there should be sign when someone with dementia or alzheimers is on the ward so that extra care is taken with communication and reading the background.

6/ To ensure family and/or carer is around (and are aware) for the doctors ward round - these are usually not in visiting hours which makes it difficult but carers should know that they have a right to be there during this time.

I honestly think this is an amazing idea and would love to be of further use if you so wish, please contact me via here.

All the best
x

 

[loveahug]

Please, please, please implement the butterfly scheme!

http://butterflyscheme.org.uk

 

[annie h]

Hi Guri,
Fantastic news you are doing this. I am currently involved in a complaint about a relative’s treatment in hospital including some things in A&E so I certainly have some things to add:
1. Something signposting the relative as to how they can get it across to the staff that their relative is more than just a little forgetful and has profound cognitive difficulties without having to say it repeatedly in front of the relative (in practice usually at the point that a nurse is asking you whether your relative usually has problems remembering which day of the week it is or did they hit their head! Why do they expect AD sufferers to know who the Prime Minister is and what month it is?)
2. Can you get some sort of symbol added to the plastic wrist band they are given so that the identification of advanced cognitive impairment is conveyed to all staff without having to go through the same process with everybody?
3. Something explaining about how relatives and the patient can expect pain to be assessed ie presumably your A&E department will have an approved method for pain assessment in patients with cognitive impairment. Carers need to be aware that different pain assessment methods may be appropriate if their relative has relatively advanced cognitive impairment as not all A&E staff seem to realise this (how pain was assessed forms a part of my complaint) and carers may not themselves recognise that pain is being assessed.
4. Something making them aware of dementia support available at your hospital (do you have a dementia support team for example) and of the This is Me form if you use it for in-patients at your hospital. I wasn't told about This is Me when my relative was first admitted.
5. Something telling the carer how they can get temporary assistance to get away for a few minutes eg to make urgent phone calls to family members without their relative doing a runner or getting upset whilst their back is turned.
...and of course the toilet issue already identified.

 

[Oxy]

Hi Guri,
Another thought that has occurred to me is communication between A&E and AMU and then ward. Also night and day staff don't always pass info on which can be frustrating. I was once told I need not come in next morning as they had a particular drug in stock. Next morning pharmacy rang me about it so clearly night and day staff had not communicated.
However whilst I sounded negative in previous post these are points that need improvement. There are however many, many kind and helpful staff who I don't want to forget. Most staff are kind but there are systems that need improving. Staffing may well be the answer which is a political issue re funding.

 

[Beate]

As soon as someone tells you a patient has dementia note that in LARGE LETTERS in all the notes and make sure EVERYONE who treats them knows!

Ask nurses and doctors to speak clearly and simply but don't treat the patient like an idiot - speaking more loudly is not always required!

Let the carer be present at all times and let them answer questions the patient can't answer and also when a patient gives an answer and the carer corrects it, please believe the carer and not the patient as they get confused!

If the patient gets agitated, try and create a calm environment - do not automatically reach for the tranquilisers! Dementia patients cannot cope with too many people at once so don't turn up with 2 doctors and 4 nurses unless absolutely required!

Be patient, calm and friendly at all times! Explain what you will be doing! (I.e. don't just produce a large needle and say "sharp scratch coming up.")

Do NOT restrict carers to your usual visiting hours - they will be able to make your work more effective too if you let them simply by being there and calming the patient down.

 

[Oxy]

Beate, I agree with your post and would like to particularly point Guri to last point too.visiting hours are variable. Last time C was in hospital they were more accommodating because people were very ill but if I could have been there for menu time, the food would have been liked more. C cant see and clearly noone had helped with reading and ticking menu options.

 

[Jessbow]

Gosh, a simple thing like a wrist band would go a long way, wouldn't it?

Standard white with the name on - a red is used if there is an allergy
Why not introduce a purple one ( or another defining colour) that means the patient is diagnosed with Dementia? Dr spends half his life checking wristbands - would be an obvious clue!

 

[halojones]

Hospital

I have to say how important all this information is,so thank you all for sharing..I only had one experience of the hospital so far with mum, and it was so awful and undignified for mum, I just cried after..I will be prepared now,I will get a This is Me form and enquire if our hospital is part of the butterfly scheme..I would say to Guri that we should not have to wait in A &E...this is a really scary prospect...! It is wonderful that you have such a strong interest in helping with dementia patients...Also information wristbands are surely commonsense..Good luck with your work Guri....

