AIBU unreasonable to wonder if my local obstetric physio team doesn't really care ...

[BoffinMum]

I have got a debilitating version of SPD which got dramatically worse four weeks ago, and the GP and hospital ante-natal clinic both arranged for emergency referrals for me to the NHS obstetric physio team. I am now more or less housebound, have applied for a Blue Badge and Disability Living Allowance, can't look after my children or do anything around the house, etc etc.

Since then I haven't heard a peep out of them, although by shuffling up there in great pain I managed to get a pair of mismatching crutches out of them a fortnight ago by making a big fuss.

Is it really all that unreasonable to expect some sort of proper help and therapy a bit sooner than this???

Brilliant, best of luck.

I dread that moment when the SPD overwhelms my efforts to keep fit/keep it at bay... Last time it was diagnosed too late and I was told to stop exercising and excacerbating it.

Anyway, was also thinking you could put Epsom Salts in the bath to draw out inflammation.

Good luck

My thighs are spreading and going lumpy as we speak.

I miss the gym.

I've suffered from it for the last three years. The first sign I was pregnant this time was the intense pain in my dimples (I prefer to say PGP as I don't usually have SPD) and I was under the physio from 9 weeks (felt as daft there as I do when I go into labour and everyone is so far ahead of me lol). I put up with lack of movement for well over a month, I totally froze up around 18 weeks my Dad had to break into my flat so he could get me out and to hospital! Eventually I could barely stand up - even now I walk like a duck with my bump out and shuffle if I'm not on crutches - or move and called the physio, they told me to come in that afternoon and to ask for a chair in reception if the walk would be too much. I'm now on crutches and take co-dydramol when the pain gets too much (I've been told to take it like a course but I don't want to rely too much on them). I'm going to speak to my Housing Association and get some aids put in (I struggle to get off the toilet) and I'm trying to move house as between the back and having another baby I need a bigger place and to not be on the top floor! I've had to move Tink to my parents as I can't get in and out with her. When the baby comes if I'm still here I will have three options: a, give her to my parents too; b, move in to my parents; c, become totally housebound. I've been told if I do a or b I will be seen as intentionally homeless

There isn't a lot they can do when it gets bad, they can give you advice on movement and some gentle exercises that will help but it's mainly listening to your body and resting.

Sorry if I've rambled.

Boffin - I so feel for you, I had SPD from 17 weeks, no one believed me (apart from hubby) and it was sheer agony right up until I gave birth! I couldn't work, had the whole of pregnancy of sick but thankfully I still got full pay!

You really do need to kick up a stink so they help you as it needs dealing with, my SPD went immediately after I had my c-section which I was amazed at!

Sending you big hugs as I really know what your going through.

BoffinMum on Tue 02-Dec-08 10:09:07
"This is awful. I can imagine no other group within the community who would be arbitrarily denied treatment like this."

When dd was unable to walk due to joint problems, we were told there was a 6 months waiting list for physio. Dd was 7 at the time, so it's not just one group within the community.

Cory: God it just gets worse and worse.

One of my friends moved to Germany for a bit with her kids and was absolutely amazed when her child (born with whatever they call a withered arm in these politically correct times) got OT every week automatically without any kind of fuss or waiting list whatsoever. All she got over here was a leaflet.

Tinker: Are these housing people MAD?? How can you make yourself intentionally homeless when you live somewhere that doesn't constitute a proper home in terms of your needs?

I'm hoping if it gets to that stage I can get more medical backing (my GP has already written to them.

I've set up Ring & Ride today because I can't walk to the bus stop very easily. They can't take me to appointments though so I need to get to my GP (no bus route and over a mile walk with some quite steep roads) to arrange patient transport, BUT I just found out Googling patient transport the hospital has sacked the company for not properly backgrounding their drivers, so looks like I'm stuffed! My next task is mobility and a Blue Badge. Gah, how old is this all making me feel? I bet I'll be the only one on a Ring & Ride bus taking their LO to see Santa!

I had horrendous SPD with DS and I was house-bound and on crutches at the end. I was due to pick up my wheelchair on the Monday, but luckily went into labour three weeks early on the Thursday so didn't need it. Because I couldn't have an active birth, and had been laying flat-out in the weeks leading up to his birth he was back-to-back and I ended up with an epidural and an eventual assisted delivery. The pain pretty much went as soon as he was born (I walked to the bathroom and back before my DH reminded me that I couldn't have managed it that morning), and the condition had cleared up within 6 weeks.

You have been given appalling treatment. I'm having physio next week for SPD pain in this pregnancy, and I'll only be 14 and a half weeks. My midwife referred me in my booking in appointment, at 10 and a half weeks, on the Thursday and by the Monday I had an appointment (which I had to cancel, but that's how quick it should be).

Some GPs don't take it seriously as they don't actually know what it is.

Thanks morechocolatenow. I think I will make more fuss now you have described it as appalling treatment. I think waiting a month when I have asked the GP, ante-natal clinic and midwife for a referral is awful, now you put it like that.

