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Ill health occupational retirement pensions

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          Ill health occupational
          retirement pensions
          What happens to people with M.E./CFS when their condition deteriorates to such a level that
          they cannot continue in a job which carries an occupational pension? Catherine Stillman-Lowe,
          Action for M.E. member and freelance health writer, found out.

          Many readers told us they faced a            Your experiences                               Diane, a former teacher, found the
          tough journey on the road to claiming                                                    occupational health team unhelpful.
          an ill health retirement pension. This       Madeleine’s story shows the need to be      She says: “I went to them during a
          article describes some readers’              persistent and to obtain trade union        month off work (March 2003) and was
          experiences, and the advice they’d give      backing and expert medical opinion, in      told I would not be able to get ill health
          to others. Following that, The Pensions      order to be successful. She fell ill in     retirement as a result of my M.E. I
          Advisory Service (TPAS) and Pauline          2001, and eventually gave up the            hadn’t asked for retirement so was
          Taylor, Action for M.E.’s Welfare Rights     struggle to work as a university middle     bemused – but later found in my file a
          Adviser, provide expert guidance, and        manager in July 2002. “I was told           letter from the headteacher asking
          there is a brief description of the rights   about ill health retirement and had a       about it on my behalf!
          of disabled people at work to                lot of advice on applying for it from the      “They contacted the hospital I had
          ‘reasonable adjustments.’ Key contacts       occupational health department and          attended for CBT and later wrote to me
          and useful resources are listed on p 21.     university doctor. They told me that I      to say I had no hope, as I hadn’t
             On a related matter, Action for M.E.’s    would not be likely to get it before        completed a CBT course. The reason I
          policy statement on the Occupational         being ill for two years. After September    hadn’t completed it was that the
          Health guidelines issued by NHS Plus in      2003, when I was still unable to work       practitioner had already decided I was
          October, may be found on p 4.                and in receipt of only Incapacity           putting into practice all the things she
                                                       Benefit, I applied to the Universities       would have taught me. Also we felt it
                                                       Superannuation Scheme (USS) for an ill      was extra stress while I was working
                                                       health pension (at the age of 45).          full time.
                                                          “The application was refused so I           “I then contacted the CBT team in
                                                       approached my union, the Association        order to complete the course and was
                                                       of University Teachers (now the             sent to a consultant clinical psychologist
                                                       University and College Union). With         who recommended three months off
                                                       their support and input from the            work in order to work through the CBT
                                                       Assistant Secretary General I put in an     issues. I went back to work at the end,
                                                       appeal. In February 2004 and with           and she wrote a note to my GP (who
                                                       enormous luck I was referred to a           had been initially unsympathetic and
                                                       Harley Street doctor who made a report      against me having time off) to say that
                                                       to the USS recommending the granting        if I felt I could not work, it should be
                                                       of my ill health pension. My particular     taken seriously. After two terms, I
                                                       pension scheme required that I should       decided I could not continue, and I had
                                                       demonstrate a permanent inability to        a year off work on sick leave. My GP by
                                                       carry out work of a similar nature to my    then was sympathetic and helpful. Ill
                                                       contracted job. I was 45 when seen by       health retirement commenced in
                                                       the specialist. Obviously with M.E.,        January 2006 (at the age of 55).
                                                       proving this permanency is a problem,          “My advice is: (1) stick with it.
                                                       as who knows quite how the illness will     Occupational health seemed initially to
                                                       develop or affect me as time passes? I      say no. Perhaps this is to weed out
                                                       was firmly of the view that I could not      those who are not ill. (2) Accept all the
                                                       think of returning to my old type of        medical help offered in terms of anti-
                                                       work, but how could I quantify this?        depressants, CBT and exercise. Without
                                                       Luckily the doctor was of the same          these on one’s record, the case for
                                                       opinion and said so in his report. I was    retirement may be less strong. (3) Find
                                                       finally granted the pension in August        a GP or consultant who is sympathetic
                                                       2004 (at the age of 46).”                   and will fill in the forms well. If
                                                                                                   necessary, provide information about
                                                                                                   M.E. if the GP doesn’t know it
                                                                                             “I then decided to apply to transfer
                                                                                          onto the trustee pension scheme. I had
                                                                                          remained an employee whilst claiming
                                                                                          PHI and this gave me the right to apply
                                                                                          for early release of my pension on
