Proposed letter to the GP I saw most recently

[ailbhe]

My address, surgery address, date

Dear Dr,

Today I received a letter from the appointments dept at the Royal Berkshire Hospital, informing me that it will be approximately 4 months until I can see the gynaecologist, Mr Gynaecologist, about the birth injuries I sustained delivering my daughter on 30 April 2004 and the repair surgery I had in December 2004. My husband called to ask whether I could have a short-notice appointment if there was a cancellation, and was told that there is no system in place to deal with such a situation.

This means that it will be almost a year after my Fenton’s Procedure before I have an appointment with the surgeon to find out what the surgery failed to correct and whether there is a need for further surgery. This is intolerable.

I have attached a timeline of my medical treatment thus far.

Possibly I should have chased my physical care more assiduously. However, the birth also left me with considerable psychological damage, which made following up the physical damage particularly traumatic. I still cannot enter the RBH alone as I get panic attacks and an uncontrollable urge to leave. The maternity wing, in particular, makes me so frightened that I am nauseous feel the urge to throw up, even when accompanied by my husband.

My baby is over 15 months old. It was clear at the time of the birth that I had sustained considerable injury. It was clear at my first postnatal appointment that I needed repair. I am still unable to use a tampon, to have penetrative sex – and therefore to get pregnant again – or to go more than two minutes’ notice from a toilet. I cannot walk more than a very few miles without excruciating chafing as parts of my vagina bulge against my clothing. I cannot defecate without something on which to rest my feet, a pad with which to press my vaginal wall, and something to hold onto while I strain – even when not constipated. Even with all this, I cannot fully empty my bowels as there is always a feeling of something left.

I appreciate that one must expect some discomfort following childbirth. I appreciate that most women suffer urinary incontinence for years, or even for life, after pregnancy and childbirth. I do not accept that, at 30 and 26 years old respectively, my husband and I are condemned never to have sex again, never to have another child, and never to go for a countryside walk.

Please advise me as to what I can do next to get some effective treatment.

Ailbhe Leamy

---

The following is an outline of my medical treatment so far:

Birth:

• 30 April 2004: I delivered my daughter in theatre, more than 30 hours after admission to hospital, sustaining a 3rd degree tear and losing in excess of 450ml of blood. I had a syntocin induction and an epidural, and she was delivered with a ventouse. I was discharged from hospital 5 days later after receiving 3 units of blood.

2 months:

• Approximately 7 weeks later: I saw Ms Ob/Gyn at the RBH for my postnatal check-up. She referred me to Mr Gynaecologist as my stitches had torn and the wound was not healing – it was getting worse.

5 months:

• 13 September 2004: Mr Gynaecologist agreed that the level of pain I was in wasn’t tolerable and needed to be fixed. Because I was breastfeeding, he insisted that I take a course of topical HRT before surgery. He also described my fecal incontinence as “sinister” and referred me to Mr Colo-Rectal Specialist.
• 27 September 2004: Dr Other-GP prescribed me a course of 30/500 Cocodamol for the day to day pain I was in and referred me to Ms Counsellor for counselling.

6 months:

• 21 October 2004: I saw Mr C-R Specialist, who told me never to have another vaginal birth no matter what. He decided to examine me under general anaesthetic at the same time as my gynaecological surgery.

8 months:

• 14 December 2004: Perineal reconstruction and rectal exam under general anaesthetic. Overnight stay due to delay of surgery for unspecified reasons.

9 months:

• 07 January 2005: Codeine withdrawal: diarrhoea, nausea, headaches, for two or three days.
• 10 January 2004: Ms Ob/Gyn met me again to discuss the traumatic birth. She agreed to chase the notes about my surgery as I had heard nothing from either attending surgeon, not the gynaecologist or the colo-rectal specialist. Ms Ob/Gyn subsequently wrote to me and to Dr Other-GP to say that Mr C-R Specialist had found a “gap in the anal sphincter between 10 and 12 o’clock, and a large associated rectocele”. I had to look up “rectocele” on the internet as Mr C-R Specialist didn’t give any explanation of what one was. I still do not know how large or important the gap in my anal sphincter might be.

> 12 months:

• Summer 2005: Dr Other-GP did a vaginal examination and determined that the rectocele was still causing me significant pain on penetration, and referred me to Mr C-R Specialist, who refused to examine me without a general anaesthetic as I was unable to relax enough.

15 months:

• 08 August 2005: Admitted to day surgery for Mr C-R Specialist: Rectal exam under anaesthetic to see why the pain persists; conclusion as yet unknown; I will have a follow-up appointment in "a few months".
• 09 August 2005: Letter from Mr Gynaecologist’s appointment system to say that I can have an appointment in 4 months time.

Comments

[murphymom.livejournal.com]

Yes - well written, and, if this doesn't get you a speedy response, well, I don't have words sufficient for the outrage.

