Written evidence from A Bennetton (HAB0018)

 

 

Background

 

I was retired from teaching on health grounds in 2004 and have been in continuous receipt of health and disability benefits since - originally contribution based IB and DLA, now contribution based ESA (support group) and PIP (enhanced care and enhanced mobility). I have a number of chronic conditions, two of which are incurable and degenerative, and use a powered wheelchair to mobilise. Since the transfer to ESA/PIP I have been reassessed on average every two years and, though I have never had to appeal a decision having been re-awarded the maximum benefit possible, every single assessment has been subject to severe flaws, some of which are summarised below:-

 

  1. I have repeatedly asked that forms be sent in electronic format as I use assistive technology to complete them. For ESA50 forms I have had to find them myself online, however the PIP forms are personalised so I have to simply attach pages to the back of the form which have never actually been read. DWP have not once provided accessible forms and this is the subject of a current investigation by ICE.
  2. Even though at the time no assessment centre within a reasonable travel distance was                             wheelchair accessible, I had to provide and pay for proof that I use a wheelchair before                             being granted a home visit for my initial ESA claim.
  3. For each subsequent assessment, despite providing such proof with the forms, I have                             had to fight to be granted a home visit, often entailing paying for another, identical, letter                             from my GP.
  4. Despite providing such proof I have, for example, been asked to attend an inaccessible assessment centre with no parking and more than 40 miles from my home, which would have involved a 15 minute ’walk’, a 45 minute train journey then a 50 minute ‘walk’ as the only available bus was not wheelchair accessible, however because a non-wheelchair user could do the journey within the maximum 90 minutes it was considered acceptable. At the time there were at least 5 closer assessment centres including a fully accessible centre less than a mile from my home.
  5. On many occasions appointments have been cancelled with little or no notice - i.e. the                             assessor simply not arriving - and in one particular case, 11 such appointments were                             cancelled by the provider meaning that the assessment process took 2 years to complete.
  6. I have been accused on multiple occasions of failing to attend appointments which the providers have cancelled and/or for which assessors have failed to arrive, with consequent risk of losing my benefits.
  7. Even when they know they are being audio recorded, the assessors’ reports bear very little resemblance to what was actually said. E.g. I apparently said in one assessment that my digestive issues were due to depression. I actually have severe scarring and adhesions from multiple surgeries which cause intermittent obstructions, which is what I said according to the tape recording, and it is difficult to imagine how that got translated as ‘depression’.
  8. Despite an assessor making multiple objectively factual errors (e.g. even my name was wrong, omitting several conditions, omitting the list of consultants completely) a DWP DM would not listen to the audio recording made officially to confirm the multiple other errors within the report. As I was still placed in the Support group, I was not able to appeal anything so at the next assessment that report was treated as being accurate to the point that because I’d only scored 4 points for an activity, I was only awarded 4 points again because there was no evidence my condition had worsened.
  9. I was assessed for PIP by a paramedic who had clearly not read any of the paperwork, had never heard of Ehlers Danlos Syndrome, had no idea what it was and googled it in front of me, then treated me as if my only problem was joints which sometimes dislocate even though the condition can and does affect all connective tissue.
  10. The same paramedic reported a detailed musculoskeletal examination which simply did not take place. Again the DWP DM refused to listen to the tape to confirm this and other issues.
  11. The same paramedic reported me as having walked more than 30 metres. I remained in my wheelchair throughout the assessment and even if I hadn’t, it would have been impossible to walk 30 metres unless I went around in circles in my very small lounge.
  12. The assessors regularly advise reassessment within wholly inappropriate time scales, e.g. coincidentally the same assessor who advised the Education Department that I should receive early retirement on grounds that I would never again be able to teach or undertake any other employment, advised DWP that I would be fit for work within 2 years.
  13. Based on my most recent assessments, DWP have been advised that I will always need to use a powered wheelchair to mobilise and will therefore always meet a support group criterion, however I will still need to be reassessed in 2 years. My PIP award by contrast has, after 3 reassessments, been made indefinite.

