u/Victa_Plays

I recently got diagnosed with bilateral equinos and clubfoot (I can’t remember the medical name) I’m currently 22 so I’m probably in a better position than most for recovery but I am currently house bound whilst waiting for surgery due to the pain.

From what I have researched after getting my diagnosis is that if it’s caught during childhood you can relatively be fine with little to no problems, but if it’s caught later in life even after surgery it can still cause problems.

So what I want to know is for those who have had the surgery later in life how is the process? I used to be really active going out every day before the pain started to get worse and now I’m practically house bound.

Hello again everyone I made a post yesterday about how I scored 0 on everything for a change of circumstances on PIP. I just went back through the letter and there a few gripes I have with how the assessor came to this decision.

1. “You said you could walk for 5 minutes before stopping. I decided you can stand and then move more than 200 metres. This consists with your medical history”

now after doing some research I realise that 5 minutes to an average person is roughly 300 metres, but that doesn’t apply to me which I specifically told them that 5 minutes to me takes a significantly long time my legs start to burn, get a stabbing pain, shooting pain and a loss of balance. I stated this in my face to face assessment but what got me was “this consists with your medical history” what medical history does it consist with? My physiotherapy appointments? The surgery I am waiting for? The fact that I’m currently in the process of getting a wheelchair?

Like seriously what does that even mean? Idk what more they wanted from me like did I have to go to that face to face appointment with ripping my own legs off to show them I can’t do it?

2. “There are no prescribed pain medications or over the counter medications taken”

yeah something happened in my past and my GP didn’t trust taking medication for a while but I also struggle to swallow tablets, I can only swallow tablets that are really small so there wasn’t anything I could do about that one either.

3. “You said you have difficulty planning and following journeys. There is no evidence of cognitive impairment”

what does this even mean? The fact that my mum drove me to the assessment otherwise I wouldn’t have been able to go?

4. “You reported the majority of days are good days in relation to your mental health”

well no I just didn’t say that did I? I specifically said it varies week to week one week it can be 4-5 good days but the next it can be 4-5 bad days.

5. “You are no longer taking anxiolytics. Overwhelming psychological distress is not supported. I decided you can plan and follow the route of a journey unaided”

what because I stopped taking medication that stopped working? (FYI the anxiety meds I was given were really small so i could swallow them” but the same anxiety medications that only helped with the physical part of anxiety and not the mental side? I can follow and plan a journey unaided? Erm no I can’t I can only go to places I’m familiar with without anyone with me but you do you.

6. “Evidence from your assessment showed normal range of movement in all the lower limb joints”

Ah you mean when I was sat down for about 20 minutes after walking to the assessment which took about a 30 second walk from the car I got dropped off in so obviously I would show normal range with no hindrance because my legs were rested.

7. “I made my decision using information about your health condition or disability including details of any treatment, medication, test result and symptoms”

But you just didn’t make that decision with the information did you? Because I don’t think it’s hard to miss letters about surgery, physiotherapy and a wheelchair.

Sorry for the long post but rereading the letter got on my nerves again and my last post in my opinion didn’t have a lot of information but these are just some things on the letter that really got on my nerves.

If anyone would like to know about my conditions and how it affects me feel free to ask. I am also going to ring citizens advice to help with the appeal process

I am a new MC patient I only got accepted and started at the start of this month but now I’m unsure if I can keep on with it even though it helps me.

Today I received a letter about a change of circumstances I applied for on PIP in January of this year and the conditions I used for this are the reason why I got accepted onto MC. The conditions are talipes equinovarus (clubfoot) which affects my legs in a really bad way and the MC helps with the pain, autism and adhd which the MC helps me to calm down and insomnia which the MC helps me to sleep.

Due to not being able to work I also claim UC but my UC goes onto the essentials I need and won’t leave me the money to be able to pay for my MC which I was going to rely on my PIP for.

So my question will it be best to cancel and reapply once I have managed to sort this out or do I stay on and only get 10g a month?

Sorry for the little rant but this has put me in a situation I don’t want to be in but any help will be appreciated.

So I’m not happy to say the least at the start of this year I applied for a change of circumstances due to worsening problems and new conditions I got diagnosed with last year, talipes equinovarus (clubfoot), autism, ADHD and insomnia all 4 of them conditions got diagnosed last year or towards the start of this year I also have CPTSD, BPD and mixed anxiety and depressive disorder.

I was already receiving PIP for CPTSD, BPD and mixed anxiety and depressive disorder. But due to the new medical conditions the clubfoot, autism, adhd and insomnia I applied for a change of circumstances, I filled out the forms told them what I struggle with and how it effects me (mainly mobility) I also sent off medical records including being on the waiting list for surgery, physiotherapy and waiting to get a wheelchair.

This is one part where I messed up I was budgeting with money I didn’t have I was expecting to get accepted so I started budgeting to renovate my room to help with this upcoming surgery on my legs but now that won’t happen.

So I got the letter today and I scored a whopping 0 on every single assessment. According to the assessor I can walk “200 metres” perfectly fine, I can talk to people just fine and don’t need any help or aids for daily tasks, which just isn’t the case I can barely walk down the stairs without pain in my legs and because I mask my symptoms doesn’t mean “im perfectly fine”

I also feel like I messed up the appeal process because I went into the call thinking I’d still be receiving the same amount I was already getting so I said I agree with the daily living scores and it wasn’t until after all of that was said and done that the person on the phone told me that I would no longer be receiving PIP at all.

I was also recently prescribed medical cannabis to help with my conditions and now I can’t even pay it because this has set me back by a lot.

Sorry for the rant and if it’s poorly worded I’m still quite ticked at the result, if anyone would like extra details about my conditions or just this post in general ask away and I’ll answer to the best of my capabilities.

So I had my first appointment yesterday and the Dr said he would like to prescribe me pastilles and also bud but the bud isn’t what I want opinions on.

I understand it’s still not 100% guaranteed I will get accepted by the MDT board but if anyone has had the pastilles not specifically curaleaf just in general how are they?

I specifically asked if I could have the daytime bud since that’s when I feel like it will be more useful for me but how are pastilles for night time? Currently on curaleaf they have 2 pastilles available both at 10mg THC but I’m just curious on what people think of them in general thank you!