Why is Pelvic organ Prolapse not on NHS Choices or NHS Direct (?) but wind, nits and knock knees are?

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Dear Department of Health,

Why is Pelvic Organ Prolapse (POP) NOT on NHS Choices or NHS Direct (?) but wind, nits and knock knees ARE?

Who decides what's out and what's in?

Who authors the articles / information?

If DWP Benefits Officers or ATOS WCA Assessors do not have knowledge or experience of female patients with Pelvic Organ Prolapse and the effects of POP on a woman’s life and their functional ability, to whom or to what information source do they refer in order to come up with an informed decision or report?

If it is to NHS web sites, a client does not have any chance of receiving a fair decision, because the information IS NOT THERE. Please see below.

It plainly indicate here in this research trial summary: http://clinicaltrials.gov/show/NCT00158626 just how fundamentally women are affected by Pelvic Organ Prolapse.

YET: Searches on NHS DIRECT:
Found POP (mentioned only) under Joint Hypermobility: Pelvic Organ Prolapse. (But not as a subject in itself)
http://www.nhs.uk/conditions/joint-hyper...
This gives a reference to Prolapse of the Uterus (BUT NOT cystocele or rectocele or enterocele.)
Prolapse of the Uterus: http://www.nhs.uk/Conditions/Prolapse-of...
http://www.nhs.uk/Conditions/Prolapse-of... - (see women’s responses to the article).

or: NHS Choices:
NHS Choices INCLUDES CONDITIONS SUCH AS: nappy rash, nits, wind, knock knees, but NOT Pelvic Organ Prolapse - which is a distressing and fundamental structural problem which severely affects quality of life and can radically negatively alter and limit a woman's life, and which is painful, embarassing, humiliating, inconventient and difficult to manage, and for which there is no panacea. It's an astounding oversight.

It can affect e.g.: sitting, standing, and continence (Cystocle = urinary incontinence or Rectocle = obstructed defaecation.) Some women have a combination of these problems.

A search on NHS Choices for "Pelvic Organ Prolapse" - reveals only: "Prolapse of the Uterus".
A search for Rectocele, Rectocoele or Rectal Prolapse - nothing.
A search Enterocoele, Enterocele, comes up with - nothing.
A search for Cystocele reveals: an entry under bladder stones, even though cystocele is a subject in itself under POP.
http://www.nhs.uk/conditions/bladder-sto...
A search for bladder prolapse takes you to Prolapse of the Uterus. It’s a misleading mess.

Maybe the information is there but under some other terms?

COMMENT: The NHS Direct and NHS Choices sites do not adequately address Pelvic Organ Prolapse at all, nor do they plainly inform women re: what the different forms of / combinations of types of POP are. POP is a REAL fundamental problem with NO guaranteed solution, and is neglected by NHS itself, and their information web sites. There is no panacea. Operations often need repeating, or go wrong. It is a form of discrimination against women that it is not explained properly and not taken seriously by NHS on their web sites - or by GPs - and the attitude seems to be that it is just a "Women's problem" and that women have to be stoical about and bear it (just as they do periods, PMT, meniopause etc etc. ), even if it means women have to either change or lose their jobs because they are either incontinent or just cannot pass solids at all without digitation (fingers), or cannot sit down, stand or lift, or marriages break up because of it because of a difficult, embarassing, painful or impossible sex life.
Many women are leading miserable lives because of it, and yet are not taken seriously. It is not usually life-threatening, but is severely life changing.

Pelvic Organ Prolapse needs to be included in NHS Choices and NHS Direct web pages in its own right, as an umbrella heading, then clearly stating which organs can be involved (it's not just the uterus, as NHS choices seems to be saying) and in what combinations, properly explained, and the effects of this on a woman's personal functioning - sex life, obstructed defaecation, incontinence, etc. Prolapse of the Uterus AND Rectocele, Cystocele, Enterocele etc. need to be named and explained clearly.

