CV Ellen

Date of Birth:

2.8.1955 (Amsterdam)

Nationality:

Dutch/British

Education:

Twickenham County School 1966‑1973

University of Reading 1973‑1976

B.A. Hons in Psychology (2:1)

Thesis on the menstrual cycle.

University of Amsterdam 1976‑1980

Doctoraal – equivalent to Masters degree as certified by NUFFIC and NARIC UK – in Psychophysiology (1979) and Clinical Psychology/Persoonlijkheidsleer/Psychotherapy (1980)

Specialist training: Endocrinology (with elective at University of Leiden Medical School)

Thesis: Anxiety and depression in premenstrual syndrome. (Study at St. Thomas’s Hospital, London).

Brunel University 1989-1996 (PT)

PhD. July 1996.

Thesis: The psychological aspects and management of the chronic fatigue syndrome.*

Interests:

Premenstrual disorders, post-natal depression, breast cancer,

chronic fatigue syndromes e.g. myalgic encephalomyelitis (M.E.),

prejudice in medicine, the accountability of scientists,

Holocaust denial and care for victims of sexual abuse.

Work experience:

Advisor to various magazines in Holland and the UK and Medical Journalist (DLF World Service, Germany).

Director of the International Federation of M.E. Associations (IFMEA).

Editor of magazines for the M.E. Action  Campaign (now AFME) and National Association for Premenstrual Syndrome (NAPS).

Medical journalist and co-founder ME Stichting (Holland).

Advisor to various charities including National Association for Premenstrual Syndrome, Premsoc, Association for Post-Natal Illness, M.E. Association, Action for M.E.

Visiting Research Fellow, University of East London (2008-2012)

Editor, M.E. and CFS References (1989-2010)

Advisor to the ME Association (2009-2010)

Reviewer various health psychology journals, NIHR etc. (“Top grade” reviewer Annals of Internal Medicine 2017).

Member of Editorial Board (Journal of Health Psychology) until July 2017.

Current occupation:

Retired

Press contact for CFS/PMS, PND and disability issues, the British Psychological Society.

Membership professional bodies:

British Psychological Society (Fellow), Division Health Psychology

Registration:

Chartered psychologist (BPS 013390)

Before retirement:

Practitioner psychologist (HCPC  PYL15084)

EuroPsy registered psychologist

Fellow of the RSM.

Achievements:           

Creating awareness of the illnesses post natal depression, premenstrual syndrome and myalgic encephalomyelitis in the

Netherlands and UK.

Helping to establish supports group in Netherlands and UK

Fundraising for medical charities (more than £100000).

Promoting the work of disabled scientists.

Coping with 14 years of cyberbullying (triggered by challenging bullies when they attacked two physicians and they turned on me.) Result: lots of misinformation about me on the internet undermining my achievements. Because of lifelong disability,

I am very pleased that I was able to help people with my research and fundraising.

  
Scientific publications 1983‑2018

Books and chapters

Functional Disorders of the Menstrual Cycle (co‑editor with Dr. M.G. Brush). Chichester: Wiley 1988.

Brush, MG and Goudsmit, EM. General and social considerations in research on menstrual cycle disorders with particular reference to PMS. In Brush, MG and Goudsmit, EM (eds.): Functional Disorders of the Menstrual Cycle. Chichester: Wiley 1988. Pp.1-13.

Goudsmit, EM. Psychological aspects of premenstrual symptoms. In Brush, MG and Goudsmit, EM (eds.): Functional Disorders of the Menstrual Cycle. Chichester: Wiley 1988. Pp. 20-26.

Goudsmit, EM. Anxiety and Depression in Premenstrual Syndrome. In Spielberger CD, Sarason IG, and Defares  PB (eds), Stress and  Anxiety, vol. 11.  NY: Hemisphere, 1988. Pp. 211-217.

Goudsmit, EM. The Psychologisation of illness. In Brostoff J, Challacombe SJ (eds.) Food Allergy and Intolerance. 2002.  2nd Edition. WB Saunders. Pp. 685-693.

Articles (peer reviewed/commissioned)

Goudsmit, EM. Psychological aspects of premenstrual symptoms.  Journal of  Psychosomatic Obstetrics and Gynaecology, 1983, 2, 20‑26.

