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Hi, I'm so lucky lucky lucky!

Captainwull
Captainwull Member Posts: 10 Connected
Hi everyone,
I guess I should consider myself lucky as I was only born with Bilateral Talipes (2 club feet) My mother was told I'd never walk but thru cycling when I was a wee boy my legs eventually gained enough strength to enable me to walk unaided by the time I was 15.
 I started working at 16 in job that meant I didn't have to walk much but after a few years of this I was told at the age of 19 I had to stop doing what I was doing or face a life in a wheelchair before I was 30.
 I went back to college, retrained and started a new career. I set up a successful business which I sold in 2007 when I was told I needed a double amputation of both lower legs. I invested most of the proceeds of the sale of the business in an investment company who promised an 8% return. A few months later the two main directors of the company withdrew (stole)160 million out of the fund I was invested in and took off to drink Champagne and smoke fat cigars in Zurich......
 The inland revenue wanted their share of my business capital gains tax - even though the money had been stolen. So what little I had left disappeared to HMRC. Then the banking crisis occurred and two thirds of the pensions I had built up disappeared too! 35 years of graft gone almost overnight, who says it pays to save....

Anyway, I still had a bike left, so while waiting for my turn at amputation I started biking again. The circulation improved in my lower legs and although I cant walk unaided, 12 years later I still have toes I can wiggle. I've tried a few different jobs to try and find something that suits my disability but its not easy. It seems that every couple of years I've to move on as the disability gets worse. Its a constant battle to try and stay positive.
I had DLA for about 8 years, (mobility component) the Doctor that assessed me said in the 17 years he had been working in this field I was the most remarkable person he had ever come across due to the way I had managed my disability. This was very humbling but I didn't seem to impress the assessor for PIP as I've just been rejected for again. Seemingly I wasn't sweaty or nervous, and could hold a conversation with the assessor in the 10 minutes I was interviewed. I didn't **** my pants and was able to hold a knife and fork. My muscoskeletal examination consisted of can I lift my arms up and down and bend a knee. The fact that I cant walk or stand on my feet unaided didn't seen to matter. 
The last paragraph is why I've joined SCOPE, I guess there are others out there who feel that life - having dealt them a crappy hand now feel that the powers at be wanna make it even harder. I've got news for them...... you might win an odd battle but you wont win the war with me!.

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Comments

  • 66Mustang
    66Mustang Community Co-Production Group Posts: 6,491 Disability Gamechanger
    Welcome. I agree with what you say. They want you to give up on the claim but you have to keep fighting.
  • Connie00
    Connie00 Member Posts: 252 Pioneering



    Hello @[email protected]


    My Name is Connie00

     

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community.

    Thank you for reaching out to us, you are an inspiration, it is very difficult as you get on in life your disability get worse, you think its the end as for PIP my opinion is that its a lottery if you get it or not I think in your situation I would appeal the decision, you are very brave, don't give up you are not alone. 

    We are always here to lend support, help, and advise where we can,

    If we can be of any assistance to you please don’t hesitate to contact us

     

     

     

    @connie00   :) 


  • Captainwull
    Captainwull Member Posts: 10 Connected
    Hi Connie. Thank you for the kind words. I will appeal. I’m sure it’s just a process where they try to get as many people out of the system as possible  in order to free up cash to squander on things like the 100 million spent on advertising us leaving the EU by 31st October......

    Did you know that the Torys spent millions fighting a case in Europe to stop the EU capping bankers bonuses after the banking crisis? They failed but it just shows where they’re loyalties lay. 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Captainwull and welcome to the community.

    What an introduction! Firstly, you do sound like a very tenacious person, sometimes it's easy to listen to what people tell us about disability or illness but you are proof that the biggest expert is always yourself.

    I am so sorry to hear about the outcome of your PIP application, we hear so many stories like yours where it just seems unbelievable that you wouldn't get financial support from PIP. With government figures showing that more than half of those that appeal to a tribunal have their Personal Independence Payment (PIP) decision changed, you should always consider appealing if you have a benefit claim rejected.

    It is good to hear you say that you are ready to fight! Lots of our members have appealed the DWP decision and can offer you their experience. We have lots of info about appeals here 

    If you want to challenge a benefit decision you have 1 calendar month from the date on your decision letter to ask the DWP to reconsider.

    You can either:

    If you choose to write a letter, include all the information required by the online form.

    Take a look at Challenging a PIP decision (Citizens Advice) for more information.

    The government says it should take 2 weeks to reconsider their decision, but you should be prepared for it to take longer. If you think it’s taking too long, you could try calling the department dealing with your benefit claim (GOV.UK).