Sometimes you have to be your own advocate. I would kick up fuss and get a referral or call for yourself. There isn't a lot they can do for you though whilst you are that bad. You have crutches, but if you are still struggling on those they may give you a chair, have you got a proper belt? Not the JoJo type, try Medistox (it's changed it's name but, if you search for it, it will redirect you). Have you been fitted properly for the crutches? I know if I change my shoes then I notice a difference in my back.

I just reread my first post:

"even now I walk like a duck with my bump out and shuffle if I'm not on crutches"

Totally different meaning

Hi BoffinMum,

You really need to kick up a stink - a proper gynea physio will know what you are going through and should be able to make life easier for you.

Im a physio and there are lots of techniques which will make life easier for you. A lot of the pain of SPD is caused by the muscles in the buttocks tightening up which causes the waddling gait! So - if you have a dp/dh or really good friend, get them to help you.

Lie on your side and put a hot pack on one buttock, leave for 5 mins and then ask them to use some oil and massage deep into the muscles. Repeat a few times on each side, and see if that gives you any relief.

This works best when used in conjunction with the techniques and exercises on a birthing ball. I think I have a leaflet somewhere about the birthing ball exercises.

If you have no joy with the physio appt then just email me and Ill send it to you.

My address is physioangel at hotmail.co.uk

Sorry for the long post! Hope it helps

Thanks for posts people. I am ringing clinic now and not taking prisoners. Update will come later.

Update now ... I rang to chase it all up, and they claimed they had never heard of me!!

Here is the outraged email I sent to the Patient Complaints people at the hospital. Apparently the Chief Executive sees all complaints. I am very much on the warpath.

---

I am 23 weeks pregnant and have developed acute Symphysis Pubis Dysfunction (otherwise known as Pelvic Girdle Pain). I am currently effectively housebound and unable to get to work or care for my other children as a consequence of developing this condition.

I initially contacted my community midwife, xx, for advice and to request a referral on 8 November 2008. My GP, Dr xx, referred me to the Obstetric Physiotherapy Service on 10 November 2008. The Ante-Natal Clinic referred me to the same service with a special request for this to be expedited as quickly as possible on 13 November 2008. I visited the Physiotherapy department myself on 20 November 2008 for the Drop-In SPD Clinic to chase up the referral and ask to be fitted with some crutches, and I was assured the referral was in hand, and given some management advice which was unhelpful at best and damaging at worst. I visited the GP again on Tuesday 2 December to ask him to refer me again, and he seemed very concerned that nothing had been done to date, and said he would ring and write.

I have just telephoned the Outpatients Physiotherapy department and been told that that have no record of any referrals for me. I have now been waiting four weeks for an appointment for this acute condition. I would be very grateful if the paperwork could be followed up immediately and I would like to be given an appointment during the early part of next week please, as I understand it is not usual to have to wait for more than a week for an appointment in these circumstances.

The Association of Chartered Physiotherapists in Women?s Health recommend in their 2007 Guidelines in relation to Symphysis Pubis Dysfunction that a proper assessment is required as soon as possible after developing this condition, and that manual therapy and the teaching of appropriate physiotherapy and core stability exercises is necessary. I am expecting all this to be covered in the appointment.

Yours sincerely,
Dr VirginBoffinMum

WTF thats awful!!!!

Bloody good letter though boffin go you, hope you get a reply sharpish!! xxx

It appears to have taken them 15 minutes to respond! I now have an appointment for 11am Monday!!!!

I think this is probably the best response to a complaint I have ever had!!!

Thanks for your support, everyone. It really helped me get this sorted.

That's brilliant news. I really hope the physio helps. Really pleased for you xx

Yes, I am well chuffed. They were incredibly nice when they realised what had probably happened, and couldn't do enough to help. I may forgive them after lunch.

Well done Boffin, only just seen this.

A few peeps earlier mentioned belts, my osteo said the best one is the Serola belt which he's lent me. Maybe ask for one to borrow for free?

Hope your appt goes well. Try and get some actual manual relief whilst you're there (!) instead of just a list of excercises and do's and don'ts.

p.s. best SPD tip I got from my OB.Physio last time was to always imagine you are wearing a short skirt and no knickers!! Makes you keep your legs together and ladylike so you don't overstretch and strain.

Thanks Lotster. I have bought a really major belt from the BUPA shop, but it feels uncomfortable, so I may well try the belt you recommend if I can borrow one.

What an idiot. Send him one of the Pelvic Partnership leaflets!!

My GP told me I had to exercise past the pain because that's when the body produces the endorphins blah blah blah my physio's face was when I told her!

Apparantly you can get it any time but if you get it before a certain week then it's likely to go before the end of pregnancy, if you get it later it will go after the pregnancy - of course there are those of us who three years later are still suffering or need an operation to correct it, but the general garden variety will act like that. Any doctor who has done time on a maternity ward will be biased from seeing women in later pregnancy, in the same way that obstetricians are more likely to want a medicalised birth because they see more of them than natural births so are biased towards if thigns go wrong.

Tinsel, do you happen to know what week that might be?? I live in hope here ...