Goudsmit, EM. Post Natal Depression.  General Practitioner, 1984, July 6th and 13th. Commissioned.

Goudsmit, EM and Gadd, R. All-in-the-mind.  The psychologisation of illness. The Psychologist, 1991, 4, 449-453. http://thepsychologist.bps.org.uk/archive?page=27 (October issue)

Goudsmit, EM. All in her mind!  Stereotypic views and the psychologisation of women’s illness.  Health Psychology Update, 1993, 12, 28-32. Reprinted in Wilkinson S and  Kitzinger  C (eds.) Women and Health. Feminist Perspectives. London: Taylor and Francis, 1994. Pp. 7-12.

Goudsmit, EM. ME and CFS: why patients and doctors cannot agree. Health Psychology Update, 1998, 31, 10-13.

Goudsmit, E and Stouten, B. Chronic fatigue syndrome: editorial bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome, 2004, 12, 4, 47-59. 

http://www.axfordsabode.org.uk/me/JCFS.pdf * This website is not working the moment.

Goudsmit, EM and Howes, S. Pacing: A strategy to improve energy management in chronic fatigue syndrome.  Health Psychology Update, 2008, 17, 1, 46-52. 
http://www.health-psychology.org.uk/HPUContent/contents2008.php

Goudsmit, EM., Stouten, B and Howes, S. Fatigue in myalgic encephalomyelitis.  Bulletin of the IACFS/ME, 2008, 16, 3, 3-10.

http://www.iacfsme.org/BULLETINFALL2008/Fall08GoudsmitFatigueinMyalgicEnceph/tabid/292/Default.aspx

Goudsmit, EM and Howes, S. Is multiple chemical sensitivity a result of expectations and beliefs? A critical evaluation of provocation studies.  Journal of  Nutritional & Environmental Medicine, 2008, 17, 3, 195-211.  

http://www.informaworld.com/smpp/content~content=a903527516~db=all~order=page

Goudsmit, EM., Stouten, B and Howes, S. Illness intrusiveness in myalgic encephalomyelitis. An exploratory study. Journal of Health Psychology, 2009, 14, 2, 215-221.

http://hpq.sagepub.com/cgi/content/abstract/14/2/215?etoc

Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33.

http://shop.bps.org.uk/publications/publications-by-subject/health/health-psychology-update-vol-18-no-1-2009.html

Translated into Dutch and published in Lees Me, 2010, 10, 4-47. Updated by EMG in 2012 and published online (2012, 21^st Oct):

http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical%20entity-10-12.html

Goudsmit, EM., Ho-Yen, DO and Dancey, CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Education and Counseling, 2009, 77, 231-236. doi:10.1016/j.pec.2009.05.015.

Goudsmit, EM.,  Crawford, JS., Howes, S and Dancey, CP. A systematic review of  controlled studies of graded exercise therapy for chronic fatigue syndrome. Fatigue, 2011. (Accepted but not published due to change of editor). For updated version see: https://www.researchgate.net/publication/260987651_Graded_exercise_therapy_(GET)_for_CFS. An_analysis

Stouten, B and Goudsmit, EM.  How valid is the model behind cognitive behaviour therapy for chronic fatigue syndrome?  An evaluation of the additional data from the trial by Prins et al. Bulletin of the IACFS/ME, 2010, 18,  2, 82-89.

http://www.iacfsme.org/BULLETINSUMMER2010/tabid/432/Default.aspx

https://www.researchgate.net/publication/263702647_How_Valid_is_the_Model_Behind_Cognitive_Behavior_Therapy_for_Chronic_Fatigue_Syndrome_An_Evaluation_of_the_Additional_Data_from_the_Trial_by_Prins_et_al

Goudsmit, EM., Jason, LA, Nijs, J and Wallman, KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: A consensus document. Disability and Rehabilitation, 2012, 34, 13, 1140-1147.  Online 19^th December.  doi: 10.3109/09638288.2011.635746.

https://www.tandfonline.com/doi/abs/10.3109/09638288.2011.635746

Author:  http://www.tandfonline.com/doi/full/10.3109/09638288.2011.635746#.VcuOCZXbLcs

