Hi everyone, hope you are doing ok. I saw the Occupational Therapist at the Hospital yesterday, what a lovely lady. I spent two hours with her talking about things I struggle with at home and work, how I am coping with this disease and the medications, and how I am feeling at present. She gave me lots of information, ideas and advice. She checked my hands, fingers and elbows and said I had visible signs of damage in my hands, and inflamation in my hands and wrists. She did some tests of my hands with me pushing and pulling against her. She said I have a lot of weakness and my grip is about 2.5 out of 5. She has given me wrist splints to wear during the day and compression gloves for overnight. I also have to have a home visit as she has recommended a bath board, grab rail, toilet frame to help me get up when my knees are bad, and a handle to pull myself up with when in bed. I am grateful for her recommendations but when I got home I felt quite emotional. I think it was just the realisation that although I may not need all of these things at the moment, it is most likely I will have a need for them in the near future. I said I didn't feel I need these yet but she advised I accept them in order to help limit further damage, especially with the cut backs and the NHS having to save money, she believes it will be harder to get aids in the future. She said that after this visit I will be referred back to my GP so if I need anything else he will have to refer me back to the Hospital and I will go back on the waiting list. It has taken 6 months for me to get to see her. She also told me to phone Occupational Health at work to arrange a meeting so I can update them. I told her that I am not allowed to contact them myself, I have to inform my Line Manager and she contacts them. She said that she is hearing this a lot and according to what the Consultants have told her, we have the right to contact Occ Health directly and don't have to inform our Line Managers if we choose not to. Has anyone else been told they can't contact OH directly. The Doctor has told me my latest blood test is showing my LFT is still increasing. I see the Consultant next Thursday so will see what he decides to do. I am feeling very tired and cold at the moment, don't know if it's connected to the LFT. I have been given lots of booklets to read and also have the NRAS booklet about claiming PIP. She thinks it is the right time now for me to apply and also to try for a Blue Badge, obviosuly she can't say I will qualify for anything but feels it is worth trying now. I just have to wait for the Podiatry appointment now and pluck up the courage to start the PIP process. I have a good Team looking after me but feel like the Hospital is my second home at the moment, as some of you may also do. Enjoy the weekend. X

15 Replies

  • I know what you mean, I have appointments coming out of my ears. But I am really pleased that you had such a good consultation. I have been given several aids, and I try to see them as enabling me to retain my independence, rather than emphasising my disability. It is a hard one! ....but it is a better option. And my blue badge is the one thing I would grab if there was a fire!- It's an absolute life saver.

    Good luck! M x

  • Thanks for your reply. Yeah I do know they will be a great help, it was just hard hearing someone confirm that I do need the aids. Hope I can get the blue badge too, that will be really helpful. Take care. X

  • Hi there I got the blue badge and it's a life saver although I'm going back to work on Monday it's very handy and was a god send when I was struggling the last 5 months , I also had to phone occ health , because when I was off my work were useless and did nothing to help me , it was like I had to do all the running around and my line manager wasn't interested so I've down loaded the paper work from NRAS about employees living with arthritis and I'm going to plonk it on his desk on Monday morning,every time I spoke to him when I was off he would say to me was you need to go to the sun( just pure ignorance thinking all arthritis is the same)

  • Pleased you got your blue badge. Hope your line manager takes the time to read the info you give him and more importantly actually learn from it. Good luck with work next week. X

  • I also have a marvelous occupational therapist. I think the three appointments I have had with her over the last couple of years are in my top five most useful health consultations ever! She sorted out grab rails for me on my stairs and bath; fast-tracked me for various equipment before my hip replacement; has given me thumb and wrist splints and compression gloves like yours; and given me all sorts of useful advice. She also suggested I apply for PIP (I already have a blue badge) and helped me feel like that was a reasonable next step, not some awful sign of failure... Like you I got quite emotional - it was so fantastic to be listened to and taken seriously, to be treated kindly, and to be given some practical help. :)

    As for occupational health: I have definitely contacted mine directly, to ask for a work station assessment. In fact, when my line manager referred me to see them (she was trying to be helpful), they told her off, and said her referral was only appropriate if there was a sickness management, capability or disciplinary issue - which in my case there isn't. But if you've been told not to and you're concerned about going against instructions, you could try a more subtle approach and email to say your OT has recommended you have a workplace assessment, and to ask what needs to be done to get one... Be aware mine took about 6 months to get! But it did result in a new, much better chair and an ergonomic mouse... :)

  • Thanks for your advice, I will do that. It certainly was a very good consultation, and not at all hurried. Enjoy your day.X

  • Hi it is so lovely to hear you have been treated with the respect and care we all deserve. I have been referred for OT so good to hear. Have a good weekend x I have a blue badge and it has made such a difference to me. X

  • Thanks. I hope you have an excellent consultation too. Have a lovely day. X

  • Hope you are feeling better soon. Take all the help offered and like you say pace yourself. You will know if and when you need the 'extras'.

