Dear Department of Health,

Have any studies , questionnaires, surveys been executed to evaluate the (female) PATIENT EXPERIENCE of Pelvic Organ Prolapse in the UK? (Uterine, Cystocoele, Rectocoele, Enterocoele, vaginal vault prolapse ...)

Regarding:

Symptoms, & resulting problems that affect work and life, (Medical aspects - pain, discomfort, reduced or loss of love (sex) life, continence, inability to void rectum), (resulting problems - loss of job, financial problems, problems obtaining benefits, depression, isolation / affect on general well-being and mental health, especially the elderly, (this is a hidden, humiliating & tabu subject that people have to keep to themselves, as nobody wants to hear about it, even children, partners) etc etc.

Diagnosis,problems with,

Referral pathways, (are they clear, does the patient go around in circles and meet conflicting attitudes, opinions and information?) Conflicting attitudes to having an operation - one half says go for an op - they are usually successful, the other half says, avoid an op - it can make things far worse - nerve damage, scar tissue = affecting sex life and continence even more).
WHO on EARTH do women belive, what information should we go with?

Some GPs are glib or dismissive. Some Consultants don't tell you ANYTHING.

Attitudes of all medical professionals involved, GPs, Consultants at hospital clinics, Surgeons, Women's Health Physios, Continence Clinics, willingness to impart sufficient information for the patient to make informed choices about conservative management or whether or not to have an operation, are they informed regarding all options?

Are ALL women on the receiving end of too little information, conflicting information, unclear pathways, and patronising attitudes from SOME GPs and Consultants?

What is the pathway supposed to be? What professionals are we supposed to see? What information are we supposed to get? Why are ordinary patients thought too stupid to be directed to the latest research or discoveries / devices?

Is the patient experience / patient opinion / patience choices important to the NHS, or NOT?

Is patient awareness important to the NHS, or not? (No information about Rectocoele, Enterocoele, Cystocoele on NHS Choices).

Where is the official information patients should be reading?

Should women be treated as if they should "leave it ALL to the professionals" and not bother to educate themselves about their problem and their options?

The only places where women get SOME REAL understanding are the Women's Health Physios, and Contincnce Nurses?

Is a review of the plight of women with POP to take place?

Thank you,

Yours faithfully,

[P. Smith].

Dear Department of Health,

Re: "You asked for your correspondence to be considered under the Freedom of Information Act. However, as you requested general information, rather than recorded information or documentation, I should advise you that on this occasion we have not considered your correspondence under the provisions of the Act."

Surely you must hold documents that reflect the subjects in my questions? Or is there even less information available than I thought about pelvic organ prolapse?

"The treatment of any woman must depend on her individual condition and circumstances. There will usually be clinical options and choices that should be discussed between the woman and the clinician providing care. Care pathways and treatment options are developed by clinicians. Any patient receiving care in the NHS who is not content with their treatment and management has the option to seek further explanation or to complain through the NHS Complaints Procedure."

Women shouldn't HAVE to complain. All to often their experience is a finger up cough and no explanation, no information, no treatment / care pathways explained at all. We are supposed to be psychic. The information pamphlets available to women are aimed at a 4 year old, with too little information in order to make informed choices regarding conservative management or operations. Either that ot we have to surf the net and find extremely technical / medical reports, or we come upon websites where you have to be a member and you are barred from reading reports. I have written to RCOPG toi ask why there is so little information for patients on their web site. I typed in rectocele /rectocoel on their web site and came up with nothing. Yet when you type in AWARD pages and pages and pages come up. Where are the priorities? The irony and insult then is aimed back at us "women don't like to talk about it" WHAT?

"Professionals involved in the management and treatment of women with urogynaecological problems realised the importance of the specialty and the British Society of Urogynaecology (BSUG) was founded in April 2001 following a request from the Royal College of Obstetricians and Gynaecologists (RCOG) for an urogynaecology society which might assist the College in matters pertaining to the subspecialty. The Society now has over 200 members both Full (Consultant) and Associate (non-Consultant)."

