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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Dawn
Hope you had a lovely day at the wedding.
Best wishes, Julia x
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Thanks again everyone who as posted responses to me!!! I had a lovely time at my friends wedding its was a fab day and I almost forgot about my issues :) I got a phone call from PALS this morning and a lovely lady called Jane is on my case now. I will update on my ongoing saga when I know more. Hope you all had a lovely bank holiday weekend :)
Love Dawn x
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Great news Dawn sounds like you are now heading in the right direction !
Keep us posted.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Dawn , welcome sorry its a bit late as ive been off line for a few weeks
Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hello thanks to all for the responses I have finally yeppeeeeeeeeee been given a date I am seeing the nurse on the first available appt is the 20/9 that is ok but still weeks away!!!!! My nurse did not sound happy that I got PALS involved so I will see how it goes but If im not happy then I will ask to change. It just feels like I should have not got PALS involved, anyway I wil soon find out!!! I have just asked NRAS for some posters so I have been everywhere asking can I put them up and all have been positive to put them up. I am also contemplating on entering into one of my mags and really pushing RA as a topic of conversation.
Oh I do feel better now I have vented a bit so I will see how it all goes and keep you all posted. I think I will do a thread on lack of service from rhematoid dept?????
Hope you are all ok :)
Love and best wishes
Dawn xxx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Oh I am pleased Dawn that you have the appt for the 20th, not too far away. I can understand you point regarding the nurse s attitude, but again she has not been the one suffering so don t concern yourself. Your situation was dire, and you had no alternative but to involve PALS so don t worry, anyway the first nurse I saw ( at a different hospital to the one I am at now ) was absolutely terrible so I doubt if her attitude had anything to do with PALS, just having a difficult day.
Well done with the posters and magazine really good idea.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Dawn Great you got your appointment even though it meant going through PALS. Don't worry , they should have returned your calls etc and then you would have been happier and not necessary to have contacted PALS> Great news though Rose 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Dawn Well done you  Definitely the way forward and that's what PALS are for. The 20th will soon come round so make sure you start jotting down all those questions so you don't miss anything! Well done with the posters! I recently took lots of NRAS group launch posters around the Fylde area and the response I got was very positive. I think the more we can raise awareness of RA and NRAS the more we will all benefit in the future. Do you have a local group in your area Dawn? (sorry not sure what part of the UK you are in!) Take care Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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 Welcome Dawn *waves* So glad you have got a date to see the nurse. The 20th seems like an age away but it will soon whizz round. Don't worry about having to get PALs involved, thats what they are there for and while it might seem that the nurse was not happy, she's not in your position and I'm sure deep down she realises that things need to improve. PALs do a fantastic job, they can cut through all the red tape that often frustrates us. I'm using them at the moment after surgery I was waiting for exceeded the 18wk target. The hospital involved were not the most helpful, and truth be know the managers I dealt with were quite arrogant. PALs have taken that stress away from me and in the meantime I can feed back to the hospital that patients are not just a hospital number, that their actions actually affect a person. Without our input, positive & negative, hospitals can't improve their service... Looking forward to getting to know you  Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Dawn, good for you for involving PALS, its something more of us should do. Dont worry about the nurse, you deserve better treatment, and have a right to complain. I have had a couple of things happen that I am not happy about, but havent done anything. I also phoned the nurse and waited 2 weeks for her to call back!! They said they had to speak to my consultant before they could call me!! hmmmm!! Anyway, welcome to the forum and please let us know how it all goes, take care xBARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hi Lyn, Helly and Barbara
Thanks for your replies, I am on hilday the week before my appt so that should make time go a little quicker. I have had a really tired and aching day today and feel like I am carrying an extra 10 stone!!!!!! my other half said I should ensist on an earlier appt so that i can enjoy my hols but to be honest it wont be any quicker, the NHS are already given me their 'earliest appt' so the 20th it is.
I have decided to try and join a group in bolton if I can for the next one in oct, hopefully I can learn more as a rhemmy doctor will be attending. I am just waiting for my posters and leaflets from NRAS to put up around my gp and other areas, so I feel like I am doing my bit!
Hopefully tmw I will have enough energy to at least sit outside and enjoy the sunshine :) I am happy that at least on this forum I can have a moan and people understand how I am feeling and dont think because they cant see an illness you are ok!!!
I am having a meeting with my work managers next week as I have not been to work for over 2 and half years due to having a baby, having both hip replaced at differnt times and being diagnosed with RA. Thet have not been supportive I guess i am a number and thats ok with me. I am looking forward to having our meeting as at least my HR lady listens and i can update them on my postion, i do hope I can go back to work in the near future but feel at the moment thats not possible :(
Thank you to all who have given me the time in your responses and have given me strengh when i felt I had none xxx
Best Regards
Dawn xx ( I will stop moaning now!)
