Very worried about PIP and no assistance

Gracefully
Gracefully Member Posts: 20
Hi everyone

I'm in the process of having to fill in my PIP form and time is running out, and I simply seem to be falling between crevices in trying to get any help or support with this.

I live alone and have been 'managing' my deteriorating OA and other ailments. I don't really manage anything much now - managing means just turning a blind eye to so much stuff that needs doing but I can no longer do or afford to get someone else to do.

So, I have 8 working days left to get this thing back to them. I have contacted Age UK for help but got no reply and I need advice from those who know how best to respond because if I lose the enhanced part of the mobility, I'll become housebound.

I'm struggling to know what to do about the care component because I get the lower rate right now which means a lot to me to help me get some decent food as I am not safe to cook, but looking at the marking system for the descriptors, I think I will fall short of qualifying for the standard rate for care.

I live alone and to make matters worse, I've only recently found out that the hip operation I was waiting for since Feb of last year was never going to happen as I'd been somehow lost in the system!

I have nothing in the way of any assessment of my conditions since 2013 and some areas even earlier than that and my GP isn't really very supportive.

She's giving me the very clear message that I need to get better so I can be more mobile, and just will not discuss the fact that I am not just struggling with mobility because of my hip but because of my knees, lower back, damage to my shoulder muscles from having to lean so much on my crutches.

So, does anyone have any good experience of using any of the organisations who claim to offer help with these forms and where I can get help attending an assessment because in all honesty, I'm falling to bits over this and all my GP says is "I can have anti-depressants for that"!

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Gracefully from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod JK
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    A week is not long for getting together your application and I can understand the panic. Many people on here have enlisted the help of CAB with their claims. I suggest you phone them but as quickly as possible. I know others get supporting evidence from their GPs, physios etc. I know you feel your GP is unsupportive but they would at least be able to say how long this has been going on.

    As regards mobility – it's really not a good idea to lean on crutches as it does cause problems elsewhere. They are supposed to be for balance. Have you considered a rollator which might offer more stability?

    I wonder why your GP has not offered physio. That makes an enormous difference to everyday life. I dread to think where I'd be without my daily exercises.

    If you are 'not safe to cook' have you ever had an assessment by an Occupational Therapist? They are very good at finding solutions for all sorts of problems all round the house. And there are loads of gadgets available now in Disability Shops to make our lives easier. I cook almost every evening (despite disliking it) to ensure we get good food with the least possible 'extra rubbish' thrown in. I wouldn't be safe with a heavy casserole (Indeed, I can't even lift the lid of my slow cooker) but I'm OK with lighter stuff. There's often a way round things that we hadn't thought of.

    I hope CAB can help but please consider the rollator, physio and OT. Together they could make an enormous difference.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Gracefully
    Gracefully Member Posts: 20
    edited 30. Nov -1, 00:00
    Thank you for the suggestions, stickywicket.

    I will try to get onto CAB straight away but I cannot call them because they use an expensive number to call. I'm really gutted that Age UK have just left me hanging and I'm very worried about what to do for the best regarding the assessment as I am in bits just thinking about how to go to one on my own.

    I have looked at rollators and tried one out in a mobility shop, but it was just impossible to use because I still have the issues of not being able to put much weight on one leg and it was very difficult to 'walk' with and I felt that I was going to fall over.

    My GP referred me to the physio who are attached to the surgery but you can only have 6 sessions. I managed to push for 12 over 2 years ago but was told that physio is meant to be only to get you back on track and not for long-term use. In other words, I get my exercises to do at home and that's it.

    I was referred to the NHS physio back in 2013, but not only did it take months for an appointment, they were no help at all, refused to even read the letter from the consultant about why I was referred (for my back), gave me the same exercises I told them I was already doing for my hip only because she said "never mind what 'they' have sent you here for" and then couldn't give me another appt for over 5 weeks. It's another cost of £32 minimum because I only have taxis as an option to get around, so that eats into my DLA.

