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"Emsworth police officer’s suicide prompts concern over care"

Discussion in 'General ME/CFS News' started by Kyla, May 15, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.chichester.co.uk/news/lo...pts-concern-over-care-1-6742298#comments-area


    Emsworth police officer’s suicide prompts concern over care

    CARE for people with chronic fatigue syndrome has been scrutinised after a 34-year-old committed suicide fearing she would be forced into the wrong care.


    An inquest was held into the death of Emily Gregg, a former police officer in Portsmouth, who hanged herself in her garden in November, 2014.

    Her father, Phil Gregg, said she was ‘a joy’ and ‘fiercely independent’ until she woke up in pain on her birthday on July 1, 2013 and could not move her legs.


    Mr Gregg said her GP knew little about the syndrome so Emily paid for advice from a clinic in London then she had to move in with Mr Gregg, in Southbourne, so he could care for her.


    Her condition was stable until July 13, 2014, when she woke up paralysed from the neck down and for six days, Mr Gregg cared for and washed her before he asked to be referred to a community nurse.

    When Mr Gregg asked for a second nurse he was told to ask charities for funding. He wrote to MP Andrew Tyrie who wrote to Amanda Rogers, director of adult services at the county council. She then arranged for two nurses to be put in place.

    By then Emily was being treated by a Southbourne GP called Pippa Lally who Emily preferred, but Emily could not sleep, was bed-bound and spent much of her time in the dark, with ear protectors on.

    “Emily had this very morbid view of how her life was going to continue,” said Mr Gregg.

    “There was a total lack of facilities. It seemed bizarre we had our own specialist service in Haywards Heath but because she had severe symptoms, they weren’t able to help her, which seems ludicrous.”

    Dr Lally referred Emily to a special unit in London but it had a four to six-month waiting list.

    Mr Gregg looked it up and read that it was a locked unit and was for people with mental health problems. He did not tell Emily but he was concerned.

    On November 14, Emily texted her friend and former colleague Julie Fry, hinting she was thinking about ending her life.

    Julie said: “I felt that she was concerned people were going to start questioning her mental ability. She wanted advice about what adult services could do and if they could take her away.”

    But Emily was making plans for the future so Julie did not think there was serious cause for concern.

    Emily’s mother Susan Gregg, was upset Emily was only ever diagnosed through method of deduction and there was no clear care pathway.

    “Why do you accept someone is so ill they can’t move and not have her in hospital?” She said. “You wouldn’t have an animal kept like that. Why was that allowed to continue?”

    West Sussex Coroner Penelope Schofield questioned Emily’s care team and concluded awareness and care services for chronic fatigue syndrome were insufficient.

    She said: “I’m going to write to the doctor who cared for Emily at the Portsmouth surgery about my concern nothing more was done to diagnose her illness.

    “I hope other families like yourself are not faced with having to drive a loved one’s care in the way that you did.”
     
  2. Bob

    Bob

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    Very very sad. But all too very familiar. This is happening to our community over and over and over again.
     
  3. Daffodil

    Daffodil Senior Member

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    why isnt someone in the UK doing something? why isnt there some kind of politician getting involved? i dont understand why no one there cares. i heard enlander sent a letter many years ago to the queen to ask her to do something but i guess she didnt give a sh-- either.

    there was also some rich woman.....some kind of duchess or something? who had CFS and got help from some foreign doctor and got well....you'd think she might have done something....cannot remember who that was...

    selfish $@#@!@!
     
  4. mermaid

    mermaid Senior Member

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    Did the father have this part wrong? Is there a locked unit for sufferers of CFS in London? Or did the Dr assume that Emily had a severe mental health issue - but would surely then be referred to a mental health unit closer to home? Kings College Hospital seems to be an open outpatient unit unless they just don't advertise the fact that they have an inpatient one.
     
  5. sarah darwins

    sarah darwins I told you I was ill

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    That's just awful.

