Lack of understanding of MDS by NHS staff

Please post here your experiences of MDS as a patient, carer, family or friend

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Lack of understanding of MDS by NHS staff

Post by janbev » 27 Sep 2014 17:38

My husband Bev has been suffering severe pains in his upper abdomen, chest arms and neck for the last week. Even oromorph did no more than take a slight edge off the pains. One of our GP's decided yesterday afternoon that enough was enough and sent him into A&E by ambulance. A&E were very good and having found both his pancreas and spleen to be very tender decided to keep him in for observation in case he had an infection. They sent him to Medical Assessment and overnight he started to vomit and could not even keep water down - when I spoke to the Sister on MAU and asked if anyone had actually contacted Haematology on the Alert Card no. I was told 'No, he was admitted because of pain not blood problems so there is no need to speak to them' I was told that if I felt they should know he was in the hospital it was up to me to tell them. And that if he had not copllapsed in the ward after visiting the bathroom they were sending him home as soon as he could keep food or water down but having collapsed they were considering keeping him in for another night. I asked if she knew what his bloods were and that his neutrophils were down to .6 and that he was susceptible to infections and should be careful in his diet and all I got was that hospitals were full of infection and she assumed that he knew what foods he could and couldn't eat. Total impression I got was that she felt I was trying to tell her how to do her job and just a pain in the butt and she was not in the least bit interested in what I was telling her. It is quite discouraging to find medical staff who know nothing of MDS and to be honest do not want to know. I did phone the alert line and the sister on duty told me that she would keep an eye on what they did with him and if he was not transferred to her ward by the morning she would find out where he was and have the consultant check him out on whatever ward they had him on.
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups

Re: Lack of understanding of MDS by NHS staff

Post by davidmiller » 28 Sep 2014 19:06

Your experience sounds appalling, you must push this hard to ensure that your husband is properly assessed by the right people.
I must say that your experience could be not be further away from mine where after initial assessment for an infection the A&E consultant contacted my haematology consultant who had me admitted to his ward as soon as a bed became free. I hope that your husband recovers quickly
Best wishes David Miller

Re: Lack of understanding of MDS by NHS staff

Post by Bexybloom » 02 Oct 2014 12:48

I know how this feels! My dad has had different consultants go and Google his condition and then tell him what he already knew...

usually goes something like

Doc - 'oh, you're neutropenic'
Dad - 'yes, im aware of this'
Doc - 'lets instigate the neutropenic protocol and isolate you for a week'
Dad - 'Ive been neutropenic for 5 months and im here for a nosebleed'
Doc - 'what is your condition again?'
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