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PIP rejected for my daughter

ruthie1976 Member Posts: 6 Listener
edited April 2020 in PIP, DLA, and AA

Hello all,

Any help or experience would be gladly received. My daughter as she has now turned 16 and she has just been through her first PIP assessment, she previously got DLA for middle rate care allowance and enhanced mobility, PIP have now decided that she is entitled to the basic living allowance and 0 points for mobility. We have now sent the below reconsideration along with medical records from consultants ect ect.. I have also phoned the DWP this morning saying that we are basing Rachel as walking aided / unaided no more than 200 meters with someone actually having to walk by her side. I have requested if they consider having to walk with someone to hold on to as aided. Does aided mean just with the use of her splint as Rachel would then fall into the category of no more than 20 meters without someone ??

Will the below be enough in peoples experience. This has put Rachel under significant stress as she has only just received her learner driving license after  7 months of waiting to be deemed medically ok. Rachel would also need a special adapted car which now due to not having been awarded mobility she cannot get so the chance of any bit of independence has been taken away from her.

On the 25th August 2015, Rachel suffered a large deep right sided intracranial bleed from an Arteriovenous Malformation with extension into the right lateral ventricle, also triggering a stroke and causing significant damage to Rachel`s brain.

On the 27th August her neurosurgeon  advised that Rachel would need immediate surgery to remove the bleed and AVM due to the swelling increasing and the risk loss of life to Rachel. The surgery was essential to save her life but also Rachel`s brain was to suffer more damage due to this necessary procedure. The surgery was successful and Rachel was awoken from her induced coma to which when she came around had resulted in her left side being completely paralyzed.

Rachel spent four months from the 25th August to the 17th December as an inpatient receiving intense physical rehabilitation. Two months into her hospital stay Rachel received some movement back into her left leg but still to this day Rachel has no function of the left foot from the ankle to the toes and has to have this manipulate into her leg splint in order to protect the ankle. Rachel also regained a little movement in her upper body limb but still has a dropped shoulder and no movement from the elbow to the fingers. Neurologist advised before Rachel being discharged from Alder Hey that she would not regain anymore movement than what had already been achieved due to the brain sustaining damage from the bleed and then further damage due to the necessary surgery and this is how Rachel still remains today.

DLA was applied for and Rachel was granted full mobility and the middle rate care allowance that was to be reviewed after two years. In 2017 DLA was reapplied for and she was awarded an indefinite award due to her limited ability and functions that she could perform.

Rachel turned 16 on the 17th November 2019 and was then invited to apply for PIP to which the forms were completed and returned and a face to face assessment was carried out in January 2020 in her own home.

On April 09th 2020 has received the PIP decision and she was awarded 8 points for living allowance and 0 points for mobility.

We are now completing the Mandatory Reconsideration as the decision of the above seems to have discrepancies or missing information that may not have been considered when assessing this award.

Please see below the list of what has been awarded and the comments Rachel has advised in her initial claim, along with the guidance for points as per the PIP assessment guide on the Gov.UK website

PREPARING FOOD, awarded 2 points. It was clearly advised that Rachel cannot prepare or cook even a basic meal. Due to having no function in her left hand from the elbow down and very limited function to her left shoulder she is unable to open food packaging, prepare (cut or chop) or even cook. Also due to balance issues due to the left sided hemiplegia then balance when lifting hot objects can cause serious risk of her falling or dropping items resulting in scolding/burning to her body. The decision only states that “It was noted that you have difficulties preparing food” there was no mention of Rachel also being unable to cook. Descriptor F (8 points): Cannot prepare and cook food This descriptor refers to the person’s functional ability in relation to any impairment and their cooking skills should not be taken in to consideration for this descriptor. If a claimant cannot cook because they have never learned but their functional ability indicates they could undertake tasks involved in preparing and cooking food then this descriptor would not apply.   MANAGING YOUR TREATMENTS, awarded 0 points. Rachel has a one hour physio routine assigned to her by her physiotherapist that requires help from another person to complete on a daily basis to ensure the muscles are being strengthened and to avoid spasticity in her limbs, this routine includes upper limb, lower limb and core muscle to help her complete left side. The assessor at the face to face assessment was offered to be shown the full printed out physio exercise routine assigned to Rachel but declined saying it wouldn`t be necessary. The decision states “You have daily help to straighten your left hand so you can perform your physiotherapy exercises. However, your right upper limb power and grip is normal and were observed to grip your left arm with your right hand, suggesting you can manage your own therapy unaided”

