Written evidence from Name and Address given but withheld (HAB0117)

 

To Whom It May Concern:

 

I thank the Petitions Team of the UK Government and Parliament for their email concerning the petition entitled: ‘End Reviews of PIP and ESA Awards for People with Lifelong Illnesses’ which I signed. Thanks also for this opportunity to provide the Work and Pensions Committee with various comments regarding ESA/PIP//UC assessments and reviews for claimants who are suffering from lifelong health conditions.

 

I am not an ESA or PIP or UC recipient. I am retired but have been closely involved over recent years with a number of claimants who have been in receipt of one or more of these benefits. I have been to the JobCentre many, many times—the rudeness I witnessed there was appalling; I have accompanied two claimants to their PIP assessments; I have also attended an ESA appeal hearing;  and I have seen Ken Loach’s film “I, Daniel Blake”.  I would like to give here some background and also some specific comments on each of the cases that I have been involved in. All names have been changed for confidentiality.

 

I have been involved with or helping the following individuals:

—two receive ESA; one receives UC; two receive PIP; one is awaiting a decision on PIP; one was refused PIP some time ago and gave up completely as she could not muster up the energy to try to fight on alone; one is awaiting a Mandatory Reconsideration of a scathing and cruel refusal of PIP; one receives support of which I do not have the full details, sorry; and, tragically, one claimant is dead.

 

 

General Considerations

There is probably nothing new here, just more of the same which the Committee members have all heard before, yet nothing changes. The first step must be that DWP agrees to acknowledge that chronic lifelong health conditions do exist. Entry into employment is, unfortunately, not a reality for everyone. At present, the agency seems to be doing everything possible to deter or to refuse the applicant and repeatedly push the individual in the direction of work. But for these cases this approach is not appropriate. Often their own consultants and/or GP has confirmed that the person will not be able to take on gainful employment and is not fit for work. Their health condition and health needs must be respected and acknowledged, and their long-term financial situation sorted out. Whole families are dependent on this support. The DWP has in its hands the duty of care for these individuals and for their dependents. It is their professional responsibility to get it right at the outset, once and for all—no more refusals which are then overturned at the MR stage or on Appeal. This absurdity costs the taxpayer an disproportionate sum of money. And let’s keep in mind that the awarding of PIP for example entitles the claimant to apply for other benefits and/or reductions: a Bus Pass, a Blue Badge, and a 50% refund on Road Tax.

The DWP must not keep taking the applicant back to Square One through reviews or repeated assessments with the incorrect assumption that their health has—all of a sudden?—improved or changed. Often it may have even deteriorated. But all too often there seems to be a concrete wall in place making sensible communication impossible.

The application processes for ESA, PIP, and UC are unbelievably clunky and hostile. They start from a bureaucratic standpoint of denial and from a culture of disbelief. Then follows the usual  ghastly to- and fro-ing of confusing and rudely-toned template letters based on ‘stick & paste’ paragraphs. The whole drawn-out process causes enormous anxiety and worry for the applicant who feels s/he is fighting an unfair and uphill battle against a force with which it is difficult to communicate reasonably. The DWP must work with, not against, the applicant. I have been astounded and appalled at the punitive and threatening tone of these DWP letters: they are surly, aggressive, verging on utter rudeness; they lack any professional tone that one would expect from a Government agency. Even advice on the phone at times is absurd: one call centre employee suggested that the claimant could get help with his UC50 form by going to his nearest Citizens Advice Bureau. But the claimant is a refugee with very limited English and the CAB does not have funding for an interpreter for an appointment with someone whose English is so limited.

