Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

PIP medical assessments and CAPITA - Meeting at the House of Lords

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 21, 2016.

  1. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,234
    Yogi, AndyPandy, MEMum and 5 others like this.
  2. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,234
    Can I just thank everyone who has been responding to this request by email to the MEA

    I have just been going through about 20 email replies and have sent a personal message to just about everyone so far

    I will report back after the House of Lords meeting - but this may be on Thursday rather than Wednesday

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Snow Leopard, Jan, AndyPandy and 3 others like this.
  3. snowathlete

    snowathlete

    Messages:
    3,245
    Likes:
    13,579
    UK
    ATOS do some of the PIPs assessments. Is it only Capita ones you're interested in?
     
  4. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,234
    The meeting at the House of Lords tomorrow is with representatives from CAPITA

    So I only want feedback on medical assessments with CAPITA for this meeting
     
    snowathlete and RogerBlack like this.
  5. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,234
    Following on from the request for information on PIP medical assessments with Capita, here are some brief notes on the FMG (Forward ME Group) meeting at the House of Lords on Tuesday 25th October to discuss problems relating to PIP (personal independence payments) with two representatives from Capita:
    • Dr Ian Gargan, Chief Medical Officer for Capita (UK and NI)
    • Ms Rebecca Papanicolas, Communications and Stakeholder Manager at Capita

    Dr Ian Gargan CV:

    https://www.materprivate.ie/consultants/dr.-ian-gargan/index.xml

    A more detailed report on the meeting will appear in the Forward ME Group (FMG) Minutes for the meeting

    Dr Gargan introduced himself by stating that he was new to the CMO post at Capita - he had only started work there in August 2016 - and is consequently on a "steep learning curve" at the moment

    He has a rather unusual medical CV in that he started medical work as a psychologist, then went into forensic psychology, then became a medical doctor and went into orthopaedic surgery before entering disability medicine at Capita

    He has a keen interest in MUS (medically unexplained syndromes) and regards ME/CFS as an MUS - rather like irritable bowel and fibromyalgia

    When asked about his position on the WHO (neurological) classification of ME/CFS, he did not appear to be in favour of classifying ME/CFS as a neurological disease

    More information on medically unexplained syndromes: http://www.healthcareconferencesuk.co.uk/userfiles/1/Simon_Heyland_and_Carolyn_Chew-Graham.pdf

    After introductions, we covered quite a lot of ground. The discussion was largely based on real life problems that people are having with PIP assessments - so thank you once again to everyone who sent me details prior to the meeting

    We were not able to deal with every case or issue but we did cover a number of common complaints

    Overall, Dr Gargan agreed that most of the examples of bad practice that were being raised should not be happening and went on to explain what should be happening instead in each case

    Health assessors:

    Capita does not employ many doctors to carry out DWP medical assessments for PIP, most of this work is now being done by nurses, OTs, physios etc

    CS note: This is a matter for considerable concern because in our experience nurses, OTs and physios are often in a position where they have received little or no education on ME/CFS or have an practical patient experience in ME/CFS. Some also have very inaccurate or unhelpful views about both the cause and management of ME/CFS

    The role of the health assessor:

    Dr Gargan stressed that the job of Capita health assessors is NOT to make subjective judgements about the cause of ME/CFS, or to pass unfavourable/unhelpful comments about any aspect of ME/CFS (which would be unethical)
    Equally, they are not there to dispute the need for things like a wheelchair (the subject of one specific question) or disability aids if the person says that these are required to assist with their care or mobility

    Their job is assess - based on formal and informal observations on the day along with the interview - how a person is functioning as a result of their ill health and/or disability and how this relates to the way in which eligibility for PIP is decided on the DWP point scoring system

    So the assessor should recording what the patient is saying about their health, disability and functional capabilities and not trying to assess or dispute the accuracy of what is being reported

    The assessor should then be producing a fair, accurate and objective assessment in the report for the DWP

    Decisions on eligibility for PIP:

    Capita are not there to make a decision on eligibility for PIP. The assessor's job is to produce a factually accurate report for the DWP decision maker - who then assesses all the evidence that has been obtained and makes a decision

    In reply to my question on the subject of further/supportive medical evidence (FME), Dr Gargan said that if it would be helpful to have FME from a health professional then Capita should request it and that Capita would pay the doctor for providing it. Patients should not be paying for these reports

    Other questions

    Relating to questions about the times of appointments, Dr Gargan confirmed that people can request to be seen at an assessment centre after 12 noon if this was going to be more helpful, especially where they are not functioning very well in the morning

    Training on ME/CFS

    There were several questions on how the medical assessors receive their training and education about ME/CFS at Capita

    Dr Gargan explained that Capita is currently training materials on a range of conditions, including ME/CFS, and that he would welcome input from the FMG
    Myself and Dr Paul Worthley (formerly
    at Burrswood Hospital in Kent) agreed to help with this and I will now be sending copies of the MEA purple book to start this process moving

