PIP, DLA and AA
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THE DARK SIDE OF PIP

markyboymarkyboy Member Posts: 368 Pioneering

Declan, 26, from County Down in Ireland has been “buried alive” by Locked-in syndrome – but faced ‘ignorant questioning’ in a recent PIP assessment

The dad of one of “one of the most disabled people in Northern Ireland” has hit out at a controversial benefit scheme.

John McMullan, 50, said he was shocked by the scores in a recent PIP assessment for his son Declan, 26, who is “unable to move, talk, see or eat”.

Claiming he faced “ignorant questioning”, he said he feared what other disabled people might face during their assessments for the benefit, which is replacing Disability Living Allowance.

Belfast Live reports that are neurological condition that means he is unable to control his movements despite being fully aware.

He requires 24-hour care for the condition, which was triggered when his brain was starved from oxygen during an eight-minute cardiac arrest when he was 19.

When John recently received a letter informing him Declan must be reassessed for the new payment, he expected the change would be made without question.

He explained: “The form was very easy to fill in because Declan can’t do anything other than blink. He is unable to move, talk, see or eat.

“Doctors told us to imagine being buried alive – that is what Locked-in syndrome is.

“But three weeks later, I received a phone call from an assessor to ask questions.”

John claimed the assessor, who wanted to see Declan face-to-face, displayed a “total ignorance” of his condition.

He said: “In my opinion, I supplied ample evidence of Declan’s disability but I doubt they actually understood what is on that paper.

“I don’t think the people assessing are fit to be doing it.”

Declan achieved the full payment but John said he was shocked to see that he did not achieve full points for his daily living needs.

He said: “Declan cannot eat and is PEG fed yet the assessor only gave him 6 points out of 10 for the level of assistance he needs with eating and drinking.

“He cannot move at all, only blink, yet the assessor gave him just two out of eight points on whether he needs supervision or assistance managing his therapies.

“He got 2/8 for needing assistance making budgeting decisions and just 4/8 for needing support in social situations.

“If a GP is telling the government somebody is sick, who is an assessor to question the doctor’s judgement?

“How can a PIP assessor be properly qualified to override those doctors?

“Declan’s team include occupational therapists, social workers, nurses, doctors, physiotherapists and psychiatrists. A PIP assessor can’t be all of that.

“I knew Declan was never going to be turned down for PIP. It was just the stupidity of the process and the fact even he did not get full points.

Replies

  • Angiebabes2410Angiebabes2410 Member Posts: 70 Courageous
    I even wondered if these assessors are medically qualified to decide on our conditions and how they affect our everyday life,  mine asked me to stand on tip toes which I tried to.do and almost fell over as I can't feel my right leg properly but on her form she said I can reach behind myself with both hands and put both hands above my head, she never asked me about either of these and disnt ask me to do either,  I'm sure they are paid a bonus to reduce the number of points they allow us at the f2f assessment, sorry about everything that's happened with Declan xx
  • wilkowilko Member Posts: 2,297 Disability Gamechanger
    Hello, as your son was moving from DLA to PIP two different benefits and different acessment criteria. DLA is about your disability, illnesses ect whereas PIP is about your abilities to cope manage in your daily lives. As in your sons case one would of thought a straight forward transfer from DLA to PIP even if a F2F was needed. The acessors are of a medical background but are only there to acess how and if the claimants fit the PIP descriptors. Your son did, does fit so why the waste of an acessment, most likely to comply with DWP regulations as for not getting full points is another thing, I hope you are going to contest it with a MR.
  • TardisTardis Member Posts: 214 Pioneering
    edited November 2018
    It sounds as though he did get Enhanced, but the father is questioning why he didn't score maximum points for each activity.  He simply didn't meet the criteria for some of the higher scoring descriptors.  He met enough points across the board to get the maximum payment so there is no issue.  It isn't a matter of whether the assessor had suitable medical qualifications.  For example, maximum points for mixing with others is for dangerous behaviour/overwhelming distress.  That doesn't apply here.
  • YadnadYadnad Posts: 2,856 Member
    Tardis said:
    For example, maximum points for mixing with others is for dangerous behaviour/overwhelming distress.  That doesn't apply here.
    It didn't apply to me either. I suppose you mean dangerous behaviour to mean out of control - a danger to him/her self and others?

    That fits me to a tee - hence why I have been sectioned so many times - the issue was never resolved except now I try to contain the matter.

