Emergency Services - share your experiences

[HarrietD]

A bit of background

Our Campaigns and Partnerships team are asking people affected by dementia about their experiences of the Emergency Services. They are working nationally with the Emergency Services to make a positive impact.

They are looking to find out about experiences and opinions of people affected by dementia, to find out what is important to you.

Both positive and negative experiences with the Police, Fire and Ambulance Services are welcome.

Can you help?

In particular, it would be really helpful if you could answer any of these questions:

1. Have you ever needed to use any emergency services? If yes, what happened?

2. Is there anything that might put you off from using them?

3. What challenges are there when trying to get help from emergency services? For example: Are 999 call handlers patient and do they explain things well? Do you have to wait a long time for ambulance/police/fire brigade to come out? How do emergency services staff treat people with dementia?

4. What could emergency services do to provide a better service and support for people with dementia?

If you could post a comment below with your experiences by Friday 1 June, that would be appreciated.

Thanks everyone.

 

[Philbo]

Hi

The only experience (so far - touch wood) my wife (PWD) has had is about 2 years ago, when I had to call them as I found her lying half in the toilet and hall. She has a bit of a history of occasional feints (just as do her 2 sisters), even way before any signs of dementia.

She used to have a habit of getting out of bed rather quickly, when she needed the loo and as I was asleep, the first I knew about it was when I heard the thump. Normally (and this only usually happened about once a year), she would come round feeling sick and take a while to recover but on this occasion, when I tried to stand her up, she couldn't put weight on one foot.

The ambulance crew were very good, taking her dementia into consideration (she couldn't really explain where it hurt etc). They took her to A&E and I followed in the car. Once there, I half expected to be taken into the unit to sit with her but instead, they simply wheeled her in a wheelchair to wait with me in the main (public) waiting area! She was very confused, especially with a room full of typical A&E "customers". Luckily, we got through to triage quite quickly and they suspected a broken bone in her foot! They tried to shepherd us back out to the public area to wait but I was having none of that. So we ended up tucked in a corridor for about another hour. An X-ray confirmed she'd broken 2 bones in her foot and they said she'd need a plaster cast, meaning she'd have to use crutches and be non weight bearing. "Not a hope" I said so they eventually agreed to put a removable "boot" on. Staff were all very attentive though and worked round my wife's inability to converse properly or follow verbal instructions etc.

We never did get to the cause of the feint, as her BP was fine, blood tests okay etc.

Phil

 

[Philbo]

I didn't lump this with my previous response as it's at a bit of a tangent but as mentioned on other posts, I suffer from Addison's Disease, a potentially life-threatening condition that is rare(ish)
(JF Kennedy had it, along with Jane Austin, I believe?).

When I was diagnosed around 12 years ago, the consultant suggested joining a self-help group - Addison's Disease Self Help Group (ADSHG). A charitable organisation run by volunteers, it was originally set up by a lady with Addisons, due to the lack of information about the condition and the lack of awareness, even among the medical community!

I became a trustee (though I gave this up after my wife was diagnosed with dementia) and my main role was to help to try and improve awareness in the ambulance trusts (not sure how many there are in the UK but it was around 13, all having different patient protocols for dealing with emergency adrenal crisis situations (which is potentially life threatening!).

All I can say is that it was like trying to herd cats!

Although it comes at the subject from a different angle, there's a lot of similarities regarding emergency services handling of patients with specific needs so if the team have any questions, please feel free to contact me.

Not sure if it's allowed but the ADSHG website is : https://www.addisons.org.uk/

Regards
Phil

 

[marionq]

In 2015 John suddenly and for no obvious reason couldn’t stand. I spent two hours doing everything I could then dialled 111. The paramedics helped me lift him on to the toilet. They found a raised temperature and an alarmingly low heart rate although I told them that was usual with him. We ended up in A & E and were treated by the consultant in charge who said they were keeping him in to do a thorough check. I thought they meant overnight but in fact he was in eight days and had a total overhaul.