                                                                                          health grounds. My troubles were
                                                                                          however far from over! I was 46 years
                                                                                          old when I made this initial pension
                                                                                          application, which was rejected
                                                                                          because (1) I had not had CBT or GET;
                                                                                          (2) the occupational health advisors for
                                                                                          my employers were another insurance
                                                                                          company and would not for insurance
                                                                                          purposes accept that M.E. was a
                                                                                          permanent disability; (3) my employers
                                                                                          without my knowledge had submitted
themselves. The patient may be more           contents insurance had a free legal         the highly fabricated surveillance
informed than the doctor and should           help-line, which was quite good at          documentation to this insurance
pass this on.”                                pointing me in the right direction. If      company to be used against me!
                                              you possibly can, get a friend involved –      “I was given one month to appeal
                                                                                          but successfully extended this deadline.
Arm yourself with info                        ideally someone who understands your
                                                                                          I submitted to appeal extensive
                                              organisation and is good at dealing
Former social worker Kate first applied        with bureaucracy. Take them along with      documentation – two expert
for a pension when she was about 39.          you to any appointments with                independent reports from a professor
She found that “everyone agreed               consultants, employers, doctors etc;        of rheumatology and consultant
(occupational health, my GP) that I was       they can explain how the illness affects    psychologist, two further medical
too ill to work. The sticking point was       you. I’m sure that if you can argue your    reports from my GP and previous M.E.
whether the illness was ‘permanent.’          own corner the impression that the          specialist, plus research papers on M.E.
This was the regulation in my                 ‘bureaucrats’ are left with is that you     I also submitted a full rebuttal of the
employers’ pension. I couldn’t believe        are capable – they don’t see you crash      surveillance with details of the
they could dismiss me on the basis of         in a corner for days afterwards. And a      company’s malpractice world wide. I
being too ill to work and not give me a       friend can be bossy and rude and leave      thankfully won this appeal and my
pension but legally they could. Had I         you to be nice but knackered!”              pension was granted.
been better they could have made                                                             “I have now successfully claimed a
changes under the disability legislation                                                  second pension through the local
to help me work but in my case that                                                       government scheme under Regulation
was not an option.”                                                                       31. This regulation allows previous
   Kate’s advice to others is: “You need                                                  government employees to repeatedly
to find out what the rules are for                     For the last                        apply for early release of benefits on
                                                                                          health grounds even years after ending
granting an ill health pension in your
pension scheme. Sounds easy but isn’t;
I was informed that it would mean
                                                       seven years                        your employment. I am now in the
                                                                                          process of going to a stage two appeal
delivering a lorry load of books to me.
But there will probably be a key phrase
                                                      I was under                         in the light of the High Court ruling
                                                                                          (Speadborough v Wandsworth, London
that you can find out. Frame your
arguments to their rules. Does your
                                                      surveillance                        Borough Council, January 2004) in
                                                                                          order to try and establish the right to
illness have to be ‘permanent’? If so,                                                    have this pension back-dated to four
argue why it is. If it has to be on the                                                   years after the onset of my illness when
‘balance of probabilities’ argue that.                                                    permanency can be proved from my
Gather as much evidence as possible                                                       medical records. I have already
but be careful – at one point I was told        Rosemary fought hard all the way to       managed to have the award backdated
that if I was well enough to gather           appeal after suffering severely from        three years so watch this space!”
evidence I was well enough to work!           M.E. for 16 years. She says: “My battles
   “The Chief Medical Officer’s report         started at the age of 30 (1988) when        Age matters
on CFS/M.E. is invaluable. It has useful      diagnosed with severe M.E.; I applied
information on prognosis; the annexes         under a group scheme for PHI through        Rosemary’s advice to others is that the
have the research evidence used to            my employers. This claim was fraught        closer you are to pensionable age the
back up the views in the report (see          with many difficulties and for 16 years I    easier it is to prove the question of
resources section below) and in my case       was subjected to all the tricks of the      permanency. She feels that it is wise to
they showed clearly that the prognosis        PHI insurance trade. For the last seven     consult your own specialist prior to a
for someone who has been severely             years I was under surveillance. My          medical with occupational health. Try to
affected for four years is that the illness   benefit was finally terminated on the         obtain a written report from this
is likely to be permanent.                    grounds that I had been seen out and        specialist to take with you. Most
   “Legal advice can be helpful – my          about 10 times in seven years!              pension rules require that you are