    Please do have a search on our online community and chat with others in a similar situation and ask any questions that we may be able to help with.

    It's good to meet you and I look forward to chatting with you more soon :)


    Scope
    Senior online community officer
  • Captainwull
    Captainwull Member Posts: 10 Connected
    Hi Sam. Thank you for the advice. I sent in the reconsideration notice along with additional information and a complaint about how my muscoskeletal examination bore no reflection to my condition. I also notified my MP as to why I felt the PIP assessments were more directed towards people with mental illnesses and people with physical disabilities were being placed at a disadvantage. She (MP) sent a letter back saying she can’t deal with individual cases and my reconsideration notice was a carbon copy of my rejection notification. The additional information I supplied was not even mentioned. 
    Thank you for the info on appealing.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Captainwull - Welcome to this very supportive community. My son had bilateral talipes equinovarus, & my middle grandaughter had unilateral talipes.

    I'm sorry to read your PIP award is proving difficult. It would be helpful now in furthering your appeal to look at this link also as it shows how & why points are scored: https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

    You also need to mention if you can't do anything 'reliably,' i.e. if it's not safe to do so; causes you pain during/after an activity; or you're very slow at achieving an activity (such that it takes you more than twice as long as someone without your problems would face).

    My apologies if you know all this already, but sending just in case. Let go of the inaccuracies in your decision letters & concentrate on showing where you should have gained points. Good luck too.



  • Captainwull
    Captainwull Member Posts: 10 Connected
    Hi Chiarieds. Thank you for the above too. Your right I do need to let go of the inaccuracies. Dwelling on them just leads to anger and frustrations. I’ll check out those links. 
    Thank you!
  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger
    edited October 2019
    @chiareds - slight correction to your 'reliability' criteria..

    Doesn't include 'causes you pain during/ after activity'
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    @cristobal See this section from the link I gave: 2.2.18 'Symptoms such as pain, fatigue and breathlessness should be considered when determining whether an activity can be carried out repeatedly. While these symptoms may not necessarily stop the claimant carrying out the activity in the first instance, they may be an indication that it cannot be done as often as is reasonably required'.
  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger
    chiarieds said:
    @cristobal See this section from the link I gave: 2.2.18 'Symptoms such as pain, fatigue and breathlessness should be considered when determining whether an activity can be carried out repeatedly. While these symptoms may not necessarily stop the claimant carrying out the activity in the first instance, they may be an indication that it cannot be done as often as is reasonably required'.
    @chiareds - as I said pain isn't one of the 'reliability' criteria but 'as often as is reasonable required' is - which is what the quote you refer to says...

    Example - you get dressed and it causes you some pain - but doesn't stop you. This is 'reliable'....

    Pain may stop you from getting dressed again an hour later - but this is still within the reliability criteria as most people don't get dressed and undressed twice in an hour.

    If for some reason pain still prevented you from getting undressed to have a shower a few hours later then this is not 'reliable' because it's reasonable to expect that you might do this..

    The key thing is not pain but 'as often as reasonably required' ...

  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger


    See Section 2.2 Reliability; there are subsections headed 'Safely,' 'To an acceptable standard,' 'Repeatedly' and 'In a reasonable time period.' These are all subsections under 'Reliability,' that's all.

    See also under Activity 12 -Moving Around; 'Notes' para 6, 'When assessing whether the activity can be carried out reliably, consideration should be given to the manner in which the activity is completed. This includes, but is not limited to, the claimant’s gait, their speed, the risk of falls and symptoms or side effects that could affect their ability to complete the activity, such as pain, breathlessness and fatigue.'

    Also from the Benefits and Work Guide 30 June 2018; Page 16

    Reliably’ - the most important PIP word

    It’s vital that, before you complete your form, you understand that just because you can carry out an

    activity, that doesn’t mean you are prevented from scoring points for being unable to do it.


    Guidance issued by the DWP states that you need to be able to complete an activity ‘reliably’ in

    order for it to apply. According to the guidance, ‘reliably’ means whether you can do so:

    • Safely – in a fashion that is unlikely to cause harm to themselves or to another person.

    • To a necessary and acceptable standard – given the nature of the activity.

    • Repeatedly – as often as is reasonably required.

    • In a reasonable time period no more than twice as long as a person without a physical or mental

    health condition would take to carry out the activity.


    The DWP guidance also states that ‘pain, fatigue, breathlessness, nausea and motivation’ will all be

    ‘key factors’ in deciding whether an activity can be done reliably.


    So, for example, if you can ‘wash and bathe unaided’ you will not score any points for that activity.

