Guide to dealing with a pilonidal using the NHS

Discussion in 'Pilonidal Discussions - UK Forum' started by natabz, Jun 9, 2008.

  1. natabz

    natabz New Member

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    Hi all,

    Thought it would be worth putting any tips we've picked up whilst trying to get treatment using the NHS - put down anything you found helped you to get seen quicker, or get an appt, etc - it'll hopefully help the newbies!!

    If you can't get a GP appointment on the day you want and you think it's infected, make a nurse appointment instead - they'll call in the GP to check it over before they give you antibiotics. :)
     
    Butnoska and Tonster found this helpful.
  2. natabz

    natabz New Member

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    Also, if you require gauze/dressings/saline, ask the practice nurses and they'll give you it free - saves trying to track it down yourself!
     
  3. Dawn1

    Dawn1 New Member

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    Great idea Nat

    Even though some GPs / nurses provide you with your dressings / saline / gauze etc for free - some of them say they have run out / dont stock it, etc and write you a prescription to pick some up. This happened to me a couple of times.

    They now have this pre-pay Prescription thing which works out way cheaper than having to pay £6.95 per prescription - but annoyingly doctors are not forthcoming with this info. This covers ALL your prescriptions either over 3 months, 6 months or 12 months. I know i would have saved quite a bit of money if i had known about this at the beginning of my pilonidal journey!!

    http://www.ppa.org.uk/ppa/ppc_intro.htm
     
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  4. UkDude

    UkDude New Member

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    £7.10 from April 2008 :)
     
  5. natabz

    natabz New Member

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    Yep, in Scotland the current prescription charge is £5, and apparently it's totally free if you live in Wales!! :)
     
  6. suzanne

    suzanne New Member

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    i will say district and practice nurses are brill.. they cant do enough..had my op in march and had daily nurse for ages....... mine even popped round to see how i was !!! it happened not great and took time out to look at it... and sneaks dressings in etc !!!!!! xx its lookin like its back as have some swelling and lots of pain above the initial area... but reading on here what some people have been through..................x[:^]
     
  7. gollum's damn ring

    gollum's damn ring New Member

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    Hm, Tips?
    Not sure if this one counts.

    I had a major flare-up and got rushed to a&e by my doctor. The a&e surgeons were going to operate but then decided they wanted a specialist surgeon to do it so sent me home (maybe they didnt have a bed for me either). The pain was insane, and i wasnt sure i could hold out, i wasnt sure they'd done the right thing, but i'm alive to tell the story. The abscess burst the next day and i got some relief, so now I'm having surgery next week with my specialist surgeon.

    I guess this is better than having it done in a&e, that isnt the nicest of places to be, especially when there are no beds and they starve you without knowing on what day your surgery will be. [:8)]
    (actually, a&e is nicer at my local hospital, the day surgery unit dates back to the middle ages i think)
     
  8. had enough

    had enough New Member

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    My top tip is to check if dressings/ painkillers etc are cheaper when not prescribed - I was spending a fortune on prescriptions only to find my dressings were £3 cheaper over the counter!
     
  9. lostgirl

    lostgirl New Member

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    One main mistake I made 3 years ago was being too shy. Make sure as soon as you feel a problem that you go to the doctors and get looked at. And also, tell them exactly how it feels, let them look, do not be afraid to ask questions so you know what to expect or how to look after yourself.
     
  10. MaVeRiCk7

    MaVeRiCk7 Very Helpful

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    Go to an experienced surgeon he/she does not have to be a cleft lift surgeon but experienced enough. If you find your surgeon is confused or thinking too much then he probably has no idea always find a surgeon off the list.
     
  11. pineapple

    pineapple New Member

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    -pre-pay certificates are great if you're getting dressings on prescription. A 3 month one (about £28) pays for itself if you get 4 prescriptions.

    -If you need antibiotics frequently, request a telephone consultation with your GP and you may be able to just pick up your prescription at reception and avoid an appointment

    -When you get referred to a specialist, write down as many questions as you can think of in advance and take them with you. It can be difficult to get hold of anyone to answer you afterwards.

    -be prepared for a different opinion from everyone you meet!

    -I found out by accident recently: if your consultant clinic is running late and you are uncomfortable, ask one of the nurses if you can lie down in one of the treatment rooms. I did this when my clinic was 2 h overrun and one of the surgeons saw me on the way past and came and saw me ahead of everyone! I was lucky but only did this because my back was killing me from standing up!
     
