Your browser isn't supported
It looks like you're using an old web browser. To get the most out of the site and to ensure guides display correctly, we suggest upgrading your browser now. Download the latest:

Welcome to the MSE Forums

We're home to a fantastic community of MoneySavers but anyone can post. Please exercise caution & report spam, illegal, offensive or libellous posts/messages: click "report" or email forumteam@.

Search
  • FIRST POST
    • Gypsywoman
    • By Gypsywoman 5th Feb 17, 12:58 AM
    • 23Posts
    • 67Thanks
    Gypsywoman
    Confused.
    • #1
    • 5th Feb 17, 12:58 AM
    Confused. 5th Feb 17 at 12:58 AM
    Hoping someone can help me.

    My CPN of 5 years is the person who knows me the most. I have Bipolar 1 and several physical disabilities, but I do not socialise and have no friends for I cannot be consistent with meet-ups and so I find it better to be alone. I asked that my CPN support me with the PIP process. She did help me with the ESA process and I trust her. .

    I also have several physical disabilities - cervical spondylosis, lumber spondylosis, osteo-arthritis in all major joints, including fingers and mainly thumb joint. I can no longer write, so could not fill in the written form for PIP myself. I have DDD - degenerative disc disease. I am 60 years old and started with arthritis at 37 - although only in neck and knees then. I also have a very bad pain in the ball of my foot and still do not know what is causing that, but my toes on my right foot have now drifted and my toes hook and catch the tops of my shoes/mules, this is also due to osteo-arthritis.

    I always have a low mood and much of this is due to the pain. I am never pain free. I walk with a rollator, with a seat so I can sit down fast when my back spasms, which is very often I have a slipped vertebrae also so that maybe does not help. I also have lock outs, in my knees mainly my right knee, due to bone on bone and part of bone shearing off, so my rollator makes me less likely to fall. I have had one operation to remove the pieces of bone and really need another, but I get lost in the system and need to be able to work it out and that is something I am struggling with right now.

    I also drag my right foot and again my rollator supports me in doing this. I have fallen at home and was a few hours on the kitchen floor, but now I have a stool in that area so I can furnish walk in the kitchen. I have been offered a lifeline bracelet and I am waiting for that also.

    I am still being told I am too young for knee replacements, despite 21 years of pain. Now they say if I get my back ad foot sorted, they will discuss replacement knee/knees with me again. I t is all so confusing when the pain is what you need to live your life around.

    I received a letter from ATOS this morning asking me to attend a face-to-face assessment. I cannot use public transport and the journey would take more than 90 minutes to get there, even if I could. I am not sure my CPN would be available to take me, due to the time involved.

    I do not go out except to the GP, taxi or hospital, which I use patient transport for and I find it immensely painful. I am also often out for 6 hours, but no alternative. I try all treatments the pain clinic recommends.

    I have 4 hours care a week for domestic help and 1 of those hours is for shopping for me. I do, if I can, go to my local high street, but need a taxi there and back. After 3 aisles in the big supermarket and a look in one or two other shops. I need to come home.

    I hardly get dressed and I have not showered or washed my hair for approx 10 weeks - a combination of pain and low mood. I do wash, when I have to and do soak my feet for orthopaedic visits or podiatry visits.

    I am due to have a medial branch block procedure on Tuesday 7th and an abalation soon after.
    I need surgery on my toes, although they may drift back and will not resolve the pain in ball of foot. It is my lumber spine and my foot that are the most painful.

    I have just had some suspect moles removed and think all is well there, but just one more thing to make me feel low. I go back in March to see the plastic surgeon.

    I do feel like a full-time patient, due to the number of consultants I see and the time it takes on patient transport.

    I always thought I had an high pain threshold, but think now I must have a very low one, for I find the lumbar and foot pain so very hard to cope with. I have morphine patches and take tramadol and pregablin. I had to come off liquid morphine for it made me feel very spaced out.

    I also have a heart condition, but this is managed clinically and I take no medication for that. I was diagnosed with angina also and I do have a spray, but luckily I have not used it for a few years now.