The physio routine is a full body workout assigned to help her to try and strengthen / preserve the muscle in her complete left side and not just the left hand.

Also in the decision it states “You were able to raise and bend your left arm within normal range. However, your physical examination did show you have a weak grip in your left hand”.

Rachel has been under a neurosurgeon and a number of physiotherapist at Alder Hey and also in Warrington and the details were provided on the original PIP application, and not one of them has advised that she has normal range in her left limb and when it is raised towards her head the left limb will show sever signs of clonus which is muscle spasm involving repeated, often rhythmic contractions and that the left hand will never return any movement and only have limited feeling.

There was no mention of the regular botoulinum toxin she receives to her upper left limb in order to preserve the joints in her left hand and to prevent what is known as clawed hand where the fingers seize into the palm. This was also advised to the assessor in the face 2 face assessment. Descriptor E (6 points): Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a weekFor example: a claimant who requires assistance to perform exercises which have been recommended by a physiotherapist for the purpose of improving a health condition for 1.5 hours every day. DRESSING AND UNDRESSING, awarded 2 points Rachel was awarded 2 points, it was clearly stated that Rachel needs full assistance in helping her dress both lower and upper body as she cannot complete bra straps and also any tops with buttons or zips, lower limbs she cannot put on leg splint and needs someone to put on her shoes. Rachel has daily help getting dressed for both upper and lower body. Again all this was advised on both the forms submitted and also to the assessor. Descriptor E (4 points): Needs assistance to be able to dress or undress their upper bodyApplies to claimants who cannot dress or undress their upper body, even with the use of aids or appliances and require the physical assistance of another person. MOBILITY Rachel has been awarded 0 points for mobility and the decision completely contradicts itself. It was advised on both the forms and to the assessor that Rachel could only stand and walk 50m but no more than 200m. Rachel cannot walk any further due to spasticity in the left leg when she becomes tired causing the left leg to clonus and she becomes high risk of falling. The assessor asked Rachel how long she could walk around a supermarket to which the response was she couldn`t as busy places if she was to take the slightest knock would cause her to fall and she is unable to stand herself back up without assistance and could cause serious injury to herself that could leave her with loss of all mobility if she was to suffer an injury on the right side, the assessor then asked her to imagine if it was late night shopping and no one was around. This would also not be possible as after 18:00 in the evening Rachel is physically exhausted and fatigued and does not leave the house, the 10 – 15 minutes as advised in the assessors report and the decision is completely inaccurate. The decision also states that Rachel cannot go out safely on her own due to lots of people this is in fact down to the above point of that it would cause her significant harm or injuries if she was to be knocked off balance and also cause her too much psychological distress. Rachel has also advised on both forms submitted and to the assessor that in busy places (most shops on a daily basis) she uses her wheelchair and does not walk. Rachel also requires the aid of another person to push the wheelchair as she cannot manoeuvre it herself as she has no use of the left upper limb. The decision states “You reported that you are able to workout timetables and only have someone with you when going out due to worrying about being around lots of people.” Rachel cannot safely walk outside the house without another person by her side as she even struggles to be able to walk in a straight line due to balance issues even on any journey undertaken. Rachel cannot safely manage any steps without the assistance of grab rails (present throughout the home) or the help of another person, this is essential in crossing roads and having to step up and down curbs where there are no grab rails, as stated Rachel would not be able to stand herself up without assistance and if she was to fall when stepping off a curb into the road this could be extremely serious. Rachel has taken a number of falls within the house and suffered bruising to her body, this was also advised to the assessor and that it happens approximately once a month due to balance issues  especially when she becomes tired. Descriptor F (12 points): Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. ‘Follow the route’ means make one’s way along a route to a destination. This involves more than just navigation of the route. Safety should be considered in respect of risks that relate to making ones’ way along a route (for example, tendency to wander into the road, inability to safely cross a road or risk of self-harm due to overwhelming psychological distress caused). For example, a claimant with a severe visual or