[griffen.livejournal.com]

What she said. Oy.

[livi-short.livejournal.com]

*Hug*

We take some body functions for granted so much that people don't realise how soul destroying it can be when they don't function.

I hope that BUPA are an option that you can chose and that they sort this out soon.

[rosefox]

I think you should copy this to all the doctors you've seen in this time period, or at the very least the four or five most likely to be able to get anything done and especially the ones who have been most sympathetic.

Best of luck. Go give 'em hell.

[datagoddess.livejournal.com]

Seconded. Include the counsellor on that list, too.

Re: Proposed letter to the GP I saw most recently

[pir-anha.livejournal.com]

very well written. tiny correction: you're not "nauseous", you're nauseated.

i'm wondering where else you could send this so that somebody higher up gets the fuck off their keister and DOES something. words fail how i really feel about this. *grump*.

[richtermom.livejournal.com]

I just don't think they understand. They probably don't understand that you've been trying to carry the baby around and/or chase the baby around this whole time, that you haven't been able to just lounge around eating bonbons, and that while the emotional issues are definitely going to need to be dealt with, the physical issues MUST be addressed ASAP. I cannot believe they haven't performed a more invasive study because it really sounds like some of the structural ligaments were totally rendered during the birth. I'm not a doctor or anything, but WTF can they find by looking rectally and vaginally if it's this extreme? I'm just getting upset thinking about this situation. Christ.

Inappropriately vulgar humor warning: I'd have to say, though, that not being able to walk a couple miles without extreme chafing is fairly common here in the States, but it's because we're so damn fat.

[ailbhe]

I was appalled to find that a 6 mile walk wasn't possible for me. Absolutely appalled. It's something I took for granted - 10-15 miles in a day isn't much, unladen. I just wanted to bring my baby on a fun outing.

[richtermom.livejournal.com]

I've taken squeaky on like one six mile hike, and that was purpose-driven, to distribute drafts of homes tour descriptions to the different homeowners. The girl was VERY patient and good, and we took frequent breaks at playgrounds. We often go on 1-2 mile jaunts, even just out to dinner. I don't drive, and some nights it's just too nice to take the bus.

Of course, my husband has to drive to the closest stores, 2 blocks away.

I just wonder if there's a patients' advocate somewhere that can help. Heavens....

[ailbhe]

I tend to put Linnea in the buggy for the walk to the shops, a mile away - it's safer than letting her walk. It's easier to walk than get the bus, though.

[richtermom.livejournal.com]

We have a very fun couple of games for when Squeaky isn't in the buggy.

Stop and Go -- Every once in a while yell out "STOP!" and both of you stop. Then both of you together say "go!" and you start. Just to be wacky, I occasionally yell out "reverse!" and start going backwards.

Wall! -- Waiting for the bus on a busy street, rather than nagging to keep her away from the curb, I'll occasionally call out "WALL!" and we try to race each other to the wall.

Whee!

[barakta]

I agree with rosefox and CC this to plenty of people.

I doubt half of them will read it (I am a cynic for a reason) but it will be in your medical notes and they cannot deny that it was sent. For the ones that you CC it to, write a short covering letter to NamedDoctor explaining why you have CC'd them in, even if it's just "for your information".

That letter is really good; concise while explaining exactly what the problems are. If that doesn't get you somewhere then you are in the legitimate complaint to your local health trust (PCT) because you have been passed from A to B to C to D without proper information or treatment.

While you are at it, it may be worth seeking a quicker appt with the colorectal guy because he will have that information already. If they cannot give you an appointment ask for a report to be sent to your GP so you can at least contact the GP and find out what the hell is going on there.

[barakta]

That was rosefox I was referring to above.

[kalmn.livejournal.com]

i think that you're now at the point where were you in the united states and we had state-run medicine, i'd be calling my senator. (barakta mentioning the PCT makes me think of this.) is there a governmental place up the line that you could kick this to?

[baratron.livejournal.com]

Your Member of Parliament. Some MPs are brilliant at cutting through red tape on behalf of their constituents; others don't give a flying fuck.

In the current time, it's worth trying any MP who's not one of Tony's Cronies. It's best if your MP is a Liberal Democrat, female, or a doctor, but even the Tories can sometimes be nice people.

[barakta]

Local councillors can sometimes be good if MP stinks. It's a matter of choosing which is the least crap in many cases. I would definitely advise ailbhe to do that if this push to the GP gets nowhere, or nowhere fast enough.

[the-warwick.livejournal.com]

I'd certainly have a go at letting my MP know. I've been pleasantly surprised at the discourse I've had with my MP and he is fully aware that I didn't vote for him.