    I live in fear that I will have another major episode of bipolar, although I take my tablets, it feels like there are so many triggers around me. I also have issues with my family and they need me and I am useless for anyone to need right now.

    I need to wear incontinence pads because when I wake up I cannot always move and it takes time for me to sit upright, using my bed rail. By the time I am ready to stand up my need for the toilet is too much and I cannot make it there.

    Someone I know had an home visit from ATOS and her daughter moved a armchair into the bedroom and the assessment was done in the bedroom. The chair was apparently for her daughter to sleep in when her mum was real bad.

    I have told only the truth on my form that my CPN filled in on my behalf, but I do not know why a home visit was not requested. The appointment is for 15th of February. Perhaps, I thought it would be at the local cottage hospital. I cannot even get to the bus stop and cannot use public transport, even if I could.

    Can I ask my CPN to ask them to arrange a home visit instead? If they saw me at the local hospital I can get a taxi there and know my rollator fits through the doors. I cannot walk without it.

    Please help. I cannot contact my CPN until Monday and I am worrying it is too late to change the assessment to a home visit.

    I knew the PIP process could be not easy, but I feel so negative about everything at the moment, it is making me ill. I feel with needing to explain how all the above affects me made me realise how much I have deteriorated physically, in the last 5 years or so.

    I am more depressed, then I have let on to my CPN. I just feel so weak. I do take an anti-depressant. I am waiting until March to see the new psychiatrist. I am also on the waiting list to see the rheumatology team (21 years and I have come full circle) that should be soon, it was a 15 week list. I am also waiting to see the musco-skeletal podiatrist again, about my foot..

    Sorry to have gone on so, but I kind of needed to get it all out and sort out the home visit, of course.

    Thank you.
    Last edited by Gypsywoman; 05-02-2017 at 1:06 AM.
Page 1
    • NYM
    • By NYM 5th Feb 17, 1:26 AM
    • 3,352 Posts
    • 5,863 Thanks
    NYM
    • #2
    • 5th Feb 17, 1:26 AM
    • #2
    • 5th Feb 17, 1:26 AM
    Since you only received the letter this morning, I'm sure it won't be too late to arrange a home visit. Just ask your CPN to contact them on Monday.

    You certainly seem to have enough to contend with already without having to endure anything else on top!

    Good luck x
    • Gypsywoman
    • By Gypsywoman 5th Feb 17, 2:07 AM
    • 23 Posts
    • 67 Thanks
    Gypsywoman
    • #3
    • 5th Feb 17, 2:07 AM
    • #3
    • 5th Feb 17, 2:07 AM
    Thank you for your quick reply. I will contact my CPN and ask her to arrange a home visit.

    Think I am panicking more than usual. So many times and dates on hospital headed paper that I need to arrange transport for. PIP is just another time and date and yet it made me feel so confused when I saw where I was suppose to go. I just was not expecting it to be so far.

    Once again, thank you for your reply. I was having a melt-down. x

    .
    • preciousillusions
    • By preciousillusions 5th Feb 17, 3:19 AM
    • 519 Posts
    • 718 Thanks
    preciousillusions
    • #4
    • 5th Feb 17, 3:19 AM
    • #4
    • 5th Feb 17, 3:19 AM
    Is there a date for the assessment? I know it's easier said than done, but please try not to worry. You've clearly got more than enough evidence of your conditions and the care you need, and with your CPN's support I am sure some alternative arrangement can be made to make the assessment easier.

    It makes me so angry to know they are putting people like you (and I, tbh) through this when they are already given the necessary information and evidence they need via our health providers in the first place.

    Please try to be gentle with yourself. & if you feel any worse emotionally in the meantime then reach out for some extra support sooner than when you see the psychiatrist in March, as you shouldn't have to struggle alone x
    • Tolly_T
    • By Tolly_T 5th Feb 17, 8:51 AM
    • 120 Posts
    • 106 Thanks
    Tolly_T
    • #5
    • 5th Feb 17, 8:51 AM
    • #5
    • 5th Feb 17, 8:51 AM
    The first appointment they send is computer generated and is often miles away. They will change the appointment once so please don't worry about it.
    • Gypsywoman
    • By Gypsywoman 5th Feb 17, 11:18 PM
    • 23 Posts
    • 67 Thanks
    Gypsywoman
    • #6
    • 5th Feb 17, 11:18 PM
    • #6
    • 5th Feb 17, 11:18 PM
    Thank you for your replies.