Howes S, Goudsmit E, Shepherd C. Myalgic encephalomyelitis (ME).  Criteria and clinical guidelines 2014. Available from: http://www.axfordsabode.org.uk/me/mecrit2014.htm and http://www.meassociation.org.uk/2016/10/a-copy-of-the-london-criteria-as-revised-in-2014-archived-here-for-reference-purposes-15-october-2016/ (home page: News archive October 2016)

Howes, S and Goudsmit, EM. Progressive Myalgic Encephalomyelitis (ME) or a New Disease? A Case Report.  Physical Medicine & Rehabilitation- International, 2015, 2, 6, 1052. Online 9^th July.  http://austinpublishinggroup.com/physical-medicine/all-issues.php

Updated October 2016.  ResearchGate Working paper. doi: 10.13140/RG.2.2.11477.01762

Goudsmit, E and Howes, S. “ME can be beaten by taking more exercise.” A response.  MCS-Aware Magazine.  2016, Spring, p 37-38.

Sunnquist, M., Jason, L. A., Nehrke, P., Goudsmit, E. M. A comparison of case definitions for myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Chronic Diseases and Management, 2017, 2, 2, 1013. Online 21^st May. https://www.jscimedcentral.com/ChronicDiseases/chronicdiseases-2-1013.pdf

Goudsmit, E and Howes, S. Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment.  Journal of Health Psychology, 2017, 22, 9, 1159-1167. Online 29^th May

doi: 10.1177/1359105317707216  https://doi.org/10.1177/1359105317707216

Articles (in non-peer reviewed publications).

Goudsmit, EM. M.E. still misdiagnosed and misunderstood.  Women In Medicine  Newsletter, 1989, Jan, 8‑9.

Goudsmit, EM. Uitputtingsslag rond vermoeidheid. Spiegeloog, 1997, 24, 236, 14-16. (In Dutch).

Goudsmit, EM. ME and CFS: why patients and doctors disagree.  BSAENM Newsletter, 1998, 7, 1, 8-9.

Goudsmit, EM. New research on the second generation. Second Generation Voices, 2000, 15, 20-21.

Goudsmit, E.  It’s medical science, Jim, but not as we know it! The distortion of evidence relating to CFS.  AAA  Essay Competition, First Prize (Category 2). 2000

Goudsmit, EM. Post traumatic stress disorder: genuine illness or convenient excuse? Second Generation Voices, 2001, 18, 3-5.

Editorial bias in the Lancet.  ME Research online, 2005.  http://freespace.virgin.net/david.axford/melist.htm  http://www.axfordsabode.org.uk/me/melist.htm*

Dancey, CP and Goudsmit, EM.  Stress causes IBS? If only it were so simple. Gut Reaction, 2008, 72, 6-7.  

Goudsmit, E.  Dental woes and MCS.  The Phoenix.  Newsletter of the British Society for Ecological Medicine.  2012, 1 (May), 8.

ME or CFS: that is the question. Foods Matter, 2012, 71.  Online 21^st Oct.

http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-or-not-me-10-12.html

Classic ME: the basics. Foods Matter, 2012, 71. Online 21^st Oct.

http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-classic-10-12.html

Howes, S., Goudsmit, E and Shepherd, C. Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines 2014. [Internet]  21 January 2014.  (In two comments) US National Library of Medicine. NCBI Resources. http://www.ncbi.nlm.nih.gov/pubmed/21777306

Goudsmit, E.  The PACE trial. Are graded activity and cognitive-behavioural therapy really effective treatments for ME? Online 18^th March 2016.

http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf*

Letters

Goudsmit, EM. Postnatale depressie. Nederlands Tijdschrift voor Geneeskunde, 1983, 127, 24, 1078.

Goudsmit EM, Macintyre A, Sullivan M. Chronic fatigue syndrome. British Journal of General Practice. 1991, 41 (352), 479‑80.

Goudsmit EM, Shepherd C. Chronic fatigue syndrome. British Journal of Psychiatry. 1992, 160, 127‑8.

Goudsmit EM, Macintyre A. Chronische‑moeheidsyndroom. Nederlands Tijdschrift voor Geneeskunde. 1992, 136, (14), 708‑9.

Goudsmit EM. Chronic fatigue syndrome. Distinguish between syndromes… BMJ. 1994, 308, (6939), 1297‑8.

