Written evidence from Michael Watson (HAB0028)

 

I have been ill with severe ME/CFS, including very severe IBS since Jan 2012.  I first applied for benefits (ESA and PIP) in Mar 2016, when funds were running out.  I was rejected for PIP with zero points on assessment, which I took to tribunal and won standard care and mobility.  My ESA claim was assessed on paper and I was placed in the support group.  My ESA review maintained that position.

I have since been reassessed for PIP twice!  The first review came around the time I moved house, and while it increased my mobility claim to enhanced, I was assessed at 11 points for care, so my standard care award remained unchanged.  I should have appealed that award at the time, but I had too much other stress to do so then.

My second review began in Nov 2012, and is ongoing.  My assessment in April reduced my mobility award to zero on spurious grounds.  My enhanced mobility claim was only restored when I started an appeal to tribunal.  I am currently appealing again in order to get enhanced care.  In essence, my claim is based on the fact that I am forced to spend 23 hours a day in bed, and cannot perform any of the activities to an acceptable standard.

ME/CFS is a complex, multi-systemic illness, and the impact on my life is severe and complex. In particular, in performing one activity, my ability to perform another one is seriously impaired.  Furthermore, the impact of my illness on my cognitive impairment is not recognised at all when assessed by the DWP.  This aspect of my illness is difficult to spot – you notice I can prepare this submission, which superficially suggests I have no cognitive impairment.  But, I am writing this at considerable personal cost. It takes me many short sessions of writing to prepare this submission.  I am exhausted each time by the effort.

If people in general do not understand the impact of my illness, the DWP definitely do not.  What is interesting is that in reviewing the DWP’s own guidelines for PIP assessors, I find that many of the statements found in there directly apply to me.  Yet, none of those statements can be found in any of my PIP assessments.  It seems that the DWP and the assessors completely ignore the DWP’s own guidance!  This is particularly strange as there are long sections that are being ignored, not just obscure sentences!

I am an active member of the ME/CFS social media community, and hear a lot of the struggles of fellow sufferers with the benefits system.  My troubles seem quite commonplace.

Suitability of assessments

1. How could DWP improve the quality of assessments for health-related benefits?

Firstly, the assessors and the DWP decision makers should start to follow the DWP’s own, published guidelines for assessors.  For instance, I have never had a PIP assessor discuss the acceptable standard (Safely, Reliably, Repeatedly and Timely) during an assessment.  Indeed, the omission of such appears to be intentional.  The failure of assessors and decision makers to follow the DWP guidelines creates non-existent barriers to PIP for ME/CFS claimants (and probably many others).

Decision Makers and Mandatory Reconsiderations should review assessor’s reports against all other evidence and make decisions based on all the available evidence, not simply and blindly follow the assessor’s report. The report from my original assessment was so shoddy that I scored zero points (I was naïve at that time, and did not understand how to express my difficulties in PIP language). My first tribunal awarded me standard care and mobility.  My second assessment was better, but still missed some important points, but I did not have the capacity to appeal my claim at that time. At my last assessment, the assessor made assertions that were not raised during the assessment and seemed based solely on prejudice. This fact was easily identifiable and should have been picked up at the first decision point, or even at MR, rather than at the DWP’s review after I appealed to tribunal.

Dividing PIP into a number of activities and assessing each one in turn ignores the impact of each activity on all the others.  There should be specific questions on this point.  While this interaction between activities is recognised in the guidance to assessors, I have never seen any evidence that the assessors or the DWP take it into account.  I suffer from ME/CFS.  One of the ways of describing this illness is having faulty energy production, rather like that of a rechargeable battery that will not recharge properly.  If I do an activity, I have to draw on my limited reserves, and it takes hours for my body to recharge.  Attempting to do tasks for which I do not have energy results in major increases in my symptoms. Applying this to PIP, if I prepare food (to an unacceptable standard), for example, I then do not have the capacity to perform other tasks for some hours.  The more I push myself, the greater the danger of a severe reaction.  As a result, there are some daily tasks I do not perform at all – simply to save energy.  According to the DWP’s guidance, I should be judged as unfit to conduct any of these activities acceptably – this has never happened for me, and from what I hear, many others too.