    I feel better emotionally today and I appreciate that you took the time to help me with the information I needed.

    I am not angry that I have to see a health care person, but do feel very anxious about it all. I can give no more information than that which was submitted on and with the form.

    If the assessment can be arranged for a home visit I would feel less anxious. I just feel more confused and upset with the process than anything. I could, if I got my medical records, send endless X-rays, MRI's, scans and numerous other diagnostic tests and treatments and no doubt many, many letters between consultants and my GP's, but they do not prove how my disabilities affects me day to day.

    I can show, if I have a home visit, the adaptations to my home which are in response to my disability needs. Beyond that though I do not know and not knowing is making me anxious. I just want it to be all over as soon as possible.

    Thank you.
    Last edited by Gypsywoman; 17-03-2017 at 3:21 PM.
    • Gypsywoman
    • By Gypsywoman 17th Mar 17, 3:19 PM
    • 23 Posts
    • 67 Thanks
    Gypsywoman
    • #7
    • 17th Mar 17, 3:19 PM
    • #7
    • 17th Mar 17, 3:19 PM
    I wanted to thank you all for your help. I did not get a home visit, due to me having been sectioned in the past and also, due to saying I did not like people in my home (That was worded wrongly and actually meant people turning up unexpected).

    My CPN rang them and so it was arranged that the assessment would take place at the centre, but only, she insisted if she brought me in her car and was with me throughout the assessment.

    It was a young man who did the face-to face and he simply asked me questions from the form and I answered and expanded a little where it was appropriate. My CPN had to remind me of a few issues I had not covered and she was also able to explain the way in which my bipolar was managed between herself, the psychiatrist, the on-duty worker and the crisis team.

    The young man terminated the assessment for he said he could see I was in pain and there was no need to carry on any further. He was correct I was having severe spinal spasms. He did not want any of the other relevant paperwork I had taken and said he had enough to complete his part of the process. It was around 40 minutes.

    I have just returned home to the 'dreaded brown envelope' and I have been awarded enhanced rate for living needs and also enhanced rate for mobility needs. The young man had said he would be suggesting 3 years and it is, indeed 3 years, and it ends exactly 6 months before I am 64.

    I cannot see how I will be in anyway better by 2020 and would imagine in some ways things may be worse. It does say they will contact me after the end of February 2019, to say if my needs have changed and to look at the amount I get.

    I am not lying or exaggerating. I simply told the truth and will continue to do so

    Thank you so very much for being there. Once I had had the assessment I just tried to forget, but knew the 'dreaded brown envelope' would come. It is a good result I know, but I still wish I was at work and in no pain. I guess we all do.

    Take care
    Last edited by Gypsywoman; 17-03-2017 at 3:50 PM.
    • Gypsywoman
    • By Gypsywoman 17th Mar 17, 4:51 PM
    • 23 Posts
    • 67 Thanks
    Gypsywoman
    • #8
    • 17th Mar 17, 4:51 PM
    • #8
    • 17th Mar 17, 4:51 PM
    Teddys Mum - could you PM me again please. I somehow lost your message when I tried to reply. Than you.
    • teddysmum
    • By teddysmum 17th Mar 17, 7:44 PM
    • 8,040 Posts
    • 4,802 Thanks
    teddysmum
    • #9
    • 17th Mar 17, 7:44 PM
    • #9
    • 17th Mar 17, 7:44 PM
    Teddys Mum - could you PM me again please. I somehow lost your message when I tried to reply. Than you.
    Originally posted by Gypsywoman
    I've re-sent.
Welcome to our new Forum!

Our aim is to save you money quickly and easily. We hope you like it!

Forum Team Contact us

Live Stats

704Posts Today

8,106Users online

Martin's Twitter