Having clear information on NHS web sites will make up for the fact that information and help for POP in different areas in UK is a post code lottery too.

This affects many women, and can happen to ANY one of us.

Yours faithfully,

Pat.

(On behalf of ALL women in UK who have been very poorly served by GPs , and their problems treated as negligible by the NHS in this regard.)

Department of Health

Dear [P. Smith],

Thank you for contacting the Department of Health.
I am sorry but we are unable to treat your correspondence under the
Freedom of Information Act, as your request is not for recorded
information.

Advice on how to make a Freedom of Information request can be found on the
ICO website at the following address:

[1]http://www.ico.gov.uk/for_the_public/off...

However, you are able to feedback to NHS Choices via its website. Thus:

* Go to www.nhs.uk
* Click on 'Contact' (at the very top of the page)
* That will take you to page entitled 'Feedback'
* At 'Select your type of enquiry', click on NHS Choices website
* Click on 'Next'
* At 'Select your type of enquiry', click on 'Website content'
* Click on 'Next'
* That will take you to 'Select and area of the site'
* Click on 'Conditions and treatment information'
* Scroll down the page and fill in the 'Comments' section (maximum
length, 1500 characters)

I trust that this is helpful.

Yours sincerely,

Jamie Scott

Freedom of Information Officer
Department of Health

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Dear Department of Health,

Thank you for your response, but please could you tell me:

Who decides what's out and what's in?

Who exactly authors / edits the articles / information?

Yours faithfully,

[P. Smith]

Department of Health

Thank you for contacting the Department of Health.
This is an acknowledgement - please do not reply to this email.
Where a reply is appropriate we aim to send one within 20 working days.
If you have contacted the Department of Health about a current health or
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response may have been published.

If your enquiry is about a medical matter, please contact NHS Direct on
0845 4647 or visit [2]NHS Choices, or contact your GP surgery.

For general health information you may also find it helpful to refer to
[3]Directgov, the UK Government’s Official information website, or the
Department of Health website’s [4]Frequently Asked Questions. 

Please note that the Department of Health does not process complaints
about the NHS or social services. If you wish to make a complaint about a
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Our ref: DE00000648702 
 
Dear Ms Smith, 
 
Please see attached the Department of Health's response to your Freedom of
Information request.

Yours sincerely,
 
Jamie Scott

Freedom of Information Officer
Department of Health
 

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Dear Department of Health,

I checked the NHS Choices web site today, and uterine prolapse is listed, but that's ALL, STILL.

Why isn't there an umbrella heading "Pelvic Organ Prolapse" with the various types listed - at the very least. Women need to know that they are not alone with their rectocoele, cystocoele, enterocoele, or vaginal vault prolapse (as well as uterine prolapse.)
They need reliable information, as there is still no proper lasting solution to this - the operations often fail or have side effects and make the problems even worse.
Why is obstructed defaecation seemingly not a problem? It is scarey, distressing and uncomfortable / painful for many women.

Types of prolapse often occur in combination. They can be troublesome and very distressing and affect excretion (no 1 AND no 2s) and sex life. Not to mention often uncomfortable and painful.

Don't these women count?

Yours faithfully,

[P. Smith]

Department of Health

Dear [P. Smith],

I can confirm that the Department has received your request for an
Internal Review of a Freedom of Information request (Our reference:
DE00000648702).  This is being processed by a member of the Freedom of
Information team, who will respond to you in due course.

Yours sincerely,

Jamie Scott

Freedom of Information Officer
Department of Health

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Dear Department of Health,

(Thank you to WhatDoTheyKnow subscriber Anne for this link.)

Are these devices to be available on prescription, to alleviate the utter misery suffered in helpless silence by many women with a rectocoele?

http://www.nursingtimes.net/home/clinica...

http://www.mdti.co.uk/images/stories/doc...

Yours faithfully,

[P. Smith]

Department of Health

Thank you for contacting the Department of Health.
This is an acknowledgement - please do not reply to this email.
Where a reply is appropriate we aim to send one within 20 working days.
If you have contacted the Department of Health about a current health or
social care campaign, please visit the [1]Department's website where a
response may have been published.

