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[THR] teenager hip replacement after SUFE

Discussion in 'Hip Replacement Recovery Area' started by jasminesmom, Oct 1, 2014.

  1. jasminesmom

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    My daughter had been limping for months (normal weight at 12 years and very sporty). Doc said growing pain but it wasn't! She slipped in school, diagnosed with severe slipped upper femoral epiphysis. Four weeks in hospital, four large screws and months of rehabilitation. Movement loss and flagged up to surgeon about pain.

    Year later, no improvement, surgery to take screws out, steroid injection into joint. Relief for approx 6 weeks. Back to hospital in pain, unable to do any sports or walk around town with her friends and takes more pain killers than her grannies. I am told that her bone is still healthy but her joints have collapsed and cartilage has thinned. Not sure if this is the same joint/cartilage because we have very little time with her surgeon and communication is quite poor.

    Basically we have been back and fourth to her surgeon many times over the past two years and what could go wrong has and is going wrong. My daughter Jasmine has a leg length difference of 2.5cm which makes her walk with a bad limp. Surgeon said they would rectify this if it got to 2.5cm which it quickly did after her initial surgery. I think this is because her joint collapsed and cartilage has thinned but I'm given very little info about any of it.

    She has been in almost constant pain and becomes upset almost every day that she can't join in with every day activities with her friends and sports. she was a keen surfer and loved running around.

    jasmine had the four screws removed 9 months ago but this did not improve her limp or her pain. When she has overdone it (walked around town for a couple of hours) she can barely walk or put any weight on her leg and has to take painkillers and rest for the next day. I took a video of how she walked and showed it to her surgeon. More scans, more steroids and we were told that Jasmine needs a new hip - great ! At last she can be pain free and regain some normal teenage life.

    Oh yes, nearly forgot, I have been trying to get them to address her leg length and were told that she could have an op in good leg that would inhibit the growth in the hope that the bad leg would catch it up and make up the difference. She can't wear nice shoes/flip flops etc and as you can imagine this is a BIG issue for a teenage girl. Now they said they had left it too late for that and she had stopped growing despite my continued requests for info about this from the beginning (now two years). Soooo, surgeon said that with a new hip they could make it longer on one side to level her out.

    In July she was told by surgeon and registrar that she needed a new hip and that was going to be the only way she would be pain free and lead a normal life. She had a scan a few weeks ago and I rang to find out what was happening. I would like to organise a family holiday and make sure her schooling is sorted out.

    So I rang to speak to surgeon. Secretary informed me that no appointment is due until February which is a normal 6 month follow up. I became upset at this and asked about the hip replacement and what time frame would we be looking at. Was informed that registrar doesn't want her to have hip replacement because she is too young. Too young for what ?

    They already told me she has stopped growing. I have told them until I'm blue in the face how much pain she is in, how sometimes she can't weight bear, can't ride a bike, can't reach her foot to put her sock on etc etc. I have told them about the quality of her life and her increasing withdrawal from her peers and lack of confidence etc. I don't know where to turn or what to do. How long does she have to wait? Why is she waiting? what can I do?
     
  2. Jaycey

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    @jasminesmom welcome to BoneSmart! I am not a medical expert but I suggest you fine another surgeon who is more up to date with younger patients. There is no age limit for a hip replacement! I am considered young for THR but just had my second one (I am decades older than you daughter). Life is too short to live in pain and decreased mobility. I'll tag @Josephine our forum nurse so she can give you so expert advice.
     
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  3. jasminesmom

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    Thank you for replying. I think its the registrar who is reluctant for her to have hip replacement. I'm trying to get a second opinion but don't even know where to start with that and I'm sure its likely to be a lengthy process.

    I've asked my daughter to write down how it feels, what she goes through everyday so I can send it to the doctors who are in charge of her care. I don't know if I should raise a formal complaint, there's been lots of failings with her care so far and she is suffering the consequences of them every day.
     
