laurajayne
19-03-2007, 3:26 PM
Hi all, I'd be really grateful if someone could give me some advice on my issue (my apologies in advance for a long post, want to try and give as much information as possible).
In September 2006 I developed an agonising pilonidal sinus, and went to my local hospital's A&E, they admitted me and operated to excise and drain it. This left me with an open wound, which had to have dressing changes on a daily basis. They discharged me to the care of my GP and District nurses, and I didn't hear from the hospital again.
Getting the aftercare required was extremeley stressful, as I'd regularly be told that no nurses were availiable. Receptionists would ask why I couldn't change it myself....(for those who don't know, this is located *ahem* between the buttocks and requires 'packing' the wound...ie...neigh on impossible to do yourself!). Towards the end of my treatment (when it wasn't being packed anymore, but still required dressings etc) I ended up going 13 days without a nurse caring for the wound. I did my best with what I had - the district nurses had taken all their supplies away, so had cotton wool and boiled water. Towards the end it developed this horrible smell, even other people could smell it..could only be discribed as something rotting. Apparently all nurses were out in the community doing flu jabs....
Anyhoo, I eventually was given the all clear and went on with my normal life. Until February this year, when I started getting pain there again. I left it for a few days, but thought I'd better get myself back down to the hospital. I got there at 1pm Saturday afternoon (ok, I admit it, timing could have been slightly better lol.) After the reception booked me in, I took my chair (oowwwww!) and waited. After 2 hours I was in tears....eventually found out that the idiot had refered me to ortho, which was why I hadn't yet been seen. (I may be wrong here, but shouldn't a dr refer me to a speciality, as they've actually had medical training!). I eventually was taken through to A&E (was in SAU) and waited until 1AM Sunday, when a surgeon saw me. He said he couldn't see anything, so did I want to be discharged, or admitted and they'd monitor the pain. I opted for the latter....he told me they'd get a bed sorted for me (still on one of those trolley thingys), and that I'd get something to eat...I got a stale tuna sandwich . Twice I crawled out to the nurses station begging for pain relief....Well, I'm still in there at 9am when the consulatant surgeon came round with an anestatist (sorry, can never spell that one lol). Took one look, and said right, your having surgery...we just need to find you a bed. He asked who had done the previous one, I had no clue, and if I'd gone to my clinic appointment...er...what appointment, I never heard anything about a clinic appointment!. To say he was less than impressed was an understatement. So, I signed my forms, and waited. 3pm Sunday afternoon, and a bed was finally found and I was taken to theatre at 5pm. I was finally given my anti-nausea meds (after I told the anestatist that I'd been sick twice and had kept asking for it on the ward) and then had to break the news that I was still in my pjs...no gown. Again, less than impressed. So, put under, surgery completed, had a stale ham sandwich lol and waited to be discharged the next day. Was booted out of bed at 9:30am, and waited until 2pm to actually get my meds and be discharged. And no, they didn't feed me lol. (and clinic letter arrived a few days later )
So, passed to GPs and DNs again was I. My GP has been fantastic to be honest, changing my pain meds, and keeping an eye on the wound for me. So been going to surgery for weekday changes, and had DNs round for weekend ones. Until this week. I recieved a phone call from the surgery, telling me that apparently the DNs will no longer be coming to see me as I am not 'incapacitated'. I am now to go to the hospital walk in centre every saturday and Sunday to get my dressings changed. They do not operate an appointment system, so I should get there for 10am cos they get busy. (obviously everyone else who's in the same boat as me will be there too, plus the sick people lol). When I said to her that I can't get there (I can't drive, plus wouldn't be allowed to on the drugs I'm on even if I could, and there is NO public transport whatsoever on a Sunday, and I don't qualify for Patient transport) I was told to get a taxi. That would cost me £25 a DAY! I can't afford that. My mother is now helping me change the dressings....I have to accomadate her shifts obviously...and I am gretful to her for the help .
So, (after all that!) what can I do? How can I fight this? I don't think it's too much to ask to have the DNs come round to change my dressing (a 5 minute job for those with training). I just want to heal lol, and not have ANOTHER one....any suggestions?
