Clare Norton article about how doctors dismissed her as neurotic

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Amy101

Established Member (Voting Rights)
I thought I would also post this here. A freelance journalist contacted my mum, Clare Norton, about her experiences with the NHS and How they treated both her and Merryn Crofts (her daughter and my sister).

It details how we was investigated for Munchausen by proxy etc.

Many thanks and hope it is considered ok by the ME community, the last thing we want to do is cause the community further damage with the medical profession and I apologise if this is posted in the wrong section of the site ❤️

https://hystericalwomen.co.uk/2019/...eurotic-mother/amp/?__twitter_impression=true
 
Amy101 said:
I thought I would also post this here. A freelance journalist contacted my mum, Clare Norton, about her experiences with the NHS and How they treated both her and Merryn Crofts (her daughter and my sister).

It details how we was investigated for Munchausen by proxy etc.

Many thanks and hope it is considered ok by the ME community, the last thing we want to do is cause the community further damage with the medical profession and I apologise if this is posted in the wrong section of the site ❤️

https://hystericalwomen.co.uk/2019/...eurotic-mother/amp/?__twitter_impression=true
Click to expand...

Please thank your mother for telling her story. It is so heart-breaking and she has my eternal gratitude for her continued support of the ME community. No-one should have to go through what your family has. :heart:
 
Thank you for being so brave and continuing to raise awareness; it must be bittersweet and so hard at times. Merryn will never be forgotten. One day there will be more appreciation as to what she and your family so unfairly endured.
Sadly the thread on MUS suggests that it will still be some time in coming. Thank you for staying strong for others.
 
Thank you again, @Amy101 for posting this heartbreaking story your family endured.

It is so very sad.


These are just general questions, and not posed to you:

Is this the intended goal of the BPS paradigm - to engender vilification of those with ME, and their loved ones?

If it is not, and has never been the intended goal of this paradigm, then why aren't the powers that be putting a stop to this terrible treatment?

Are they at least warning against it?

Are health workers told not to abuse pwME?

Why is there no compassion?

Why are people hounded?

Why do people die without kindness or treatment from the medical community.

Why are pwME treated so appallingly?

Are these the actual intended goals of this paradigm.....?
 
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DokaGirl said:
Thank you again, @Amy101 for posting this heartbreaking story your family endured.

It is so very sad.


These are just general questions, and not posed to you:

Is this the intended goal of the BPS paradigm - to engender vilification of those with ME, and their loved ones?

If it is not, and has never been the intended goal of this paradigm, then why aren't the powers that be putting a stop to this terrible treatment?

Are they at least warning against it?

Are health workers told not to abuse pwME?

Why is there no compassion?

Why are people hounded?

Why do people die without kindness or treatment from the medical community.

Why are pwME treated so appallingly?

Are these the actual intended goals of this paradigm.....?
Click to expand...

Hi thank you for having read the article and you pose some really interest points. I understand not posed to us but in general, but thought I’d reply with what we found too.

In Merryn’s case we found it was all based on sheer ignorance and arrogance of the medical professionals involved in the first three years of her care (that was probably founded and reinforced by the BPS paradigm). They just refused to see things any other way.

With regards to the lack of compassion and kindness, that just goes to the staff they hired and the attitudes that medical professionals have towards chronic long term conditions. My friend’s sister (who doesn’t have ME but has another condition which is poorly understood) faces many of the same issues.

We were told by a good doctor how many medical professionals blame the patient if the condition is long term or complex because doctors don’t like accepting they cannot just fix the situation. So it’s easier to just blame the patient and vilify them, so their ego doesn’t bruise basically.

It is also important to note here my mum had a limited word count. She wasn’t able to mention that in the last three years, Merryn received excellent care from a different hospital who couldn’t believe the state the previous hospital/professionals had allowed her situation to get to. They never fully understood ME but seeked to and listened to us. Also, her hospice doctor who took over her care for the last year of her life whilst she was at home was incredible. She has since researched PACE etc and is communicating with GPs of ME patients now to help educate and so on.

So a lot to do with kindness and care is based on their ability to empathise which we found was, shockingly, to do more with the culture bred within the hospital. Some wanted to learn and expand knowledge and understanding, some refused to believe anything could exist that they’d not heard of and so refused to bother to learn.

In our opinion, the BPS paradigm is starting to (very very) slowly crumble around them as more science and evidence is being made available (we think this is also why Sharpe and so on have gone on such a little media spree lately, to try to save face when they know it’s on the verge of falling apart in the future). It now has to break down the very rigid care offered by some doctors who just won’t accept anything they can’t understand
 
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Thank you @Amy101 for telling more of your family's experiences with both a caring, and an uncaring medical system.

Thank you to you, and your mom for being strong and continuing to educate about this terrible social/medical crisis that has so deeply and tragically effected your family. The BPS model does seem to be losing its stranglehold on pwME and their families.

Thank you for being a member here. I wish you and your family all the very best.
 
Thank you.

I'm preparing a formal complaint to the DHSO regarding the cross government Final Delivery Plan which will cover all issues in ME, CFS, CFS/ME and ME/CFS, as much as I can. It is not intended to include all relevant evidence over the last 30 - 40 years, just enough to make a prima facie case at this stage.

Would the family like me to include this article, as part of the evidence in support of the complaint?

Obviously, the Westminster and Commons debates which Carol Monaghan MSP organised, are already included and I know Merryn's name has been recorded in the Hansard record of the commons debate by her MP.

This does not mean that the family will be contacted regarding my complaint. I can't imagine how you cope as a family every time you're reminded, but then I'm sure Merryn will never be far from your thoughts anyway.

When, I've submitted my complaint I intend to create an advocacy thread here, with the complaint, covering letter, and responses.

I'm unable to cope with social media due to cognitive issues, or I wouldn't be capable of drafting this complaint at all. I'm only in this forum.

Going forward, if I do not receive a full and adequate response to my complaint - timeframe is 28 days from receipt of the complaint- then I shall be requesting an MP to chase it up, a further 28 days.

At the end of which time, if I've heard nothing I shall ask the MP to forward the complaint and response, if any, to the Parliamentary and Health Service Ombudsman for review.

Their current wait times to make a decision as to whether I've presented enough information, and grounds for them investigate are at least:

Important information about current wait times
We are sorry that it could take some time before we can look at your case.

Current wait times are:

  • up to seven months for complaints about the NHS
  • up to four months for complaints about UK Government departments.
Click to expand...

As mine is both, and including the DWP and DfE, I don't know how long it will take to find out if the PHSO will proceed with a full investigation.

That's why I'm giving the DHSO 2 months only to respond to my urgent complaint, and then I request a referral to the PHSO regardless. It is a large complaint, but they already know about most of it because of the public consultation, so claims any claims by these government departments that they need more time to investigate will not hold water at this stage.

Here's an example of the work of the PHSO https://www.ombudsman.org.uk/sites/...g-patient-safety-more-than-just-a-promise.pdf
 
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