    I can't help noticing that the article refers only to chronic fatigue syndrome. I've spent most of the last 15 years overseas. Before I left, this article would have referred only to ME. This rebranding matters. It's been the cornerstone of what looks like an orchestrated effort to characterise this disease as a psychogenic illness.

    And look how successful that campaign has been. Even those of us with this rotten illness often refer to it as CFS now. I do it, and don't always remember to correct myself. (I know this is confusing for people in, say, the States where CFS has always been the name, but it really is an important issue in the UK because the name change reflects a very damaging shift in perception and clinical response).

    @Daffodil ask why no one is doing anything. I think this is exactly why. The psychogenic mob have done such a great job of promoting their theories that most people in positions to do something about it don't think there's a problem. They think funnelling sufferers into CFS Centres which refer them to CBT practitioners and so on is the right response. They've been told that this is "best practice" and they assume it must be so.

    Poor Emily Gregg had good reason to be afraid of where things were heading.

    Quite frankly, I'm spitting mad after reading that. I'm just about to travel abroad in search of actual testing and treatment, but when I come back I'm going to start writing some bloody letters. This really is not okay. Not okay at all.
     
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I have no idea which Hospital the article refers to, but in answer to your question (I have bolded), then yes there is a facility, and likely more than one.

    The National Hospital for Neurology & Neurosurgery (NHNN) in London is one such place, that can choose to lock CFS patients up in their 'specialist unit' for people with alleged neuropsychiatric problems, who don't have any psychological health problems.

    In other words, if you end up there as bedridden with severe ME symptoms, be very aware you will likely be discharged (still bedridden) or moved to another ward behind a locked door once your 'tests' are all coming back as normal. (Tests for the disease you don't have).

    What happens to you next, depends on your ability to see visitors, to use the phone, contact your MP or Newspaper, and to stay alive when all medical care is withdrawn after a settling down period, in which you are coerced not to complain, not to ask for medical care, and not to discuss 'ME', as ME doesn't exist. Instead you are trained to perform a ritual of increased activity and pleasing sir and madam come ward round. A ward round that doesn't take place at the end of your bed, but where you are forced to attend. (Unheard of in other medical wards, all doctors usually come to the bedside).

    The UK and it's treatment of ME (through CFS), is certainly an embarrassment to behold, but few know it happens, and especially if patients commit suicide, there is no future court cases for patients to testify against the current regime who are still celebrated as harmless theorists who have wacky views but nothing more sinister. This of course, depends if you're the one unable to speak, move, wash yourself in bed - because your 'CBT' doesn't reverse this.

    Perhaps in text to those who have their freedom and health,yes, then are harmless idiots who are stuck in the past with Freud. But when you are defecating in your own hands (because no one will push you to the toilet as a wheelchair is a form of attention seeking in their eyes), or not being given food and water (you are told to walk for it) then 'theorists' is perhaps not an accurate term for the 'CFS experts' who manage you so beautifully.

    Until the old guard is thrown out, and the correct patient cohorts are studied (severely affected in homes and bedridden with Ramsay ME 'signs' of disease), then the heterogenous 'CFS' label will always lead to patients dying from natural causes (uncontrolled disease) and also from suicide. RIP to this poor person who couldn't cope and took their own life.

    ME diluted to Chronic Fatigue and the disability the fault of the victim, is communism at its finest. Ironic, as the Americans created it (CFS), and the British perfected it (CFS as CFS/ME).
     
    Last edited: May 15, 2015
  7. *GG*

    *GG* Senior Member

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    So sad :(

    Will this be the straw that breaks the NHS's back? I will not hold my breath.

    GG
     
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  8. Ecoclimber

    Ecoclimber Senior Member

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    It's only going to get worse.

    George Osborne will reveal how the government plans to cut £12bn from Britain’s welfare bill when he announces a fresh wave of austerity measures in his second budget in less than four months on 8 July. The Conservatives looking at child benefit, child tax credit and disability allowances.
    http://www.theguardian.com/politics...e-july-budget-austerity-conservatives-deficit

    Conservatives plan to scrap Human Rights Act under Michael Gove’s appointment as the new justice secretary.

