PDA

View Full Version : Sorry this just a rant



michelle
25th February 2012, 19:50
Last night we had our first 999 call as mum had a bad fall and hit her head quite badly.i haven't been in this situation befor and was a scared as my mums pbp was causing her to gag and choke cos she was laid flat. When the first rapid response paramedic arrived he asked me what was wrong with her I told him she had pbp and he laughed and said "that's a new one I've not heard of that before". I was shocked to say the least, is this normal? I know it's a disease the everyday man on the street won't necessarily have heard of but a paramedic! Sorry I my be overreacting but how are we supposed to keep our families safe when front line health care workers haven't even heard of their disease.

Sorry for the rant
Michelle

john
25th February 2012, 21:08
Michelle,
Get used to it. People with motor neuron disease are a mystery to the medical profession. Nobody seems to have much exposure to it which isn't surprising as it is a fairly uncommon disease. You will find they will look to you for guidance, not the other way round. Irene's doctor who is probably in his 40s has seen 2 cases including Irene in his life. It doesn't seem to matter what we ring about it is all put down to disease progression even though I can't find anything anywhere to confirm this.I thought something unususal they would see as an interesting challenge but instead they seem to want to avoid it as though it were contagious.
May be different some places but not from what I've heard.

John

michelle
25th February 2012, 21:25
It's just so annoying John my grandma died from mnd twenty six years ago and my aunt says that nothing seems to have changed in all those years I might have tshirts printed up for my mum with her illness on tne front ( in fancy font of course) and her symptoms on the back then wheel her round the a & e department just to give them a heads up incase we end up there again sometime.

Best wishes to you both

Michelle

john
25th February 2012, 22:44
Cheers,

and to you.

John

luce
25th February 2012, 23:11
HI,
it may be useful to make contact with the ambulance service so that they have a record of your mum's health condition

We ensured that the ambulance service had a full list of mum's health conditions and a copy of the advance decision to refuse treatment; if there is a key safe it may also be useful if they know that number, otherwise if they have to come in an emergency they could break the door down.

since it is so rare, perhaps say PBP (in full) and then say, a type of motor neurone disease just to help them out.

We had a situ when mum was on the concrete outside for more than half an hour in the rain, around december time- they were very helpful and had to send another crew to get her up- but it was a worry with her being on the floor as she can't lay flat either- fortunately mum was on her side and we could put blankets and umbrellas over her.

you could also contact someone (manager) from the local ambulance service and helpfully suggest some training or reading from MNDA on the disease

know i am stating the obvious and dont want to be patronising as i am aware that you wanted to get your frustration out - there are often times like that i know
luce

iwontgivein
26th February 2012, 07:38
I have heard so many stories about the medical professionals not knowing or understanding MND,

I had to ask MNDA to send literature to my old GP to help him and the rest of his team to be aware of the condition, it helped a great deal as i am no longer with that surgery but did get a call saying thank you for the very useful information as he has a new patient who has MND,

I did say its ok but the credit should be to MNDA as they sent him the information on my behalf.

I think instead of telling the emergency staff that your mum has PBP but say she has MND and tell them what the words stand for as they will recognise them.

I am pleased that your mum is in good hands and that you are doing all you can to help and support her through this.

hilary walklett
26th February 2012, 16:06
Yes, it IS frustrating, michelle - and I'm really glad that you feel comfortable enough with us to be able to throw your arms about and scream, knowing that we'll understand, sympathise and gather round to give you a (virtual) hug!

That said, warrior's advice is very sound. Paramedics do their best,and they do have very thorough training, but when there are hundreds (thousands?) of little-known diseases and conditions out there, with small numbers of sufferers, compared to the general run of diseases, it is hardly to be wondered at that they don't get training in all of them - no-one's brain is capable of holding all that amount of info at one time, I guess!

At least the awareness-raising that the MNDA are doing is beginning to have an effect - more and more people have at least heard of MND, now; even if they don't know the differences between ALS and PBP or SBMA or any of the other variations.

pete
26th February 2012, 18:38
Hi Michelle,

Pretty much agree with the others who have answered you post , But to be honest with you ,if someone said to me i have pbp, i would look at them odd, its the way i suppose but everything gets shortened ,and in my experience with the Paramedics i have worked with , its there job to save the patients life if there is anything blocking airways and ensuring the person is stable to get them to hospital for Treatment , Its what happens when the get to the Hospital that scares me ,Having been in that situation ,i never found anyone even remotely understanding MND in casualty, and from what i have seen the so called specialists do not know that much ,so if the need arises i would say clearly Motor Neurone and its Bulbar form . Hope that helps in some small way , Sorry but i have the greatest respect for Paramedics and what they do for us when we need them ,

Best wishes

pete

michelle
26th February 2012, 22:23
I also have respect for all of the medical establishment Pete, but when your loved ones have a disease of what ever form you just need them to understand and not giggle at you. I was a it vague in first post ,i actually told the paramedic mum had bulbar palsy which, from gathering information since diagnosis isn't just associated with mnd But heyho you live and learn. Thanks for the hug Hilary albeit virtual think I needed one, sorry to be a winger

Best wishes

Michelle

pete
26th February 2012, 22:37
Michelle,

A winger your not, just wanting the best for you mom,thats all.

pete

bakeit Forum