What financial help is available!!!!!

I had copies of all my letters from when I was first diagnosed in January 2015. It stated that I filled the CASPAR criteria for PsA and also the criteria for Spondylitis. It also listed all my symtoms. The original consultant, who was very thorough, put me on methotrexate and said that if it didnt improve my symptoms, then I should start Anti-TNF therapy. When I told the last consultant this, he sadi that he wouldnt put me on it. His reason was that if I get a side effect and die, my family wouldnt be happy with him!!!!! My other letters from the specialist nurse, stated how I was feeling and I had also been taken to A&E just before Christmas, as I couldnt walk. If I had the money, I would go private! 

that is outragous how they deny you treatment that could help improve your condition, seems to me that they cant be bothered to keep a check on your condition, I would certainly go down the route of taking them through the legal system, I am sure they would take notice of you then, and would make sure you were examined properly from head to toe. 

Thank you Robert. 

I have reached a point where I am too tired to argue! I think that when I can finally start the new meds, I will feel the need to fight! The trouble is, all of the consultants are locums and never stick around for long. I am tempted to start again and asked to get a referral to a different hospital out of my area. The only trouble with that, would be that it has taken me this long to get to the point I am now! (although I dont know if that is a good thing)! I hate to think how long it would take if I were to start again!!

Thank you for your advice and reply. It does help to go through it with someone who understands x

Your Welcome Lainey we all need eachother in this as we are the only ones that really understand the effects. you might be better off going out of the area if it means seeing someone who has a clue. You wont be starting again as they would have your notes and can take it from there. If thats what it takes to get you back on track then you need to do it 

Hi Robert.

Just thought I would let you know, that I have started my letter of complaint! Think it will be a long one. 

My specialist nurse rung today and said that the consultant who recently un-diagnosed me of PsA and Anklyosing Spodylitis, has now said I need to go back on Methotrexate!!!!!! I said that this medication affected my liver function and she said the consultant told her, that in his homeland of Sweden, they dont worry about that!!!! I also said that it wont help the pain in my back. Apparantly he is insisting it is a mechanical pain, although I know that PsA, can cause chronic back pain and she agreed with me on this. I feel like banging my head on a wall and got so upset about it. I was told that she was writing the the letter asking for me to go on Sulfasalazine, three weeks ago and quite clearly she hadn't done this as she said she only spoke with the consultant about me today. I dont know who to trust anymore. I have now been without any meds for 6 weeks and am struggling to walk!!!

Sorry! Big moan. Hope you are keeping ok x

Hi Lainey 

OMG i dont beleive how poorly you are being treated by them, I would be blowing a fuse at them, I would also threaten them with court action if your condition gets worse because of their lack of treatment, It might be worth contacting your local MP to let them know your not palying games with them, As we all know the problem with our condition is that there are so many medications that are available and each have different effect on individuals. For the Consultant to say they dont worry about the side effects is outrageous so its ok to slow down the Arthritis but its ok to cause you to have liver failure and to put your life at risk WHAT AN IDIOT!!!!!. 

If that is not grounds for you to get another consultant i would be so annoyed, I am trying so hard not to swear at this point grrrr. 

I would write a letter of complaint as brief as possible highlighting the main problems and concerns to be followed up by a more detailed one, only to get a quick response and to get you some treatment as quick as possible. I would also be contacting not just the hospital but the BMA or someone along those lines and tell the hospital that you are doing so, this may help speed up the process if they see you mean business. It might also be worth contacting your local CAB for advice.

I am not bad at present although my Psoriasis is starting to flare up with more appearing in places That i have not had it before only small spots atm but knowing what it is like it will just spread, hey ho. 

Hope you get results fast tske care and keep in contact 

Robert 

Thank you. Unfortunately, I already was on injections. My liver function  test showed that it went up to 233!! Have a feeling next meds might do the same.

Thank you very much. I shall do this now x

hopefully it all works out for you. It is a very worrying time when you can not work again best of luck 

Thank you Robert. Best wishes to you x

 

Hi Robert! 

I filled in the huge booklet and followed your advice on thinking of my worst days. It was a bit depressing as it hadnt dawned on me until then, quite how bad things have got! I havent heard back from them yet. Im hoping it wont take too long. I have also applied for support as my wages dropped to half pay. I had to fill in another huge form from jobcentre plus. They have agreed to pay me some money for as long as I supply a copy of my sick notes from my doctor.

I also contacted the tax credit people and my payments have slighlty risen ( I have 2 children wh are still at school). 