 

I worked as a CAB benefits advisor for 6 years, and now provide online support to benefit claimants. In the course of my experience advising other benefit claimants I have come across many, many instances of blatantly wrong decisions which are maintained at mandatory reconsideration before being overwhelmingly over-turned at tribunal. I have also advised many claimants who simply do not have the stamina or support to go to tribunal (I am not able to attend tribunals to support claimants) or who are so frightened of losing whatever award that they have received that they won’t risk going to tribunal. For example, an lady who has been in receipt of PIP standard care and enhanced mobility for many years, with an indefinite award, recently sought advice on whether she should ask for a reassessment as her care needs had increased dramatically. We reluctantly reached the conclusion that it was unwise for her to do so because of the risk of losing her existing enhanced mobility award and consequently her car because, even if it was eventually reinstated at tribunal, as she lives in a remote rural area she would have been effectively housebound in the meantime.

 

In addition I am personally aware of instances of DWP blaming claimants when forms take lengthy periods to get through their own post handling procedures, forms regularly take in excess of 7 days to arrive at the claimant’s address, sometimes giving them no opportunity to return them in the time given, ‘brown envelope syndrome’ is widely recognised within the benefits community and I have yet to encounter a single claimant who, having gone through the process once, is not apprehensive at the very least about reassessment.

 

My views on the current assessment system are that it is overly complicated and pays too little attention to the real world - ESA in particular makes no distinction between someone who may, in time, be capable of working an hour or two once or twice a week and someone who will be ready to return to work full time within six months. They both receive the same amount of benefit (as does a similarly situated unemployed person who is not disabled) and are subject to the same conditionality even though the chances of the first person ever being in paid employment are vanishingly small compared with the second, and the additional costs to which both are put in relation to their disability mean that their standard of living has to be reduced compared to non-disabled benefit claimants.

 

The sanctions system is also responsible for so few in the support group volunteering for work related activity out of fear that a) it will be made compulsory once they have volunteered and b) their benefits will be reduced because wanting to work will be viewed as being fit for work. Even undertaking voluntary work in which the claimant is fully able to control whether, when and for how long they participate (such as my employment with CAB) is perceived as potentially risky, thus removing a potential pool of such volunteers.

 

The assessment process itself is deeply flawed. Despite the Committee’s 2018 report, there are still major issues surrounding home visits, even before the pandemic there were major delays in assessments being completed, claimants are only allowed to cancel one appointment before being referred back to DWP but assessment providers can cancel as many as they like, with or without notice, and audio or video recording assessments is pointless if assessors still make no effort to report accurately and DMs won’t listen to the recordings.

 

There is no benefit to me to being reassessed, on average, every 18 months. Since I will always meet the criteria for the highest rate of both ESA and PIP, there is no benefit to DWP in having me reassessed every 18 months. The only organisations gaining anything out of this situation are the assessment providers who are being paid to carry out totally unnecessary and health-damaging assessments, which is of course entirely unsurprising given that they are commercial companies and need to show a profit to their shareholders.

 

Suitability of Assessments

 

  1. The quality of assessments would be enormously improved if DWP and/or the assessment providers started from the expectation that the claimant is telling the truth rather than the assumption that they are, at best, exaggerating. No one is asking DWP to just take a claimant’s word for anything, but where a claimant is able to describe in detail issues which simply would not occur to anyone without that particular difficulty and where those issues are reasonable in connection with the condition or disability claimed, then accept it as more likely to be accurate than not.

              a) There has been absolutely no improvement that I am aware of since 2018. Specifically it                             was still astonishingly difficult (pre-pandemic) to get a home visit and many assessment                             reports are still bordering on fictional.

  1. I am not aware of international examples.
  2. Whilst the descriptors for PIP appear to assess function over a range of activities relevant to daily living, they are particularly poor at assessing fluctuating conditions or considering the cumulative impact of undertaking more than one activity in a day as would normally be expected. E.g. I am assessed on my ability to wash and bathe, for which I score 3 points as I need assistance to get in or out of the bath. I am then assessed on my ability to prepare and cook a simple meal, for which I need to use an aid or appliance, which scores 2 points. However this does not take into account that if I’ve had a bath, the amount of moving around required means that I will be too exhausted and in too much pain to do anything other than lie down for several hours, so whilst seen in isolation this activity scores only 2 points, when assessed as part of a sequence of activities it would score much more because I simply would not be able to do it at all.

