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

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.

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.

Thankyou, I’ll have a read

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.