Goudsmit EM, Howes S. Cognitive functioning with chronic fatigue. British Journal of Psychiatry. 1995, 167 (6), 818‑9.

Goudsmit EM. Graded exercise in chronic fatigue syndrome. Chronic fatigue syndrome is heterogeneous condition. BMJ, 1997, 315, (7113), 948.

Goudsmit E. Treating chronic fatigue with exercise. Exercise, and rest, should be tailored to individual needs. BMJ, 1998, 317, (7158), 599.

Goudsmit E, Shepherd C. Functional somatic syndromes. Lancet, 1999, 354 (9195), 2078.

Goudsmit, E.  Chronic fatigue syndrome. A response to Lynch and Clare.  Modern Medicine of Ireland,  1999, 29 (7-8), 67-69.

Goudsmit E. Chronic fatigue syndrome. British Journal of Psychiatry, 2000, 177, 470.

Goudsmit E. Chronic fatigue syndrome. Irish Journal of Psychological Medicine, 2000, 17 (2), 76.

Goudsmit E. Functional somatic syndromes. Annals of Internal Medicine, 2000, 132, (4), 328.

Goudsmit E.  Measuring the quality of trials of treatments for chronic fatigue syndrome. JAMA 2001, 286, 24, 3078-3079.

Goudsmit, E. Chronic fatigue syndrome.  British Journal of General Practice, 2002, 52, 763.

Goudsmit, E.  Chronic fatigue syndrome/ME.  British Journal of General Practice, 2002, 52, 12, 1023-1024.

Goudsmit, EM, Sneddon, P., Shepherd, C and Howes, S. Neuroticism as a consequence of illness. BMJ rapid responses, 2008, 26^th February. http://www.bmj.com/cgi/eletters/333/7568/575#191151

Goudsmit, EM. Ignorance is not bliss. British Journal of Psychiatry, 2009. eLetter Online 22^nd October. http://bjp.rcpsych.org/cgi/eletters/195/4/369-a

Goudsmit, EM. Study demonstrates that the criteria for CFS remain too vague. BMC Medicine, 2009,  20th November [Epub].

http://www.biomedcentral.com/1741-7015/7/57/comments#374647

Kindlon, T and Goudsmit, EM. Graded exercise for CFS: Too soon to dismiss reports of adverse reactions. Response to Letter to the Editor by Lucy V. Clark and Peter D. White. Journal of Rehabilitation Medicine, 2010, 42, 184.

http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0493

Stouten, B and Goudsmit, EM. Why use cognitive behaviour therapy to reduce fatigue in patients with chronic fatigue syndrome? The role of self-efficacy. Research letter. Psychological Medicine. Accepted 2010. Retracted by us  in light of libellous response. Published Bulletin of the IACFS/ME (see articles above).

Stouten, B, Goudsmit, EM and Riley, NH.  The PACE trial in chronic fatigue syndrome.

Lancet, 2011, 377, 1832-1833. Online 17^th May. doi:10.1016/S0140-6736(11)60685-5

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60685-5/fulltext

Goudsmit, E.  ‘Lord, let me know mine end, and the number of my days.’ (Psalm 39). Disability Now, 2012, 53, 32.

Goudsmit, EM.  “Misunderstanding or just a different approach?”  http://www.biomedcentral.com/1741-7015/11/205/comments#2072698
Response to Morris and Maes, BMC Medicine, 2013, 11, 205.  Published online: 6^th June 2014.

Goudsmit, EM.   No right to be forgotten for PhDs?  The Psychologist, 2015, 28.

https://thepsychologist.bps.org.uk/volume-28/march/more-letters

Goudsmit, EM.  Information on ME and Post Viral Fatigue Syndrome might mislead. Annals of Internal Medicine, 2015. Online 21^st June. http://annals.org/article.aspx?articleid=2322800

Conference papers

Anxiety and depression in premenstrual syndrome. An exploratory study. National Conference on stress, anxiety and psychosomatic disorders. Netherlands Institute for Advanced Study in Humanities and Social Science (NIAS). Holland.  1980

Psychological aspects of premenstrual syndrome. Conference on premenstrual syndrome and postnatal depression. University of Leiden. 1982.