  4. jasminesmom

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    How many hip replacements are you expected to have? How long was recovery? How long do they last? Can you do sports now? She's just started her GCSEs and has a tough two years ahead of her
     
  5. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Oh my dear good lady, I can feel the anguish you are feeling from your words. Sadly this is a fairly typical story for SUFEs.

    How old is she now? If she is still 12 or 13, then it will be very problematic trying to find someone to doa hip replacement yet. Though someone told you this
    they didn't mean she had stopped growing totally, just that the upper end of her femur had stopped growing. This would be a reason why a hip replacement on an adolescent wouldn't be a good idea as the rest of her body would be out of kilter very quickly.

    It's unlikely the registrar is blocking the idea. He will only do what he knows his boss's opinion is. It's a very tough call and one each consultant has to make on his own.
    I may be able to help you with this. If you would tell me whereabouts you live, which consultant and hospital you are going to and if you are able to consider travelling a distance to get your daughter treated, I will have a look at chaps I know and see who might be a good place for you to get a second opinion.

    It's actually quite easy to get a second opinion but you have to be fairly determined about it. However, from your posts, I have no doubt that you are good at being determined! What you do it to take the name of the surgeon I give you to your GP and tell him you want to be referred to him. This is perfectly allowed as you can see here NHS choice: Patient's Charter and your right to choose.

    What you must not do is allow your GP to choose for you or send you to one of your present surgeon's colleagues as they are unlikely to be the kind of surgeon you need.

    Talk to you later ....
     
  6. jasminesmom

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    @Josephine Hi. Jaz is now 14½. I was told that the year she starts her period will affect and slow down her growth. I've tried to look online at there is but little info other than leg length op is critically timed???

    I've spent the entire day writing an email with her history to the health board. So far its taken me four hours and I'm not yet complete.

    Her consultant/surgeon is Dr Claire Carpenter at the Heath Hospital in Cardiff and I'm not sure of the male registrar's name, we have only seen him once in two years.

    I gave up work to be at home for both of my kids and willing to take her anywhere to be seen.

    I'll post the email to the board when it's finished if that's ok
     
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  7. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Thanks that's helpful. The registrar's name is immaterial as he'll be off to another place for more training shortly!

    I'll do a little hunting around and see who I can come up with. Be back shortly.
     
  8. jasminesmom

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    sorry its long -
    I am Jasmines mother, Kirsty and I'm writing to you as a last resort with regards to my daughters care she has received over the last two years from GP to Cardiff Hospital where she was diagnosed with a Severe Slipped Upper femoral Epiphysis diagnosed after slipping on water in school on the 10th September 2012. I will start a few months earlier than that when her symptoms first began in 2011.

    2011 unsure of exact dates - Jasmine complains about pain in her thigh and knees. taken to Dr. told us it was growing pain. in the next few weeks/months she begins to complain more and more and starts to limp.

    2012 (early) took her back to doctors because her limp was getting worse and she was beginning to walk with her foot out to the side. told again it was nothing to worry about and was growing pains. I now start to tell Jasmine that she waling with a limp because she is putting her foot out, causing the limp. Jasmine complains she is in a a lot of pain with knee and upper thigh. I ignored these complaints and said to her the doctor said it was growing pains and they wouldn't last forever.



    2012 - unsure what date - Jasmines grandmother took Jasmine back to GP who said it was growing pains but that he would refer her.

    After a summer of Jasmine unable to walk far, run and complained frequently about her pain and limped quite badly she returned to school to start her new academic year.

    10th September 2012 - Jasmine slips on some water in school and an ambulance is called because she cannot stand and is in excruciating pain. on our arrival to hospital xrays reveal she has a severe SUFE. she went into surgery to have it manipulated into place in Swansea's Morriston hospital. The surgeon at Swansea said judging by her xrays her Sufe had been happening over o long period of time and had slipped, fused and fully slipped. That surgery was unsuccessful to reposition her hip and we were told she need to go to the Heath to a specialist

    After 10 days in skin traction at Morriston Hospital we were transferred to the children's ward at the Heath in Cardiff where we met Dr. I took care of Jasmines personal hygene and care throughout her entire stay at both hospitals.