    Devastating impact of cuts on disabled people
     
  9. alex3619

    alex3619 Senior Member

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    This is ideology and scapegoating in my view. Its a form of divide and conquer, a very ancient political practice, not just a military one. If they can keep the public's attention on small issues, issues for which they can (unjustly) blame a minority, then the big issues that should have the government thrown out can slide right past the attention of the public. In theory its the role of the media to keep this from happening, but media locked in restricted ownership and with tight budgets for investigating can miss these issues again and again.
     
  10. mermaid

    mermaid Senior Member

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    @Research 1st
    I understand why you mention the National Hospital for Neurology because from what I have read on another thread you were on, this is one of the places where you were 'treated' for CFS as an inpatient and had an awful time.

    I am not convinced from reading their site now that they would hold on to people there with the condition as CFS does not get a mention. I am sure they would still have the same views on it, for sure, but I think they would chuck them out to somewhere else. I get the impression that inpatient treatment for CFS is actually rather rare now in the UK, though I know there is a unit in Leeds which is psych based.

    I had a different experience of the National Hospital as I went to the outpatient clinic there many times accompanying my son as a teenager. He was diagnosed with Tourette Syndrome as a child and we saw the leading expert in the condition. Interesting really as it's as invisible regarding tests as CFS is, but was fully accepted to be a real condition that could only be treated with drugs to a certain extent to help control the tics. I am sorry that you must have some bad memories of the place.
     
  11. taniaaust1

    taniaaust1

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    There will always be people out there with severe ME (till a cure or treatment is found) and if they aren't taking these into care, that means they are just abandoning them for these people can not look after themselves. We all know what they will only offer in the UK even if they take someone into care, psychological treatment. The more severe you are, the more severe they will think your "mental health issue" is. So I doubt very much things would of changed. They wont change till the views on ME/CFS are different and the illness is seen as a "real" one rather then a psych one.

    I lot of people seem to get into denial of what is going on as they don't want to believe what's happening but it is.. not just in UK but world wide in LOTS of countries. Im not sure if any country is fully safe for a severe ME/CFS person who needs to be hospitalized if they aren't under the care of a ME specialist.
     
  12. taniaaust1

    taniaaust1

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    Yeah, world wide medical shame.

    There has been at least one occasion in which I couldn't actually even walk out of the hospital. They still discharged me!!.. on discharge they got a nurse to push me in their wheelchair to the hospital taxi bay and sent me home with no help at all!!. I couldn't even walk once I got home from the taxi to my door!! I was crawling up my driveway. (this was at a time where I'd also lost my voice and couldn't get anyting out more then a whisper so couldn't even call my neighbours for help). I cant describe how horrifc this felt.. I was quite scared knowing I couldn't call out nor hardly walk at all and was just being abandoned like this.

    I managed to crawl to bed and was stuck there for a few days..no food..no water...

    (ironically they've labelled me borderline personality disorder on top of the ME/CFS diagnoses, due to getting suicidal over my situation and having "abandonment" issues. I'd really like to know how the ones who gave me that label would feel themselves if they got put into my shoes with this situation. No family help and I got abandoned for 10 years with severe ME before this label got put on me.. cause doctors here at that time didn't even tend to treat ME/CFS symptoms even if severe).

    this shameful incident is from Sth Australia where I've been trying to fight the gov for ME/CFS discrimiantion but my states disability service are excempt form the actual discrimination act!! and they can choose to deny everyone in this state who has ME/CFS disabiity services and so they do, it doesnt matter how sick you are. The only alternative here may be only possiblity a pych ward, Im hoping I don't get that sick again to find out, I'd far rather suicide then be put in a psych ward for ME.



    So true and this is my past experience of this though being I was in there a public holiday and weekend, they didn't do round, I didn't see a dr.