                                                                                                InterAction 59 March 2007 19

          unable to return to your original         ‘Reasonable adjustments’                  In addition, the Access to Work
          occupation. It is imperative for your                                               scheme, accessed via the Job Centre,
          specialist to explain fully the
                                                    – are there options other                 can provide equipment such as voice-
          nature/extent of your disability and      than retirement?                          activated software and fares to work to
          how this affects your everyday                                                      pay for taxis.
                                                    There may be a lack of awareness of
          life/inability to undertake your
                                                    rights/duties in relation to employees
          previous occupation. This must be
                                                    with long-term health conditions and a    Expert advice
          detailed – outlining both your
                                                    lack of knowledge of reasonable           The Pensions Advisory Service (TPAS), is
          functional and cognitive difficulties.
                                                    adjustments that could enable their       an independent voluntary organisation,
          Permanency is usually considered
                                                    retention. In the case of people with     providing free impartial advice. It
          after someone has been ill with M.E.
                                                    M.E., this could include reduced hours,   provides a conciliation and mediation
          for two to four years. The
                                                    redeployment to another post, choice      service for members of the public who
          requirement for you to have CBT, GET
                                                    of shifts, time off for medical           have problems or disputes relating to
          and/or antidepressants can be
                                                    appointments and treatment.               their pensions. Their paid and volunteer
          disputed by your M.E. specialist.
                                                       Certainly, people with M.E. should     advisers have many years of experience
             “I had to commission my own
                                                    not be forced into early retirement       assisting people who have faced
          private CBT assessment with a NHS
                                                    when reasonable adjustments could be      difficulty with their application for an ill
          Consultant Psychologist who was an
                                                    made to enable them to do their job,      health pension. They can intervene on
          expert in M.E. in order to prove I
                                                    especially as in some circumstances       the individual’s behalf, help them
          didn’t need this therapy,” says
                                                    work can actually help people’s health    present their case and explore whether
          Rosemary. “It cost £1000 but I was
                                                    and well-being.                           the decision-makers have followed a
          eventually awarded these costs. Your
                                                       More information on this can be        fair and reasonable procedure in
          specialist must be well recognised in
                                                    found at the Disability Rights            making their decision. TPAS publish
          order to be considered as an expert
                                                    Commission site at:
          witness. Do not resign from your
          position, as this may affect your
          benefits. Don’t be afraid to challenge
          deadlines set by your employers –
          these are not necessarily legally

          Good practice
          Fortunately, some people have had
          more positive experiences. Paul
          describes the Church of England
          Pensions Board, which awarded him
          an ill health pension at 43, as
          “absolutely brilliant,” while Steve,
          who had worked for a private sector
          company, obtained an ill health
          pension at 47 after being made
          redundant at 36. He found out
          through his own research that it was
          possible for him to apply for this any
          time after leaving employment and
          before normal retirement age – the
          decision was entirely at the discretion
          of the scheme’s trustees.
            However, for others the struggle
          goes on. Kay – an experienced nurse
          – is currently preparing an appeal
          against a decision not to award her
          an NHS pension, following the
          termination of her contract of
          employment because of M.E./CFS.