    Dr told us that the biggest danger for a Sufe was blood supply to the bone and if that had been compromised Jasmine would be in a wheelchair for a long time, best case scenario was to pin the joint together. The other side was Xrayed and checked and we were advised it didn't need pinning. Only pinning one side could have complications with regards to leg length difference but this wouldn't be an issue unless it grew more than 2.5cm. This wouldn't be an issue at all if both sides of the hip were pinned at the same time. we were advised that it was unnecessary to pin both sides.

    Unsure of exact date but was a Friday in Sptember- We signed the consent forms and Jasmine went into surgery to have screws put in place to stabilise the joint.
    We had been informed that the operation would be a couple of hours but after 4 hours I asked at the nurses station about Jasmine. I was informed that they had trouble giving jasmine the epidural and had to call another anaesthetist to give her a ''Block' instead. We were told this was the reason for her being in theatre for much longer than expected.

    Jasmine was finally brought back to the ward approx. 5, maybe 6 hours later. Still groggy from the anaesthetic and on a Morphine machine that I was advised she could press when she wanted.
    Jasmine had four screws to hold her joint in place and had a broomstick cast on.

    Jasmine was groggy for a number of hours but almost immediately began to complain about her cast being too tight around her ankles and her foot was numb. This was her good leg (left)and not the side she had surgery on. I asked the nurses to check this. the nurses couldn't put the tips of their little fingers between the cast and Jasmine's ankles, and was less of a gap on her left leg, the one jasmine was complaining about. her numbness continued and the next day I asked the nurses to look at the cast again. on Saturday or Sunday (unsure) a trauma doctor was called to the ward to look at the tight cast. He cut away two small sections of cast at both ankles to relieve jasmine's numbing ankles but her foot was now very numb and jasmine couldn't lift it up. The broomstick cast was cut off early due to numbness and neurology was called to assess jasmine's now damaged nerves in her foot. Jasmine could not lift her foot or her toes and she had loss of feeling to foot and toes. tests showed that she had nerve damage in two (or three) areas, one in spine, maybe the knee but mostly in the ankle.

    Jasmine had electrical testing done on her 'drop foot' and we were told that nerve damage had occurred. Electrical testing was painful for jasmine and we were told that nerve damage would take a long time to heal. Jasmine was out of her cast but unable to move and confined to the hospital bed. jasmine was released home in a wheelchair and we adapted our home to help her. she changed rooms to downstairs, we were given sliding boards and I got hold of a commode for her to use with my help. Although she could barely move her good foot, at this stage she was unable to weight bear and was confined to her wheelchair for a number of weeks. I took time off work to care for her at home.
    We went back to hospital 6 weeks later for a follow up and were seen by neurology immediately after her trauma clinic appointment. jasmine's scar was healing but the foot drop was no better. Again were told that it would take time to heal and may have been the cast or may have been unsuccessful epidural or because Jasmine had been on her side for too long during surgery. Jasmine was referred for Physiotherapy at Morriston hospital for as soon as Jasmine's surgical wound had healed. Every time we had a trauma appointment at the Heath we also saw Dr who checked her footdrop and big toe for any improvements, which there was little but, got better over the space of a year.

    Jasmine underwent months of Physio and worked hard to recover. When jasmine was able to weight bear she continued with physio but was finding her range of movement difficult and painfull and also had to wear a foot splint to prevent her from falling over her nerve damaged foot. Helena flagged up that Jasmine wasn't progressing and was in quite a bit of pain with her hip despite working hard to recover and wrote to Dr Carpenter asking for Jasmine to be reassessed. Jasmines leg length appeared to be quite noticeably different which made her limp. she was referred to Phillips Parade where they assessed her for a insert she could wear in her shoes.