    They can prevent you from ringing your own ME/CFS specialist and even if you do sneakingly find a way to do that, if its like Australia and my experience, you will then be told he cant do a thing unless he's connected to that hospital as once committed (I was commited for 3 days observation due to being suicidal due to what OTHERS are doing to me), you then come under the care of that hospitals doctors and your own doctors don't have a say.

    Unlike other hospital wards. Mental health wards, the patients are all often forced to eat together. A ME patient with severe insomnia and severely reversed sleep cycle like myself. Breakfast time was only about 90mins after I was getting to sleep. So I was missing breakfast and actually lunch sometimes too trying to catch up on sleep I really needed. I accepted I'd have to miss these meals as they weren't going to hold my food till I woke up but then they told me they were going to start DRAGGING ME out of bed and up the cooridoor for meals.

    Though it goes against everything I believe in.. I never lie to doctors.. though I was still very suicidal I had to on this one occasion lie about my state of mental health to get out of that place or otherwise I would of been back to being comatose again like I used to go in the past with my severe ME (I used to go paralysed at times too, not just my legs but my arms and fingers too) and there was no way I could risk getting that bad again).

    They could of killed me if I'd stayed there so I had to get out while I still could (they even put my room by the patient recreation room, so I got no rest during the day due to the TV (they told me that I wasn't to sleep during the day when I NEEDED to sleep) and all the other patients noise and my room was right by the nurses station too. Hellish if you have severe noise sensitivity like I did at the time). The 3 days I was there, it was torture!!

    This is causing ME people to suicide, not just in England but worldwide.

    Ive said on another post there is only 3 choices if one can no longer take care of oneself if one doesn't have friends and family to do it.. . mental health ward or mental health hospital, get yourself put in jail to be looked after there (an option Im seriously considering) , or to suicide (another option Im considering).

    Here in Sth Australia cause they dont support ME people, Ive been abandoned at a state level for help and I certainly wont go into a mental health ward when I know they ignored severe ME and torture. Im going to fight the system as long as I can but then I don't know what Im going to do with only those options.
     
    Last edited: May 16, 2015
  13. mermaid

    mermaid Senior Member

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    I suspect that the cutbacks in mental health care have been a blessing in disguise for ME patients as they are less likely to admit people when they don't have the money/beds.

    Unfortunately what is on offer instead is not great either (sending in carers who are untrained and who may also be prejudiced against the condition). I have read quite recently on forums of bedbound people receiving this kind of help, and one had to deal with an abusive carer who lectured her on the fact that she was lying in bed. At best the people will be more used to dealing with elderly people and will not understand the sensitivity issues and the extent of the symptoms.

    I do get FB messages from Jessica in The World of One Room in the UK and she has recently been having severe seizures. As far as I can see she is treated physically for these, and has been taken into a normal hospital each time to help control them (father is a paramedic which must help.....), though of course the sensitivity issues make this situation very hard going for her. One wonders how things would be for her if she was on her own of course, without the wonderful support from her family.
     
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  14. sarah darwins

    sarah darwins I told you I was ill

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    Exactly. That's what it all comes down to. We desperately need a real breakthrough in biomedical research into the disease. Until that happens, I'm not sure much will change. People are saying that things are about to get worse in the UK under the Conservative government. Well, in some respects, almost certainly. But when it comes to the actual medical response to ME, I don't think things can get any worse.

    What the UK currently offers is worse than no response at all. I'm basing that on experience. For 13 years I lived in a very rural Canadian province with no specialist care and where the only GPs I met all admitted to knowing nothing of the illness. They appeared to have no official guidelines or resources to turn to. Effectively there was no response to ME/CFS.

    But my main GP there was pretty good — always willing to listen to suggestions from me and willing to try out drugs which I had read might help. Unfortunately I hadn't discovered the PR forums back then and I didn't know enough to take full advantage of that situation. I knew I was coming back to the UK at some point and, in my naivety, I thought things would be so much better here. After all, the UK had specialists, didn't it? I came back here last year full of hope. Imagine my surprise when I found out how things really are.

