PGP / SPD My story:

(HEADER:) BIRTHING PLAN (MY NAME IS HERE) PAGE 1 OF 2. D.O.B: --/--/---- BABY DUE DATE: --/--/---- NHS NUMBER: ----------- UNIT/HOSPITAL NUMBER: ------- CONSULTANT: (NAME HERE) MIDWIFE: (NAME HERE) (HOSPITAL NAME HERE) HOSPITAL BIRTHING POOL PLEASE NOTE : I HAVE SYMPHYSIS PUBIS DYSFUNCTION (SPD): This means that the joints in my pelvis are unstable and painful and I need 24/7 care as I am in a wheelchair and immobile. Clexane injections daily due to stop at week 39: 25 th November 2009. There are certain things that are recommended and certain things that I cannot do during labour and birth; this is to avoid anything that may cause damage to my pelvic joints . These are outlined in this birthing plan: BIRTH AND LABOUR: I am in a wheelchair and immobile due to SPD. Clexane 20mg injections have been daily self-administered and are/should be stopped at week 39 in preperation for birth: 25.1...

Following my last post in regards to the study conducted in the North West of England, this is what has happened this week in regards to my SPD case. The DLA manager I have been speaking with has had my file back from medical services and the decision maker has decided more information is needed form medical services from the start of monday 19th Oct 09. They will be in touch. So fingers crossed still. The Dr's have been in touch and I am now speaking with someone in regards to my mental health due to SPD. We have also been lucky enough to now have a cooker as well as a fridge freezer thanks to the kind lady from the SVP!!! We don't know how to thank her enough!

" Background. Symphysis pubis dysfunction (SPD) is an abnormal stretching of the pubic joint in pregnancy, which causes distress and pain during and after pregnancy. Measures of its incidence varies widely, and most research has focused on identifying causes. Among healthcare professionals, there is evidence of low levels of awareness of SPD and a lack of sympathy toward women with it. Aim. To explore women's experiences of SPD during pregnancy and up to six weeks postpartum, with particular reference to pain. Method. A qualitative, phenomenological approach was used in conducting semi-structured interviews in a large maternity hospital in the north-west of England. A total of 28 women were interviewed during pregnancy and six weeks postpartum (51 interviews). Findings. The dominant theme to emerge was the women's experiences of pain. Pain was described in compelling language, and some women overdosed themselves on analgesics. Pain was sometimes accompanied by sounds that ...

We had to set off at 8am for my husband to push me all the way to our new house in my wheelchair which took about 30 minutes so wasn't too bad, although was prettty bad for him as there were bumpy paths, curbs, steep paths upwards and downwards and I can only imagine how much pressure that would have put on his back. We had to get our electricity key sorted, that took ages as the ladies at the shop were extremely helpful but had not coded a number (tag overwrite or programmed a code) onto a key before. They did an RTI overwrite and it worked the balance on the receipt had lots of zeros so we didnt know at that point if the key had the balance of £41 to clear the debt that wasnt ours on the meter etc... Got to the house and thankfully it worked. The men sorted the gas and electricity (safety check) and my dad had got a fridge freezer from that lovely lady from SVP. (catholic church charity). It was ages until we got home, and when we did get home I phoned my midwife as I have been w...

Social services and my OT have said that I won't be able to get a stairlift at all. So I am going to definately be left without a stairlift: access to bath and shower and toilet till 2010, minimum february and maximum 2012. They expect me to have a quick wipe down downstairs in regards to hygiene and use the commode. Bearing in mind I am having a baby too, due dec 2009!!! The charity/church I phoned cannot even help with a stairlift. We really don't know what to do as I cannot even wash my hair as I cannot do it in the sink downstairs and don't have a table to rest a dish on or anything. I have a shower seat to get into the shower but that is no use to me if I cannot get to the shower. I am going to miss out on being a proper mother till 2012 when my childs 2, and thats if i fully recover. :'( They are taking everything away from me! :just want to be left alone:

"Baby born two days too soon is left to die Sarah Capewell says her baby, Jayden, lived for two hours after being born at 21 weeks and five days' gestation. Premature baby 'left to die' by doctors after mother gives birth just two days before 22-week care limit (dailymail.co.uk, 08 September 2009) Bereaved mother's campaign against medical guidelines that allow premature babies to die (telegraph.co.uk, 05 September 2009) Premature ‘little fighter’ challenges abortion limit (30 June 2009) Sextuplets mum ignored doctors' abortion advice (15 June 2009) Healthy baby born after mum was told to abort (26 March 2009) Mum slams abortion law as 23-week baby lives (07 January 2009) Wednesday, 9 September 2009 A young mother watched her baby son die in her arms after doctors refused to help because he was born two days too soon and therefore ‘just a foetus’. Sarah Capewell gave birth to Jayden after 21 weeks and five days of pregnancy. But doctors refused her desperate pl...