    Jasmine was reassessed and it was clear that Jasmines movement range was limited. Jasmine also had to wear a foot splint due to foot drop. Jasmine had further electrical studies done, this time in Swansea which again, she found very painful. During that test the neurologist informed me that Jasmine had considerable nerve damage to her foot and big toe that would have been caused by a compression on her ankle - the cast. We were told that there was a faint sign that her foot still had a nerve response and over time it would heal but how long that would take was unclear. Jasmine wore the splint for a long time but eventually her foot got better but her big toe took much longer but has now returned to normal. I'm unsure of the exact timeframes for this but every time we saw Dr., we also saw Neurology. leg length was discussed and we were told that it wouldn't be an issue until 2.5cm which jasmine was not far off. I was told that she could have an operation at the back of her knee on her good leg that would inhibit the growth in the hope that her bad leg would then catch it up to make up the difference. This would be calculated and assessed within the same year that jasmine's periods start as the timing of the operation is critical to calculate her estimated remaining growth . Jasmine started her period a couple of months after leaving hospital at end of September 2012, early 2013. we were told that a teenage girl grow at a certain rate a year but periods will have an effect?? - Not a great deal of information regarding this offered to us.

    Jasmine expressed to Dr. that she hated limping, and hated even more wearing a foot insert which limited her type of shoe and had to wear a high topped trainer so her foot didn't come out of normal shoes/trainers. Both Jasmine and myself asked about her leg length difference every time we saw Dr but feel this subject has been ignored. We were told that she would monitor this and have the leg scanned and measured, at the last scan Jasmine's difference was 2.4cm. Jasmine can no longer wear nice shoes/high heal/flip flops etc. and walks with a prominent limp and is clear to see her leg length difference. she walks around the house with one foot on tip toe. I have concerns for her posture and future back problems due to how she walks.

    Unsure of time frame but possibly Autumn 2013. Filmed Jasmine when after she had been walking around town for a couple of hours with her friends. I showed Helena Webb who wrote to Dr carpenter regarding Jasmine's movement range and the pain Jasmine was in. Helena web signed Jasmine off because she could help her no more with her range of movement.
    I showed Dr the video of jasmine and she agreed that something wasn't right. She scheduled Jasmine to have the screws out as soon as possible leg length was again discussed. At this point the nerve damage to her foot had healed but she still has difficulty with her big toe.

    Jasmine had her screws out in early 2014 and given a steroid injection. after a few weeks recovery and physio jasmine felt some relief and for the first time she could reach her foot to put her own sock on. unfortunately this was short lived and I returned to hospital with Jasmine after approx. 6-8 weeks.

    At some point (unsure when) we were told that Jasmine's cartilage had thinned and this was possibly causing the pain Jasmine was experiencing and why she had on going limited range of movement.
    we were also told that jasmine's joints had collapsed and that was why her leg length was quickly different. This was not told to us until a few months ago. again, information about this has been limited in the 10 minutes we saw her doctor.

