Multiple System Atrophy Trust

Help!!

My brother was admitted to hospital before Christmas and his stay lasted 4 weeks. During that time they said he had MRSA and two other infections that they didn’t k ow what they were. Gave him all sorts of antibiotic medication and eventually discharged him with a chest infection that wasn’t bad enough for him to be kept in hospital.

He was then admitted last Wednesday after becoming non responsive while we were at the nursing home. Needless to say we told the ambulance that we didn’t want him going back to the same hospital. (A staff nurse told me that we didn’t need barrier protection as MRSA is killed with the fresh air when you go outside) that was only one of the things we had to contend with.

Today we were told that the ct scan shows he has pneumonia and his bladder is hugely enlarged because of the catheter not going in properly. They are treating him with two lots of antibiotics. He is very delirious to say the least. This just seems to be going on for such a long time.

The consultant said hopefully things will improve in the next couple of days.

Sorry for the rant guys. Just had to vent somewhere that wasn’t family

Corinne xx

25 Replies
oldestnewest

Please don't apologise for the need to rant or release - heh! We are a community of people who care about one another. Sorry to hear that your brother and your family have had to go through so much.

Glad that the problem has been identified and he is now getting what he needs. Keeping this situation in my prayers.

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Thank you very much PNIAuthor60 x

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I should think you ARE ranting. Fresh air indeed. They must know better than that. Have you got an alternative hospital.? People with MSA do not have proper temperature control. They can have high temps for nothing much and low temps for serious infections. It is essential that antibiotics given for UTI's (Urinary tract infections - bladder or kidneys) are not stopped just becausethe temperature has dropped. The Hospital MUST use blood tests to diagnose the progress. MSAT does a thing they call a Hospital pack - have a look and see if it will help you keep people on track with what they need to do

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This time we said we didn’t want him going back to the first hospital and they are doing so much more for him this time.

I got the hospital pack last week but he was taken back in before I could get a chance to fill it in xx

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Never take no for an answer.

Fill it in and take it into the hospital smiling sweetly and make sure that everyone reads it. Tell them, (in your own words) that you have brought them a rare disease which is a big challenge to them because no one expects them to have met it before and this is important and is meant to help them because you are all part of the same team. Thank them for being so helpful (even if they weren't) and smile all the time because you know they want to help.

Good luck FredaE

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Thanks FredaE I will fill it in tonight and take it up with me tomorrow x

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Cory0407

As MSA is complex and rare, you will potentially know more than most hospital staff. The more information you can give the hospital about medical history, symptoms and risk allows them to make wise decisions.

We were lucky recently with my wife attending hospital with a chest infection to find a young A&E doctor who had been tought about MSA and it's risks.

I keep all letters, medications, and history in a digital file that I can pass to ambulance and medical staff anytime.

Be firm, helpful and knowledgeable.

Paul

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Thanks Paul I am taking up the hospital pack today with relevant letters.

How far back should I go with copies of his previous hospital letters etc xx

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Info back to the first letter showing MSA as it shows a diagnosis and also the consultant so they have someone to refer to...talk about RISK the they don't like the word e.g if you send us home I feel there bis a risk of.....

Good look, be strong

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Also remember hospital staff see many different people a day and notes only tell so much, so your knowledge is invaluable, never assume they know all your history, they are busy people so the time face to face with you is the best time.

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I find it quite strange sometimes when you are in a situation that you are more knowledgeable than a qualified doctor. But I understand what you mean xx

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Hello Corinne, our thoughts are with you as you face this added problem. You have had some excellent advice from Freda and Paul. The only thing I would add, is that we keep information about Jackie’s treatment and medication constantly up to date in the folder supplied by MSA Trust. Even so, as Paul suggests, medical staff are very busy and frequently don’t read their notes or ours. For each and every appointment we have we try to plan what we want them to know and what Jackie wants out of it.

We great each new medical staff member with a smile, as Freda has said, and always say “I’m sure you haven’t heard of Multiple Systems Atrophy because most health professionals haven’t”.

Good luck to you both and take care, Ian

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Thanks Ian

I guess it’s all about being prepared isn’t it and making yourself heard whilst not appearing to tell them their job xx

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All good advice. Over the eight years Victor was ill I improved my powers of persuasion enormously . The higher up the heap you go, the more touchy people get about being told they don't know something . People think it is a failure on their part if they don't know and feel very worried and insecure.

Oh yes, the architypal Carry-on consultant with his knighthood, his paunch and his loud voice is often only a little fellow inside. All the more reason to be kind to him. If you get him backed up against the wall he will NEVER listen.

But it is a rare disease.

Most GPs, for example, do not see more than one case in a lifetime in practice although with all the work we are all doing it is getting better known. I used to say at the end that you could put me in a room full of medics of any sort except for nerologists specialising in movement disorders and I would know more than they did. Beware of neurologists specialising in strokes. One of those re-diagnosed Victor as suffering with only dementia with Lewy bodies without an proper session with the patient and without me being present. He was right about the "Lewy bodies" which was a late arrival in the progression of symptoms but not the "Only". To say I was angry was an understatement when I arrived at the hospital for my daily visit to find a new diagnosis and some new medication all done in my absence.

So I contacted my MSAT nurse who said the medication would do no harm and decided to do nothing as I fully intended to have him home regardless of what anyone said. When I got him home, the diagnosis was restored. Silly man, didn't he think that if he had been suffering form dementia for 8 years, someone might have noticed.

