[Anonymous]

Hello everybody

Henry came home last night after spending 3 nights in hospital. He has had 5 chest infections post SCT in March 2012. He had a temperature and felt unwell on monday so when to the macmillan unit, they discharged him with antibiotics AGAIN. the next day he had a high temperature and after 2 phone calls he was admitted to hospital at 5pm to the Clinical Decisions Unit at Milton Keynes Hospital and Im telling you if he is ill again I am not taking him there ever again. Its a dump with poor nursing to boot and rude receptionist. He was never transferred to the specialist ward, and not even told he was neutropenic! he was usuing communal shower and toilet and now has come home with a cold. He had 3 days of IV tazocin and he still has a cough and bad chest. He has also been given more antibiotics and we have to go to the mac unit on wednesday to see consultant. yesterday I happened to bump into the senior nurse of the mac unit who asked if anyone from the mac team had been to see Henry to which I replied NO. So a few hours later 3 doctors turned up and actually talked sense ! but disappointing said that Henry is taking a longer time to recover from his SCT. (yes well he is working 5 days a week – getting up at 5.30am and home at 7.30pm) BUT he would benefit from Immuglobin transfusion however this is not readily available on the NHS they have to put a case forward to a panel and they decide if he can have this as its thousands and thousands of ££££. So we will have to wait and see what happens on Wednesday but im not confident this will get sorted. We didnt leave the hospital until 7pm. doctors came round at 3pm and said he should have a growth factor injectin before he leaves. Well pharmacy didnt have any and the nurse only realised at 6pm so went to look in emergency cupboard (which took 45 mins) and then came with injection. I didnt see her mix it up so lord knows what they gave him!! Oh and every time he had his tazocin no flush was given before or after. Nurses discussing patients and other staff in loud voices in the corridor. Obs not taken before he left and after one HCA took his blood pressure Henry said are you going to take my temperature and she said oh i cant find the thermometer and left!!! I was absolutely enraged and incensed. I have however calmed down now. Henry said im not a one man band and to stop feeling angry. Its difficult when you see someone you love not getting the care they should be receiving, and I shouldnt have to complain and chase people up. On the upside while waiting to be discharged we wrote all our xmas cards yesterday:) – myeloma ones of course!

Rant over but still feel upset and angry with the NHS – i know there is no point in writing a complaint as I used to work for a director of an NHS PCT so I know the drill. Right off to make Henry's breakfast now:)

Has anybody had experience of immuglobin treatment ? if so please contact me on sezziemc@aol.com

Have a good day
Love sarah

[mhnevillParticipant]

Hi Sarah

So sorry you and Henry are experiencing the down side of the NHS just at the time when you need it to be at its best. I know that feeling of frustration and feeling powerless to change things.

I really admire Henry for keeping on working. I do hope you don't have finacial pressures as well as everything else.

I do hope and pray things change for the better soon.

Much love.

Mavis x

[tomParticipant]

Hi Sarah and Henry

Well you have both been going through the wars bless, and you do right with shouting, but i do think the NHS is an excellentt thing but leke everything it has to be run correctly at all levels.

And I also must say that Henry is working long hours am sure I cant do those hours and I had my SCT in 2009 :-0 as for me am thinking of giving my job up and going on sick but keep putting it off due to the Money aspect of it all :-S

Hope all is soon sorted

Love and Hugs to you Both xxx

Tom "Onwards and Upwards" xxx

[HelenParticipant]

Hi Sarah
I've had infection after infection since my SCT , I've been on 3 lots of A/Bs since august and the idea of giving me immunoglobulin was raised about 6 weeks ago. But a decision not to give me immunoglobulin was made based on the fact that the whooping cough testing showed i was producing lots of good antibodies against the infection, my neutrophils were around 1.3 and my light chains look a normal ratio. Sounds as though Henrys are lower. I'm still working full time but I do wonder if I'm overdoing it a bit, but its hard not to try moving on to do normal stuff again. I think you just have to take Henry's lead here but do ask if there is any chance he might have some other chest infection which is taking a long time to resolve. Whooping cough in adults doesn't sound the same, you don't have the characteristic whoop – all it seems like is a fluctuating chest infection which at times makes it difficult to breathe a bit. I've been at work all the time I've had it as the health protection agency felt I was over the infectious stage before anyone recognised it. But it does leave you low at times.
Hope he gets better soon
Love Helen

[BADGERParticipant]

Hi Sarah and Henry

what a tale I really wonder what will happen to some of us in the NHS systems so much laxness and uncaring attitudes make me shudder poor Henry I wonder if he is doing a bit too much working all thosr hours perhaps thats why he has been so open to infection getting a bit run down I hope he feels much better soon
Love Jo x

[DaiCroParticipant]

H Sarah,

i've been there and had that sort of 'care' Each at my own 'City' hospital and at the Queen's Medical Centre, it has occurred at the 'initial Assessment Units', where they diagnose your problem before moving you to the 'specialist' ward.

The staff are usually overwhelmed, under-trained and have not got a chance of understanding the specifics of so many conditions and diseases… they are basically a waste of time.

i have found that it is worth dropping in a note to the hospitals PALS desk (patient Liaison).

Perhaps Henry also needs a couple of weeks away from work, resting at home… it's worth considering.

Regards,

Dai.

[VickiParticipant]

Blimey Sarah and Henry,

What a rigmarole! I know what you mean about the care Sarah, you only want the best. Fortunately for us ours has been faultless, however Colin has had to rein me in a few times when I'm on the verge of trying to be doctor!. It's also very frustrating when it comes down to money….we had the same thing with the plerixafor!. I would recommending Maggie or Kate on the myeloma team as the team have experience of putting together business cases to help Funding issues. Apparently they work with the hospitals to try and make it happen as they have a national picture of what's going on, not just local like the hospital, which all adds to the weight of the case.

Hope Henry is feeling better soon, he is certainly working long hours so a reduction for a bit might help?

Vicki x

[Anonymous]

hello all

Henry has just finished a course of the antibiotics he was on when he came out of hospital. He does seem a lot better and I have 2 courses of antibiotics in reserve. He saw his consultant on wednesday who is putting a case for Henry to have immunoglobin transfusion as his immune system is very low (neutrofils 0.9). So fingers crossed the panel approve this otherwise i will have to start fundraising or sweeping chimneys!! our daughter who did the 10k run and raised nearly £2k for myeloma uk won an award at her work for fund raisinng. we are so proud of her and our other 3 children, who keep us smiling and give us strength. Henry has been allowed to work from home on days when he feels not able to travel so that is positive news. So onwards and upwards as the lovely Tom says 🙂 if any of you are on twitter please follow me @mrsssilverfox
love
sarah xxxx

[tomParticipant]

Hi Sarah and Henry

Well one of the ways to go is Onwards and Upwards 😀 and we also have Vasbyte and the famous Whatever it takes 😀 and the oh lets get on with it saying 😎

I hope you dont have to take on extra work to get what should be given as a matter of course (dont do mucky chimneys lol)
And a well done to your Daughter on her Run and am sorry to hear that she has two nasty work colleagues in her dept.

Keep Henry Strong and well and hope and pray that funding is allowed

Love Tom "Onwards and Upwards" xxxx

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