 

Case 1

A was resettled in the UK in 2016. He has a chronic injury and disability resulting from a horrendous road accident over 16 years ago. In a coma, he was transferred from a small city hospital to the largest hospital in the capital in an attempt to save his life and his leg. He was hospitalised for 4 months. After discharge (in a wheelchair, he later progressed to crutches) he was issued a permanent National Disability Card. Such cards are issued only to individuals with a recognised permanent disability confirmed by clinicians and with no likelihood of any future improvement. Why are such Disability Cards seemingly ignored by DWP? He was assisted with his original ESA application, along with an interpreter. He has an assessment with an interpreter and after some time his regular payments commenced. These continued smoothly for some months but after about a year, his ESA payments were suddenly suspended. These were the only financial support this family had; they had no relatives and no friends in the UK, and were about to have a new baby. With help, he urgently requested a Mandatory Reconsideration but the weeks slipped by and the family was forced to apply for a local Crisis Grant. I also lent them money. The case went to Appeal. The interpreter was excellent and it was obvious that a mistake had clearly been made in suspending his ESA support.  He won his Appeal ‘in the courtroom’, i.e. he was told: ‘If you wait outside for a couple of minutes and we can give you the written decision…’ I was there—I’ll never forget it. When he presented the Court’s decision letter to the JobCentre (to have his ESA support reinstated asap), they almost tried to dismiss it as a fake letter and were in disbelief. They were also surly. His payments resumed quickly, with a back payment covering the period when the payments were interrupted. Crisis over but what an unnecessary, almighty mess. All this, including the stress and worry of having absolutely no income (for a family of four plus a newborn) should never have happened. His is clearly a lifelong condition—his orthopaedic consultant in the UK had already provided a statement confirming as much and that there was nothing he could suggest or do to alleviate the condition or mobility of his patient.

The interruption to his ESA payments was completely unnecessary and in the process wasted a huge amount of public money: a face to face assessment, an interpreter, correspondence, an appeal hearing with a medical doctor and another interpreter, plus local authority and personal travel costs… ludicrous. Utterly ridiculous in a case where, sadly, nothing is going to change in the future for this individual’s prognosis.

A also applied for and has been in receipt of PIP. This has also been chaotic: stopping and starting over and over again. Suddenly in mid2020 his PIP stopped. We phoned, ‘Oh, that’s strange, that shouldn’t have happened, I’ll see if I can get it re-started..’ Regular PIP payments started up again, but not long after, a new letter requesting a new application: PIP/1 followed by PIP/2. But DWP had the complete information from his original application in 2016/2017. His lifelong condition has not changed. There has been no need to see his consultant again as nothing has changed or will change. Was the letter generated by the fact that, after 5 years in the UK with Refugee status, the family had just been granted ILR? But this change in his immigration status should not force him back to Square One regarding his PIP. 

 

Case 2

B was also resettled to the UK in 2016. He was the vulnerable individual selected by UNHCR for resettlement under the Government’s scheme. Here we go round the proverbial mulberry bush again. B has a debilitating, well-documented lifelong condition that is well-known in the Middle East and across the whole Mediterranean area. In the UK most people say, ‘Never heard of that, what is it?’ He has been ill for over 15 years. His mother suffers the same condition. Following his ESA application, at first he experienced a very unpleasant and concerning face to face assessment where the assessor clearly did not have a grasp of his condition and the various symptoms and prognosis, plus he did not trust the replies being provided by the interpreter. He could not challenge the interpreter as his English was near zero at the time but the replies in English to his answers in Arabic seemed all too short and simplistic; he suspected that they did not relay exactly what he was trying to tell the assessor. His senior consultant provided a detailed statement for the DWP about the illness and B’s condition. ESA payments commenced but hiccupped later when the family’s 5yr Refugee status ended and they applied for ILR. Surely the DWP needs to see the Big Picture? Having been the lucky ones to be resettled in the UK, they were hardly going to up sticks and suddenly return to the Middle East. Their residence in the UK would continue. They were granted ILR in mid2021.

B also applied for and was awarded PIP. But there has been persistent correspondence and following the granting of ILR, B has had to complete a PIP review. Yet nothing in his medical/physical condition has changed. His prognosis is one of symptom control and pain control. His consultant cannot hope for a miracle or sudden improvement and has confirmed as much in writing for the DWP. B’s medications may have been revised over the years in the UK but only in attempts to make life more bearable and less painful. Sadly, he suffers from an excruciatingly painful lifelong condition that is not suddenly going to improve or go away.