    After the steroid injection wore off I rang the trauma clinic for Jasmine to be seen again. during this appointment Jasmine was Xrayed. Both Jasmine and myself told Dr about the pain Jasmine was in and the limitations she has to deal with every day. Both Jasmine and myself became upset during this appointment and both cried. It was discussed that Jasmine needed a hip replacement because all else had failed and she was still in pain finding every day activities hard to do if not impossible. Jasmine was booked to have another steroid injection under anaesthetic. jasmine had the steroid injection and sent home. I asked again about her leg length and we were told that a new hip would be made and lengthened to compensate for leg difference. Great ! finally something was going to be done about my daughter. No time frames were discussed and later that day Jasmine was sent home. Again, the steroid gave her a few weeks pain relief but again, quickly wore off. Jasmine had a scheduled follow up appointment that I couldn't attend and my father took her. It was not her usual Dr she saw but was asked to seriously think about a hip replacement??? Jasmine came home upset at this, telling me she'd had enough with her hip and what was there left to think about.
    a scan letter came a week later which Jasmine attended. I rang up a couple of weeks later to find out what was going on with her care. I was told she didn't have another appointment until February next year. I became upset (again) and asked for the surgeon to call me to let me know what was going on. I missed the call from the surgeon (phone out of signal) and called back this week. I was told by Dr Carpenters secretary that the registrar didn't want Jasmine to have a hip replacement because she was too young.
    Communication has been quite poor at nearly every level.
    I have so many unanswered questions with regards to her leg length. When will that now be addressed? if there is no new hip in the foreseeable future, will Jasmine now have the operation at the back of her knee which is apparently supposed to be done with critical timing? has that time now passed and is too late? how long is she supposed to suffer for? till she's 16 17 18 20's?
    I feel that Jasmine is being let down with her care and has been put on a shelf to live with a disability and in pain. I have just touched on the facts as I can recall them, but I have not in any way touched on the impact this has had on Jasmine and the impact this has had on our entire family which, as far as I can see there is no light at the end of the tunnel for any of us.
    I'm not demanding that my daughter has a new hip. I would like information as to why she needs one but isn't getting one yet.
    All I want is for someone to take a look at her history of care, to look at her current care and look at her long term care and explain to me what's going on because we are now at a standstill.
    I would also like to see all of her medical records from both Cardiff and Swansea.
    I hope someone can help us
     
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  9. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Quite a story there. But who do you mean by "the health board"? If you mean the primary care trust? If so then I can tell you now that it's wasted effort to send this to them or any administrative place for the matter. To begin with it's far too long and detailed and they just won't read it because they won't understand it. But they are also the wrong people. This is uber specialised stuff you're talking about and even a regular orthopaedic surgeon won't know what to do with it. I can help you far more than they will.

    However, I did understand it and it will help me pick out one or two chaps that just might be interested in helping.
    Do you want to ask me to explain? Ask me any questions and I will be happy to answer. As you can see from my signature, I've been in orthopaedics a very long time and will probably be able to answer things better than any "health board".
     
  10. jasminesmom

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    my local health board gave me an email address to write to, detailing her care and any concerns I have. I said I wanted someone to look into her history to see if there was anything anybody could do. advised to email these people who might be able to at least investigate. I don't want to complain but want some answers which as yet have either been ingnored (leg length) or unexplained to us. I want to fight for her to have the best possible outcome for her future and am willing to email as many people as possible to gain advice.
    It's my job as her mother to fight for the best possible care for my daughter and I need to know the right path to take, if indeed any. I would feel very useless had I not explored all the angles and just want some of the nagging questions answered by the people who are caring for her.
    if she has to wait years for a new one, so be it. we will try to adjust our lives to make it the best it can be for her.

    ABM.Complaints@wales.nhs.uk this is the email address I was given. I was told my initial email will be looked at to see if any help can be given to us.
     
  11. jasminesmom

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    with regards to her leg length - she limps quite badly and walks on tip toes to compensate. she also complains that her back hurts when she stands for longer than 15 minutes. Surely something can be done to rectify this? when do females stop growing? what effects will this have on her posture/back/calf muscles in the long term
     
  12. jasminesmom

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    If they know now that she needs a hip replacement, what are the benefits of waiting possibly years to give it to her? We were told that a new hip would be the only way Jasmine will be pain free and lead a normal life.