    One has to wait for the OT (I'm currently waiting for my first appointment), but hopefully it will all work out.

    As moving to the sun is out for me (I wish), I get Popsmiths' annoyance that everything would be dandy if only we all could get the rays on our bones! HA!

  • Yeah if only it was that simple. Hope you get your appointment soon and it is as nice as mine was. Take care. X

  • Seems it was a very productive OT appointment Sue. I think Hatshepsut has got it right, they'll all help toward you being more independent. I've needed to use my aids more frequently of late & chucked the ones that don't work in frustration! They've been replaced but still not found anything to help me cut veg. I refuse to give in & buy ready prepped so the hunt goes on!

    When the time comes to apply for PIP we're here if you need any help. My Blue Badge has been so helpful on my not so good days, particularly as I've been doing the shopping solo. A 6 wheeled trolley too, brilliant for getting up steps, when I remember to put it back in the boot!! x

  • Thanks for your reply. The appointment was much better than I thought it would be. It was so nice not feeling as though you were being hurried along, and she was so helpful and genuinely caring. I know the aids will help a lot but initially hard to accept you actually do need them. Like you I won't buy ready prepped veg, I will do what I can and accept help when I need it. Going to have a look through the booklet with all the gadgets in later and see what's available. I will definitely apply for the blue badge, is it just a case of filling in the form or do you have to see someone to be assessed? I am working towards making the call to apply for PIP, that feels scarey enough let alone having the assessment, ha ha. I will take you up on your offer of help if I need to, thanks, and will most likely get CAB to help too. Thanks again, enjoy your day. X

  • It's up to you how or when you apply but I left it until I heard if I'd been awarded PIP. It's a bit convoluted really, on two counts. It's difficult to get a Blue Badge in our area & if I was awarded the points necessary in the moving around section I would qualify anyway. As it was I was 2 points short so I decided to apply anyway, thinking if I didn't get one then nothing was lost. The library in the next town has a Telly Talk webcam linked to our County Council. It's a distance face to face & when I applied I had further evidence to support my claim which was confirmed after the 30 days limit to ask for reconsideration consideration on my PIP award, just bad timing unfortunately for PIP but at least I has it for the BB. Shame my Rheumy appointment wasn't month earlier! Anyway, as you know I got one anyway so all's well.

    The sooner you pluck up courage to apply for PIP the better because if you're successful it's backdated to the day you applied, 8 months in my case so I received a nice lump sum. I shouldn't think you'll have to wait that long, the assessments backlog doesn't seem to be as long now. Mine was also delayed further as I was subject to a residency test, not that I knew despite numerous chase calls p. Eventually local DWP rang to say I'd passed & my appointment for assessment was in the post.

    Good idea to seek help from CAB, they know what DWP need to know.

    Have a lovely weekend. x

  • Gosh you got a good ot mine was you can have aids no test only to get into bath which was impossible butbim have a bath hoist but wait for it not yet long long wait list... so you can image how clean i am apart from strip washes... so upset i so much need a bath.... so i was in thete half a hour.... in and out... but good luck with pip ive just had low rate for my knees... back..spine but no blue badge turn down im appeal as my son and carer have to take me everywer.. was diappointed on mobiliy componnant as im house bound... but GOD LOVESVA TRYER... if i dont get lifts im stranded... need ble badge to get righr outside my appointments... so im fingers crossed i get 8 points ive ask them to look again ....but ive heard cut backs on mobility.. its not the moneybi need the BADGE DESPERSTLY THEY CAN KEEP THE MONEY HONESTLY...

  • So sorry to hear yours wasn't as good, it seems to vary so much from one health authority to another. It's disgusting you haven't been awarded mobility when you are housebound, I don't understand how they come to their decision. Let's hope the appeal goes in your favour and I really hope you are successful with the blue badge too, sounds like you really would benefit from having this. Let us know when you have the decision. Good luck. X 🍀 🍀 🍀

You may also like...