 

a. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

I am completely unaware of any improvements in PIP.  The process of assessment is as horrendous and unjust as ever.

3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?

The PIP descriptors are dreadful because they make no reference to the acceptable standard (Safely, Reliably, Repeatedly and Timely).  This omission allows assessors to ignore this important concept when questioning applicants, creating opportunities for false reporting.
 

6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

Making decisions on claims based on clinician input is the only sensible way for benefits entitlement to be assessed. The current assessment regime is completely impractical because it is far too shallow.

I have no confidence in the DWP to correctly assess my claim – they have totally failed to do so after three attempts.  I treat the assessment and mandatory reconsideration processes as mere hurdles to attending a tribunal, where my claim will be considered fairly.

I suffer from severe ME/CFS including very severe IBS.  This is a complex, multi-systemic illness, and the impact on my life is severe and complex.  It is not possible to grasp the extent and impact of my illness on my life is an hour or so.  For this reason, I attempt to explain the impact of my illness on my life through thorough answers to PIP application questions.  Sadly, it seems the assessors ignore or confuse much of my answers, written or verbal, producing a caricature of my life in their reports.

For claims to be assessed on the basis of clinician reports, there needs to be much greater integration and cooperation between the DWP and the NHS in defining the nature and content of appropriate reports.  In my experiences, consultants will happily produce reports that accurately describe my health issues, but they cannot produce reports health impact reports.  Such reports are more properly prepared by Occupational Therapists, in conjunction with the appropriate consultants.

In 2017, I argued for a paper-based PIP assessment.  This was rejected by the DWP because I did not have an appropriate consultant report on which to base the assessment.  I had however, submitted an OT report which provided all the necessary information in a way that a consultant is not qualified to provide.  It seems to me that the DWP should treat professional conducted OT reports as carrying the same weight and significance as consultant reports.

So, for me, PIP assessments are a farce.  My belief is that all assessments should be paper-based, and not involve the claimant at all – as the assessments are very stressful for claimants.  I have had three assessments, two face-to-face and one of the phone.  None of the reports were worthy of the name, so were a complete waste of time and energy.  If they insist on assessing me in this pathetic way, a phone assessment would be best as it places the least impact on my health.

7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

The answer is self-evident – PIP assessments completely fail to assess people’s claims properly.  The suspicion held by many of us is that the PIP assessment process operated under the DWP is designed to fail people; that it is their undeclared intent to people off appealing through the overwhelming stress they involve.  Those of us who refuse to accept the nonsense reported by PIP assessments expect tribunals to judge our claims fairly.

a. What could DWP change earlier in the process to ensure that fewer cases go to appeal?

The DWP needs to change its attitude towards claimants, to respect them as people so desperately needing support that they humble themselves to the point of relying on state aid rather than spongers who are a drain on society. Until that attitude is changed, no other changes will be of value.  If that attitude changes, everything else in the PIP assessment process would necessarily change.

8. Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (eg. PIP and ESA)?

On the upside, having one assessment rather than two could reduce the stress on claimants, but the downside is that the impact of having all benefits assessed on one occasion would be horrendous.  If a claim is rejected on review, claimants risk complete loss of benefits until the long, drawn out appeals process changes that decision. So, for me, the drawbacks heavily outweigh any benefit.

Reducing the frequency of reviews would reduce the burden on the DWP to carry out those reviews.

9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?

I have never heard of the DWP’s Health Transformation Programme!  I have had to google it, and I find a load of words that I cannot read due to my cognitive energy limits (dealing with this questionnaire is extremely exhausting for me).  I guess it is a political initiative that has little impact on reality.

a. (For people claiming) Would you like to be able to manage your benefit claim online?

Absolutely.  Spending time waiting on the phone for the DWP to answer even simple questions is very stressful.  I am technically capable, but I am aware that many are not, so better provision needs to be made for them.

b. What would be the benefits and drawbacks of DWP bringing assessments “in house”, rather than contracting them to external organisations (Capita, Atos and Maximus)? In particular, would this help to increase trust in the process?