All in her mind. Stereotypic views and the psychologisation of women’s illness. (Taped contribution).  BPS Annual Conference. 1992

Has the psychologisation of illness gone too far? Allergy and the Brain.   Allergy Research Foundation meeting at the Royal Society of Medicine. 2001

Others

Interview in book:  Een schouder om op te huilen. Beschuit met Tranen. Postema, J (ed.) Amersfoort: Novella. 1983. 85-92. (chapter in Dutch language about  my work on post natal depression in the Netherlands).

Goudsmit, E. Coping with emotional distress: a beginner’s guide. Commissioned article for the newsletter of the Sussex ME Association. 1999.

Goudsmit, EM and Faas, RJE. Depression in myalgic encephalomyelitis and chronic fatigue states; a re-examination of the data.  ME Research Online, 2001, 2^nd January.  http://freespace.virgin.net/david.axford/melist.htm* Also published in a less academic form in the magazine of the ME Association.

Goudsmit, E. The Royal Free Epidemic of 1955: Was it really mass hysteria? ME Research Online, 2000, 24^th December.  http://freespace.virgin.net/david.axford/melist.htm.* Also published in shorter, less academic form in the magazine of the Australian and New Zealand ME Association.

Goudsmit, E. The personality of patients with myalgic encephalomyelitis. A replication of a study by McEvedy and Beard. ME Research Online, 2000,  24^th December.  http://freespace.virgin.net/david.axford/melist.htm.* Also published in a shorter form in  the magazine of the ME Association and with additional data in the BMJ, Rapid Responses (as above).

Goudsmit, EM., Stouten, B and Howes, S. Editorial bias in the Lancet. ME Research Online, 5^th October 2005. http://freespace.virgin.net/david.axford/melist.htm.* See also Chronic fatigue syndrome: editorial bias in the BMJ (JCFS, 2004). Information was initially published in less academic form as:  It’s medical science, Jim, but not as we know it! The distortion of evidence relating to CFS.  AAA  Essay Competition, First Prize (Category 2). 2000.

Goudsmit, EM, Stouten, B and Howes, S. Illness intrusiveness in myalgic encephalomyelitis.  An exploratory study. ME Research Online, 2007, http://freespace.virgin.net/david.axford/melist.htm.* Shorter version  published in J Health Psychology (see above).    

Goudsmit, E. Factsheet on CBT. Written for the ME support group and available online  http://freespace.virgin.net/david.axford/melist.htm.* Also selected by Prof. Klimas and colleagues at the IACFS/ME for their website http://www.iacfsme.org/MECFSManagement/tabid/121/Default.aspx

Goudsmit, E.  “ME can be beaten by taking more exercise”.  Really?  Online 18^th Feb 2016. http://www.axfordsabode.org.uk/me/ME-PDF/PACE%20trial%20the%20flaws.pdf*

Other articles commenting or analyzing the literature.

Book reviews (Lancet, HPU, Psychologist, Lees ME), letters (Psychologist) and articles describing the latest research for publications of patient groups in the UK and elsewhere. Factsheets for Action for ME.

*Available online via EThOS:  http://ethos.bl.uk/OrderDetails.do?did=1&uin=uk.bl.ethos.318425

 Or search for ‘Goudsmit’: http://ethos.bl.uk/Home.do

*As from 1^st August 2021, this website is no longer in existence.

As predicted: the threat to evict.

Not content with restricting mum’s pain relief before her death (which is illegal if there is no agreement in situ ), sibling is doing what we expected him to do next. He has rejected all my offers to buy him out, and wants pretty much everything I have. That would mean I couldn’t afford private care for very long. (FYI, social care does not include shopping so I’d starve. Delivery services that I use don’t offer some foods which I eat a lot because I can digest them and avoid a stomach upset. I have many sensitivities). The choice is therefore homelessness or a totally unsuitable residence far away from my doctors, dentist and physio, or poverty.

I’m now thinking of the tent I shall buy. And a chemical toilet. Where can I put them? How can I feed myself? I wish I could tolerate perfumed products. Then I could stay in a hotel while I searched for somewhere to rent. I’d have to paint it myself as everyone is still uber busy dealing with their backlog. The soft carpet that might avoid me breaking my hip isn’t available anymore. Everything is treated with smelly chemicals.

