Getting really fed up with not being seen!

Hi my husband has lymphedema (since 2009) and frankly has been messed around so much that I tried to do my best to deal with things myself. I was buying dressing from the local pharmacy (kerramax £59.99 for a pack of 10) and online, as the District Nurses were beyond useless. My husband came out of hospital last year after sceptisemia, with a care plan from Wound Care, the District Nurses literally laughed in our faces and gave me Tubigrip and Zetuvit pads to dress very leaky legs. Then he ended up back in a month later when the Lymph spread up his chest. Still had leaking legs that I was dressing every day, none of the nurses would do it, spent two weeks without seeing the Tissue Viability Wound care lot, got fed up discharged himself and went home- then I tried dressing everything. Couldn't cope with it and he's got sores and then he tripped, dislocating his ankle and the wound on top tore through to the bone - sorry is gruesome-. So back into hospital a 3rd time, been here a week now, they wanted to take his leg off at the thigh but I think I convinced the Vacsular guy that we could get his skin better with treatment- it has always worked when it was supplied! But now been told the Tissue viability nurse/wound care is on holiday won't be back till monday and I am fuming! this is that same woman who ignored him last year, what is wrong with us, why haven't we been taken seriously?

I am madder than hell but I blame myself for not doing a better job of looking after him, he's only 38 and facing this. I'm having to dress his sores as the nurses just wanted to leave them saying 'oh well he's on antibiotics so there not going to get any worse!' gobsmaked I was! It's like they want him to lose his other leg too!

Oh so fed up, sorry to moan so, I just needed to talk to people who may understand a little how much the NHS can suck sometimes.

Don't come to South Tees Hospital if you're a lymphie- they don't know what to do with you, in my shocking experience.


5 Replies

  • hi kay

    don't you worry about having a moan - the pair of you have had such a horrible time, i'm not surprised you're angry & upset

    is it worth phoning the lsn helpline - 0207 341 4480 - to see if they know of any decent services near you that he could get referred to?

    but i didn't really come in to offer you advice or suggestions - just wanted to say i'm sorry you're both having to struggle so much

  • I am so sorry you are both suffering so badly. I wonder if your G.P could intervene for you? Otherwise consider writing to the N.H.S trust in your area, or go to PALS. Maybe your MP could do something. Good Luck

  • Hi Kay, left a msg last night. I was in the lung ward at my local hospital, went in with cellulitis and blisters and could not get anyone, nurses, Doctors etc to look at my legs.

    I was being treated for my breathing probs and anything below the waist they did not want to know.

    I was at one time out of bed and my legs were on stools and I said to one nurse "a blister has burst look at the pillow". Her reply "don't worry we will change the pillow case" I could not get anyone to attend my legs. I wrote and complained when I got home and have had an apology. Retraining, courses etc have all been mentioned for staff but it should not be necessary. My heart goes out to you and yr husband. My probs are nothing in comparison. You will need to fight the system and it shd not be necessary.


  • Hi Kay,

    I am truly sorry you and your husband have to go through so much. You are a special person to be able to do what you're doing. Hope your husband won't have to lose even part of his leg. I'm thinking about you both and hope you can find proper help soon.

  • Hi Kay all credit to you for doing so much on your own, your husband is lucky to have you fighting on his behalf but it is awful that you are getting such poor service from health 'professionals' in your area. I echo others when I say try contacting LSN, GP, local MP and anyone else who can raise concerns about the dire state of care your husband has received. Please do not blame yourself. Hugs to you both

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