 

Case 3

C is Syrian. He too was selected to be resettled in Scotland and arrived with his wife and 3 children in late 2019. Soon after arrival he was assisted by JobCentre and Council staff to apply for UC. Not ESA because DWP is weaning people away from ESA etc.? Let’s just pause for a moment to note again that he was the vulnerable member of the family (everyone else is fine and in good health) and also that UC considers a maximum of two children…

C suffered from debilitating headaches and migraines for years but his health then worsened after he had to undergo an emergency gastrectomy (Billroth-I procedure) in 2017.  His prognosis now is migraines/headaches, plus nausea and dizziness and feeling sick due to the tiny remaining portion of a stomach. His recent assessment was by telephone. The call lasted one and a half hours. For someone in his condition and with his lack of stamina, this was utterly exhausting. Yet the PIP decision, based on the Assessor’s report, was utterly scathing (and also full of lies that I will call ‘errors’) awarding him a total of 0 points. As permitted, he immediately requested a copy of the assessor’s report—but to date (over two months) no report has been sent to him. He has a right to know what the assessor wrote in the assessment report.

 

Note: Any assessor’s report should be sent to the applicant immediately it is available in the system or passed on to the decision-maker since the claimant has only one month in which to request a Mandatory Reconsideration of the decision.

 

Case 4

D is a young man originally from an African country who is permanently disabled with learning disabilities and episodic seizures which he has experienced since the age of 5-6. His seizures started following a serious bout of malaria during which he was hospitalised and fell into a coma. He was then given either incorrect or counterfeit medication—the family will never know which. Fortunately, such disasters seldom happen in the UK.

D came to the UK as a teenager and, since his earliest medical appointments here, his specialist have managed to control his seizures with medication(s) but he also suffers from severe learning disabilities. He has regular (annual) review appointments with his consultant/specialist team but, sadly, they confirm there is no likelihood of his long-term prognosis improving or changing. Despite this, his parent has to undergo the stress and chaos (and missed work hours) of repeated reviews every 20 to 30 months—time and time again. What a waste of the clinicians’ time as they confirm again and again that, tragically, things are not going to change for this lad—he will be stuck with his current clinical and neurological condition for the rest of his life. His has severe learning disabilities. Not ADHD or dyslexia or dyspraxia but severe learning disabilities caused, they believe, by the medication administered many years ago in Africa.

Why force frequent unnecessary assessments onto this young lad and his parent? Nothing has changed, nothing is different, nothing will change. Surely this is yet another case that should be left in peace for years—perhaps 8-10 years before the next review. And then... please engage with the clinicians as they will be a position to confirm his current condition and medications.

 

Case 5

E was also selected for resettlement in the UK. He applied for UC and for PIP. At the PIP assessment the assessor was both aggressive and defensive, and seemed even unprepared about the case. She merely continued on down a list of questions to get through—some of which were idiotic and quite unrelated to the individual before her. The questioning was relentless; even the interpreter started to become irritated. Following an earlier referral to his senior orthopaedic consultant, the applicant had received (and had already sent to the DWP) a detailed statement confirming the prognosis resulting from the serious injury he had sustained years earlier. Again, no further surgery was recommended and no specific treatment was suggested for the claimant. His presented a chronic disabling injury where pain control was the sole aim. So why must he repeatedly undergo a review and/or complete a new PIP application? Nothing is going to improve or change in his physical condition—he has a serious injury that helped him be selected by UNHCR for resettlement in the UK in the first place. Surely this must be respected and fully taken into account. His case should again be ‘left in peace’ for a decade as a lifelong case before another review.

 

Case 6

F completed the application forms for PIP and provided her supporting medical documents. But she was summarily refused. Score 0 points. The detailed description of her condition (symptoms can be different each day—it’s well-known that it is a condition that is very difficult to describe categorically) and the limitations it puts on her daily life were abruptly brushed aside. She told me that her PIP assessment and the subsequent refusal were soul-destroying. She was crushed. She was ill and now no one at DWP/PIP would accept the affect that her condition had on her daily life and circumstances. Clinicians attest that specific symptoms of ME/CFS are often very difficult to pinpoint; symptoms vary from one case to another. Her GP knows her well and had diagnosed ME but the assessor brushed this aside. On what grounds? With what authority? Again and again, I have found it most irritating that an assessor (who is often not a qualified doctor or a nurse even) will feel authorised to reach a totally different opinion from that of the doctor or consultant who has seen the individual, has been treating the individual, and has provided the DWP with official written confirmation of his/her professional clinical opinion.