I successfully complained to the hospital about my treatment too!!! I sent a four page letter. My meeting was with them last week and it went very well. I have not had any medication since January and they struggled to answer my questions on why! The consultant kept changing his story and trid to blame the nurse and the nurse blamed him! Its scary that these people are meant to be helping us. The consultant confirmed that he couldnt put me on any meds as I didnt look 'acutely ill', when I went to see him!!! (even though I had been diagnosed and had prescriptions from 2 previous consultants). Two weeks after I saw the nurse and she offered to give me Sulfasalazine.  When I asked why the consultant had changed his mind, he said he didnt want me to suffer!! After another three weeks of waiting, I didnt recieve this, and when I asked why, he said  it wasnt the right one for me!!! He then prescribed Methotrexate, which inflammed my liver last time and resulted in me being taken off of it!!!! Seven weeks later and I still hadnt actually received any meds. The answer came from the nurse and she said that the consultant told her not to send it to me!!!! 

The whole thing was recorded and it ended with them agreeing to send me to see the most experienced consultant later this week. During all of this time without any meds, my contract ended at work, due to me being unfit  for too long!!! If they had acted straight away, then I would have still had a job. 

The whole thing has been a complete disaster. My hand and wrist are really bad, as is my hip! My back is crippling me with pain and I now have to use a stick, to help me walk. 

Sorry, that was a long old rant!!! How are you doing? x

Hi Lainey 

omg that is so bad. With all that evidence you have a very good case to Sue the arse off them and the trust. Something you should seriously look into, They have ruined your health by not medicating you you lost your job because they never medicated you and you have all the evidence to support it they wouldnt have a leg to stand on.  

Hopefully you will hear back from PIP shortly sounds like the rest you have in hand and hopefully once you see the new specialist everything will start going forward with medication and you should improve no end. 

Im not too bad well nothing like how your suffering. Hands and feet are playing up atm, Im having an injection into the knuckle to help with the swan finger and injections into my heals in June to help with the plantis. 

My Rhumy has increased my Methatrexate to 17.5mg for 4 weeks then to 20mg after because of the pian in my hands and feet, but said if it doesnt work next step is Embrel. im back to see him in June too. 

otherwise its same every day pain pain and more pain. 

Hi Robert

Some of my friends have said about getting compensation, but I am unsure if I want to go down that road. I am worried about having to still go to the same hospital after. As it is, my nurse was really rude to me after I complained. She refused to shake my hand dutring the meeting. The good thing is, that the meeting was recorded and I will be sent a copy on CD. I will have a listen to that when it arrives and hopefully that will help me to decide. I really do need the money now that I no longer have a job. I am concerned that no one will ever want to employ me again, after all this time off sick and with a condition that will affect me for the rest of my life. The school where I worked, had offered to redeploy me, which would have been perfect. They were so tolerant of me and my condition. 

Im sorry that your hands and feet are playing up. Its a horrible pain and is so debilitating. What are the injections you are having? Is it a steroid? Cross fingers, your increased Methotrexate will help. It certainly made a difference to me.

Good luck with it x 

Hi Lainey 

I dont think the trust would give you anything but first class treatment if you were to sue them, knowing your willing not to stand for mistreatment they would be very cautious in ensuring they get it right. If it wasnt for them you wouldnt be as bad as you are you may of kept your job etc. 

Im sure once your back to fitness you would be able to work again even being off sick for so long you have genuine reason for it ........ Lack of medication and medical help. 

I think its a hydrcortisone injection im having.

Hopefully the increase in Methatrexate will help fingers crossed 

best wishes 

Robert 

Injection cancelled due to no NURSES available to accompany the Consultant FFS only been waiting a year 

NO!!!! Im so sorry for you. Thats terrible. Have they given you any idea of when they will do it now?

no got to wait for a new appointment 

Thank you. I hadnt thought of it like that! I was going to say good luck with your injection, but I read your recent post first!!!!

Just called them back and asked how long will I have to wait they don't know. So I quoted that I had a right to be seen within 18 weeks which I have been waiting over double this time and said its not on. They are going to call me back. 18 weeks is set down by the NHS rules which they have broken not happy at all.

I didnt know that! I bet they try to keep that quiet. I shall cross fingers for you that you get a call very soon. Unless we complain, nothing seems to get done, does it. Good luck x

Hi Robert. How are you doing? Have you been given a date for an appointment yet?

I saw my new full time rheumatologist! He was brilliant. He confirmed that I have an inflammatory athritis (PsA) and that it is active in both hands, feet, right knee, right arm, hip, chest and back!! He said that I also have a chronic back condition running along side of it. Apparantly I have hyper-mobility too!!!! It was a lot to take in, but such a relief to be seen by him. I have got a referral to a back specialist and am due to have MRI scand on my back, feet and hands. He said that going back onto methotrexate would be dangerous for me! Good job that I didnt get the prescrition from the last consultant that I saw!!!

Hope you are well x

Hi Lainey 

Great news you finally got a decent rhumy. lets hope they can now get you on the right path and medication to get you as good as possible. 

I still have had no new appointment for the injection I really need to chase them up 9 months for an injection is not on, I do have the appointment for the injections into my heals but on current form i expect it will also be cancelled. I found taking more co codomal is heping but still having good and bad days. 

Hopefully you will have enough evidence for PIP now have you given any more thought on making a claim against the hospital ? your new diagonses will give you more evidence against them too. 