    By the end of the meeting the two representatives from Capita were left in no doubt that many people with ME/CFS are having significant and unacceptable problems with their medical assessments for PIP at Capita

    And as I pointed out, there is something seriously wrong with an assessment system where a significant number of people with ME/CFS are being told they are not eligible for PIP but then go to appeal and win their case - sometimes achieving enhanced rates for care and/or mobility components of PIP

    We will continue to carefully monitor the situation at Capita

    And if you feel that something has gone wrong with your assessment, it is very important to contact Capita, preferably in writing, to inform them about what has happened and what action is going to be taken as a result


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    MEMum, Daisymay, Jan and 10 others like this.
  6. snowathlete

    snowathlete

    Messages:
    3,245
    Likes:
    13,579
    UK
    Thank you @charles shepherd and those from Forward ME Group for their work on this important set of issues.

    While it's interesting, and important, to know Dr Gargan's personal views on the classification of ME/CFS, Capita presumably does not have the luxury of choosing to regard ME/CFS as anything other than a neurological disorder in it's work for the DWP as the DWP have taken an official position that ME/CFS is a neurological disease, right? As Capita are contracted by the DWP that is surely the classification they must abide by.

    Will Forward ME Group be having a similar meeting with Atos at some point?

    My understanding is that Atos conduct PIP assessments in Scotland, North East England, Yorkshire and Humberside, North West England, South East England, South West England and London. Capita do assessments in Central England, Wales and Northern Ireland.
     
  7. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    God help us.
     
    Daisymay, Jan, slysaint and 1 other person like this.
  8. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,701
    Likes:
    13,227
    UK
    @charles shepherd

    I just want to say thank you for, not only the above report, but for all your hard, dedicated work on our behalf over the decades, especially as you have this miserable disease too. You are very much appreciated. We would be in a much worse position without you. Thank you for the battles you fight on our behalf.

    I have also noticed the time of day that you post, and am impressed that you work such long hours, no doubt to the detriment of your own health.

    I think I joined (and chaired MEA groups) even before you were the MEA medical advisor, when the Association had only just graduated from being run from ( forget her name.......... Pat .....?) someone's shed in their garden way back in the early mid-1980s.

    I have read the MUS charts you have posted above. What depressing and discouraging reading! I also find it absolutely extraordinary that these opinions are based on the belief that doctors have undertaken all 'adequate testing' in order to confirm the 'diagnosis'. It does seem to me quite delusional and irrational to maintain that they know all there is to know about medical science and that the limited testing provides all the answers that could possibly exist.

    It seems clear to me that medical students need to follow a course in medical history so they stop repeating the same old mistakes.

    Just as an aside, (and OT,) having spent some years studying the history of smallpox (an ancestor of mine was the first (known) vaccinator ......Benjamin Jesty..........and I've just completed the first 225-page draft of his story), I was amazed to discover that as recently as the 20th Century, some docs still believed that the colour red cured smallpox and pinned red blankets up in the sick patient's room. I class the MUS docs in the same intellectual category as the red-blanket proponents of 20th century.

    Thank you for fighting our corner.
     
    MEMum, Daisymay, PhoenixDown and 11 others like this.
  9. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,234
    Thanks

    It's an interesting question because, in theory, it is the level of functional impairment that is supposed to be what is being assessed for the DWP DM, and not the diagnostic label for a condition - although the classification of a condition is obviously going to have some influence on the decision making process……..

    I did point out when I put this question about WHO classification of ME/CFS to Dr G that the DoH and DWP both accept the WHO classification of ME/CFS as being neurological but he did not want to go any further than indicating that his preference was to describe it as an MUS. There were more important things to discuss and time was limited - so I did not pursue

    I suspect that while the DWP and DoH obviously take an official position on classification of ME/CFS, this may not apply to independent organisations like Capita who do work for these govt departments
     
    Purple, MEMum, Sasha and 3 others like this.
  10. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,054
    Likes:
    16,540
    UK
    Thank you @charles shepherd. This is all so depressing, but I'm so grateful to you for fighting our corner.

    I have just read and am utterly horrified by the document you link to on MUS. It is one of the most unscientific and insulting documents I've had the misfortune to read. Only read it if you're feeling strong.

    http://www.healthcareconferencesuk.co.uk/userfiles/1/Simon_Heyland_and_Carolyn_Chew-Graham.pdf

    If this is the guff the NHS is propagating, no wonder our GP's are so clueless. HELP!
     
    Countrygirl and worldbackwards like this.
  11. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    All you need to know right there.
     
    Daisymay likes this.
  12. snowathlete

    snowathlete

    Messages:
    3,245
    Likes:
    13,579
    UK
    I would think they are entitled to take whatever stance they want in terms of their organizations official and unofficial viewpoint. But that isn't the issue in my mind. I would be very surprised if a contractors opinion, if it conflicts with the DWP's position, was allowed to override the official position of the DWP when it comes to work these organizations do under contract from the DWP. It might be worth asking the DWP to confirm that.
     