An average daily routine might be get out of bed, wash and dress, prepare and eat                                           breakfast, use the toilet, prepare and eat lunch, prepare and eat dinner, undress and go to                             bed. Assessed in isolation as they currently are, a claimant might score 8 points, but when                             cumulative fatigue and pain are taken into account, that claimant could easily score 12                             points thus making the difference between standard and enhanced rates of benefit.

I would also question why someone at risk of either forgetting to take life-saving                                           medication or taking too much, in either case potentially fatal, should only score 1 point as               compared with someone not having a wash that day scoring 3 points, the latter surely being less damaging.

Finally, the descriptor for moving around is too restrictive. Anyone who either cannot use public transport because the bus stop is more than 20 metres from their home (I used to live in a flat, it was more than 20 metres just to reach the lift) or who can only mobilise 21 metres                             surely deserves to have access to a car.

  1. I can see the relevance of many of the ESA descriptors to a person’s ability to work, however they do not all use common sense - e.g. sitting and standing - a person who is unable to remain at a work station for more than an hour, if they do not meet any other criterion, will be found fit for work. When challenged, a DWP job coach was unable to name any legal or moral occupation in which someone could go and lie down after less than an hour’s work or work lying down. Additionally, they do not take into account the realities of the employment market, where any disability is a disadvantage and some disabilities are such that employment other than self-employment is so unlikely that it is almost cruel to make that person seek work, let alone sanction them for not getting a job. The current ESA system appears to make no distinction between someone who could perhaps work an hour or two once or twice a week and someone who could work full time, but there does need to be such a distinction.
  2. I have recent direct experience of two applications for AA on behalf of family members, in both cases with medical evidence submitted in support. Both claims were approved quickly, without face to face assessment.

              a) I had several face to face assessments for DLA, all carried out in my home, and all far                             less confrontational than the current system - in one case the doctor who visited made                                           some suggestions for future care which proved to be very valuable, it was almost as if he                             actually cared about the people he was assessing (sarcasm alert). I also had my DLA                                           renewed as a paper-based assessment, which was equally smooth by comparison with                                           the current system. One drawback with paper based assessments is that it depends upon                             a claimant having the               knowledge or assistance to complete the forms such that their                                           limitations are clear to the decision maker, which I feel a majority of claimants are not really               able to do, particularly for example when considering the importance of reliability in                                           completing activities and considering that in some cases the questions on the forms may                             not accurately reflect the descriptor being assessed.

  1. Clinicians are often the people least likely out of all healthcare staff to have any idea of what a particular patient can or cannot do on a daily basis. Far more suitable would be carers, community care staff e.g. health visitor, district nurse, CMAH team member, physios. One issue which has arisen multiple times in my own case is that my GP is asked if I can use public transport. As it’s not something I can imagine ever coming up during a consultation, how would she know unless she’d seen me on a bus?              In my view, the best role for clinicians is simply confirming a particular diagnosis and what, if any, treatment is being provided.
  2. So many appeals succeed because DWP and/or the assessment providers don’t bother to obtain additional evidence when there is a difference between the claimant’s view of their condition and the assessor’s view. For example, in one instance an assessor decided that I did not have any mental health condition despite me having provided detailed information regarding my diagnoses and treatment, and the DWP DM accepted her word without even reading my evidence (it ‘wasn’t available’ for some reason). Whilst I had no difficulty getting that overturned at MR, not all claimants have the experience or eloquence to be able to do that. Finally, DWP always allege that appeals succeed at tribunal because of new evidence, however that evidence is very often the claimant’s oral evidence, which would obviously been available from the start had either the DWP or the assessor asked the right questions and listened to and accurately recorded the answers.

              a) DWP must start listening to the claimant and, where there is a dispute between the                                           claimant and the assessor, obtaining additional evidence themselves.