 

Note: All too often the clinical statements provided are not being considered. They probably just sit there in the file, without being taken into account as much they should be. These statements are the backbone of an application. They are the medical opinion of usually a GP or even a senior consultant about a patient that they have seen in their consultation room. All too often, these precious statements are filed away by the DWP, and no one bothers to contact the clinician…

 

Case 7

G’s case is tragic. She had been imprisoned and tortured in her homeland. She claimed asylum on arrival in the UK and was hospitalised immediately for urgent treatment. Some months later, she was detained and even moved urgently from Yarl’s Wood IRC to Bedford Hospital for treatment. At last, years later, she was granted Refugee status. Her DWP profile—like all these—should have been marked in big red letters LIFELONG/CHRONIC. Instead of sorting out her financial support once and for all asap after being granted Refugee status and taking her drastic physical health into consideration, the DWP placed her in the WRAG/Work Related Activities Group. Ludicrous! G’s senior consultant (he had known her for years and treated her on each hospitalisation) provided up-to-date reports, again and again; another clinician (who wrote an 11-page MLR to the HomeOffice for her asylum application) did likewise, updating his statements as her condition deteriorated and her lung capacity decreased drastically. G could hardly breathe. She could hardly walk. She could not carry her shopping. She could only manage stairs about 3-4 at a time, and then stopped to rest, struggling to breathe. Yet, suddenly, about 18 months after being granted Refugee status, G was suddenly sanctioned and her support was drastically cut. She could not understand the DWP’s letters and got little support or help from the JobCentre staff; she was a very intelligent adult but so traumatised that she was unable to study or retain much English. Her friend (a single mother of two who worked full time in a care home the other side of London) tried to help when she had the time... But clearly some DWP requirement or appointment or warning had been missed and her support was suddenly halved. G’s health paid the price. She was unable to get to appointments: at the JobCentre, with the GP or at the hospital—they were too far for her to walk and she could no longer afford any taxis. One evening, gasping for breath, she was rushed to hospital by ambulance: the usual ward, she had been in and out for 6 years, everyone knew her. But this time there was nothing they could do. G died 16 hours later. The drastic sanctioning of her benefits dumped G  into a level of poverty where she could no longer look after herself, could not buy sufficient healthy food or manage to get to her critical appointments. She should never have been sanctioned.

 

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SUMMARY

 

Each of the above lifelong cases was mishandled in some way. Some at the assessment stage, some earlier on, some later. These mistakes should not be happening. People’s lives and the lives of their families (often including young children) depend on the support from the DWP. Feeling constantly under threat or feeling viewed with contempt causes fear and dread which, in turn, can trigger further or new problems with their mental health.

 

May I suggest the following :

 

a) That cases be ‘linked’ more since so much of the application process and so many of the supporting documents is duplicated with each application. DWP files must be clogged with replica documents. Printing copy after copy of the same medical document is a waste of paper and an unnecessary expense for the applicant. An individual claiming ESA or UC and PIP is one and the same person. Any medical report about this person, once it is in the system, should be viewed and considered for each application.

 

b) When a senior clinician has confirmed that s/he does not expect any significant change in the prognosis of the patient over time, the DWP must listen and lifelong cases such as these should be reviewed only every 8 to 10 years. At the 10-year mark, the DWP should approach a GP, or consultant or senior health professional who knows the patient. They can request an update, but should keep in mind that the consultant may not have seen the patient for some time (years even) as the condition is deemed chronic and already, years ago, there was nothing they could suggest or recommend as treatment. The money saved by not reviewing for 8-10 years could go towards any costs incurred to contact the GP/clinician/consultant…

 

c) Frequent reviews or assessments waste a huge amount of money in the ‘public purse’. Even a first assessment is pointless if the consultant has already stated in writing that his/her patient has a lifelong condition and is deemed unfit for work An assessor is far too ‘distant’ and only sees paperwork or meets a claimant on the day while the GP or consultant will have known the case for months or years. However, let’s not insist on more specialist appointments for updates when no change is expected. Senior clinicians do not have time to waste on unnecessary appointments to reconfirm what the DWP already knows and has in writing. Please refer to and accept the written opinion of a GP or consultant—it will surpass the decision of an assessor who is seeing the claimant for the first time. Alternatively, the GP or specialist can be contacted by phone or email.