Anyway I could easily have wasted a lot of time and energy I did not have on an argument about something which made no difference. Be selective about what matters and then only spend energy on that and then never take no or an answer.

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It is shocking what you need to go through to be heard. My son has autism so I know how hard it is.

Thanks everyone for the support I really appreciate all your valuable advice xx

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Corinne, rants are good. We all need them, and your post has elicited some great responses. It is sad, but inevitable, that excepting movement disorder specialists we all know more about MSA than any other medical professional that we come in contact with. I suspect than within our local healthcare system I am known as being quite difficult. The smile approach is probably gets you much further.

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Well this afternoon went quite well in one respect. The doctor did listen to what I had to say and did say that I probably knew about the condition than they did. She is going to review his meds as they have been changing them about and stopped his pain killer and only left him on gabapentin. She did mention oramorph this afternoon to see how he managed on that as the tramadol was making him sleepy xx

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I am so glad to read your post i thought doctors were never wrong and i suspect they think i am making it up or mad but i found the M S A trust nurse who has been so very helpful

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The meds that John takes at the moment keep him reasonably happy and comfortable. I would fight tooth and nail before I allowed any newbie health care professional to change them. Trust you!

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Hi Tingates

we can all be difficult when we need to be.

I have been involved in politics all my adult life and I was attracted in the first place because I do like a good scrap. I used to be told I was too combative and people would take more notice if I didn't try to force them to abandon their wrong opinions. That was quite right but I do think there is a slight element about this smiling reasonable well informed old lady which suggests it would be a good idea to listen or she might take the place apart which has never done me any harm.

It is not easy for the new carer to have the confidence to argue with a highly trained confident specialist of any sort.

That is the key word - confidence.

Don't use technical terms until you become used to them. If you get them wrong it undermines you.

On the other hand if a technical term or anything you have not heard before, is used to you do ask for it to be explained to you. more than once if necessary . Then, DO NOT nod wisely and say afterwards "what did he say" Write it down and ask for help with the spelling if you need it. It is good for people to explain what they are doing in simple terms and it is NEVER a waste of their valuable time.

Say, in your own words, that you are new to this but you know that a lot will depend in future on you knowing as much as possible about this very rare disease because you understand that at present there is no cure and John/Mary will depend on you to know how to make his/her life as good as it can be. Most of his/her medical advisers , you know will not have been presented with this complex and difficult disease before and can't be expected to know about the problems it gives. Say, always in your own words, how much you appreciate the help everyone is giving you in your mission to understand so that we can all look after John/Mary as well as possible.

We always sat down the night before any appointment and said. What to we hope to get from this meeting? We wrote it down and handed it over. Stopped things getting forgotten

FredaE

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Thanks FredaE

I have had to find the confidence to fight as my son has autism and have had to fight tooth and nail for him. I have been on courses etc to educate myself with this.

I am very keen to learn as much as I can about MSA. I read everything that I can On The MSA site and the related sites to it to gain all the education I can.

I don’t have problems speaking to consultants etc or asking them to explain I just need to be sure of what I am saying to them. The help I have received in here is invaluable. After all I am just a learner here xx

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That is brilliant.

the information on the MSAT site is London is totally reliable and the nurses are wonderful. I live in Samantha's area and i really do not know how i would have coped without her, but there is , as you would expect, a lot of dodgy stuff on line, especially about cures. The plain hard truth is that at the moment there is not one. On the other hand there is a lot of research being done both directly on MSA and on related diseases. Serendipity is the word... finding out something amazing when you are researching something totally different. That COULD produce something quite quickly especially if it involved a drug already approved for something else. Otherwise it will be a long slow business but people are looking and there is always hope.

People find it hard to cope with the uncertainty of a disease which is different for everyone. There is an up-side. If you read widely you will find out about a lot of symptoms your brother will never get. People tend not to say so on line as it sounds like tempting fate to say john/Mary doesn't have this or that. I can do that now. I can say that Victor had no trouble with pain of any sort and there were other things he did not get. He had plenty of things wrong of his own but there was a good number of things he did not have. You never know which at the time

Good luck FredaE

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Thanks FredaE x

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Hi, there is no need for me to add to what has already been seid except to cut to the chase with our own experiences with my wifes MSA.

You can get a jab now, that is once in a life time, against pneumonia, my wife was given it by the district nuse as soon as she was under there care.

To prevent chest infections we use a cough assist machine to exercise the lungs and clear phlegm.

Internal catheters are needed and fit early before infections get bad. Get long lasting (not latex) catheters. and then get them changed evey 6 weeks (insist). Then flush them regually (twice a week) to keep infection sedement down, then finish with a saline flush to help prevent further infection.

Yes we've been through all this our selves, and thankfully my wife is now comfortable. Hope the above helps.

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Thanks Kevpembs

That’s great to know about the jag for pneumonia. I only knew about the flu jab. Also about the chest exercises. He is saying now that he finds it harder to breath and this is effecting his speech. He is now talking in a whisper and is ‘panting’.

The catheter that the hospital have put in is a 12 week one but have told him he had to get his Gp to refer him to urology to do with the prostrate. I am going up this afternoon to see what I can find out or get them to sort out while he is still on there.

Thanks everyone for your invaluable advice xx

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