  1. There may be an efficiency case for DWP for combining assessments but no disabled person to whom I have spoken is in favour of this, mostly because of distrust in the assessment system and the fear that entitlement to both benefits could be lost in one fell swoop. The whole idea of a combined assessment fills me with total horror even though I am reasonably sure I would retain my existing benefits. Further issues would be the length of any such assessment since the criteria for the benefits are so different - assessments are already lengthy and tiring, I don’t think I’d survive a joint assessment without significant after effects - and the added complication of trying to apply for two different benefits at the same time.
  2. I simply do not believe that DWP will properly take into account any views expressed by disabled people or the organisations representing them or even properly consult those parties. I also do not believe that the programme is intended in any way to benefit claimants, it is solely intended to save money for DWP. There have been too many past initiatives which looked good on paper - I was very much in favour of the introduction of ESA had it been employed as intended as a means of assisting claimants to undertake at least some work - but which turned out to be a means of subjecting claimants to such stress and conditionality that they either give up or die earlier than they would otherwise - for me to place any trust in DWP’s intentions.

              a) I have been asking for, at the very least, electronic versions of forms for 10 years. The                             DWP’s current work around is that all correspondence between us has to pass through at                             least 3 different offices, often depending on only one person with the necessary password                             to send or receive these emails (who was once not replaced for 6 months) which is entirely               unworkable but is all they can allegedly do, so yes, I would welcome being able to manage               my claims online.

              b) Benefits - no financial benefit in unnecessarily frequent reassessments, presumably no                             covert penalties for ‘passing’ too many claimants. Disadvantages - can’t think of any.                                           Increased trust, probably not, it’s not going to be that easy to undo more than a decade of                             distrust.

  1. It depends on the outcome of those assessments e.g. if the number of MR requests or appeals changes significantly. I know that a lot of claimants were particularly concerned about telephone assessments because of the inability to see the assessor or be seen and concerns about who else might be listening, and similarly concerned about remote hearings because the technology is often far from perfect. In my own experience, the sound was out of sync with the pictures which effectively made it impossible for me to participate. That said, provided claimants are given real choice (i.e. not required to jump through multiple hoops before being reluctantly granted their chosen method), I see no reason why telephone or remote assessments should not be offered in future.
  2. I have no knowledge of IIDB claims.
  3. There has to be specific funding for e.g. Citizen’s Advice for assistance with benefits claims, particularly if many will be required to be made online since disabled people are amongst those least likely to have the skills or the necessary technology to cope with online only access. Completing the forms for ESA or PIP can take up to 3, 2 hour sessions depending upon the complexity of the claimant’s condition and most organisations do not consider that to be efficient use of advisor’s time when they could deal with a dozen straightforward queries instead.

DWP also has to be prepared to give people extra time as a matter of course to access that help since even when I was working for them appointments often had to be scheduled for 6 or more weeks ahead. In fact, since assessments for benefits take so long anyway, why do the forms have to be returned so quickly?

  1. The only way to lessen the impact of benefit applications on claimant’s mental health is to restore trust in DWP such that claimants are no longer apprehensive about the outcome of their claim, to reduce the amount of time it takes for claims to be assessed so that the claimant is under stress for a shorter period and to get decisions right first time to the point where appeals become no less frequent than for other benefits.

 

Waits for assessments

  1. For new claimants, if the claimant’s GP says they are not fit for work, accept it and award benefit at the WRAG rate (which is no different to the rate for an unemployed claimant anyway), then ask the claimant if they believe they should be entitled to support group (providing a list of criteria and clear explanations) and if they say yes, those claimants only should be put forward for further assessment, thus vastly reducing the number of assessments needed. At the same time, suspend re-assessments for existing claimants in the support group, and endeavour to do all other reassessments on paper. Going forward, there has to either be a reduction in the number of assessments or an increase in capacity which would inevitably take staff from an already overstretched NHS, so maybe keep this model.

              a) It doesn’t. It is well established that living costs are substantially increased where there                             is a disabled person in the household so paying benefits at the same rate as would be                                           paid to an unemployed person effectively reduces that households standard of living,                                           which is incidentally also the case for paying WRAG benefits at the same rate. Perhaps the               introduction of assessment rates for other benefits would drive a reduction in waiting                                           times, but otherwise I can see no real benefit on balance since either such benefits would                             have to be repaid by the claimant if the claim failed or the taxpayer bears the burden.

Health assessments in the devolved administrations

  1. It is too early to make any deduction from the Scottish Governments system, but I predict Scotland may eventually get an influx of disabled residents.

Policy Development

  1. They don’t. I believe they admitted to reading less than 2% of submissions following a recent consultation.

 

 

October 2021