    Countrygirl likes this.
  13. Yogi

    Yogi Senior Member

    Messages:
    1,022
    Likes:
    6,348
    1. I suggest everyone should refer to ME/CFS and the ICD-10 code of Neurological G93.3 in their PIP form or assessment. If there is a problem and Capita does not give the required PIP payment then this evidence should be used against them in the Tribunal.

    2. This should be raised with the DWP perhaps by parliamentary question so it is on record that their contractor Capita breaches the WHO ICD (which DWP and DOH accept) and therefore their contract.

    3. Ian Gargan should be pushed on this point. On what evidence does he ignore and disregard the WHO ICD of ME as neurological. He should not over-ride the WHO and he should persuade the WHO that he alone is correct and the esteemed WHO has got it all wrong. Failing that Gargan should be reported to the General Medical Council as well as to his employers Capita and the contract purchaser the DWP.
     
    Countrygirl and Chrisb like this.
  14. slysaint

    slysaint Senior Member

    Messages:
    2,013
    Likes:
    10,480
    W. Sussex UK
    Are you sure about that because this has not been my experience in my 'recent' ESA assessment.
     
    Countrygirl likes this.
  15. Yogi

    Yogi Senior Member

    Messages:
    1,022
    Likes:
    6,348
    Officially they should after Prof Hooper raised the matter with them via Countess of Mar and were forced to do so.

    http://www.meactionuk.org.uk/Freud-reply-to-Mar.pdf

    However they will definitely try to hoodwink unsuspecting claimants that it is psychiatric and you should pull yourself together and deny your benefit.

    That is called BENEFIT FRAUD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
     
    Daisymay and slysaint like this.
  16. slysaint

    slysaint Senior Member

    Messages:
    2,013
    Likes:
    10,480
    W. Sussex UK
    What is? Fraud by whom?:confused:
     
  17. Yogi

    Yogi Senior Member

    Messages:
    1,022
    Likes:
    6,348

    Fraud by the Department for work and Pensions and Crapita if they knowingly and falsely state that ME/CFS is psychiatric when it is not.

    The DWP claim that claimants engage in benefit fraud but that works both ways!
     
    Last edited: Oct 28, 2016
    Daisymay and trishrhymes like this.
  18. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,234
    MEMum likes this.
  19. JohnM

    JohnM

    Messages:
    98
    Likes:
    682
    West Yorkshire
    A very ambiguous reponse - would and should - in my opinion as often seems the case. Dr Gargan, though new to the post, will likely know that Capita can reclaim fees incurred in obtaining further medical evidence. (See the PIP Assessment Guide, Appendices, 5.1.1-15, p157-8)

    It may well be that the DWP and DoH officially accept the WHO classification of ME/CFS as being a neurological condition; in the case of the DWP, the Medical guidance for DLA and AA decision makers (adult cases): staff guide (Last updated: 13 January 2014) would suggest they do not.

    I have been unable to locate a corresponding document - 'an A to Z of medical conditions' - in relation to PIP, but this document is likely indicative of their thinking on CFS/ME in reality, and perhaps still used to inform the assessment process in relation to our disease, and by extension to Capita Health Assessors if presented as part of the training package(s) to which Dr Gargan refers?

    I have created and uploaded a *.pdf file, in which I have extracted the relevant information for our condition from the original document - (p210-4) - and an awful read on so many counts. The document links to NHS Choices - Chronic fatigue syndrome page. :(

    In my own case, and that of other people I knew going through the ESA application process at the time, it was the case that further medical evidence was not sought by ATOS. In light of the ambiguity of response from Dr Gagan, is this still the case with Capita, and is one of the many reasons that decisions are overturned on appeal?

    One of the other reasons that come to mind, based on my experiences, is the apparent inability of an Health Assessor "to produce a factually accurate report." That, and just think how well informed (and medically qualified to understand and assess medical evidence) the DWP Decision Maker is ... NOT!!! To think the DM is directed to the NHS Choices page(s) as above ... shudder!!!

    Lastly, just wanted to say thanks for your continued advocacy, and for updating us on your meeting with Capita so promptly. It is appreciated :D

    Any errors in my posting with links and like folks, do let me know and I will correct as soon as ..
     

    Attached Files:

    Artstu and AndyPR like this.
  20. slysaint

    slysaint Senior Member

    Messages:
    2,013
    Likes:
    10,480
    W. Sussex UK
    The DWP Training Guidelines on CFS continue: “At one end of the scale are the (uncommon) cases where there is a very clear history of the sudden onset of fatigue after a proven viral infection, such as Epstein Barr virus; at the other, cases strongly associated with current or pre-existing psychiatric disorder. In fact, most patients with CFS will also meet the criteria for a current psychiatric disorder
     

See more popular forum discussions.

Share This Page