    Her confidence in herself is at rock bottom. I feel she needs the benefit of a new start as soon as possible rather than waiting years. Our personalities are formed and changed in our teens. It's a hard enough age to go through when kids are normal. I'd like nothing more than to see the confident child I raised to returned to us. My daughter was never a crier, however, in the last year she cries often, always about her hip, her hateful hip that stops her joining in with sports, stops her surfing, stops her walking around town with friends, gives her pain, makes her feel like no boy will ever want to look at her because of the way she walks. She can't get a job (she hates me for that one) makes her feel abnormal, disabled in some ways. She spends more and more time in my company when she should be spreading her wings and socialising with her peers. I try not to make a big deal about it to her, tell her she's a strong young lady, not allow her to wallow about it, but that's getting harder and harder to do.
     
  13. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    I've found a three - all specialise in 'young adult hips"
    Matthew Wilson Royal Devon and Exeter Hospital
    Nigel Kiely Robert Jones & Agnes Hunt Orthopaedic Hospital
    John Skinner Royal National Orthopaedic Hospital

    I'd be most surprised if you got anywhere with them. As I said before, this is very specialised stuff and so you need a very specialised surgeon to look into it.
    Of course it is and I admire your determination, I really do.
    Leg length differential occurs for two reasons:

    1. because one of the legs has had interrupted growth. I know this applies in Jaz's case because your were told it was 'too late' and it had stopped growing. Now this doesn't mean SHE stopped growing, just her thigh bone did.

    2. because to accommodate the pain, it's common for people to tilt their pelvis - see the article I linked above.

    I don't know how much you've studied on the nature of bone growth so forgive me if I cover ground you've already trod. But in infancy, long bones like the femur are in three parts, a diaphysis in the centre creating the shaft and an epiphysis at each end creating one side of the joint. In between is a growth plate where the bone growth length happens. This point is made of fibro-cartilage and is a weak point in the bone. This is how the upper end epiphysis can end up being displaced, because the growth plate has failed. It can occur because of trauma or for no apparent reason at all.

    Obviously this happens to adolescents as they get heavier and more active (this doesn't mean they are overweight) and then we have problems. The first step is always to pin the hip in the hopes that the whole thing will re-establish and carry on developing normally but it rarely works.
    I answered this above.
     
  14. jasminesmom

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    thank you, do I ask the doctor to be referred to one of the specialist you've recommended ? Shall I write to all of them ?
     
  15. Josephine

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    It's not about the benefits of waiting years. Obviously there are few benefits in that. It's about the hazards of doing a hip in such a young person. But did you read my previous post where I addressed this question? (post #5).
    I also gave you advice on how to request a second opinion in that same post #5. Please do read previous posts in this thread otherwise I am forever repeating myself! I think you should read about each surgeon sing the links I have given you and make a choice, bearing in mind the travelling involved.

    I hope I've answered your questions thus far. Please do ask anything else you want to. I have this thread on email alert so, barring being in the kitchen cooking my tea, I shall know as soon as you post!
     
  16. jasminesmom

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    thank you so much, I will go through all the advice you've given me later after feeding my hungry teenagers. I leave you to your T now, promise !
     
  17. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Oh that's okay. I'm used to it!
     
  18. jasminesmom

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    Mathew Wilson is my choice.. I'm making appointment with our GP today and will ask to be referred as soon as possible.
    Thank you x
     
  19. jasminesmom

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    quick update - have made appointment with GP but also emailed the secretaries of your recommendations and had a reply from Mcabe Elizabeth (Royal Devon and Exter NHS foundation Trust)
    The secretary is passing the info to Mr. Mathew Wilson & Mr Howell who specialise in young adult hips and has asked for copies of Jasmine's medical records (requested those already). Also spoke to her Physio therapist in Swansea who is happy to write a report on Jasmine. I feel a tiny bit closer to a second opinion, even if it's the same outcome, at least I've tried my best for her.
     
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  20. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

    Member Since:
    Jun 8, 2007
    Age:
    76
    Messages:
    78,662
    Gender:
    Female
    Location:
    The North
    Country:
    United Kingdom United Kingdom
    Wow, what a difference a day makes! Here's wishing you all the best.
     

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