    I did ask my GP about Occupational Therapist and she was very down-mouthed about it - "they will come in and just look to see if you need any handles and that kind of thing", but then changed the subject and I have no idea where I go from here.

    I know it's all very negative but can only say that this is not like me. I've always been someone who would find ways around problems, but now I seem to just be facing one block to resolving something after another.

    I thought of trying to get a scooter, but I literally have nowhere to put it in the house (small one bed cluster home) so it would sit in the sitting room in the way, and to use it to get into town, because of the abysmal / lack of pavements, I'd have to do a really long detour, cross a very dodgy road and take more time than I think I could sit on one for as I get severe numbness in my coccyx area.

    Crikey, the more I type, the worse it all crowds in.
  • Gracefully
    Gracefully Member Posts: 20
    edited 30. Nov -1, 00:00
    I've tried to call CAB but it's a national helpline and I was 14th in the queue, so no possibility at all of holding on that time as I get horrendous pins and needles in my shoulders and hands.

    I've made so many calls today to try and get more help and I'm just utterly deflated with how hard it is to get anywhere.

    It really is not for the want of trying to get help, but it seems I'm not saying the right things.

    I've been told I can contact Social Services myself to get an appointment with the Occupational Therapist. Whilst this won't happen in time to help me with my PIP, does anyone know if this is the right way to go about things?

    I find it really scary because my previous contact with them over my mother was nothing less than horrendous and it does worry me that they'll just come and take over my life.

    Does anyone know if it's theoretically possible to have some kind of whole medical assessment that looks at the arthritis I have plus the other problems which aggravate my mobility and ability to do things?

    I know that I can change my GP, but now may not be the best of times and certainly I've got enough to be concentrating on without giving myself more problems.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I'm sorry, I'm really pushed for time right now but this might help from CAB's website.
    http://tinyurl.com/pkw7zq9

    You can self-refer to OT. Just find your local government's Adult Social Care number but be prepared to wait.

    Physios just give the exercises then we have to get on with them. I haven't seen a physio since my last op, about 6 years ago, but I still do the exercises daily as they keep me mobile.

    You can see any GP in your practice. Just ask for a different one.

    Sorry to be so brief. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Does anyone know if it's theoretically possible to have some kind of whole medical assessment that looks at the arthritis I have plus the other problems which aggravate my mobility and ability to do things?
    In theory yes, in practice no, not really, as that's not how how NHS works sadly. I have been facing a similar problem in trying to get my back assessed holistically instead of split into the 3 conditions that affect it.
    As you've also posted on LWA I'll continue on there.
  • Gracefully
    Gracefully Member Posts: 20
    edited 30. Nov -1, 00:00
    daffy2 wrote:
    Does anyone know if it's theoretically possible to have some kind of whole medical assessment that looks at the arthritis I have plus the other problems which aggravate my mobility and ability to do things?
    In theory yes, in practice no, not really, as that's not how how NHS works sadly. I have been facing a similar problem in trying to get my back assessed holistically instead of split into the 3 conditions that affect it.
    As you've also posted on LWA I'll continue on there.

    Thank you for that - whilst I don't wish it on anyone, at least it helps to know that others have the same problem.

    I understand that they don't work like this, but I'm sure that if someone changed the way things did work, it might well actually save money in the long term.

    My GP has this absolute idea that all I need is a hip operation and everything will then be fine.

    Well - ummm - no it won't and even the consultant has said that. My recovery will be slow and may well not be as good as I'd want. The OA in my knees will still be a big part of my mobility issues, as will my lower back discs, not to mention that something is getting worse 'down thar'.

    I do need the op, but I also need to have faith that I won't be judged for not getting 'better' on time and will have the support I need to make this work as best as it can.

    Anyway, back to the wretched PIP, and I'm still no nearer to finding any help with this.

    I cannot contact my local CAB directly, they only have the National line.

    Ah heck - so many obstacles to keep working around.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hello, I'm currently getting forms filled in for my 16 year old Son. I've had help from an autistic charity who know him well so it has been relatively straightforward so far but without their help I'd have been lost.