Indeed why ask for GP/consultant contact details on forms if then no one attempts to reach them? The cover page of the UC50 reads: “We do not always contact your medical professionals so this information [supporting medical evidence] is important and should let us know how your disability, illness or health condition affect how you can do things on a daily basis.” The DWP should agree to spend a small amount of time and money on calling or emailing a consultant in order to obtain a brief reconfirmation of the claimant’s prognosis or the pertinent up-to date information. It would save money in the long run. Contacting a GP or consultant is crucial for the fair decision of an application.

 

d) Please do not make applications, assessments or other correspondence ‘online only’. I am tech-savvy but many claimants are not or do not have excellent English. It is also discriminatory to coerce people into doing everything online. Paper forms must remain available. Most people would be forced to complete an application on a mobile phone as not everyone has access to the internet or a laptop or lives near the local library, where computers may be available. It is essential that people retain the option of a paper form to peruse calmly and carefully, and fill out over time often with the help of a friend or relative.

 

e) Some of the claimants I know are vulnerable Syrian refugees. This is not an insignificant detail. These claimants were very carefully selected by the UNHCR on the basis of a chronic health condition or lifelong disability. After arrival in the UK and their first JobCentre appointments, this point seems to be lost as they answer question after question and fill out form after form.  They should have been assessed shortly after arrival in the UK, the financial support for the family sorted out and then left in peace to settle into their new lives. The DWP could easily establish a specific sub-category in the system which identifies these individuals with long-term conditions. Yes, full details are necessary at the start of the process but this must include taking on board that theirs is not a transitory condition and they are not going to change radically in a year or two. Also some countries issue permanent disability cards (or a national disability report)—these must be respected and taken into account. 

 

The ongoing Covid19 pandemic precludes the possibility of numerous referrals to a consultant taking place in a short timeframe. Most assessments are now being carried out by phone. But often, a senior clinician has already provided a detailed written opinion stating  that the patient’s condition is not expected to change in the near future. None of the experts expect these patients to suddenly improve, get up and walk away, and consider full-time employment. Short-term awards of financial support for those with a lifelong condition is rather absurd. Their prognosis is not expected to change. The anxiety, stress and uncertainty that repeated reviews or applications can cause, plus the toll on their mental health (as this is financial support for a whole family…) must not be disregarded.

 

Believe me, the resettled Syrian refugees I know would all prefer to be physically fit and able to work full time and support their families but, sadly, this is not the case. None of them will be able to do so—no matter how many years go by. None of them chose their fate. Each one merely wishes that the DWP would acknowledge this fact, once and for all, and let them live their new lives in the UK in dignity and peace.

 

Let’s also keep in mind that the claimant’s partner should not always be quickly targeted for employment, in lieu of the disabled or unwell spouse. Sometimes there is a baby in the family or very young children; other times the children are older but the individual with the lifelong condition or disability is not physically able to or fit enough to step in to take on the domestic (and other) duties that the other spouse has been doing all along.

 

Are they all going to continue their new lives in the UK with years of endless reviews and repeated assessments? This is both unfair and foolish as, apart from the anxiety, stress and worry, due to their still limited English (of the three Syrians) for this type of correspondence, they are unable to take this on alone. I am retired and happy to help now but in a decade’s time I will be over 80 and who knows whether I will still be driving by 2032! The young man with controlled seizures and learning disabilities is helped for how by his parent; in the distant future will one of his siblings (one is a doctor, the other is an academic) be forced to find the time to take on this role? Seems altogether absurd.

 

Thank you for seriously considering the above points regarding the those on ESA/UC/PIP financial support who have already-recognised lifelong conditions.

 

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February 2022