Best wishes 

Rob 

Hi Lainey 

I got a date today its next Thursday but not holding my breath until the day suspect it will be cancelled again. Hope your well 

Rob 

yay!!! Thats brilliant news! I shall cross fingers for you!

I rang up about the PIP payments people today. They said it can take up to 16 weeks to process the claim. I have written back to the hospital asking for answers about my delay in treatment. I pointed out to them that I have lost my job because of them! Still waiting for that answer.

Let me know how you get on. Good luck x

I wonder what reply you will get from the Hospital I would think that it will be worded very carefully, I dont think it took 16 weeks for PIP to get back to me. Although they did break their own rules in the distance I had to travel to the assesment, But I rang up and pointed out they had and they gave me another appointment closer. 

Fingers crossed it will all go ok for you 

 I will let you know how it goes speak soon x

 

Hi Lainey 

Well I had the injection CHRIST it HURT that was the middle joint of my finger he wanted to do the top joint .......... no chance whatsoever was i going to let him do it, He even went and spoke to my wife and asked her to persued me to had the second one ..........  It has not made any difference at all. I have now got an appointment to see a physio on Thursday. How are things going for you?

 

I had injections into my left hand joints,Mainly the ring finger.Yes Robert it sure does HURT.I empathise,and yes.Made no difference to me either No guitar or piano without  a lot of pain. Seeing both the Rheumy and hand specialist in July.Sure glad I have morphine on repeat prescription!! Indeed.As Robert putHow are  things with you Lainey? Any news on the PIP yet?  

Hello Steve and Robert!

I have my PIP assesment next Friday! Woo hoo!! They told me I had to go to a town, 40 minutes drive away! I rang and said that I couldnt make it that far and they said it was no problem, as they have an assesor in my area!! Why on earth did they not send me there in the first place!! 

Sorry the injection didnt work out for either of you! What a shame. Especially after waiting so long for it!! Robert - my physio has been amazing. I get to go to the hospital gym once a week and also have hydrotherapy once a week. I definitely have more stamina now. Its nice to feel that you are doing something positive and to also have a good reason for being in pain after! 

What pain relief are you on Robert? Do you still get all that pain while on Morphine, Steve?

Hi Lainey 

They done the same to me wanted me to travel 2Hrs 30mins away complete idiots, I will message you in a min. Im on Tramadol and Co codomol but most of the time both dont get rid of it completly. I had Physio last September for a week in hospital, It was great especially the hydro but a week after i was out it came back worse. 

Next Friday for PIP.Great to hear Lainey!! Don't forget you can have a friend or member of family with you for the assessment.I had my Mum next to me,Nice to hear you;re getting good treatment too With the Morphine.I'm able to play guitar (I have 16 of them to choose from) It's an odd feeling.A kind of euphoria,with a sense of pain,but enjoyment at playing too.Pretty upsetting at getting so good on the instrument to get this.I get asked to play live,Not right now,but trying things like oil of oregano,cider vinegar etc.Pain so bad the next day.the swelling really bad on my left ring finger.Will keep going though as we all do.

Do you think that maybe asking us to go far away, is a test to see if we can make it? It does make you wonder.

Thank you Steve. My Mum is going is going to come with me. 

Its brilliant that you are able to play your guitar. I think having arthritis in your hands is so frustrating. I design and make cards and paint glass. I got stuck while I was holding a glass this morning. My hand just stopped moving. Like you say, it is so painful, yet you dont want to stop what you enjoy doing.  Its so scarey that with all these drugs, we still feel so much pain!!

could be what they are trying to do fortunatley we are not as stupid as they are 

Yes.I do Lainey What I find so upsetting is in the old days they went by GPs notes. Now Because of the so many melingerers who play the mental game.We.Who quite obviously have so many things wrong with us physically,and because of this  get penalised with them.We have all this medical information of what;s wriong with us,yet they ignore it all.I know quite a few who have  been 'swinging the lead' yet  we pay the penalty with them  

That's great to hear your Mum is gioing with you Lainey Mum's are great!! My Mum designs cards etc too I paint boots when I can.On playing guitar.I try but it sure is painful,and like you Lainey fingers stop moving.Yet like you,to stop doing something you so enjoy.It's what defines us.When I get asked what I do.I still say I'm a musician.But yes scary with all the pain Would love to see your cards and painted glass if you wish to share on PM. 

Thank you Steve. It is so good to be able to speak with people that truly understand what its like to live with this condition! My job finishes in the next couple of weeks. Its a horrible feeling to be unemployed and I dont like having to claim money. I intend to set myself up a business, doing what I love. There will always be a market for cards. It will be a job I can do from home, which will allow me to rest when I need to. I will take some pics to show to you x

Sure is good speaking with people who understand living with this condition Lainey!! It will be great to see your cards,and if I can help in any way with business ideas.I'll say so.I'm good with words,if you ever want any words put on the cards.Do you know about tax credits,and stuff like that in helping you set up a business?