This was a week after we both had the flu jab and they found a lower respiratory infection. He was kept in the dementia unit of our mega hospital and that was good because they had loads of staff and his delusions and confusion didn’t fase them. I found that the incident kickstarted other help for him.

 

[DeMartin]

Last year Mum had just entered a care home. They were concerned that when they went to give her her statin she was unrousable so they called the paramedics and sent her to A&E. I was notified and raced in.
Over the course of 2 hours she was given pain meds, ECG, chest x-ray and was seen by a consultant.
It was her local hospital so they had access to old notes etc. I gave such history as I had, (mum had a massive meltdown that afternoon, screaming and shouting at me ), she’d gone to bed and taken out her hearing aid.
It was decided that no medical problem was found, transportation was arranged and she was returned to the care home.
I found the whole process speedy and efficient, Mum was in a cubicle at all times.

 

[nae sporran]

My OH has been in and out of hospital too many times over the years to even remember. I have to say the Ambulance crews are always helpful, patient and take time to explain everything in a reassuring manner I wish I could manage. The call handlers are generally pretty good too, though sometimes the 111 non emergency could be a bit more understanding of Dementia patients inability to understand the question. On the couple of bad occasions I have managed to call back and explain which was greeting sympathetically. Response times vary, but last couple of times they were here inside 5 minutes, that was for a TIA and for an angina attack. I notice they tend to err on the side of caution and send her to A & E for more tests just in case.
The last time in A&E was not so good as I was stressed and left her for an hour or so and busy nurses were not so quick to help with toileting needs.

 

[LynneMcV]

I've have nothing but praise for the police and paramedics who have come to our aid over the years.

Two years ago my husband reached a crisis point and I needed to call emergency help, having explained first that my husband had dementia. Police arrived first and they were absolutely fantastic in keeping my husband calm until the ambulance arrived.

The important thing is that they talked to him sympathetically, gentle in tone, used his first name and presented themselves as people he could trust, removing any fear he might have about their presence. Likewise, when the paramedics arrived, they were aware beforehand of my husband's diagnosis and took time to gain his trust so that he remained calm and co-operative.

Lights were dimmed within the ambulance for the journey to hospiral, in order to keep my husband calm, and even though we were followed all the way to hospital by the police, in case extra help was needed, it was done in a very discreet way, no drama of flashing lights, so my husband was none the wiser.

It was sometime before we needed to call on emergency services again - but only the ambulance service. This was as mainly the result of falls, passing out or sickness.

Again, the paramedics (pre -warned about dementia) were wonderful , kind, calm and understanding throughout - bringing smiles and laughter to the situation rather than stress and tension. Again, first names were used and my husband felt they were friends and was more than happy to co-operative with whatever was needed.

Any call-outs which required a journey to hospital were kept calm by friendly chat. My husband did not necessarily understand the content of the conversation, but he understood the friendly atmosphere and responded well.

Where time allowed, the paramedics would also hang around a bit on arrival at hospital to make sure that medical staff taking over from them were aware that my husband had dementia.

On the most recent call out, when my husband was suffering delirium and the hospital corridors were overflowing with patients on trolleys, they stayed and helped me keep my husband safe from falls until the nurses were free. They also made sure he was warm and comfortable by providing blankets and finding a pillow after a long search.

The call handlers were also great - though in our case I was the one making the call and answering the questions. There were a lot of questions and I am not sure how a person with dementia might have coped in trying to answer them all and remain calm.

The call handlers went out of their way to help me manage the situation - including , on one occasion, calling me back on my mobile phone number rather than the landline I had called from) to make it easier for me to move around and monitor my husband with their advice.

I have no complaints about the time taken for any of the call-outs. Attendance times varied between 30 minutes and over an hour - but when you are dealing with a fall and the person is not critically ill or badly injured, it is only right that others with more urgent needs take precedence. Again, I was there as carer and could help manage the situation (and any stress) until help arrived.

In summary, in our experience, the police and ambulance services have been absolutely fantastic.

 

[HarrietD]

Thanks so much @Philbo, @marionq, @DeMartin, @nae sporran and @LynneMcV for sharing your invaluable experiences. I really do appreciate it.

