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Severe ME Sufferer faces ban on volunteering

Discussion in 'General ME/CFS News' started by Pike, Nov 15, 2017.

  1. Pike

    Pike

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    I am 49 and have struggled since 2011 to stay in my teaching job (in the UK) due to a bout of swine flu led to me developing ME. A major relapse in May 2016 led to me taking long term sick leave and after 8 months (January 2017) was dismissed on the grounds of ill-health as I was too ill to return to work. In August this year I was awarded enhanced ill-health benefits by the Teacher Pension Scheme.
    The offer of enhanced ill-benefits (meaning I was too ill to perform any kind of paid employment upto my pension age of 60) contained the proviso:

    "You should inform us immediately in writing before any type of employment is undertaken, whether paid or voluntary, as we will need to review your continued entitlement to ill-health benefits from the Teacher Pension Scheme."

    I rang up Teacher Pensions about the issue of voluntary 'work' and was told that I can attend meetings of my local ME Support Group but not allowed to take part in organising any activities. Even an activity such as helping out with a cake stall to raise funds would need their permission as it would be considered a 'borderline' issue.

    In effect, I feel discriminated against as I cannot do any kind of volunteering as it would jeopardise my pension. I have spoken to various medical professionals and, friends and my ME Support Group and they all feel appalled at this restriction upon my personal freedom. As one friend said ,"Are you expected to sit and watch tv for the rest of your life?"

    I would like to do more to help my local ME support group but am unable to do so due to the restriction put on me by the Teacher Pensions Scheme.

    I contacted the Equality Advisory Service and the Pension Advisory Service and their advice amounted to suggesting I write a letter of complaint to Teacher Pensions. I have not made a complaint to them about this issue as I am afraid it might lead to them deciding to review my pension award and the loss of my main source of income when I have a family to support.

    My local ME Support Group's view is expressed in the following motion. It sums up better than I can how I feel about this issue:

    ''KCIMESG is appalled that people who have ME are forced to stop volunteering if they retire early from their jobs due to ill health, and threatened with unbearable economic consequences if they choose to continue volunteering. There is a significant difference between working full-time and overtime, and volunteering a few hours a month for a small local organisation. Volunteering adds purpose and value to the lives both of volunteers, and the people and organisations who benefit from the work of volunteers.

    KCIMESG urges employers and pension funds to:
    recognise the difference between full-time work and volunteering for a few hours a month,
    Recognise the impact of volunteering on the lives of volunteers and the people and organisations who are helped by their volunteering,
    Allow people who take early retirement due to ill health to volunteer, and
    Guarantee that people who volunteer after taking early retirement will not be punished or threatened with punishment.''

    Can I do anything about this restriction upon my volunteering issued by the Teacher Pension Scheme?

    Thank you for reading my story.
     
    justy, Molly98, pattismith and 7 others like this.
  2. alkt

    alkt Senior Member

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    you would have to deal with a pensions and disability rights lawyer to truly understand the potential risk to your income but I think a sensible judge would rule it unfair and unenforceable . you probably would do badly from all the added stress . of course in the long term being denied the right to feel useful may also have unforeseen and deleterious effects on your health. I wish you the best regardless of your final decision.
     
  3. Orla

    Orla Senior Member

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    This is terrible, and bonkers.
     
    justy, ladycatlover and SueJohnPat like this.
  4. SueJohnPat

    SueJohnPat Sue

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    Medford NJ
    This is ridiculous. I would not limit my life. . I agree I would get legal representation. I was able to play 9 holes of golf last year but in no way I could be relied on to work effectively/ safely as a pharmacist.
     
  5. TrixieStix

    TrixieStix Senior Member

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    @Pike Here in the US volunteering can put your disability benefits at risk. You have to report any volunteering you do and they take it into account in determining if you can work or not. Because of this I have been afraid to volunteer for anything, even for just a few hours here and there.
     
    Orla, RogerBlack and ladycatlover like this.
  6. TakMak

    TakMak Coughs and sneezles spread diseasels

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    Cumbria, UK
    I don't think you should be too worried about it. The TP service is not going find out if you volunteer for the odd hour or two a week unless they follow you 24/7 which they are not. It's one of those legal things that they feel they have to say.

    I have several friends who took early retirement from the teaching profession and they were told they could work several days a month before it had any impact on their pension.

    Generally it must be expected that the cost of any investigation will be covered by the amount recovered. Given that any surveillance costs a great deal of money it is unlikely that the TP service will be checking on you.
     
    Last edited: Nov 16, 2017
  7. NelliePledge

    NelliePledge plodder

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    But @Pike has just been told something different and we know everything is being squeezed these days unfortunately the sensible approach of a previous era seems to be in the process of being abandoned in this time of austerity.
     
    ladycatlover, SueJohnPat and alkt like this.
  8. TakMak

    TakMak Coughs and sneezles spread diseasels

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    Cumbria, UK
    This is sadly so true. But my point was that you can probably ignore it and do what you feel is the right thing to do and HOPE that they won't find out or penalise you if they do. And given the various cut backs to the teacher's pension services I don't think they will find out unless one tells them. Or you can make a stand, with all the stress that that entails, and try to make the supertanker of bureaucratic intransigence change directions and listen to reason. For me personally, I haven't got the energy to fight that battle.

    That said @Pike may well be a member of a union. The NEU may well fight for you - but this does depend on how good your local rep is.
     
    ladycatlover and alkt like this.
  9. alkt

    alkt Senior Member

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    tak mak you have a wonderful way with words the supertanker of beaurocratic intransigence is so accurate.
     
    TakMak and ladycatlover like this.
  10. Pike

    Pike

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    Dear Friends,
    thank you for your kind and thoughtful comments. I have contacted the Disability Law Service, Equality Advisory Service, Pension Advisory Service, Disability Rights UK and my union the NEU and feel like I am going round in circles and going nowhere fast. Anyway, all I can do is soldier on and take it up with my local MPs.
     

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