  12. Anka1918

    Anka1918 New Member

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    Does anyone know of a specialist in northern or southern ireland? Or know how i can find out?
    Many thanks.
    Anna
     
  13. margie

    margie New Member

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    ive had a pilonidal abscess for about 2 years now and im 18 years old... the first time i had it was the worst, i had severe sickness and diarrhea and i couldnt sit up at all i had to lay down all the time. ive had it 3 times after that and now is the fourth time, ive been to the hospital for the surgery but they said i have to wait for it to get worse before they take action but knowing how much it hurts i cant wait... does anyone know what i should do??
     
  14. barnarnar

    barnarnar New Member

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    hey margie

    i just had an incision and drainage surgery about 9 days ago.

    you should try compressing a hot towel to your abscess a few times a day. this helps with the pain and also makes softens the abscess for surgery.

    i had a second flare up after five years. the first time i had a flare up i took two courses of antibiotics which managed to take the infection away.

    this time the antibiotics didn't work and therefore had to undergo surgery. while i was taking the antibiotics i was in so much pain. i used hot towel compresses and lots of over-the-counter pain medication.

    i did think it was strange though because i have read on here that incision and drainage is usually done under local anaesthetic but i was completely asleep in an operating theatre when i had mine done.

    i hope you get your abscess sorted out soon!
     
  15. ria crilly

    ria crilly New Member

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    i too was put to sleep. i was a bit upset as when i came round i was left on my back, which was so sore. i did not know what they had doe eg stiched me or what but did find out the next day when i was sent for a bath and told to stay there untill the stuffing came out. to my discust and shock a worm shaped blood coverd thing flowted to the surfece. lol. 9 months of the nurse packin it, i did ask for a nurse to come to my home but was told no, my mum did it at weekends. i was a single mum on benifits i couldnt aford 3.80 every day for the bus to the drs. i missed to much of my college course and failed the exam. i did phone someone and ask if i could get re imbursed for the travile and again was told no. i just dont seem to have any luck with my drs. xxx[:^]
     
  16. dramaqueen72

    dramaqueen72 New Member

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    Always make sure the drs listen, twice i have been rushed into a n e and discharged on paracetamol followed by a flare up of the wound. Trust your instinct if u know it doesnt feel right your probably right u know ur own body.
     
  17. Lizzie

    Lizzie New Member

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    My advice would be simply DO YOUR RESEARCH, there is a lot of info out there so don't always assume your doctor knows best. I am 5 weeks post 2nd op, having the bottom of the wound packed which takes a lot of dressings so I would also say if its just one thing you need like Sorbsan, just put like 10 boxes of the stuff on one prescription as it will cost as much as if you got 1 box, and bearing in mind this dressing costs £40 over the counter in Boots you save alot!
     
  18. Lizzie

    Lizzie New Member

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    MORE TIPS -
    1 - If you have a failed op, stick with wound care - nurses etc, surgeons are like sadists and half of them don't seem to have a clue!
    2 - two words - TISSUE VIABILITY - these nurses are great as they specialise in wound care. Every region will have them.
    3 - keep in touch with how you feel, if you start to feel pain, try and get antibiotics asap as infections can create further problems
    4 - be clear about what you want - surgeons/health professionals do not always know best and you are the one who has to live with it
    5 - Look on this website and ascertain which procedure has most success - I think the Karydakis
    6 - be forthright - only you know what you are prepared to live with and I think that operations should always be the last resort
    7 - And finally, again, RESEARCH!!!!
     
    Bean18 found this helpful.
  19. Lizzie

    Lizzie New Member

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    Final thing - I know this is about using the NHS, but if you can afford it, go private for your consultation (research someone who is worth the money) and they can refer you back to the NHS. This can speed things up as you will get seen privately soooo much quicker. I had my consultation at the Priory in Edgebaston near Birmingham at the cost of around £100. They take their time with you and mine was great - I have two openings that were connected by a tunnel and he suggested irrigating right through, which unearthed a rather vile bundle of sorbsan which had been stuck in their for god knows how long!!!
     
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  20. Pete Morris

    Pete Morris New Member

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    1. As an NHS patient, you have the right (since 2009) to demand which hospital, and which consultant you wish to see. Don't let doctors fob you off with excuses like 'They are not within our Primary Healthcare Trust', or 'They are out of area'. Threaten to use their own complaints procedure if they try to fob you off.
    2. Don't assume that any referral letter will arrive at its intended destination. If you haven't heard from the hospital for a week or so, call their bookings office to check that you are on their system. It took one snailmail and two faxes before The Queen Alexandra Hospital (Portsmouth) received my referral - thanks mainly to the breathtaking incompetence of their colo-rectal secretary.
    3. It's well worth reiterating Lizzie's postings. Following all the hassle in 2. above, a simple phone call produced a consultation with Asha Senapati in a couple of weeks (£150). As Lizze says, you can be referred back to the NHS for the procedure itself.
     

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