PIP advisor lied re. Assessment. How can we get justice?

My sister is 33, and has a high grade brain tumour. She has weakness to one side, cognitive deficits, uncontrolled epilepsy and needs 24 hour per day care.

My sister received higher rate care and mobility disability living allowance. We then had a home assessment and the PIP advisor was what can only be described as evil. I am a specialist nurse but was deeply distressed by the experience. The assessor was rude, abusive and shouted at my sister. At one point I stopped the assessment and asked her to leave, I was not informed however that this would not impact my sisters claim so fearful that the claim would be closed if we terminated the assessment we continued.
I immediately filed a complaint with PIP which has been closed as the advisor (obviously) denied all charges.

Later we have been informed that no points have been awarded for the care component. This is ludicrous. My sister cannot cook, prepare her own medication and needs daily reminders, and is often incontinent during a seizure requiring help. To say that she has no care needs is shocking.

The assessor must have lied on the report. We will apply for mandatory reconsideration but is there any way the assessor can be held fo account? I am still
Deeply distressed by the experience. This individual was the most disgusting human being I have ever encountered and I cannot contemplate that she is allowed to continue practicing. Is there anything at all we can do?


  • Alice_Holt
    Alice_Holt Forumite Posts: 5,620
    Eighth Anniversary 1,000 Posts Name Dropper
    edited 26 November 2019 at 11:09PM
    I'm going to answer your question from the viewpoint of the MR / Appeal against the DWP decision to award your sister no points, and hence no PIP award.

    Your MR / Appeal needs to focus on why your sister should have been awarded PIP. The more factually and evidence based the better. A clear, reasoned, and evidenced case is much more likely to succeed at tribunal.
    Too much criticism of the healthcare professional (as opposed to dispassionately pointing out flaws and inconsistencies in their report) is likely to distract from your case, and doesn't serve the purpose of explaining why and how your sister meets the relevant PIP descriptors.
    To this end, it would be helpful to see if your sister can get help from her local advice centre / CAB with the appeal.

    MR form and guide:

    Some info on PIP appeals:

    There is some recent case-law re epilepsy and the severity of any consequent risk of harm that will help you case:

    Did you sister get a PIP mobility award? You don't say in your OP. I'm assuming not, hence the above links (but these do apply to both PIP components).

    I've given you quite a few links, but please look at them carefully as you will find them very helpful to achieve a successful appeal outcome.

    A complaint against the healthcare assessor needs to be regarded as entirely separate from the task of getting an award for your sister, and putting right a flawed assessment / decision.
    Have you followed the complaint process of the assessing company?
    What do you mean by "I immediately filed a complaint with PIP which has been closed "? Did you complain to the DWP or the company (e,g IAS / Capita )?
    Have you taken the complaint to the Independent Case Examiner, or your MP?

    Remember that getting this decision over-turned at tribunal could ultimately aid any complaint, as it indicates that an independent tribunal found the assessment not to be credible.
    Alice Holt Forest situated some 4 miles south of Farnham forms the most northerly gateway to the South Downs National Park.
  • Tanny08
    Tanny08 Forumite Posts: 12
    Third Anniversary 10 Posts Combo Breaker
    Thankyou so much for your reply, Alice Holt.

    My sister has been awarded higher rate mobility allowance, but nothing for the care component. We specifically made these points to the assessor :

    Sister lacks insight into danger, e.g would try to take a hot tray out of the oven without gloves. So no cooking. Has weakness to one side that gets worse post seizure, so no holding a kettle. Food is always cut up.

    Sister has varying levels of independence with toileting and hygiene. Sometimes minimal supervision, post seizure or during treatment she may need full assistance. Often I continent during a seizure and not able to clean herself in the post octal phase. Also loses speech and has pronounced dysphasia.

    Sister is unable to remember which medication to take or what medication she takes. So all is prepared and given. Has PRN buccal and PR meds to be administered by another person in case of a non self terminating seizure.

    Sister has a lack of insight and issues with memory so laundry and ironing is done for her. Shoes are put on for her and she is helped to dress.

    She has continual supervision due to the epilepsy and cannot go outside unaccompanied due to memory loss, risk of seizure, lack of insight meaning she is at risk of danger from traffic etc.

    I filed the complaint with CAPITA, within minutes of the assessor leaving via telephone. The response came within about four weeks and no action was taken as the complaint of rudeness etc was denied by the assessor, so could not be proven or disproven.