[feetnotes.livejournal.com]

clear, concise and tightly focused upon the points leading up to your very clearly and very simply-expressed question - do cc. it as suggested. (you might want to clarify that no reason for the 14th december delay has been given to you, either at the time, or since - though this is "merely" symptomatic of what appears to be a catalogue of delays, misunderstandings, and mistakes.)

if it gets no meaningful - and acceptable to you - response within ten to twelve working days, i'd urge the two of you to consider writing to your local m.p. attaching a copy (plus copies of whatever responses you have received) asking whether s/he might be able to help get things moving in the right direction, and at a pace noticeably above that of a severely constipated snail.

[artela.livejournal.com]

Seconded.
And if you do need to resort to your MP also copy in the board of local hospital trust that you're being treated under and the Ombudsman in charge of health services (details should be available from your local CAB).

[submarine-bells.livejournal.com]

My suggestion, for what it is worth, is to send a variant of this letter to both your local MP, and whoever the person in charge of the health system is (Minister for Health? Something like that?). Also, have you considered legal action? Possibly the threat of it at the very least might help move things along somewhat. It can't hurt to at least have a chat with a solicitor and find out what your options might be, if you get no joy from the MPs.

It's probably not an option you'll favour, but there's always the possibility of going onto the Sensationalist Current Affair Show of your choice with your story, and getting lots of "Shame, shame, shame!" comments uttered on national TV by the current affair reporter. :-)

[jennyaxe.livejournal.com]

What everyone else said. My thoughts are with you.

[radegund.livejournal.com]

I am very angry on your behalf. Most of the doctors you've been dealing with seem to have detached themselves entirely from the notion that patients are PEOPLE, with LIVES that they have to LIVE every DAY. Excuse the shouting. Hugs, and rage. And I support the suggestion to cc this letter to everyone involved.

(My inner copy-editor would like to point out that you mean 10 January 2005, not 2004.)

[ailbhe]

can't bleeeeve no-one else noticed the date error, including self. Rob has now printed the stuff out at work so it's too late, but I can tippex it. Huh. The days when not having a working printer at home mean lower-than-normal standard of living. Life is most peeeeeeculiar.

[radegund.livejournal.com]

can't bleeeeve no-one else noticed the date error

Don't worry - it'll add that touch of authenticity :-)

[pogodragon.livejournal.com]

May I chime in here and suggest also cc'ing this lot on your letter:
http://www.rbbh.nhs.uk/pals
They are the patient advocates at the Royal Berkshire Hospital. And, if you don't get a reasonable response from the powers that be, how about local papers and politicians?

[lovingboth]

It may require making the appropriate gestures to ward off the evil, but the other place I'd consider sending this to is the Daily Mail.

"Nice young mum suffers hell thanks to Blair's NHS" is their sort of story and publicity = action.

[dmwcarol.livejournal.com]

Have you considered the Healthcare Commission? They are the official body who deal with all NHS complaints and reviews. There's a helpline on 0845 601 3012, or their website is www.healthcarecommission.org.uk.

[faeriebluebell.livejournal.com]

I wish you lots of success with this letter. It's very well written and expresses your frustration with the way you've been treated. I agree with the others here that you should post it to all the doctors and medical facilities you have patiented in the course of your "treatment". Wishing you the best and hoping things can be resolved so you can get on with the life you were meant to live!
~Chelmorning from 43things

[nwhyte]

Dear lord, this is awful. (I wandered in via someone else's friends list - we seem to have djm4, natural20, hfnuala and liadnan in common, but I think it was actually nrivkis that brought me here.)

Two suggestions, one practical, the other probably not. The practical suggestion is to consider at what stage you go to the press with this. No point on relying on politicians to fight your corner - the only people they are really frightened of is journalists.

The less practical one is - move to Belgium if you possibly can!!! I've never had to wait as long as 24 hours to see my GP, and never more than a wekk to see a specialist. I can't say that Belgian health professionals are always caring and sensitive, but at least they get the job done.

[ailbhe]

I'm not going to the press any time soon - my mental health couldn't stand it. Most of what's wrong with me is PTSD; the rest is just physical, and would have been fixed by now if I'd had the emotinoal energy to chase appointments.

And the women I know (of) in Belgium seeking similar treatment are being refused outright unless they give up breastfeeding. I know one woman who was told never to breastfeed again, after any pregnancy. So that's not... appealing.

[nwhyte]

Fair points both. As I said, the Belgians are efficient but often heartless. Best of luck, anyway.

[batswing.livejournal.com]

Oh my god! Did you get a reply? A resolution?

[ailbhe]

My beloved gynaecologist saw me very shortly afterwards and thanked me profusely for the letter, whcih was far clearer than anything my GPs had given him. I am seeing Yet Another Specialist in a couple of weeks. I bet they're annoyed I'm pregnant; it will make me much harder to treat.

[batswing.livejournal.com]

oh grief. Good luck.

HOW did I not know you're pregnant?!? Congratulations!