profound hearing impairment may be at a substantial risk from traffic when crossing a road.The familiar route does not need to be planned – it is familiar. Any significant diversions from that route are therefore irrelevant – it is no longer the familiar route. However, making one’s way around road works, or a change of train platform (i.e. minor diversions) are part of being able to follow the route of a journey.The descriptor refers to “a familiar journey” rather than “any familiar journey”. Accordingly, claimants can satisfy the descriptor by showing that they typically need to be accompanied by another person or an assistance dog or to use an orientation aid on the majority of days when undertaking familiar journeys (it’s not necessary to show that they need such support for every possible familiar journey on most days).This descriptor is most likely to apply to claimants with cognitive, sensory or developmental impairments, or a mental health condition that results in overwhelming psychological distress, who cannot, due to their impairment, work out where to go, follow directions, follow a journey safely or deal with unexpected changes in their journey, even when the journey is familiar. A claimant who suffers overwhelming psychological distress whilst on the familiar journey and who needs to be accompanied to overcome the overwhelming psychological distress may satisfy descriptor 1F.A claimant who is actively suicidal or who is at substantial risk of exhibiting violent behaviour and who needs to be accompanied by another person to prevent them harming themselves or others when undertaking a journey would meet this descriptor. In cases such as this, the HP should look for evidence of suicidal thoughts and/or behaviour. In cases of violent behaviour there must be evidence that they’re unable to control their behaviour and that being accompanied by another person, who can intervene if necessary, reduces a substantial risk of the person committing a violent act. Descriptor B (4 points): Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided.   In the written decision it also stated the below points I decided you can plan and follow the route of a journey unaided” and the following sentence then states “it was noted that you also have difficulty moving around” to which these two statements contradict one another. During the face to face assessment Rachel was in a sitting position and never stood up or walked for the assessor to be able to make any kind of assessment. The decision also reports that Rachel “showed adequate general memory” this was also advised that Rachel does have memory issues caused by the bleed and the swelling to slightly damage this part of the brain in the frontal lobe and the example of the audio book in English Literature was one that was given to help her with this problem. Rachel since returning to school has also had a funded personal assistant helping her every day in school from explaining classwork when she has struggled to remember or understand along with her leaving lessons 10 minutes early to ensure that the corridors are clear and that she can safely get to her next lesson along with her personal assistant. Rachel`s physio in Warrington also comes out to the school to assess her needs as some lesson (e.g Science) she requires a special chair that she can sit on safely without risking a fall but this also has not been mentioned in the current decision. It was also advised that Rachel has to be driven to school and dropped off at the reception by her mother and collected at the end of school by her grandparents where she stay until her mother is able to finish work and collect her. Rachel is unable to be left unattended without supervision due to her condition and to do so could result in serious harm both physically and mentally. Please can you send a full copy of the assessor report along with the names and occupations of all the people involved, copies of all communication channels and any case notes (all versions) relating to this assessment of Rachel`s claim so that the details can be checked that the relevant parties where qualified enough to make the below assessment accurately, especially as Rachel remained seated throughout hew whole face to face assessment and also that it is not consistent with any of Rachel`s medical history advised to us by her neurologist team and physiotherapists. All the above information is required if this reconsideration decision is not successful and we have to take the issue further so that we can present clear and precise evidence to show that the decision made is incorrect and factually inaccurate in comparison with the medical experts that Rachel has been under since 2015.     Written decision You are able to walk around shops for 10 to 15 minutes as a slow pace without stopping. On the balance of probability and the assessor understanding and experience of your condition, it is reasonable to suggest that you would be able to walk over 200 meters. I decided you can stand and then move 200 meters either aided or unaided. This is consistent with your medical history, informal observations at your face to face consultation, the information you provided how your disability affects you, your mental state and physical examination results.”