I have strange thoughts. If I were to threaten someone with a knife, I’d be arrested and spend some time in a warm police cell with toilet. I bet sibling would like the thought of that. Job done. Arrested and in prison. He nearly achieved that with the false accusations but mum died before the police was called.

I was rich once. I gave a lot away to people and charities in need. Well, I didn’t see this situation coming. Mum was well off. All appeared fine. When I saw the first sign that mum’s poa finance wasn’t looking after her, I mentioned it but mum didn’t seem bothered. Well, she was 94.

As the lawyer from Which? put it so elegantly, I was foolish to pay for her care when her money ran out. Hindsight is a wonderful thing.

If I had left her care to the council, she would have received four hours a day help and the meals on wheels that she hated. Sibling could not have manipulated them to restrict her pain relief and I wouldn’t have had to deal with a safeguarding enquiry. More importantly, I would have had enough to buy out sibling’s part of the estate and been able to live in my home a little longer. Foolish. That’s one word for it. But I did my best for mum. And that matters a lot to me. Perhaps more than my life. Time’s nearly up. I’d say that it’s been a blast but it hasn’t been. It’s been a struggle with periods of hell.

I called the Which! Legal Service and talked to their probate specialist. I have no options. The executor can evict me and sibling can evict me to sell the property. He doesn’t need the money. He’s very rich. And the beneficiaries are hardly poor. This is payback for something.

Appendix.

Here is how the executor informed me

“… I now have to consider starting eviction proceedings, and with the current court backlog these will need to be started before the end of the year in order to have the matter resolved by May 2022 if agreement cannot be reached between the parties. There are additional costs involved in eviction proceedings and this is not something that we undertake as a firm, so means that I need to instruct a specialist firm to act on our behalf and I confirm that I will be doing this in mid November, to allow Miss L time to take instructions from Ellen and to advise her further.”

Mum’s statement of wishes in which she asked that I be allowed to stay in the house was thrown in the bin. She was his first victim. I was the next. What will be, will be.

Playing God and uncaring carers.

Who should decide if and when a dying person should be given a painkilling drug? When she tells you or someone else that she is in pain or is crying because of pain? Or when you or a third party decide that she has to tolerate the pain. That it won’t last long, isn’t that bad etc. I believe that a caring person responds to a report or observation of pain. The end of life is not the time to limit pain relief.

Sibling and Mel clearly had other ideas. In deciding that they would not follow the instructions from the GP and a nurse, they were acting illegally. Yes, there is a law. The nonsense about my alleged behaviour, i.e. ‘pressurising’ carers to give mum Oramorph when they felt it wasn’t needed meant, in practice, that had I realised what was actually going on, I would have contacted someone during the day, or administered the drug myself at night. The lies and associated character assassination had the result that the bottle was hidden, the code of the safebox was changed and in short, I couldn’t have helped mum. Sibling and carers, not the GP or mum, decided what would be given and when. The records indicate that she had only 4 or 5 doses of Oramorph in total over the weeks we had the drug. She was not in danger of an overdose because of me.

I’ve covered some of the info below before, but repeating it here allows readers to follow the story and the evidence which supports it. It was inspired by my brother’s claim that we’d had a discussion which left him concerned, but the only thing I recall was him telling us that we shouldn’t give the two end of Life drugs as they are nasty. (He’s not medically qualified. He is a fire investigator). I refused to promise that. I told him that we’d do the best we could for mum. Little did I know that the other two carers wouldn’t.

Emails:

Bob Wed 20/05/2020 19:29

“I told you at the time, when it happened, that I was concerned about the way you were looking for the carers to give mum oromorph and then the lorazapam. You should recall that there was then the very briefest of discussions about who had mum’s best interests at heart. I did not feel that you took my views on board in any way and I was left with no choice other than to report my concerns. If my concerns had been unique, then I feel it highly unlikely that anything much would have come of them. On a related point, it has already been made clear to me that matters are now outside of my control.

I can instruct a probate lawyer but that will cost the estate money. The more money that is spent that way, the greater the difficulty in it paying mum’s debts and individual bequests, whilst leaving enough for you to buy out my share of the house.”

B

[Response: there was no such discussion re Oramorph and lorazepam. This simply did not happen.]