If your enquiry is about a medical matter, please contact NHS Direct on
0845 4647 or visit [2]NHS Choices, or contact your GP surgery.

For general health information you may also find it helpful to refer to
[3]Directgov, the UK Government’s Official information website, or the
Department of Health website’s [4]Frequently Asked Questions. 

Please note that the Department of Health does not process complaints
about the NHS or social services. If you wish to make a complaint about a
healthcare professional, an NHS organisation or a social care provider,
please visit the '[5]Making a complaint' page on the Department's website.

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http://www.dh.gov.uk/en/FAQ/index.htm
2. http://www.nhs.uk/
3. http://www.direct.gov.uk/en/index.htm
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5. http://www.dh.gov.uk/en/ContactUs/Compla...

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Dear Ms Smith,

Please find attached the Department of Health's response to your request
for an internal review.

Kind regards
Lisa Quarrell

(See attached file: FOISmith.pdf)


[P. Smith]
<request-88080-07
7810e8@whatdothey To
know.com> FreedomofInformation/OIS/DOH@DOH
cc
07/12/2011 08:03
Subject
Internal review of Freedom of
Information request - Why is Pelvic
organ Prolapse not on NHS Choices
or NHS Direct (?) but wind, nits
and knock knees are?





Dear Department of Health,

I checked the NHS Choices web site today, and uterine prolapse is
listed, but that's ALL, STILL.

Why isn't there an umbrella heading "Pelvic Organ Prolapse" with
the various types listed - at the very least. Women need to know
that they are not alone with their rectocoele, cystocoele,
enterocoele, or vaginal vault prolapse (as well as uterine
prolapse.)
They need reliable information, as there is still no proper lasting
solution to this - the operations often fail or have side effects
and make the problems even worse.
Why is obstructed defaecation seemingly not a problem? It is
scarey, distressing and uncomfortable / painful for many women.

Types of prolapse often occur in combination. They can be
troublesome and very distressing and affect excretion (no 1 AND no
2s) and sex life. Not to mention often uncomfortable and painful.

Don't these women count?

Yours faithfully,

[P. Smith]

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Dear Department of Health,

Re: "However, very few women would know to search for ‘pelvic organ prolapse’ unless they had been told that they have the condition by a professional. As for cystocoele, rectocoele and enterocoele prolapses specifically, these are medical terms and the patient would not usually be aware of these terms or know which of these conditions they had unless they had seen and been examined by a gynaecologist, in which case the gynaecologist would be expected to have given a full explanation of the condition and related issues."
There is a massive assumption here about women and you have FAR too much faith on the professionals that we patients meet.
Where is your proof of the patient experience, and state of patient knowledge of POP? What patient surveys inform your opinion?
This is an incredibly patronising and discriminatory attitude against women. Please read your response to me again, and try to see it through my eyes. How do you know that very few women would know this? What is your evidence please? If so, WHY don't they know - perhaps because of a widespread LACK of official useful information on this grossly neglected cinderella in-the-closet topic.
I was open-mouthed with incredulity reading this response. I thought that the NHS was more aware now of the need for patient information and awareness, and more aware of PREVENTION.

I know for a FACT that the patient experience can be; a finger up, cough, and NO EXPLANATION AT ALL.

I have heard a urogynaecologist say that he tells his trainees that if a woman presents with the beginnings of a prolapse NOT TO TELL HER so she doesn't worry. This is a terrible attitude. Women need to know to do their preventative pelvic floor exercises.

POP affects continence / ability to void, and sexual function and is uncomfortable, difficult to manage, and can be painful, thus affecting relationships, ability to work (or do certain jobs), and social life, ability to travel, confidence, etc. Even sitting down for any length of time can be painful.

If a woman has the beginnings of a POP, she should know, so she can begin pelvic floor exercises, or seek help with Women's Health Physios, or local Continence Clinic.