  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Ruthie1976 - I'm very sorry Rachel hasn't got the PIP award she expected. I'd just like to say I had exactly the same DLA award as her, & had to migrate to PIP. I received the standard rate for both components with PIP, & went through a Mandatory Reconsideration, resulting in then getting the enhanced rate for mobility. I'm also a qualified physio, so do understand her condition, & how much ongoing physio is both helpful & necessary.
    That being said, if you'd like an honest answer, personally I feel your MR letter is way too long.

     - PIP, unlike DLA, is about your functional ability; the difficulties you face daily due to your disability, not your diagnosis. The DWP Decision Maker is not medically qualified, so you should just state where you think she should have been awarded points, giving a couple of examples of the difficulty she faced with those descriptors that applied at the time of her assessment.
    - Altho with a MR another Decision Maker looks at the whole award again, as you were presumably happy with the standard rate she received for daily living, I would have concentrated on the mobility component.
    -  If you had new medical evidence which shows how her disability affects her mobility, fine, otherwise no need to re-send.
    - You need to be aware that you are observed coming into/going out from the assessment, so Rachel was not just seen seated all the time.
    - Mobility components - 'Planning & following a journey' doesn't take really take into account any physical problems (which are considered in the next section), as you've noted it's more about someone with mental health problems, etc. resulting in overwhelming psychological distress, or if your sight/hearing is impaired. 'Moving around' concerns walking outside on a flat surface. Falls in the home wouldn't be considered (you've mentioned however, that she only falls once a month at home). So the assessor has to go on the balance of probabilities as to her problems the majority of the time.
    - Many people have successful claims; some do not, & we often hear about 'inaccuracies' in assessment reports. You should concentrate on where points should have been gained, rather than write about these 'inaccuracies,' as it is the former which helps with a PIP claim.
    - You can ring the DWP ( Tel: 0800 121 4433) to ask for a copy of the assessment report about a week after an assessment, so you could certainly get this.

    Unfortunately less than 1 in 5 MRs are changed, so it's possible you may wish to take this to a tribunal. I don't doubt your daughter's problems, & I wish her every success. :)