I phoned my social worker , immediately she seemed to want to hang up on me and kept demanding who advised me to contact her. So I told her. She was still then more in the attitude of I cannot help with stairlifts, which was repeated throughout the call. I understand there are notes on her system but it would be nice to have the opportunity to explain our circumstance so she can make a decision as to what to do next if anything. She kept asking me what I want from her (in different words not that it matters anyway as its plain english) and I kept saying what can you do? Till the point I said well what is your job role?? I have left the conversation with her, more angry and upset than I was prior to it, feels like I was talking to a wall, and that as far as she is concerned she cannot help etc, although at one point she did say over and over again she feels the need to contact my midwife to state about my nutritional needs etc, and that she will be passing a referral to Family Welfa...

For the last few weeks my pain has got worse (it was always constant) but now it's much worse and it is keeping my husband and I awake. I am sick of all this torture , it's bad enough being in pain all the time but thinking about if that person sat behind that desk at DLA who needs to make an opinionated assumption as to whether they feel I need 24/7 care without sending me a medical assessor experienced in severe SPD, declines me again despite factually needing 24/7 care our lives will just get much worse as we are not eligible for anything. It's not like we can say, oh OK then, our bad.... my husband still cannot work, I still need 24/7 care and we have no choice but to appeal again to take it to a tribunal. I have sent them confirmation in letter form from my G.P stating I am likely to have it months after the childbirth due to the severity of my SPD, documents on minor (some areas severe) SPD and requested a home medical assessment in an essay of a letter about my ind...

My husband has been offered a job position, we don't know when it would start as it may even start next year but just incase it was to start immediately we phoned social services who cannot provide 24/7 care and only do pop out visits (the problem is its during the week full time) so he cannot even do that as he needs to 'babysit' me.... Everything keeps making me feel like a problem. My husband however has said that I come first and I cried into his arms for a bit, I love his cuddles, and that as it is a fact that I need the 24/7 care he is not going to jeopardise my or our unborn baby's health just because others cannot see nor accept this fact. I am in agony now and we have not slept right for 5 nights in total now due to my pelvis pain. I am sick of the commode but I guess I have to get use to it anyway as the new house doesn't have a downstairs toilet and the social and others have said I don't need one as I have that. I wonder how they expect me to shower!...

Seriously considering swallowing whatever pride and dignity I have left if I have any left now, and go to the media... to let the media know what the system are doing to people. I can see myself seriously ending up in hospital as no one can help us. Because I have this disability that is SPD I need: A stairlift = cannot get help for one cannot rent one due to financial situation and due to L shaped stairs. The internet: Costing us £60.00 to move to our council property to avoid homelessness. (we have to do online shopping/banking/the only communication i have with the outside world etc) The phone line for emergencies and the internet: £122.50 cost from BT as the council house doesn't have any wiring or a phone socket/access. The key meter is no good as we cannot top it up due to my care so Npower were willing to change it for free as we have been customers for nearly 2 years but take 28 days from the date we move in, and they said the gas and electric are with powergen. The lady I ...

We went to view the council property today and we have accepted it as we have to. We have no cooker and as it is a council house theres no carpets/wallpaper/decor at all, there isn't even lightbulbs lol but we can sort lightbulbs. The council told me that they don't have any bungalows for elderly let alone for disabled and that if I sent my information to them about my medical needs the only houses they can offer me are two bedroomed properties in which all two bedroomed don't have downstairs toilets. So we have taken this two bedroomed property. Only three bedroom properties have downstairs toilets and with the problems I have had I don't think I will ever be able to have a second child. I need to be able to look after my first and at the moment I need 24/7 care myself and life really sucks! I am just worried and sick of all this verbal promised help and support and there isn't any at all. I phoned my O.T who is not available and her colleague stated she wouldn...

Had problems this morning with transport to acupuncture as the receptionist at physio hadn't acknowledged that I was in my own wheelchair and even though she confirmed (last time we were there) we needed a drop down back for wheelchair access, booked an ambulance that was not suitable for wheelchairs, had a ramp-drop down access but no wheelchair clamping facilities to transport me. I was in tears this morning. She did rectify it as I begged her to so I could get there and we did manage to get there so I am grateful however her apologies and attitude was very half-hearted, rude and negative and really upset my husband. Had acupuncture and got home, council called thankfully and is trying to sort out our council tax mysteries, so we were relieved. Then my husband was called to say he has lost his job so we got upset... again. My husband has had to apply for Income Support as carers allowance is no go as my DLA is pending and cannot go on JSA as he would have to bring me every fortn...