"Prolapse varies from very minor to very severe and debilitating, and every case must be assessed individually as to the effect on the woman. I am sure you will appreciate that no matter how much information was on a website, it could not be applied to any individual case without a medical assessment. Any women with a medical problem such as this should see and be assessed by a gynaecologist."

You need to know that even a stage 1 proplapse involving cystocoele, rectocoele and descent of the cervix can be uncomfortable, cause feelings of pressure, make sitting painful, affect the local nerves adversely, and make voiding the contents of the rectum impossible without straining, digitation or splinting. Straining making it progressively worse. If a woman doesn't get the help or management advice she needs, it will get worse in this way.

Having a prolapse is a very lonely, depressing, isolating and distressing experience. There are no UK support groups, to my knowledge. Women are kept in the dark and just expected to get on with it. As you must know, the operations are no guarantee of lasting remedy, and can have side effects that can make things even worse. Managing a rectocoele, (not being able to pass no 2s without splinting or digitation for example is horrendous, and just knowing about a FEMEEZE or rectal irrigation technique could make a difference for some women, but the information IS NOT out there. As "little women" it appears we are just supposed to stoically get on with it or psychically know what to do.

I have heard that some Continence Clinics face the chop. The Women's Health Physios and the Continence Clinic Nurses are the only places where women get ANY REAL appreciation and understanding of the horrible associated problems. They know what a cindarella subject this is.
Attitudes like your perpetuate this state of affairs.

There could be at least the umbrella heading of Pelvic Organ Prolapse, on NHS Choices, as a signpost, and then the different types of prolapse listed, and some useful web site addresses / latest research and management news. If NHS choices cannot provide it, you need to signpost women to someone who CAN.

"With regard to the content of NHS Choices and its use by members of the public or health professionals, I should explain that information provided on the NHS Choices website is regarded as ‘health and well-being information’ made available for the general public. It does not provide medical direction on the course a member of the public should take when seeking information on a specific condition and should not be taken as such."

??????? Why bother with it at all then, if it is just to be a token gesture?

Yours faithfully,

[P. Smith].

Department of Health

Thank you for contacting the Department of Health.
This is an acknowledgement - please do not reply to this email.
Where a reply is appropriate we aim to send one within 18 working days.
If you have contacted the Department of Health about a current health or
social care campaign, please visit the [1]Department's website where a
response may have been published.

If your enquiry is about a medical matter, please contact NHS Direct on
0845 4647 or visit [2]NHS Choices, or contact your GP surgery.

For general health information you may also find it helpful to refer to
[3]Directgov, the UK Government’s Official information website, or the
Department of Health website’s [4]Frequently Asked Questions. 

Please note that the Department of Health does not process complaints
about the NHS or social services. If you wish to make a complaint about a
healthcare professional, an NHS organisation or a social care provider,
please visit the '[5]Making a complaint' page on the Department's website.

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Communications via the GSi may be automatically logged, monitored and/or
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4. http://www.dh.gov.uk/en/FAQ/index.htm
5. http://www.dh.gov.uk/en/ContactUs/Compla...

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P. Smith left an annotation ()

The NHS Choices pages at last now includes more information re POP, and it is easier to find out re the different types of POP on there.

http://www.nhs.uk/conditions/prolapse-of...

Davis left an annotation ()

dear Department of health.

Your robotic replies are dismissive, and utterly ignore the content of the messages and complaints and a total failure of a responsie.

You forget your are a service to the Public, and not the other way around.

You are paid for by the people of this country, and as such those people have rights to full and adequate services and given that women are the majority of the population and that this is a democracy, if women request and require that prolapse is properly fixed and information and services fully available then that is what must be provided.

You are a paid for service by us the paying citizens of the country and your replies to such complaints are utterly unhelpful and seeming purposefully unnformative.

May we remind you of your duty of service to the public who pay for yor wages and for the system that is in place becauEe of the shareholders who pay for it.... The citizens of Great Britain.

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