          20 InterAction 59 March 2007
detailed advice on ill health retirement       of ill-health if the recipient will not be   all available treatments to help your
which is highly recommended. Their             capable of returning to their occupation     recovery and that these have not been
dispute resolution service is                  at a future date.                            successful. You can be ill enough to be
comprehensively described on our                 Pauline Taylor, Action for M.E.’s          dismissed from your job, and qualify for
web site, and they publish a booklet           Welfare Rights Adviser, adds: “It is         DLA, without necessarily reaching the
Ill-health early retirement, available from:   becoming more difficult all of the time       threshold for an ill health pension.”            for claimants to get early retirement.          The Pensions Ombudsman can
    TPAS say that ill health retirement has    The bottom line is usually that doctors      consider complaints from employees
become an increasing area of dispute in        and specialists will not confirm that a       about ‘maladministration leading to
recent years as companies and trustees         person with M.E./CFS has a permanent         injustice’. Maladministration can include
tighten up their procedures for granting       condition. When you ask for letters of       bias, neglect, delay and incompetence;
ill health pensions because of the cost        support they will often use evasive          and the complainant must have reason
involved. The definition of incapacity          terminology.                                 to believe that the disputed decision
will vary – it could mean that you               “To succeed you will need strong           was not properly made or
require an inability to carry out your         representation e.g. from a trade union       implemented. ‘Injustice’ does not only
own job, or you may need to be                 or solicitor. If you do not have a union     mean financial loss – it may also include
incapable of carrying out any                  and you have legal protection within         distress, delay or inconvenience. The
occupation at all. If you are awarded a        your household insurance, your insurer       Pensions Ombudsman’s report, How to
pension, it could be reduced or stopped        may help with your pensions claim.           avoid the Pensions Ombudsman,
if you get better and new medical                “It is important that you understand       includes a chapter giving specific
evidence suggests that you are able to         the criteria within your personal            guidance on awarding ill health
work. Since 6 April 2006 definitions of         pensions handbook for claiming your          pensions.
incapacity must comply with HM                 pension, otherwise you can miss the
Revenue & Customs’ requirement that            point and the claim will fail. Some areas
a pension can only be paid on grounds          will ask for evidence that you have tried

  Contacts and resources
  The Pensions Advisory Service (TPAS), 11 Belgrave Road, London SW1V 1RB.
  Helpline: 0845 601 2923. E-mail:

  Pensions Ombudsman, 11 Belgrave Road, London SW1V 1RB.
  Tel: 020 7834 9144. E-mail:

  Disability Rights Commission (DRC), Freepost MID 02164, Stratford-upon-
  Avon, CV37 9HY. Tel: 08457 622633. Website:, has advice on
  ill health pensions, redundancy and retirement.

  Advisory Conciliation and Arbitration Service, 22nd floor Euston Tower, 286
  Euston Road, London NW1 3JJ. Confidential helpline for employment
  questions: 08457 47 47 47. Website:
                                                                                            About the author
                                                                                            Catherine Stillman-Lowe is by
  Rosemary, whose story is given in this article, is happy to share her
                                                                                            profession an independent oral health
  experiences in order to help other people with M.E. Contact
                                                                                            promotion adviser, having worked for
                                                                                            16 years for the Health Education
  A firm of solicitors experienced in this issue has an article available online:            Council, Health Education Authority                                   and Health Development Agency.
                                                                                              On a voluntary basis, she has
  A Report of the CFS/ME Working Group; Report to the Chief Medical Officer                  supported the Reading M.E. Support
  (2002) is available from Action for M.E. or from the Department of Health                 Group in its campaign for better local
  website:                                                                    services for patients.

  Review of Ill Health Retirement in the Public Sector by HM Treasury. Available

  Acknowledgements: with thanks to TPAS, DRC and Richard Woodman of
  Royds Employment Law ( for their help, and to Action for
  M.E. members for contributing their stories.

                                                                                                  InterAction 59 March 2007 21