    I find it very hard to disassociate from my anger towards the assessor. I cannot fathom how someone could be abusive to a person that is so obviously very vulnerable. It has affected me profoundly and has been exacerbated by the lack of justice we are faced with.
  • Tanny08
    Tanny08 Forumite Posts: 12
    Third Anniversary 10 Posts Combo Breaker
    Thankyou. I need to remain impartial I know but it is so difficult. I honestly feel like I was assaulted in my
    own home (I live with my sister). My sister has woes finding difficulties and aphasia and is easily confused. When the assessor asked her a question and she did not respond directly, the assessor repeatedly shouted “I don’t care about that answer what I ask you”. My sister was frightened and the look on her face haunts me. I was there to protect her and I didn’t. I wish in hindsight I’d have thrown the assessor out but I was afraid the claim would be ceased and I’d be responsible for my sister not having the income she needs to attempt to live a normal life. The assessor was rude to me also but many people have been rude to me in my life I can handle that. But it’s the fact that I allowed this individual to verbally abuse my defenceless sister....I can’t forgive myself for it.
  • poppy12345
    poppy12345 Forumite Posts: 17,131
    Ninth Anniversary 10,000 Posts Name Dropper
    Tanny08 wrote: »
    Sister lacks insight into danger, e.g would try to take a hot tray out of the oven without gloves. So no cooking.
    This is not part of the criteria for preparing and cooking food. Cooking food at waist height does not consider the ability to bend down to access an oven.
    This activity considers a claimant’s ability to prepare and cook a simple meal for one from fresh ingredients. It assesses ability to open packaging, peel and chop, serve food on to a plate and use a microwave oven or cooker hob to cook or heat food. Serving food means transferring food to a plate or bowl, it does not include presentation.
    Carrying items around the kitchen or carrying food to where it will be eaten is not included in this activity.

    Washing an ironing are also not part of the PIP descriptors.

    She's already got Enhanced mobility which means she's already scored the points for not being able to go out alone, which is following and planning a journey.

    I completely agree with Alice here, concentrating on the report and lies can seriously weaken your sisters case. I realise how frustrating this is but you need to leave that anger behind, forget about the assessment and move on for now. The assessment is in the past and you need to concentrate on the future.

    Most MR decisions remain the same with only about 15% of decisions changing at this stage so she'll very likely have to take it to Tribunal. Appearing in person will give you the best chance of a decision in her favour.

    I'd advise you to have a read of this link, it will give you more of an understanding of the PIP descriptors and what they mean.

  • Tanny08
    Tanny08 Forumite Posts: 12
    Third Anniversary 10 Posts Combo Breaker
    Thankyou, I’ll have a read
  • Alice_Holt
    Alice_Holt Forumite Posts: 5,620
    Eighth Anniversary 1,000 Posts Name Dropper
    edited 27 November 2019 at 10:52PM
    With uncontrolled epilepsy you are potentially looking at:
    Needing supervision with cooking (due to the danger of seizures);
    Needing supervision with bathing (due to the danger of seizures);
    This assumes there is no warning of fits, so no ability for your sister to make herself safe.
    Look at the links I provided re fits and risk of harm.

    With cognitive deficits consider medication (poor memory - but this is only 1 point!), household budgeting, and engaging with people. Do you (or another family member), for instance, help your sister get her points across and help her not to become confused when she attends GP appointments, etc.
    And of course there is the post seizure confusion and recovery period.

    This bit could go into the submission "the assessor repeatedly shouted “I don’t care about that answer what I ask you”. My sister was frightened ", as it will explain to the tribunal panel why your sister may not have given full replies to the assessors questions.

    Be aware of time limits for a MR. You can put a late MR in, but will need to explain why it is past the month deadline.
    Also be aware that a MR enables the DWP to reassess the entire award, not only the DL elements. There is a risk her Mobility award could be reduced. Probably very unlikely, but you need to be aware of this risk.

    In terms of the complaint - can you escalate it to the Independent Case Examiner?
    The assessment report will tell you the profession of the assessor - nurse / paramedic, etc. As a nurse, you will likely be aware of the relevant professional bodies, and their ethic standards.
    Since Capita are working on behalf of the DWP - that is another track you could (post election) take up with your MP & DWP Sec of State.
    Capita's CEO email address can be found online - google CEO email addresses.
    You are not alone - https://www.disabilityrightsuk.org/news/2019/july/one-three-capita-pip-assessments-found-have-significant-flaws

    This exercise needs to be separate from the appeal process. I would definitely see if your sister can get help from her local advice centre / Citizens Advice with the appeal, particularly given recent case-law around seizures.

    Do look at all the links I gave you in my first post carefully, as you will find them very helpful to achieve a successful appeal outcome.
    The link to the PIP assessment guide that both poppy and I have given you, will show that help with laundry, ironing, housework etc, are not part of the PIP activities.
    The How to win a PIP appeal is essential reading, as it takes you through the appeal process.
    The MR form link takes you to the form you need to complete to start the appeal process.
    The benefits and work links will give you the PIP points system and descriptors. 8 are needed for a standard award, 12 for enhanced.
    Alice Holt Forest situated some 4 miles south of Farnham forms the most northerly gateway to the South Downs National Park.
  • Tanny08
    Tanny08 Forumite Posts: 12
    Third Anniversary 10 Posts Combo Breaker
    In a nutshell, the assessment had found that my sister does not need any help or supervision the majority of the time.

    We will write to request a mandatory reconsideration and explain that the report was flawed and that it was conducted in an illegal fashion. For example, the assessor asking how my sister is when she has not had a seizure, when she has frequent seizures, is not a fair representation.