    I got 0 points in every category!
  • [Deleted User][Deleted User] Posts: 118 Listener
    Heartbreaking and I cannot see any way that Declan could score any points except on eye blinking ..if it is hidden in their criteria....im totally disgusted that even though he got the enhanced payments..the point is the person doing the assessment might have well been on a different planet for the amount of understanding concerning Declan. I am sure Declan would know more about the assesor with his limited viewpoint . but im willing to bet that Declan would have at least known that there was an cold energy around him ...lots of hugs and best wishes xxx
  • TardisTardis Member Posts: 214 Pioneering
    edited November 2018
    It clearly doesn't apply to you for the majority of the time @Yadnad.  You tell us that you are a school governor, charity director and Tory councillor.  That doesn't tally with someone for whom any social engagement was impossible due to the danger to yourself or others.

    @vickyanne - according to the OP Declan did score enough points for enhanced PIP.  Not everyone with serious disability is going to score full points in every category.  It isn't designed that way, and there is no extra benefit payable to people who hit the top score.  It is the kind of case though, where you would think any assessor or other representative of the DWP would be kind enough to explain that to the family.
  • FetlockFetlock Member Posts: 79 Courageous
    Tardis said:
    It clearly doesn't apply to you for the majority of the time Yadnad.  You tell us that you are a school governor, charity director and Tory councillor.  That doesn't tally with someone for whom any social engagement was impossible due to the danger to yourself or others.

    @vickyanne - according to the OP Declan did score enough points for enhanced PIP.  Not everyone with serious disability is going to score full points in every category.  It isn't designed that way, and there is no extra benefit payable to people who hit the top score.  It is the kind of case though, where you would think any assessor or other representative of the DWP would be kind enough to explain that to the family.

    I'd like to know what the justification was for giving him only 2 out of the 8 points on offer for managing medication.

  • TardisTardis Member Posts: 214 Pioneering
    Two points for therapy which takes up to 3.5 hours a week? The answer to that will be that only certain things count as therapy for the purposes of that question.  It probably should be more, but he has enough points.  
  • mikehughescqmikehughescq Member Posts: 6,003 Disability Gamechanger
    A fine example of how people misunderstand the PIP points system. What the parent describes is actually an assessment which is wholly correct on the facts given. 

    Firstly you do not score points “out of” anything. It’s not 4 out of 8 etc. If you haven’t understood that then you’ll be struggling from the off. To take the points in turn. 

    6 points for taking nutrition - because he “Needs assistance to be able to manage a therapeutic source to take nutrition.”. That’s exactly what a PEG feed us. He can’t score 10 because that says “Cannot convey food and drink to their mouth and needs another person to do so.“. As he has a PEG feed no-one is conveying food and drink to his mouth and therefore he can’t possibly benefit from another person to do that. 

    2 points for budgeting - because he “Needs prompting or assistance to be able to make complex budgeting decisions.”. As he can blink and therefore is communicating what evidence is there that he can’t budget? None that I can see. He could only score higher if he couldn’t budget at all or do complex budgeting. There’s no evidence he lacks sight; has reduced intelligence or can’t address complex budgets. Therefore the decision is correct. My guess is Dad didn’t read the basics and just assumed no evidence would be needed. Happy to be proven wrong. 

    4 points for engaging - because he “Needs social support to be able to engage with other people.“. That seems fair to me. He’ll need someone with him who understands the quickest most efficient way to communicate using those blinks. He can’t possibly score more unless he exhibits behaviour that would risk harm to himself or others or he can’t engage at all, which is already known to be untrue. 

    2 points for therapy - because ”Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week.“ Any evidence actual therapy takes longer than that? And to be clear again. He scored 2. Not out of 8. 

    So, far from the HCP lacking insight or understanding I’d say this is a fine example of spot on recommendations leading to a quick and correct decision which didn’t need to be appealed. Perfect proof that you need no knowledge of a condition to establish the correct points score.

    Bear in mind that for DLA he would most likely only have got middle rate care on the basis of frequent attention with bodily functions unless there was some speciifc evidence for night time care.
  • YadnadYadnad Posts: 2,856 Member
    edited November 2018
    Tardis said:
    It clearly doesn't apply to you for the majority of the time @Yadnad.  You tell us that you are a school governor, charity director and Tory councillor.  That doesn't tally with someone for whom any social engagement was impossible due to the danger to yourself or others.


    Errr yes it does. Years spent within the mental health system allowed me to take back control. I know my triggers and avoid them. What people see is not really what I am inside. The medication helps a lot. Thankfully I am allowed to take some of it at a higher dose if and when I start to feel uncomfortable.

    I have the potential to still be a danger to myself and others around me but thankfully I understand my mind and know when to walk away from a situation.

    Having mental health difficulties teaches you to be defensive and the ability to be divert conversations away from something that makes me feel uncomfortable. 

    Clearly you have not spent years inside the mental health system, if you had you would know exactly what and why I am saying this.
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