    But if it takes you hours to do so or it would be dangerous to leave you alone to bathe – for

    example, because you might have a seizure - then you may score points.


    Or if you could walk 20 metres once, but afterwards you would be so exhausted that you could not

    do so again for hours or you would be unable to carry out other everyday activities after walking 20

    metres, then you may count as not being able to do so.


    Or if you can walk, but only in considerable pain, you may be able to score more points than you

    think. Let's say you are someone who walks over 50 metres only by pushing through the pain, for

    example because you want to stay as active and independent as possible. Because the meaning of

    'reliably' includes 'to an acceptable standard', you may be able to score points for walking 50 metres

    or less by showing that the distance you walk in considerable pain does not count as walking 'to an

    acceptable standard.










  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    @Captainwull - Hi, I am a very factual person, & only make a statement with reference to resources (which I read meticulously), if it's correct. If it's instead a personal opinion, I always indicate this.

    Perhaps the section above from the Benefits and Work guide may also be a helpful resource for you.
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi everyone,
    I guess I should consider myself lucky as I was only born with Bilateral Talipes (2 club feet) My mother was told I'd never walk but thru cycling when I was a wee boy my legs eventually gained enough strength to enable me to walk unaided by the time I was 15.
     I started working at 16 in job that meant I didn't have to walk much but after a few years of this I was told at the age of 19 I had to stop doing what I was doing or face a life in a wheelchair before I was 30.
     I went back to college, retrained and started a new career. I set up a successful business which I sold in 2007 when I was told I needed a double amputation of both lower legs. I invested most of the proceeds of the sale of the business in an investment company who promised an 8% return. A few months later the two main directors of the company withdrew (stole)160 million out of the fund I was invested in and took off to drink Champagne and smoke fat cigars in Zurich......
     The inland revenue wanted their share of my business capital gains tax - even though the money had been stolen. So what little I had left disappeared to HMRC. Then the banking crisis occurred and two thirds of the pensions I had built up disappeared too! 35 years of graft gone almost overnight, who says it pays to save....

    Anyway, I still had a bike left, so while waiting for my turn at amputation I started biking again. The circulation improved in my lower legs and although I cant walk unaided, 12 years later I still have toes I can wiggle. I've tried a few different jobs to try and find something that suits my disability but its not easy. It seems that every couple of years I've to move on as the disability gets worse. Its a constant battle to try and stay positive.
    I had DLA for about 8 years, (mobility component) the Doctor that assessed me said in the 17 years he had been working in this field I was the most remarkable person he had ever come across due to the way I had managed my disability. This was very humbling but I didn't seem to impress the assessor for PIP as I've just been rejected for again. Seemingly I wasn't sweaty or nervous, and could hold a conversation with the assessor in the 10 minutes I was interviewed. I didn't **** my pants and was able to hold a knife and fork. My muscoskeletal examination consisted of can I lift my arms up and down and bend a knee. The fact that I cant walk or stand on my feet unaided didn't seen to matter. 
    The last paragraph is why I've joined SCOPE, I guess there are others out there who feel that life - having dealt them a crappy hand now feel that the powers at be wanna make it even harder. I've got news for them...... you might win an odd battle but you wont win the war with me!.


    WOW WOW WOW!!! WHAT AN AMAZING PERSON YOU ARE! Now that I`ve said that let me congratulate you on your tenacity.

    I must admit, the title of your post did make me think you must`ve been awarded PIP first time. I guess your sense of humour still prevails. I`ve just read your post out to my hubby and I`ve filled up. We`re right in the middle of my PIP claim and are awaiting a decision following my f2f assessment. I have no idea how it will go. I am on DLA and in my 20th year of receiving it at full rate for both care and mobility. I have a mystery condition which took my bottom half completely.

    Bless you for battling through all your terrible challenges. I think you`re wonderful!

    Best wishes for the next fight!
  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger
    @chiarieds

    Your 'reliability' criteria are wrong - because you have left out 'to an acceptable standard' and substituted 'causes you pain during/after an activity.

    You will see this if you check your original post against your later post where you have posted the criteria correctly you have under the header  'Reliably - the most important PIP word'

    I'm really sorry to have to correct this but it really is important and it is a matter of fact.

    @captainwull - good luck with your battle!
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    @cristobal I was just trying to give the OP the gist of what I felt may be helpful to him. I mentioned reliability then put i.e., I did not say I was quoting the 'criteria.' Pain is a factor to be taken into consideration as I later then' quoted' as far as reliability is concerned. I do not think I have misguided the OP, & I'm sure you're trying to be helpful too. I'll ask @poppy123456 as she has a great knowledge about PIP to see if she can help.
  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger
    @chiareds - OK ....just to be clear I've never suggested, and wouldn't suggest, that you're trying to mislead anyone.

