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    Devastated

    I made a claim for a pension I had with a previous employer. It has taken months for a response but today I have received a letter to say I do not meet the requirement that the member is expected to have less than 12 months to live. It goes on to say that if I did become ‘seriously ill’ they can reconsider my case.

    I have no words 😢
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

    #2
    How do we know how long we have?

    couldn't someone write a letter for you? GP, MND nurse?

    I asked about Stephen's insurance/pension and was told that if he dies before 12 months is up after claiming he'd get a tax rebate or something. Oh and theyd have to look up if his condition was on their list. Honestly am I going to be thinking about that and how can he have a tax rebate if hes not alive? No darling, no you cant live any longer or we get to lose out on tax. But then was mnd on the list?

    Nothing surprises me anymore.
    🤔
    when i can think of something profound i will update this.

    Comment


      #3
      Sounds absolutely crazy. There must be a way to appeal with medical evidence to the company or to the Pension Ombudsman. Do you receive PIP, and was that fast tracked based on an assumption about how long you have to live? That would be a good starting point.
      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

      Comment


        #4
        PeterPan yes, I was fast tracked for PIP and receive the mobility component too. They say my letter of diagnosis does not state I have less than 12 months to live. I have emailed asking if I can appeal and also asking if they have contacted my consultant.
        Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

        Comment


          #5
          Sorry to read this and the additional pressure and concern it adds.

          Depending on specific pension fund criteria, some work pension schemes are as follows:-

          Partial Incapacity - present role / alternative role is unreasonable.

          Total Incapacity - any role is unreasonable

          Death / Terminal illness likely (within defined time frame).

          I have some experience of navigating this with an unrelated incurable illness (quality of life, not risk to life), for partial incapacity.

          This was initiated by the employer's Doctor (global company, medical required for work, in-house medical department).
          It was signed off by my GP and illness related consultant and reviewed / approved by the employer's UK chief medical officer.

          I possibly don't (yet) meet my pension provider 'Total Incapacity' criteria with the addition of an MND diagnostic pathway.
          (Subject to next Neurologist consultation, it may be ironic if criteria skips straight to Terminal Illness, but my understanding would be the Consultant initiating DS1500 form.

          The grey area for me is having left company employment.
          Depending on the type of pension scheme and corporate structure, even the original employing department may have to be consulted, then a medical officer on behalf of the pension fund / pension trustees.

          For my own circumstances (partial incapacity, non-MND illness at the time), my Consultant for that illness was the medical practitioner liaising with the Company Doctor and HR - who then dealt with the Pension Trustees.

          I'd strongly recommend using a local disability advice centre / CAB and / or an appropriate Union if a retired member.

          The small print is the pension criteria levels and the Medical Specialist / Consultant signing off on it.

          Comment


            #6
            Ds1500 is used to fast track pip and that states 6 months. X
            Diagnosed May 2021 bulbar onset als.

            Comment


              #7
              Are you in a Trade Union ? Speaking as a Official it always seemed to help as there was legal advice and support. Penswise I found very helpful
              .

              Comment


                #8
                we have found that Life Insurance and pension providers do not recognise the DS1500.

                We have terminal illness cover on a life insurance policy which means expected to die within 12 months, this has to be verified by a consultant. The neurologist at the QE couldn't be bothered to respond to the request from the insurance provider, despite us asking him too. The local neurologist passed the query to the QE, the hospice consultant can only partially complete the form as some questions relate to before she was involved.

                So going round in circles. I shared the DS1500 early on thinking aha this is what they need but not recognised by them.

                The irony is that they will keep the claim open, presumably until he dies as they can't dispute a death certificate. Hope I can afford to keep up the instalments!!! They have already paid out on a critical illness policy, so not disputing the diagnosis.
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                Respiratory and blood gases still within normal range.

                No speech but sense of humour still fully intact.

                Comment


                  #9
                  I have just gone through all of this to sort out my medical retirement and 4 different pension schemes.
                  I saw that there were enhancements available if you were "seriously ill" which they specified as "likely to die within 12 months" but in all honesty I didn't think I could swing that. I am getting on for 2 years since symptoms and 1 year since clinical diagnosis, and I am still walking / talking / eating / driving, and I don't believe any medical opinion would put my prognosis that short (Yay!).
                  Luckily, I did get favourable terms as I (we) are classed as "not likely to ever become fit for any type of employment in the future" so I am happy with how my case worked out.
                  I checked my DS1500 - no sign of a date estimate on it.
                  Good luck with it all.
                  Hi, I'm Eddie.
                  Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                  Still walking and talking, and wondering what the future will bring.

                  Comment


                    #10
                    I did the same earlier this week and enquired about a previous employers pension I had only paid into it for 9 years. They are finding out from the trustees what evidence they require to make a decision but the company indicated the trustees would probably want a letter with a diagnosis and life expectancy duration!! How can a consultant write that when its impossible to say for each patient. I am 2 years almost since symptoms onset and only 2 weeks since diagnosis. Not got much hope will get anything as also mobile and driving and walking talking etc. With no dependants I don't know who the money will end up with! X

                    Comment


                      #11
                      I find this very concerning, I fully understand that Life Insurance and Critical Illness policies are based more usually around severity of illness and life expectancy prognosis. But ill health retirement is not assessed in how long you may or may not live: it is based around your ability to continue to perform work and, if you are unable to, then medical/ill health retirement is the option, with three tiers, Tier 1 being the highest level, that in effect you are not fit to do any sort of work. I was given Tier 1 ill health retirement from the job I was in, and also by my previous employer, whose pension scheme I had also been a member of when working there. Its your inability to work that is the key.
                      I would get some advice from CAB or via the MNDA, if you are still in a trade union, contact them, and also appeal to the trustees of the Scheme.

                      Comment


                        #12
                        Olivia H that really makes sense because like u said for pensions it shouldn't matter the life expectancy but about whether you are able to work in any capacity or not. it shouldn't be a battle because the diagnosis is stressful and upsetting enough. X

                        Comment


                          #13
                          In terms of life insurance I've given up and gone back to work part time - albeit from home so I can still be here to look after him. Doing hours only when carers are here. Not ideal, but we need some money to live!
                          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                          Respiratory and blood gases still within normal range.

                          No speech but sense of humour still fully intact.

                          Comment


                            #14
                            Hope I had exactly the same problem when I tried to claim my pension. I then sought legal advice from an employment solicitor. He said companies are very reluctant to pay out ,but there is a way. it's the finance Act 2004, Section 28, Paragraph 1. it's basically early retirement due to ill health.
                            I'm 40 years old and had my full pension after going down this route. Hope you manage to get it sorted out.

                            Comment


                              #15
                              Hope This is the section of the Finance Act referred to by Lythgoe81 above: (Schedule 28 Part 1)


                              Pension rules
                              Defined benefits and money purchase arrangements
                              Ill-health condition


                              1. For the purposes of this Part the ill-health condition is met if—
                              (a) the scheme administrator has received evidence from a registered medical practitioner that the member is (and will continue to be) incapable of carrying on the member’s occupation because of physical or mental impairment, and
                              (b) the member has in fact ceased to carry on the member’s occupation.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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