Written evidence from Barbara Harris (HAB0078)


Response to the question posed by the Commons Work & Pensions Committee:-

“Do the descriptors for PIP accurately assess functional impairment?”

The answer is that they do not accurately assess functional impairment as there is no question relating to alertness through to sleep and this discriminates against claimants with neurological conditions.


My name is Barbara Harris. I am retired and live in Bristol.  My response is borne out the traumatic and draining experience of supporting a family member (FM) and family through two refusals of PIP by the DWP between the years 2016 and 2019, after which he was finally acknowledged to be eligible and awarded ten years of a ‘light touch’ approach thereafter.  This unwarranted predicament for my FM blighted three years of his life and that of his entire family.

Carers Allowance was also stopped but we were not informed as the two Benefit offices do not communicate with each other.  The carer found out by accident.

Fortunately, FM’s mortgage was paid off.  FM’s wife had worked in insurance and the Insurance Charity offered welcome support to the family.

However, caring for FM did not stop.


FM, now aged 55, has suffered from sleep-related epilepsy resulting from Focal Cortical Dysplasia (FCD), an intractable form of epilepsy from infancy.  The definitive FCD diagnosis was only given to us last year but treatment has been from infancy.  His neurologist has prescribed FM to have a daytime sleep but sleep occurs anyway as a consequence of over fifty years of seizures.

FM was sacked in 2006 from a company he had worked for throughout 20 years.  He was granted Disability Living Allowance which he then claimed for ten years until 2016 when DLA was scrapped and PIP introduced.  Because he had claimed ten years of DLA we did not expect a problem.
How wrong we were.


Please see attached DWP timeline of FMs two claims.  Attachment 1.

PIP Descriptor Questions

There is no descriptor question on the claim form relating to alertness or along a continuum ending with sleep.  This omission discriminates against those claimants with neurological disorders including: ME, MS, Epilepsy, Parkinson’s disease, brain injury and Motor Neurone disease.  All of these conditions, to some extent, affect the claimant/patient’s alertness and sleepiness.  In addition, medications to treat these conditions often induce further sleepiness or fatigue as they sedate.  The omission of a descriptor question therefore actively prevents claimants from accurately reporting/describing their state and also reporting that daily sleep is prescribed, as in FM’s case.
Descriptor questions are currently centred on assessing the claimant’s everyday functionality and what the claimant can and cannot do.  The claimant cannot state their neurological condition by ticking a box and therefore there can be no score.  I can understand why questions about alertness/sleep are omitted as they might be considered difficult to assess but a descriptor question about this is essential otherwise, as in our case, wrongful judgements result.  Without a box to tick, their neurological condition is ignored by the DWP.  I state this is discrimination against claimants with neurological conditions.

Assessment Process

We are informed that claimant assessors are ‘healthcare professionals’.  This can mean anything from a paramedic to a retired nurse with 3 years’ of experience on an orthopaedic ward.  This is not acceptable as they may have little or no experience of neurological conditions such as those described above.
Those claimants with neurological conditions I have categorised should only be assessed by a qualified neurologist.  Such cases should be automatically extracted from applications and sent to be assessed by a fully qualified neurologist who would be paid by the private company processing applications.

Mandatory Reconsideration

In the two claims we have made for PIP, both times refused, we submitted extra information for Mandatory Reconsideration, as invited.  The first letter came from the NHS Epilepsy Nurse from the team treating him and the second was a three page detailed letter from an eminent NHS neurologist treating FM.  Both letters were simply ignored by the DWP and in both cases he was directed into the legal system of Tribunal.

There are three additional points I need to make.
Firstly, why are claimants sent to a Tribunal which we were told was a legal court when they have committed no offence?  Why are claimants treated like felons?  Such treatment is inappropriate.

Secondly, are you aware that when NHS consultants assist their patients by writing three pages of densely worded, medically accurate letters in support of their patients claim, they do so out of the kindness of their hearts?  There is no NHS coding for this and so their time cannot be reimbursed by the private companies assessing the claimant.  This is wrong.  Those letters were systematically ignored by the DWP and writing them took NHS frontline staff away from their work. The NHS needs to give a coding to such letters in order to claim monies back from those private companies.

Tribunal Findings

The first decision to award PIP to FM gave a decision date from 27/6/2016 to June 2019, for three years.  This was a court/legal decision which we understood to be binding.  Imagine our shock when FM was contacted again in April 2018, twenty two months, not thirty six, after the Tribunal decision, to be told that his PIP had been stopped and he had to apply again.  We questioned this and reminded the caller of the Tribunal dates only to be told, “We can contact you whenever we like.”

We are aware that bonuses are paid to DWP assessors for fast throughput of cases.  This is unacceptable as it is open to abuse.  It may be tempting to some assessors, if short of money, to look through cases and ‘drop’ on claimants to make them restart the process all over again which means months and months of being dragged through misery.  If a Tribunal is a court of law then why are its decisions not legally binding on the DWP?

Matters to be addressed by the Parliamentary Select Committee for Work & Pensions

  1. Claimants with neurological conditions/impairments should only be assessed by suitably qualified neurologists.  So called ‘healthcare professionals’, unless neurologically trained are not qualified to assess such claimants and this results in discrimination of those claimants.  Such cases should be ‘lifted out’ of the system and sent to suitably qualified neurological assessors.
  2. There is no descriptor question relating to alertness/sleep.  In FM’s case daily sleep is prescribed.  However, this cannot be reported or points awarded.  The NHS needs to give a code to such letters in order to reclaim monies from the DWP for professional time spent in composing letters in support of patients.
  3. When extra medical evidence is asked for by the DWP in support of the claim is provided, it is routinely ignored.  Why is this?
  4. Why is a refusal of claim and consequent appeal sent into a legal court system ie. Tribunal, when the claimant has committed no offence and is not a felon?
  5. If a Tribunal is a legal court, why are its findings ie. an award of three years PIP, not respected by the DWP when they stop the claim after twenty two months instead of the three years award by the Tribunal?  The claimant then has to begin the claim again, “because we can”, the DWP say.
  6. I have seen a specimen letter written to assessing staff giving an award for fast throughput of cases.  This is a questionable practice as it is open to abuse and may be why cases are reopened before the due date set by the Tribunal.  The awarding of bonuses should be stopped.


November 2021