    Google Benefits and Work as their website provides lots of useful advice. You can look around the website without being a member. Here is the link to make things easier for you. (is this okay Mods)?
    http://www.benefitsandwork.co.uk/
    I wonder if you could also ask for an extension on filling out the forms, citing pain and the pins and needles you suffer from.

    I believe they will contact your GP for information but also give the consultants contact details as they seem more understanding than the GP.

    Good luck and post again if you need more help.

    Elizabeth xxx
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • hettiebarker
    hettiebarker Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi - I am also very much in the same position as yourself re: filling in PIP forms and did try to get some help and contacted several that were advertising help but they never got back to me so did it myself as best I could, I also had no medical evidence to send with the PIP form but have had x-rays and an MRI scan in the past that showed up all the arthritic plus lower back problems and said they must contact my doctor - I await the outcome.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello and welcome to the forum :) I do hope your claim is successful but quite a lot of people have to go to appeal so please don't be discouraged if that is the case for you.

    I've bumped up a thread by NNIF on his / her claim which is quite explicit and also optimistic. Good luck and please do join us elsewhere.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • hettiebarker
    hettiebarker Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you sticky wicket I have read the post from NNIF which is a great help, and I will certainly appeal if I get refused which may well happem. I am new to posting on this site and still finding my way around re: posting but everyone seems very friendly and helpful here.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I hope you'll feel able to join us elsewhere. Yes, there is a great deal of invaluable cameraderie and support - and laughter - on here which is so valuable.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Gracefully
    Gracefully Member Posts: 20
    edited 30. Nov -1, 00:00
    A bit of an update.

    First, I applied for help from Age UK to fill in the form and I didn't hear back. I felt very uncomfortable doing it, but I contacted them again and got a bit pushy and then they did find someone who responded really quickly and was so helpful.

    I then went down ill with a wretched UTI recurrence but did manage to get the thing in the post in time.

    In the meantime, I had raised a complaint with the local healthcare authority over the utter mess with my non-hip replacement and being left in limbo, and they too have moved very fast to get me an immediate re-consulation and new x-rays etc.

    My hip is now so bad the femur is slipping up, hence my leg not being long enough, plus the knee joint on the other side is bone on bone and in urgent need of replacement. But - only one op at a time, obviously.

    So, I received the appt for the Atos assessment in a town which is not only the better part of an hour away, it's a journey I cannot undertake because of the pain, have no idea how to get there, the cost would be utterly prohibitive by taxi, at a time which would have meant I'd be ill trying to get up in the early morning and wouldn't have time to settle be able to manage some breakfast to have my pain meds with, and with only one week's notice.

    I contacted them to explain all this and to ask about a home visit as I had been told by the DWP to do. I explained my situation

    Well, they only do home visits apparently if you cannot get to the doctor and have GP home visits. I explained that getting to my GP was a short known journey and it was door to door.

    They then had to look for another location and found one nearer to me. So I asked about access because I cannot walk (hobble) very far and was told the access was easy, on one level, no steps etc and there was plenty of parking!

    I was warned that they could only change the appt once, but it did give me another week's grace to find out how I was going to get there, and a better time of day.

    So, I felt a bit better ntil I looked it up on Google. The parking is about a quarter of a mile away in the town's shopping centre and whilst there is a bus stop where I could be dropped off, that is not really near the centre as it's in a pedestrianised area.

    No rear access either!

    I'm absolutely gutted as I feel so deceived about this.

    I'm trying to find someone who would not just drive me there but who would also attend the assessment with me.

    Should I ask for the assessment to be recorded because I feel they cannot be trusted.

    Do I take any more information with me to give to the assessor such as my health status log and a copy of the report from the consultant (which I hope I can get in time).
  • bridlass
    bridlass Member Posts: 35
    edited 30. Nov -1, 00:00
    Sorry someone to hear about your problems. Def find someone to go with you and to take notes. (a clipboard and pen can look most official).

    Bridlass. X