  • ruthie1976
    ruthie1976 Member Posts: 6 Listener
    Hi Chiarieds
    Thank you for your help and response. We are also disagreeing with the lower living rate as she cannot cook a meal and needs help to dress her upper limbs. The f2f assessment was done in the home. I answered the door and also showed the assessor out and Rachel remained seated the whole time. I have also sent letters from consultants, physios and OTs all stating no use of left limb and spacticity in the left calf downwards. Rachel also suffers serious migraines now due to too fatigue and stress about 5 a week that can knock her sick or she would suffer poor vision. I tried to send as much as possible. It is heartbreaking as it is clearly visible the disability and that the brain was damaged too much to ever get any more improvement. Rachel has cried everyday since and the headaches are now daily due to the stress
  • ruthie1976
    ruthie1976 Member Posts: 6 Listener
    Also the most important issue we are really confused with is what is meant by walking with an aide. We have submitted the claim as Rachel walking no more than 200m based on someone being by her side to hold on to as aided. I phoned DWP this morning and they were also unsure but advised that they thought aided meant with her splint on her own and no one by her side to hold on to which would then be no more than 20 meters. This was noted for the new case assessor to advise as I can't find anywhere the accurate definition of aided. Can anyone help
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @ruthie1976 - Thank you for your reply. Sorry, I wasn't aware that Rachel's f2f was at home, & she remained seated throughout, as you hadn't mentioned this.
    As far as the 'Moving Around' part goes, according to the Benefits and Works Guide June 2018, 'aided' means with
    (a) the use of an aid or appliance; or
    (b) supervision, prompting or assistance.
    Everything is arguable, 'what is assistance'? for example. However, you have written that Rachel can walk between 50 & 200m, so this might currently be difficult to 'undo,' only gaining 4 points, as mentioned above.
    It's also important to take onboard the 'reliably' concept. Can this be done safely, without causing pain/discomfort, or fatigue during/after the activity, does it take her longer than someone without her disability? Can Rachel walk the same distance again, as often as someone without her disability might normally be expected to do?
    Nothing is set in stone, but the onus is with you to explain Rachel's difficulties so they might be even better understood. Give as much detail as possible.
    With PIP claims, sometimes sending less is more. Sending medical info that's relevant to her functional limitations is great, but I doubt her consultants know the difficulty she has with dressing, washing, or preparing food.
    I went for a MR as my decision letter said I could walk further than I'd stated without being in pain as, 'I wasn't seeing a Pain Management or Physiotherapy Specialist.' Hmm, well my GP had written saying that medication was ineffective in those with with my genetic disorder, & he'd also described my mobility problems, &, as mentioned above, I am a physiotherapist! I only had my own testimony & a letter from my GP to rely upon.
    I'm so sorry all of this has caused Rachel so much stress, & I'm sure yourself. We will all support you as much as we can. If her MR isn't successful, hopefully you'll get further advice from others here before a tribunal. Tribunal times seem to be decreasing, which at least is good news.
    Please keep in touch, & ask any further questions.

  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    I'm going to agree with @chiarieds here. The MR is far too long given that the success rate for MR is 16%. The medical history should have accompanied the claim pack but is rarely relevant. The consequences of functional ability at the date of claim is all that matters.  

    What you have in there is okay but there are no real world examples e.g. with prepping food you describe what might happen if she tried the activity. You refer, for example, to issues with balance and scalding but haven't described a recent incident where that occurred, or, if she no longer performs that activity, what happens instead in practice. Given her age you'd also need to explain whether she has ever performed the activity. So, at present, you have loads of assertion but no actual anecdotal evidence. 

    As regards mobility you've essentially applied for the wrong element. She's not likely to qualify for any rate of the mobility component on moving around but would qualify comfortably if the argument were switched to planning and following a route. 

    As regards definitions of terms please refer to https://pipinfo.net

  • ruthie1976
    ruthie1976 Member Posts: 6 Listener
    Thanks Mike. Her physio is going to do a full report for her now we have a copy of the assessors full report to dispute the facts. It's just so frustrating as she had described Rachel as not at all anxious or any memory problems and stated that she was casually dressed. Rachel was in fact dressed in her full school uniform so she couldn't have been paying that much attention. 
  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    The physio report will essentially reinforce and duplicate what you already have. The gap you have is the anecdotal stories not the medical evidence. 
  • ruthie1976
    ruthie1976 Member Posts: 6 Listener
    I was planning on doing another letter stating that after recieving the full report the facts that we dispute for example she suffers sever migraines due to stress and fatigue leaving her with poor vision and sickness. She was prescribed medication (Beta blockers) but had to stop as these caused her chest pain s. Just worried that we are looking desperate which we are as this decision has left Rachel feeling she will be left on lock down forever with no independance
  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    That's fine but you're still missing the stories. The real world examples. You need most likely two per activity. Without that you are undoubtedly heading towards having to appeal. 
  • ruthie1976
    ruthie1976 Member Posts: 6 Listener
    So I would need to add the likes of how she fell asleep during two separate mock exams due to her brain doing too much and the stress. Her PA had to wake her to finish the exam 
  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    Yes, but the stories need to relate directly to the activities. So, that one would link to reading and the argument would be that she can't read reliably and needs prompting from another person. 


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