Email Ellen

To:

• Bob Cc:

26th May 2020

Dear Bob,

…I  propose that we put the past behind us but in order to proceed, you have to write an email FAO the practice manager of the surgery, Dr P.. and Dr O.. cc to me, with the following:

(I will not ask you to suggest you lied or that you were malicious – dignity is all):

The email needs to say:

1.  That you apologise for the allegations you made about me which you accept now were based on incomplete information and misunderstanding at a difficult time for you. As a result, you wrongly claimed that I had done things that I had not, e.g. tried to change the will, give Oromorph and so on.  You are sorry for the problems this might have caused the practice, as well as myself. You confirm that you have no evidence that I failed to provide mum with the very best care.
2. You accept that as far as you know, there were never any issues relating to mum’s safety.
3. …
4. You hope that the allegations will not impact on the relationship between me and the doctors.

If you do the above,  we can obtain the will  and begin the proceedings. Otherwise, we simply can’t work together. Too much has happened to me. Only an apology from you can put it right.

Email has to go today and I will check tomorrow that it has arrived at the surgery.

…

I owe you this final chance. Mum would hate any court action. the ball is in your court.

Ellen

 
 
Email Bob

Tue 26/05/2020 20:26

Ellen,

… 

I will put aside the history, without further comment here. However, I could not send such an email. 

There are a number of issues but as examples:

…

I believe I was clear about which facts were from my own knowledge and belief and equally clear about the sources of any other information. Where necessary, others should have and, I believe, did speak to some of the individuals, to confirm their understanding. I was spoken to.

However, I am sorry about the timing of events. I did ask whether matters could be put aside if mum was about to die. However, I was informed that no delay was possible.

… but I could not write the email you had set out.

Bob

Issues

He seems to be placing all the blame for the lies on Mel and asserting that he did not contact anyone himself.

‘I was spoken to.‘  As in, I only responded to questions or I didn’t offer information not asked for.

Well, not according to the records eg district nurses or this from the Ombudsman’s report on Social Services.

[Mr Z had been previously identified as my sibling.] Decision letter 22 June 2021

“On 11 May a further safeguarding concern was raised by Mr Z. The Council

phoned Mrs Y’s GP to discuss the situation. He gave his view of the situation and

Mrs Y’s health. He said Mrs Y was in declining health and that Ms X’s view of the

situation was more in line with the reports of the care workers than the view of Mr

Z.”

And this.  An email. So he was spoken to, he spoke, and he emailed.

“The Council says it did take the information provided by Mr Z at face value. It

says that the strength of Mr Z’s email along with the information from the GP and

the carers’ justified the decision to proceed with the safeguarding enquiry at that

time. However, it says with the benefit of hindsight, it could have handled the

issue with greater sensitivity and curiosity in respect of the relationship between

Mr Z, Ms X and Mrs Y”.

A further safeguarding concern on the 11^th?  What was the previous one?

The record below shows Rebekah supported Mel in this fabrication and although she had not witnessed the event, she phoned to corroborate Mel’s allegation.  She thus joined in with what one could call, ‘carers playing God’.  They decided when Mum was in sufficient pain to administer Oramorph. Not mum, when she reported being in pain.  And she was in pain, as noted on the 13^th May in the records of the District Nurses. Nurse Charlie instructed the carers to administer the drug (see below) the next two images).  Not me.

Again,

The ombudsman suggested that the information came from sibling and was supported by two carers, working closely together. The end result was the mum was kept in pain prior to her death. Which I consider truly wicked.

Nurses entry 13^th May, 11.20. Pain that deserved Oramorph.

And agency carers observed pain as well. Example. (NB  I’m not mentioned).

Did Mel and Rebekah really see no pain?  If they ever gave mum Oramorph, why is there no record?  They recorded everything else, including use of body wash.

Going back to concept that Bob was only spoken to, how do I interpret this?

PS  Agency carer Alice also gave mum lorazepam, again, I’m not mentioned, but the delay in getting permission from the nurses is highlighted. Another negative response from the false allegations.

So was Mel the primary source, i.e. a malicious liar, or was there a small group involving someone very clever.  Much more clever than the carers, a true manipulator who orchestrated the campaign? I’ll probably never know the truth.