Disability benefit decisions continue to use unlawful criteria

It is almost unbelievable, but it seems to be true. The people running the government department responsible for disability welfare benefits appear to have confirmed that they are either stupid, irresponsible, incapable, or all three.

As if all the mess with disability benefit claims, notably Personal Independence Payment (PIP), has not been enough – it is getting worse. Welfare campaigners Benefits and Work says the UK’s Department for Work and Pensions is:

  • advising claimants who were refused PIP before November 28 2016 to consider claiming again if they experience overwhelming psychological distress in relation to planning and following journeys, BUT
  • admits that it will turn them down again and that its decision will be based on criteria that (have) already been declared unlawful.

assessmentsOn its website, Benefits and Works’ Steve Donnison continues:

The DWP have also admitted that they are still making unlawful decisions on new claims and refusing PIP mobility to people who are entitled to it.

Their excuse is that they have not yet had the time to update guidance to health professionals and decision makers in relation to PIP mobility and psychological distress.

This follows the DWP’s decision in January to drop their appeal against (the court ruling), in which a judge held that changes to PIP mobility law made by the DWP were unlawful.

Updated guidance is expected to be available in the summer.

The DWP will then begin going through 1.6 million PIP claims, looking for all the wrong decisions they have made, and are still making, and put them right . . . sometimes we are genuinely just lost for words.

New: ‘Drive-by’ PIP assessments

I could not agree more, but it seems that the much renowned PIP claims assessors, contracted to the DWP, have come up with another wheeze. Here is Donnison again:

It’s too soon to say how widespread the issue is.

But there are a worrying number of reports, from Benefits and Work members and elsewhere, of claimants losing their benefits because a PIP assessor claims they were not at home when the assessor called.

In each case the assessor is able to describe the appearance of the house, such as the colour of doors and windowsills, and this is taken as sufficient evidence that the assessor called.

In one case The Independent newspaper contacted Capita and it was suddenly decided that the assessor had indeed called, but at the wrong time. So, another assessment was arranged.

In two cases involving Benefits and Work members CCTV evidence appears to have supported the claimants’ assertion that no-one had come knocking at the door.

These may be isolated incidents based on genuine misunderstandings and mix-ups about times or addresses. Or they may be evidence of something more disturbing: assessors under time pressure doing a drive-by of a claimant’s home and then claiming to have called.

We don’t, as yet, know the accuracy of this ‘drive-by’ allegation but it would come as no surprise to me if it is proved to true.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Russian Physician’s Guide to HSCT in Moscow

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There’s good news for anyone with multiple sclerosis who is considering undergoing HSCT, especially if that involves being treated in Russia.

And that’s because Denis Fedorenko, MD, who is in charge of the stem cell transplant program for MS patients, has put together a comprehensive guide to the whole procedure at the A.A. Maximov Department of Hematology and Cellular Therapy of the Pirogov National Medical Surgical Center, in Moscow.

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Dr. Denis Fedorenko.

Autologous Hematopoietic Stem Cell Transplantation (AHSCT) for Autoimmune Diseases (AID) includes explanation of the general procedure, as well as detailed explanations of individual parts of the process. It also has a section devoted to the experienRussian Physician’s Guide to HSCT in Moscowce of the Russian team.

Other sections detail such topics as the Inclusion Criteria, Exclusion Criteria, Pre-Transplant Examination, and steps of the AHSCT treatment.

Here is one excerpt – the Inclusion Criteria:

Systemic autoimmune diseases

o Diagnosed multiple sclerosis (all variants) with EDSS score between 1.5 and 6.5, documented progression/relapses over the previous year, with or without gadolinium-enhancing lesions.

o Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) with or without paraprotein

o Severe systemic vasculitis

o Systemic lupus erythematosus

o Systemic sclerosis

o Crohn’s disease

o Other severe systemic autoimmune conditions, including  connective tissue diseases

Age 16 – 70

Adequate organ function 

o Cardiac LV Ejection Fraction >45% o Total Lung capacity > 60%

o Pulmonary artery pressure < 45 mmHg

o DLCO/VA>50%

• Absence of severe chronic infections

• Negative serology HBV, HCV, HIV

• Absence of mental and cognitive deficits and ability to provide informed consent

• Absence of gross cognitive disturbances 

• Absence of severe concomitant diseases

Three months ago, I visited the Maximov HSCT clinic to undergo tests to see if I could have the treatment. I saw the facilities and met and talked with Dr. Fedorenko, administrator Anastnasia Panchenko, other members of the team as well as patients.

My tests turned out to mean that HSCT was not suitable for me because of another health condition, But I have no hesitation in saying that, had it been possible, it is the treatment I would have chosen.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Free HSCT in the UK, here’s the NHS criteria

Since my story on Sunday about James Coates, who has Secondary Progressive MS, having HSCT free of charge on the UK’s National Health Service (NHS), I have been inundated with enquiries.

Most have been concerned about whether they can qualify for treatment and, so, today I am going to set out the latest criteria that I can find but must point out that the requirements may have been modified since this was produced by the London MS-AHSCT Collaborative Group.

nhs-logoIt must be noted that to be considered for this treatment, a patient must be living in the UK with MS that must be ‘active’. The group has also stressed that this as an exceptional therapy for some people with MS, rather than a standard treatment; neither the National Institute for Health and Care Excellence (NICE) nor NHS England have given the go-ahead for this therapy to be used routinely to treat any form of MS.

nice-logoThis is the Patient Eligibility Criteria Adopted by the London MS-AHSCT Collaborative Group.
The eligibility criteria are overall aimed at selecting patients who have failed approved treatments of high efficacy or have none available to them and have recently presented evidence of inflammatory CNS disease activity; and who could undergo AHSCT with an acceptable estimated level of risk of adverse events. Justification for each of criteria is supported by evidence from AHSCT trials and observational studies.

Referral criteria:

  • Diagnosis of MS made by a neurologist
  • Able to walk, needing at most bilateral assistance to walk 20m without resting
  • In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
  • New MRI activity within last 12 months

Inclusion criteria: 

  • Age 18 to 65 years
  • Disease duration ≤15 years from diagnosis of MS
  • Diagnosis of MS according to McDonald’s criteria
  • For PPMS, CSF OCB+
  • For RMS, failed at least one licensed disease modifying drug of high efficacy (‘Category 2’ as defined by Scolding N, Barnes D, Cader S, et al. Pract Neurol 2015;15:273–279; currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy (as evident from relapse, MRI activity as defined below at Point 7, or EDSS increase) after being on DMT for at least 6 months
  • EDSS score 0-6.5
  • Inflammatory active MS as defined by ≥1 Gd+ (>3mm) lesion (off steroids for one month) or ≥2 new T2 lesions in MRI within last 12 months
  • Approved by the MDT

Exclusion criteria:

  • Eligible for an ethically approved clinical trial where AHSCT is offered as one of the treatment arms
  • Unable to adequately understand risk and benefits of AHSCT and give written informed consent
  • Prior treatment with total lymphoid irradiation and autologous or allogeneic hematopoietic stem cell transplantation London MS-AHSCT Collaborative Group – Patient Eligibility Criteria Final V.3. – 8/12/2015
  • Contraindication to MRI including but not limited to metal implants or fragments, history of claustrophobia or the inability of the subject to lie still on their back
  • Poorly controlled depression or recent suicidal attempt
  • Presence of any active or chronic infection
  • Unable to walk 20mt with or without support, or wheelchair dependent
  • Any significant organ dysfunction or co-morbidity that the Investigators consider would put the subject at unacceptable risk

And they are the criteria in their entirety to the best of my knowledge and belief.

 

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