    We have this illusion of a "full care" response, which encourages politicians, the Department of Health, NICE, and the senior ranks of the NHS to think they're really taking care of us. It also guides GPs in very specific directions and discourages them from using their clinical judgement and experience to investigate an ME patient's particular symptoms.

    The UK's whole paradigm for dealing with ME/CFS is positively Kafkaesque. It shunts a very serious illness, and all those who suffer from it, into a parallel universe where nothing actually gets done. I'm shocked to find myself saying, one year after returning to the UK, that I was way better off in Canada with my nice old GP who started out by saying "I don't have a clue about CFS, but if you've got any suggestions ..."
     
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  15. taniaaust1

    taniaaust1

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    Im tempted to copy this article and send it in to my states disability service but if I did that they'd just say Im attention seeking as they just don't believe in severe ME.
     
  16. taniaaust1

    taniaaust1

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    The carers usually never get it unless they see you badly crash eg start staggering, collapse or have a seizure.. I get usually 1hr house cleaning from paid gov support due to another illness they do accept (Aspergers). Im expected to help the support workers while they are here (note elderly people are never expected to do that). this has put me into hospital doing this.

    My normal workers know me know but every time I get a fill in, usually it will go very wrong. eg agency sent someone covered in cigarette smoke a couple of weeks ago which made me crash. I ended up on verge of needing an ambulacne, she left me sitting about to collapse, in the wheelchair alone. . Ive fallen out of the wheelchair on two occasions due to collapse and seizure/seizure like activity.

    The issues is that often our condition isn't stable. Im walking when they first get there but can only walk for a short time and then Im in trouble. Carers really are needing to be trained in ME. Cause someone saw you walk when they first arrived (only cause I'd been resting up) .. they have no understanding that you are getting severely ill fast on doing things.
    dad being paramedic would help a lot. Ive had issues with some ambulance officers wanting me to "prove" to them that I cant walk. . I now have a letter from my doctor for them to read so that don't happen.
     
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  17. Valentijn

    Valentijn The Diabolic Logic

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    They have an in-patient ward for psychological treatment (GET, CBT) of children with chronic fatigue sydrome and other MUS in children there: http://www.uclh.nhs.uk/OurServices/ServiceA-Z/CYPS/CFS/Pages/Home.aspx

    They also have in-patient services for presumed somatization disorders: http://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/NPSY/Pages/Home.aspx

    And their general page on CFS: http://www.uclh.nhs.uk/OurServices/ServiceA-Z/INTMED/IMCFS/Pages/Home.aspx

    Though I think that's from UCLH in general, of which NHNN is a part, rather than being part of the NHNN itself.
     
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  18. mermaid

    mermaid Senior Member

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    Thanks @Valentijn my mistake.

    I did find their general CFS page afterwards but couldn't see the others, and did not see the Children's services which mentioned inpatient treatment. Of course some of these places like to relabel people according to their preference and their convenience (ie psychiatric). I knew someone this happened to at the Leeds unit.

    The childrens' treatment is always more alarming in a way, because of the danger that they will be removed from the parents' care thus putting pressure on the parents to agree to the 'treatment'. I see that they do at least mention 'pacing' on there though I know there are different versions of this.
     
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  19. eafw

    eafw Senior Member

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    The Countess of Mar, who became ill after exposure to sheep dip has been a good campaigner for people with ME.

    ETA link www.meassociation.org.uk/2015/03/23257/

    Most outpatient units are run by psychs and based in mental hospitals so the inpatient services, if any, tend to be the same. Some may be locked, some aren't.

    There is one in Leeds with 2 "CFS" beds out of 8. Not locked as such, but the others in there do have actual mental health problems and the unit does take people under section so completely unsuitable for people with ME.
     
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