    We're both trying to be helpful which, when you think about it. is really great...

    Time to move on I think...

    Have a good day...
  • Captainwull
    Captainwull Member Posts: 10 Connected
    Hi everyone,
    I guess I should consider myself lucky as I was only born with Bilateral Talipes (2 club feet) My mother was told I'd never walk but thru cycling when I was a wee boy my legs eventually gained enough strength to enable me to walk unaided by the time I was 15.
     I started working at 16 in job that meant I didn't have to walk much but after a few years of this I was told at the age of 19 I had to stop doing what I was doing or face a life in a wheelchair before I was 30.
     I went back to college, retrained and started a new career. I set up a successful business which I sold in 2007 when I was told I needed a double amputation of both lower legs. I invested most of the proceeds of the sale of the business in an investment company who promised an 8% return. A few months later the two main directors of the company withdrew (stole)160 million out of the fund I was invested in and took off to drink Champagne and smoke fat cigars in Zurich......
     The inland revenue wanted their share of my business capital gains tax - even though the money had been stolen. So what little I had left disappeared to HMRC. Then the banking crisis occurred and two thirds of the pensions I had built up disappeared too! 35 years of graft gone almost overnight, who says it pays to save....

    Anyway, I still had a bike left, so while waiting for my turn at amputation I started biking again. The circulation improved in my lower legs and although I cant walk unaided, 12 years later I still have toes I can wiggle. I've tried a few different jobs to try and find something that suits my disability but its not easy. It seems that every couple of years I've to move on as the disability gets worse. Its a constant battle to try and stay positive.
    I had DLA for about 8 years, (mobility component) the Doctor that assessed me said in the 17 years he had been working in this field I was the most remarkable person he had ever come across due to the way I had managed my disability. This was very humbling but I didn't seem to impress the assessor for PIP as I've just been rejected for again. Seemingly I wasn't sweaty or nervous, and could hold a conversation with the assessor in the 10 minutes I was interviewed. I didn't **** my pants and was able to hold a knife and fork. My muscoskeletal examination consisted of can I lift my arms up and down and bend a knee. The fact that I cant walk or stand on my feet unaided didn't seen to matter. 
    The last paragraph is why I've joined SCOPE, I guess there are others out there who feel that life - having dealt them a crappy hand now feel that the powers at be wanna make it even harder. I've got news for them...... you might win an odd battle but you wont win the war with me!.


    WOW WOW WOW!!! WHAT AN AMAZING PERSON YOU ARE! Now that I`ve said that let me congratulate you on your tenacity.

    I must admit, the title of your post did make me think you must`ve been awarded PIP first time. I guess your sense of humour still prevails. I`ve just read your post out to my hubby and I`ve filled up. We`re right in the middle of my PIP claim and are awaiting a decision following my f2f assessment. I have no idea how it will go. I am on DLA and in my 20th year of receiving it at full rate for both care and mobility. I have a mystery condition which took my bottom half completely.

    Bless you for battling through all your terrible challenges. I think you`re wonderful!

    Best wishes for the next fight!

  • [Deleted User]
    [Deleted User] Posts: 231 Pioneering
    The user and all related content has been deleted.
  • Captainwull
    Captainwull Member Posts: 10 Connected
    Hi Pollyanna. Saying I brought a tear to your eye made me feel humble again ? I don’t feel I’m anything special. I just like to try my best to live a happy and fulfilling life. I always say to folk that my disability made me who I am. It made me try harder to be successful. Had I been normal I might not have had the same determination. Therefore I do feel lucky in a strange sort of way ? 
    I don’t get hung up over losing all the money. I discovered cycling again and still have my legs. That means a lot more to me than the money ever did. Thru cycling I’ve climbed Mount Ventoux, the Tourmalet, Alpe du  Huez and numerous other iconic mountains in cycling folklore. I’ve biked right across England from Coast to Coast, done the tour of Flanders 6 times and raised tens of thousands of pounds for many charities in the process. But ask me to walk across across the road without crutches and I’ll decline! ? 

    I really really hope your successful with PIP claim. 
  • mrbuttons
    mrbuttons Member Posts: 221 Pioneering
    @Captainwull
    Wow what an amazing life you have lived. It sounds like you are a true fighter who has always fought back in the face of adversity. The DWP Have no idea what they are in for. Keep giving them hell! 

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