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Dawn, a rather belated welcome. Really glad the wedding went well, as you say doing something different tends to take your mind off things. I was also pleased to see you finally managed to get an appointment. As others have said don't worry what the nurse thinks, she's not the one suffering, you definitely did the right thing by involving PALS. The stress you've had to go through to get the appointment doesn't help the RA. With best wishes Sheila
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Dawn Don't apologise for anything, ever on this forum, it's an unwritten rule! It's here for everyone to moan, groan, be happy, be sad etc... we understand and we all need to steam away at times!! It's so good to be able to share our feelings in the knowledge that others have probably had similar experiences. I see you are thinking of going to the next Bolton meeting; Jean helps run the Bolton group. We are just starting a new group in Blackpool, Fylde and Wyre and I thought I might pop along to Bolton for that meeting to see how things work. Whereabouts are you? It would be really good to meet up and I'm sure Jean will be pleased to see us! The 20th will come round quickly but give you time to gather your thoughts. Are you going away on holiday? Sometimes it's just good to have a different set of walls to look at!! Well, that's my excuse! Good luck with work next week, hope you are able to reach some satisfactory resolution. I was off ill long term but ultimately had to take ill health retirement, but that was a long time ago and things have changed since. I think it was right for me at the time though. Stay positive Dawn ... things do get better, really! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hello dawn I am jenni, 34 and have a hubby 2 older children and an almost 3 yr old daughter. been dx many yrs now and have severe RA. If you ever wanted someone to chat to- ring NRAS and I am one of the volunteer call people. Love and best wishes Jenni how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Thanks again for all the responses, jean its nice to know that we can all have a chat on here and different names keep popping up!! Lyn thank you so much for the response, I will hopefully be attending the bolton group it all depends on times for me. I would be happy to meet you and would be lovely to meet Jean. I am going away on holiday next week to venice to see friends for the week and hopefully get some warmth in my bones!!! I have arranged to see work on the 24th so who knows what will happen but really they are not too bothered as I am being paid by their insurance at the moment. I have had a great day today I have completed 30 lenghts of the pool and feel good up to now!!! just need to try and keep active and healthy :)
Jenni thank you for your response I am sure I will calling on you soon if things dont get any better with my appt as I have a feeling when I see the nurse on the 20th I will still have to wait for meds as she will not be able to authorize them and ohhhhhhhhhhhhhhh i will be cross if thats the case :( will keep you all updated on my tiresome moans and groans on the subject but I know I am allowed to moan so I will :)
Take care and best wishes
Dawn xx
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hi all, Just an update on my ongoing saga....... i made my appt today I sat in the waiting room only to be told 'we dont have you down for an appt and dont have your notes' you can imagine my reply, anyway I did get to see my rhemmy nurse and she was lovely. I finally got my meds!!!!!!!!!!!!!!!!!!!!!!!!!!!! yepeeeeeeee so i start my lefludamide next week as I am a bit run down at the mo so she recommended i leave it a week before starting it. I had a fab holiday in Italy with my lovely family and the best bit of my hol is my long term partner Graham finally after 20, YES 20 years together asked me to marry him and of course I said yes. I am quite happy at mo and feel that my appt with work on the 1/10 will not stress me out at all.
I think I will write a letter to my local hospital regarding the fact that I had to wait too long for meds and my rhemmy nurse said today she is the only one who can see me apart from the rhemmy docs but they pass us onto them anyway????? how crazy is all that nonsense??????
If anyone as any ideas that they can help with me regarding what to put in my letter please forward them to me, and I will have a great deep satisfaction writing that!
Hope everone is well and I send all my best wishes to those who are feeling a bit poorly xxxxxx
Take Care
Dawn xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Dawn
Congratulations on your forthcoming wedding ! Fantastic news.
Really pleased you eventually have the meds in place for next week, I am just in the same boat at the moment will all the delays with the hospital and also feel like contacting the PALS like you. Everything seems to take so very long, its has taken four weeks from the time I saw the nurse to getting the first blood test for anti tnf, this particular episode starting at the beginning of July. As it is often expressed on here long delays really don t help as it pulls you down, let alone the stress aspect, very frustrating to say the least.
Take care Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Dawn,
Many congrats of your forthcoming wedding brilliant news. Have you a date set yet ? Also your holiday
has certainly done you good.
Gosh what a mix up at the Hospital - thats awful. However meds to be started shortly - Hooray. . . . .
I have been similar to you and julia rather than repeat myself see post on Work - esa. Awful position
and it certianly does pull you down. Lovely and sunny today though so I intend after my blood test at
GP surgery this afternoon to treat myself to an ice cream and sit on the sea front. Will be good for mood.
Take care and keep posting.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Dawn,
Congratulations to you! I am very happy for you.
You absolutely must complain about the appointment mix up, even though the hospitals are busy etc there is no excuse for you not seeing a proper rheumy.
Tell your GP what happened and she if they can help you if not you can contact PALS for advice, or NRAS.
Everyone should see a Dr and be prescribed their meds via them. They will need to be monitored too.
Good luck!
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Dawn So pleased you enjoyed your holiday and wow ... what a surprise! Congratulations on your news, I'm not surprised you are happy and long may that feeling continue. Try and remember that feeling it will help you through the tough times Aren't hospitals such a pain at times?! I can understand your annoyance at the system, it's just not good enough. It really is the job of the rheumatologist to sort out medication depending on your clinical needs. Once seen you may then be passed to a nurse to organise the drugs and sort out monitoring and follow-up. A letter is in order (although one has to bear in mind that you have to deal with these people in the future!), you should have access to an appropriate doctor when it comes to assessing needs, but perhaps a word with your GP/Pals first might help to iron out any possible confusion/mistake. Hope you get a positive outcome . Good luck with the meds, hope they don't take too long to kick in. Fingers crossed for you, Lyn x
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