In September 2006 I developed an agonising pilonidal sinus, and went to my local hospital's A&E, they admitted me and operated to excise and drain it. This left me with an open wound, which had to have dressing changes on a daily basis. They discharged me to the care of my GP and District nurses, and I didn't hear from the hospital again.
Getting the aftercare required was extremeley stressful, as I'd regularly be told that no nurses were availiable. Receptionists would ask why I couldn't change it myself....(for those who don't know, this is located *ahem* between the buttocks and requires 'packing' the wound...ie...neigh on impossible to do yourself!). Towards the end of my treatment (when it wasn't being packed anymore, but still required dressings etc) I ended up going 13 days without a nurse caring for the wound. I did my best with what I had - the district nurses had taken all their supplies away, so had cotton wool and boiled water. Towards the end it developed this horrible smell, even other people could smell it..could only be discribed as something rotting. Apparently all nurses were out in the community doing flu jabs....
Anyhoo, I eventually was given the all clear and went on with my normal life. Until February this year, when I started getting pain there again. I left it for a few days, but thought I'd better get myself back down to the hospital. I got there at 1pm Saturday afternoon (ok, I admit it, timing could have been slightly better lol.) After the reception booked me in, I took my chair (oowwwww!) and waited. After 2 hours I was in tears....eventually found out that the idiot had refered me to ortho, which was why I hadn't yet been seen. (I may be wrong here, but shouldn't a dr refer me to a speciality, as they've actually had medical training!). I eventually was taken through to A&E (was in SAU) and waited until 1AM Sunday, when a surgeon saw me. He said he couldn't see anything, so did I want to be discharged, or admitted and they'd monitor the pain. I opted for the latter....he told me they'd get a bed sorted for me (still on one of those trolley thingys), and that I'd get something to eat...I got a stale tuna sandwich . Twice I crawled out to the nurses station begging for pain relief....Well, I'm still in there at 9am when the consulatant surgeon came round with an anestatist (sorry, can never spell that one lol). Took one look, and said right, your having surgery...we just need to find you a bed. He asked who had done the previous one, I had no clue, and if I'd gone to my clinic appointment...er...what appointment, I never heard anything about a clinic appointment!. To say he was less than impressed was an understatement. So, I signed my forms, and waited. 3pm Sunday afternoon, and a bed was finally found and I was taken to theatre at 5pm. I was finally given my anti-nausea meds (after I told the anestatist that I'd been sick twice and had kept asking for it on the ward) and then had to break the news that I was still in my pjs...no gown. Again, less than impressed. So, put under, surgery completed, had a stale ham sandwich lol and waited to be discharged the next day. Was booted out of bed at 9:30am, and waited until 2pm to actually get my meds and be discharged. And no, they didn't feed me lol. (and clinic letter arrived a few days later )
So, passed to GPs and DNs again was I. My GP has been fantastic to be honest, changing my pain meds, and keeping an eye on the wound for me. So been going to surgery for weekday changes, and had DNs round for weekend ones. Until this week. I recieved a phone call from the surgery, telling me that apparently the DNs will no longer be coming to see me as I am not 'incapacitated'. I am now to go to the hospital walk in centre every saturday and Sunday to get my dressings changed. They do not operate an appointment system, so I should get there for 10am cos they get busy. (obviously everyone else who's in the same boat as me will be there too, plus the sick people lol). When I said to her that I can't get there (I can't drive, plus wouldn't be allowed to on the drugs I'm on even if I could, and there is NO public transport whatsoever on a Sunday, and I don't qualify for Patient transport) I was told to get a taxi. That would cost me £25 a DAY! I can't afford that. My mother is now helping me change the dressings....I have to accomadate her shifts obviously...and I am gretful to her for the help .
So, (after all that!) what can I do? How can I fight this? I don't think it's too much to ask to have the DNs come round to change my dressing (a 5 minute job for those with training). I just want to heal lol, and not have ANOTHER one....any suggestions?