    I have two questions

    1) Due to the complex nature of my sister’s illness, should she have been assessed by a doctor?

    2) As my sister has a high grade brain tumour, should she have been assessed at all? There are rules around these kinds of illnesses which I cannot discuss further as it upsets me too much.

    My sister presented with absence seizures, was taken to hospital and then had a tonic clonic seizure. She was intubated and sedated, dropped her GCS and had an emergency craniotomy due to raised intra cranial pressure. Initial diagnosis was herpes viral encephalitis. However a biopsy of a mass taken showed a grade 3 anaplastic astrocytoma brain tumour. A combination of the raised ICP and the craniotomy left my sister with ongoing dysphasia, amnesia and epilepsy. My sister had a cranioplasty post (largely unsuccessful) debulking surgery and then received radiotherapy with adjuvant chemotherapy. The radiotherapy exacerbated the symptoms. As a result my sister also has osteoporosis. My sister was commenced on dexamethasone and received a prolonged course as any attempts to wean resulted in seizures (so has affected her bone density). My sister also has elevated pro lactin levels ? from a pituitary adenoma.

    The report made no note of the complex nature of my sisters condition with regards to cognitive function. My sister has dysphasia, and frequently jumbles up words. She has poor memory and recall. She has uncontrolled epilepsy, and is on the maximum dose of anti convulsant medication. Her doctors have said that even if she has a seizure daily, there’s not much that we can do due to the cause (the tumour).

    A typical day would look like this:

    My sister does not remember what medication she takes, or when to take it. Medication is prepared in a dossett box, by family members and she is reminded when to take it.

    On a good day, my sister can get into the shower to wash. Even during this time she is supervised due to risk of seizures. On a bad day, or during seizures she will not be able to make it to the shower. The seizure pattern runs usually up to ten seizures over a two week period. If the seizure is severe mobility is affected and use of her right arm, which becomes painful and immobile. In this instance being honest she will usually forego a wash. Or we will help her to wash at the sink.

    With regards to eating and drinking, she has a tremor to her right side. During seizures she develops abnormal flexion to her right arm, and is not able to use it. She is also at risk of seizures when for example holding a kettle and has previously scalded herself. So we do not let her make hot drinks. Prior to the seizures she becomes much more confused and her memory worsens, so she may forget a meal in the microwave. She is right handed so food has to be cut up, and eaten with the left hand. She has special light cups in case of dropping a cup that’s too heavy.

    On a good day, sister can toilet herself with the aid of a raised toilet seat. Post seizure (a minimum of 8-10 times per month) she is often in continent and does not have use of her right arm and is confused and very dysphasic (to the point where she cannot form words). Sometimes she is not able to weight bear. Sometimes even her sitting balance is affected. When this happens we help her to stand with use of a frame and change her.

    Sister requires taking to all appointments and has them arranged. She would not be able to remember to arrange or keep to appointments.

    My sister has 24 hour care, by a relative. If the relative can no longer receive carers allowance I don’t know what we will do. Is it worth contacting social services? Can she be assessed by occupational therapists/ a neuropsychologist?

    The nature of my sisters illness means that ongoing therapy has been exhausted. She saw a neuro psychologist whom wrote a report (this is some years back) but input then ceased as nothing was likely to change. We have six monthly MRI scans to check the tumour. That’s all we can do.

    Would writing this in the mandatory reconsideration be enough? Or will we need further evidence?

    Further evidence could be obtained however not within a month, the waiting lists are long. Can we request for a doctor to assess? The assessor we had is a nurse by background. I am a clinical nurse specialist with six years experience of working in neurology. The assessor appeared to have no clue what I was talking about when I detailed my sisters condition so I am not surprised that the report is not accurate.
  • Tanny08
    Tanny08 Forumite Posts: 12
    Third Anniversary 10 Posts Combo Breaker
    I also informed the assessor that I would be contacting CAPITA to write a formal complaint, and asked for her PIN number as I would also be contacting the NMC. She refused to give me her PIN number, reluctantly provided her name and I believe this may have influenced her inaccurate report.
  • Spoonie_Turtle
    Spoonie_Turtle Forumite Posts: 6,797
    1,000 Posts Fourth Anniversary Name Dropper
    For the mandatory reconsideration, you should detail exactly which descriptors your sister would meet for the various activities. It sounds like you have an excellent understanding of your sister's condition but perhaps less so of the PIP activities and descriptors. Poppy posted a link to the official guidance, I'll post it again just in case https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria and there's also https://pipinfo.net/ which looks at them individually.

    I understand the desire for justice, but the only real way is to focus on fighting for an appropriate award for your sister. Any upheld complaint against the assessor is a bonus in terms of justice, but it won't actually help your sister be awarded the money she is entitled to. So you need to be thinking of these as two separate objectives - first to fight for the correct award, and second to make the complaint in order to hold the assessor to account.

    I wish you the very best with all this!
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