That's all very well if you are part of this specialist professional CLUB - but what does that do for patients? Most of the leaflets on their web aite (unless I missed something) were about post-op issues?? They didn't help the woman decide pre-operatively.
How many members of RCOG are men, how many are women? Same for BSUG? If these esteemed club members had to go about life with a several pound weight pressing on and distorting their excretory organs and sexual equipment, maybe they would do more research, consult more women patients and come up with better treatment / conservative care options.

"The Society's main function is to set and raise standards by providing guidelines, training, research and clinical meetings (in conjunction with the RCOG)."

Well I wish and hope they would. Please prove me wrong.

"Bsug.Net (http://www.bsug.net/) is an online database tool provided by the BSUG committee to gather data relating to this subspecialty for the purposes of providing the BSUG members with statistical reports which aim to raise the standards of care and understanding for this field."

BSUG members only? Can women with POP join? Why isn't the information about POP - which affects so many women and makes their lives miserable - freely available to them?

"The NHS Choices website provides information on prolapse, including symptoms, causes, diagnosis, treatment and prevention, as well as useful links."

Where? Does it actually talk about enterocoele / enterocele, cystocoele / cystocele and rectocoele / rectocele now? Last time I looked it was only about uterine prolapse, although I have written to them asking why these were excluded.

Many thanks,

Yours faithfully,

[P. Smith]

Dear Department of Health,

Re: "Any patient receiving care in the NHS who is not content with their treatment and management has the option to seek further explanation or to complain through the NHS Complaints Procedure."

How would a patient know what standard and type of care she is SUPPOSED to receive for this condition, if she has nothing to compare it with, no information provided to her at all?

Patients hear so many different opinions, (especially re having an op. or trying hard to avoid an op.) they are very confused, and in the dark.

Yours faithfully,

[P. Smith].

Dear Department of Health,

Any chance of a response?

Thank you,

Yours faithfully,

[P. Smith]

Dear Department of Health,

Re: "Any patient who has physical symptoms or discomfort that distresses them should seek medical advice. The Department of Health would expect a medical professional to examine the patient and explain the condition both verbally and where appropriate with the use of leaflets prior to discussing the possible options for management and treatment."

This depends on GP training re pelvic organ prolapse itself, AND how it feels - the patient experience and effects on her life, and the treatments, conservative options, operations (and their success rates and side effects), and it appears to be patchy, sometimes good, sometimes utterly WOEFUL.

A comsultant can just quickly examine the woman and not even tell her what the problem is, and give her no explanation or info. at all. Is this good enough? Is this NHS standard of care for POP?

When a woman does report pain, discomfort & affected excretory and sexual function due to prolapse she is treated as if this is something to be endured / stoical about, as if it's just another "woman problem" like periods.
If a woman were to report to a GP with period pain, she would be given some understanding and sympathy AT LEAST, and possibly prescribed the pill, or some other solution, with prolapse she gets no such thing, even though the pressure and pain are constant, poss. worse on sitting or standing. The effects on her continence, comfort, ability to work, and sexual function, quality of life, are not appreciated / downplayed.

With working women expected to put off retirement to 67 or whatever, and the menopause starting around 45 - ish, this is a lot of time to have to be stoical and endure at work. How does a woman who has difficulty evacuating her bowel, and with sitting and standing function in the workplace?

There is still negligible and conflicting advice for women re pelvic organ prolapse. It is still a neglected area. It is still downplayed and too little understood by too many GPs, who glibly suggest an op. as if that is an easy, definitiive, effective long term solution - which it IS NOT. The op. can have side effects which affect continence and sexual function even worse than from POP itself. The problems with mesh are now well-documented, yet a nurse will still helpfully say words to the effect: "they just put a bit of mesh in and bingo".
Even some consultants are getting the diagnosis wrong. Proper diagnosis is taking too long.

Obtaining patient experience is crucial, but it appears that women, especially menopausal ones are not important to the NHS.

It seems that it is not important to understand the issues around POP.

How long should a woman who is e.g.: experiencing problems evacuating her bowel and with sexual function, and who is in discomfort / pain, and who has maybe had to leave work, expect to wait for a proper diagnosis, whatever that is (whether gynaecological or gastroenterological?) How many months, years?

I am writing this on behalf of the MANY women suffering with POP, who have been let down, almost scorned in some cases, by the medical profession.

Yours faithfully,

[P. Smith].