Contracting assessments to external organisations seems to me to be a political decision for the enrichment of those external organisations, and has absolutely no benefit to claimants.  They exist to give the impression of independence, but this is a pure smokescreen.  It creates scope for discontinuities on claims, allowing paperwork to go missing, misunderstandings to arise, and increased stress for claimants.

The lack of trust in the system stems from the DWP itself, and extends to all its acolytes.  While removing the external organisations would make perfect sense, we would still be left with the DWP, whose credibility is very low.

The impact of assessment/application on claimants

 

13. DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?

  1. Significantly increasing the length of awards.  At the moment, I feel like I have barely completed an award than I have to start preparing for the next assessment, meaning that I am left in a permanent state of distress in facing this iniquitous system.
  2. I have constant, underlying stress simply from relying on benefits.  Far from being beneficial, the system is entirely detrimental to my health.  The only benefit I gain is the money I receive.  There is absolutely no consideration of the support I need, reducing everything to a financial calculation.
  3. The DWP’s entire approach is adversarial.  It seems like they disbelieve every word I say. This institutional disbelief causes tremendous stress.  While I have learned to not take it personally, I still find it distressing.  I hear the cries of many, many others who simply cannot stand up to the pressure of this disbelief.  I spend a lot of my time (when my health permits) in social media, encouraging others to stand up for themselves against appalling pressure from the DWP.
  4. I have had to learn the detailed workings of the PIP system in order to have any chance of defending my claims.  Becoming my own benefit’s expert is extremely costly to my very poor health.  Why should I need to defend my claim at all?  While I have sporadic capacity to learn the system (in spite of my impaired cognitive function), for many, this is quite beyond them.
  5. There are two key words that have been lost by the DWP:  respect and trust.  If claimants were respected, they would not be disbelieved on application. If claimants were fully trusted, there would be no need for the DWP to initiate reassessments, trustworthy claimants would notify the DWP when their circumstances changed.  When these two words are lost, the entire system is lost.

Waits for assessments

14. What could the Department to do to shorten waits for health-related benefit assessments—especially for ESA/UC?

a. How effectively does the “assessment rate” for ESA cover disabled peoples’ living costs while they wait for an assessment? Is there a case for introducing an assessment rate for other health-related benefits?

I was put on assessment rate for ESA for over a year.  I later discovered I had been under-paid, and this was subsequently corrected.  Assessment rate pay was essential to my financial survival during that time.  I believe the case for introducing an assessment rate for PIP is overwhelming.  Having some income, is better than nothing.

During my current round of PIP review (My third in 6 years), I temporarily lost my enhanced mobility award (reduced to zero).  However, the fact that I was still getting a standard care award (as well as ESA) meant I was able to absorb the impact by adjusting my financial affairs.  (My enhanced mobility award was restored some 4 months later).

My original PIP claim was completely rejected by the DWP and this decision was only corrected by tribunal some 10 months later.  I was extremely financially challenged during that time (as I was then on ESA assessment rate).  Had PIP also paid an assessment rate throughout my claim and appeal period, this would have greatly alleviated my stress levels (which had a detrimental impact on my health) and eased my financial burden.

I stand by the view that most people will only stoop to claim benefits if they are desperate.  I did everything I could to avoid claiming.  I accept there are some who try it on, but most are legitimate claimants.  That being the case, paying an assessment rate is a reasonable thing to do for all social security claims.  Would it be possible to conduct a quick review at the point of claim, to see if the claim seemed likely to succeed, in order to weed out seemingly bogus claims?  That review need only consider whether a claim qualifies for the payment of assessment rate.  It may also be a guide to fast-tracking the full assessment of bogus claims so that their claims are assessed and rejected from the system more rapidly, allowing the focus to be put on legitimate claims.             

Policy development

16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?

I have absolutely no evidence that the DWP works with disabled people like myself to develop policy.  It seems to me that policy is developed based entirely on the rhetoric of certain politicians.

 

November 2021