 

[Izzy]

I had experience of the ambulance service and the police in relation to both my husband and my mum. Every experience was a positive one.

I had paramedics out for a number of reasons - mum's TIAs, Bill's chest infections and delirium as well as them helping me get one or other of them off the floor. I was never made to feel I was wasting their time and I never felt they rushed things. Sometimes they sorted us and left, at other times Bill was taken off in the ambulance. I was more than happy with the attention and help we got.

I twice had experience of the police in relation to my husband.

One time I was off for an overnight at a hotel for a staff night out. My brother had come through and was staying overnight to keep an eye on my mum and Bill. He got them both sorted and in bed and checked on them a couple of times. The last time he checked Bill was missing. He called me and I came back right away - this was at 5am. I phoned the police and they were marvellous. We had a tracker dog in the house and they got the fire service to thermal image the nearby beach. To cut a long story short he was eventually found around 4 miles away. We never found out how he got there. At all times the officers treated me with compassion and kindness.

The other time happened when I was at work. I was the headteacher at a local primary school. One afternoon I got a call from the ,oval community bobby to say she was in my house! Turns out Bill had walked along towards my school but he had to pass the local High School before he got to my school. The office staff called the community police. He must have been able to tell them where he lived. She took him home and she saw a photo of the two of us in the house. She put 2 and 2 together and phoned me.

I have nothing but praise for how we were treated/dealt with on each occasion.

 

[2jays]

I cannot fault the paramedics who turned up to take mum to hospital when she broke her leg, nor the time they had to get her to hospital due to her first episode of sepsis

what I did find, especially on the 2nd visit to hospital for sepsis, because I hadn’t registered the health and welfare POA, they couldn’t not take her to hospital, even though I asked them not to.

The third episode of sepsis, I had by then registered H&W and was able to say no to hospital and the paramedics agreed not to take her.

Not sure if the person needing paramedics was my partner, whether it would have been different, but I advise anyone with an unregistered POA for health and welfare to get it registered, especially if it’s for a parent. You never know when you will need it

 

[crybaby]

Harriet,
I've had to call the police twice because my husband had been knocking me about - the first time they came quickly and quietly, spoke separately to us both, and when they were sure everything was calm they left, which was fine, and for a while after that life was violence free.
Then, just before last Christmas, I was hit so hard that my glasses went flying and I was on the floor. I got as far as hearing " which service do you require?" when he grabbed the phone, shouted into it "she's lying again!" and slung the phone back on its stand.

I thought that was that, they didn't know who or where I was.

But, amazingly, ten minutes later, two policeman appeared on the door step.

Now that is service - I don't know how they did it, but they decided that they would stay with me, until our adult son, who was home from Sweden for Christmas, got home from his night out.

I explained that my husband had a rare form of Alzheimer's (PCA), and they spoke to him firmly and quietly, even when he shouted at them. They told me that they weren't going to arrest him, but that regardless of what was troubling him, violence towards me was unacceptable, and that although I apologised for calling them, or trying to call them, they said that I was right to do so, and they would be making a report to Social Services

They were brilliant!!!

 

[SiJol]

My dad who has vascular dementia had a breakdown in his flat, dizziness and faintness and they (ambulance) were there in short order. Very supportive, calm and professional and checked all of his vital signs and did further tests. Made him feel safe and in good hands. It took ages for the doc to figure out that the problem was because he had lost weight his BP meds were making his blood pressure too low causing the dizziness and faintness which we thought might be something far worse. In summary, they were excellent.

 

[love.dad.but..]

Dad had 1 trip by ambulance when I looked after him in his home and stayed overnight and then at a differebt hospital 2 emergency admissions 1 requiring an operation the second at end of life before a decision taken to go back to his NH for palliative care plus 3 day a and e trips by ambulance with facial injuries following falls. I attended each time and stayed in with him for the lengthy two stays. On all occasions I found the ambulance staff and hospital a and e staff very good. Ambulances arrived in quick time.On the wards however it was hit and miss with dementia awareness and understanding being the main problem. Some staff excellent some not so especially bank staff.