 

[Spamar]

I agree with many if the ideas here. Although OH's admittance as an emergency was not dementia related, I feel all staff should be aware and dementia savvy. His consultant asked me if I was sure OH was suffering from dementia. Comment not helpful! At the last meeting with the consultant he said, ah the gentleman who pulled his drains out ( also cannula and epidural).
I was not impressed with the waiting. We were in the EAU, arriving at 14:20. He was found a bed in a ward at 00:30 next day! I left him 30 mins later, only to sleep on the floor if the visitors room in the next ward! If the NHS is going to develop many 'centres of excellence' they must realise that patients can come long distances and provide accordingly.
Although during this long wait he had various tests done, at one stage we were left in a small treatment room for nearly 4 hours. I couldn't go to get food or drink as leaving him alone would not be wise, as has been mentioned.
All in all, I was not happy about it all.
Then, once on the ward, this treatment continued. Medicine and drinks left, then taken away. Clothes chucked into locker. Wet trousers and pants bundled up and left on the floor. Dirty scissors used to cut what was a sterile dressing. No information given to other departments - I was asked it come in to give consent for stents ( in iliac arteries). But radiology had no idea why I was there. Then they didn't know how many doctors had to sign the form, one or two. All time wasting for what should be SOP.
After stents were inserted I stayed for a while, just as well. He was trying to take out cannula, trying to get out of bed, didn't want BP done yet again, tried to find his matches so he could set fire to his wristband! If I had not been there they would had to have someone to stay with him, or the whole procedure could have been a waste of time.
Notes - healthcare staff came looking for notes maybe 15 times a day. What a waste of time!

 

[Witzend]

I have had widely differing experiences in A & E with my mother, within the same hospital. On one occasion the staff were extremely kind and understanding, but then the nurse told me her mother had Alzheimer's, so I did not need to explain any further.

On another occasion none of the staff seemed to have a clue about dementia. They just seemed irritated and impatient with this very old lady who could not understand or remember that she needed to sit down and keep still.

If that experience is anything to go by, I would think that better (or any!) dementia training for staff would be a good idea. I know it can be very hard to deal with a dementia patient, especially if you are tired, but it would probably help to know that past a certain stage they are not just being difficult - they CANNOT take in information or instructions, let alone remember them, and are very likely frightened and confused in a strange environment where they do not understand what is going on, or why.

 

[GsB]

I can't thank you all enough for sharing your experiences on this thread. As already noted, staffing & busy acute medical wards ill-equipped to provide the care that patients with dementia need is a significant problem. Solving the staffing issue is beyond my capabilities as a junior doctor, however I think there are definitely things mentioned in the thread that can be done without complex bureaucracy & meetings with chief executives.

Kindness & compassion is something that all patients & carers should receive in the NHS. From my own experience as a carer & a junior doctor I know that on the whole it is present in abundance in most wards. However there are staff (including doctors) who don't understand the needs of patients with dementia & their carers. At my Trust there is mandatory training which goes a long way to help improve this, but I'm sure we can all do more.

I'll continue to view this thread as I put the leaflet together, & attempt to incorporate the feedback wherever I can.

Thanks again for all your inspiring generosity.

Kindest regards,
Guri

 

[halojones]

Witzend, I have also found that people who have experience of Alzheimer's have total empathy and make the whole situation so much easier, wherever we are, so training with this is so important, as we have no choice but to be so involved with the medical establishment...And as for Spamar story, well I am so sad for you having such an awful, dreadful time...Its also disgraceful..! I so far have had one experience of the hospital with mum, I had to take her for a TIA checkup and it was so horrible, I cried all afternoon from this alone.. After reading Spamars story (and others) I am truly scared..! We have a lot to deal with as carers, a lot of fear and sadness so when we turn to the medical world for help, we should not be treated shoddy or with ignorance
It is good that people like yourself GutiI have such an interest in trying to improve the situation..

 

[mrjelly]

Hmmm! It seems to me that most of the carers here don't need a lot of information in a leaflet when they are in A&E with their loved one. What they really want is awareness and understanding by the A&E staff of the reality of the situation. Not the history reported by the patient which is probably a confabulation or fantasy. Perhaps the leaflet would be more useful if it contained a blank page where the carers could report the patient's actual problems in confidence without contradicting and humilating their elderly relative.