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questions about trying to get pregnant, being pregnant , childbirth and the early postnatal period

i am a midwife working in a busy unit. I would be interested in hearing from people with disabilities in relation to the above life changes, challenges, choice/options available (or not available )  and the negatives and positives of their experiences. I am equally interested in hearing from partners who may themselves have a disability or who may wish to reflect on their experience when attending the maternity unit for appointmenst birth etc. The reason I am asking these questions is to assess how  our maternity services meet everyones needs equally, and to see what we can do to change the services and care we provide.

Replies

  • AlexAlex Scope Posts: 1,324 Pioneering
    edited August 2016
    Hi @belindaG,

    Welcome to the community! It's great that you are looking for this feedback, and I hope you will get some useful responses. There are quite a few mums who have spoken about pregnancy experiences on the community @ixy @rhi87 @paininthemum @sallyanna169 @Gemstr and at least one dad @speedincaesar.

    Hope they and others can help!
    Alex


  • Richard_ScopeRichard_Scope Posts: 2,720

    Scope community team

    Hi @belindaG
    I will be happy to share my experience with you!

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • belindaGbelindaG Member Posts: 5
    Hello - that would be amazing, thank you. It would be of huge benefit to understand pregnancy from a guy who has a disability , challenges that you may have faced. Would it be easier for me to send you a sort of queries list , call you or for you to write your story out ? The info you provide would be entirely confidential and so anonymised but used to provide context to providing equality of services . I met a dad with CP recently and it kick started my project - I was humbled at his low risk take on birth options ( one of my roles). So let me know what works best for you
    kind regards
    belinda 
  • ehdg1ehdg1 Member Posts: 2
    Hi there, I was born with spina bifida and have a 12 year old daughter. I would love to be able to help in any way. 
  • belindaGbelindaG Member Posts: 5
    Hello - thank you ,  that would be really helpful and very generous of you. I am not sure whether you would like to answer lots of questions from me  or whether you would rather tell me your birth story? I am away for a few days and back at work on Tuesday . If you would rather you did this through my work email address thats really fine, and infact that might be best so that you know I am a legitimate NHS midwife ! I am at UCH in London . Although I  would keep your personal details confidential I would need to use the experience you describe to enable us to make change in the NHS, and equally to let others with disabilities see positive (and I am sure for some not so positive) pregnancy and birth stories . I would also be interested in your partners experience too if that is appropriate for you.
    kindest regards
    Belinda  
  • ehdg1ehdg1 Member Posts: 2
    Hi Belinda,
     Its probably better to answer questions as then I know you're getting the information you require. Talking via your email is great. I will ask my husband, although we are now separated but on good terms, if he is happy to be involved too. Look forward to hearing from you. 

    Liz 
  • belindaGbelindaG Member Posts: 5
    Hello Liz
    These are just some of my thoughts when thinking about women and their partners care / experience during the pregnancy / birth/ postnatal periods . My email is [email protected]. I am a consultant midwife here.
    Please feel able to respond or not as you feel is appropriate . I am not making any assumptions about your disability so please excuse me if some of my questions seem odd.

    1. What type of disability do you have?   Were you born with a disability or did the disability happen during your life time?
    2.When you thought you were pregnant how did you diagnose the pregnancy? Did you self test, and if so was this an easy task for you? Did you go to the GP? Did you do a self referral to your maternity unit?
    3. At this time did discovering your pregnancy make you feel anxious/ happy/concerned?
    4. Have you been pregnant before? Did you attend antenatal classes, if not was there a specific reason for not going?
    5. Where did the midwife undertake the booking appointment (eg. home , hospital,GP surgery) For you where would the ideal place have been?
    6. Did you have scans undertaken for the downs screening test at 12 weeks (thereabouts) and did you have further scans done because of a specific reason connected to fetal growth / problems ? (the average number of scans is around 2-3 during an entire pregnancy.) or did you feel you were over monitored because of having a disability?
    7. Considering your disability would you consider that you were overly monitored in pregnancy, or was it about right or too little?
    8. Was your care with an obstetrician all the time , or some of the time and / or shared with a midwife and a GP ? Did you have a midwife who provided continuity of care for you in the pregnancy and birth / postnatal period ?
    9. Did you experience problems coming to hospital (if you came to hospital) and would anything have made these visits better? do you think that home visits during the pregnancy would have been better for you? or would using some other medium been more suitable (skype for example)
    10. Many women find they have to wait when they attend for appointments, did you wait ? How did this work for you ? (eg facilities/ space)
    11. Did you feel you were considered as an equal partner in the decisions made about your pregnancy? what about your partner (at that time)?
    12. Where did you plan to have your baby? Were you given a choice of place of birth ?
    13. Where did you have your baby? What were the facilities like for you? What could have made a difference to you / your partner? How was your baby born? did you experience any problems with staff or facilities or feel that you would have wanted to do something else but werent able to? for eg a home birth ?
    14. How was your baby monitored ? (CTG, hand held sonic aid) and if a CTG was this because there was a reason for using a CTG monitor? did you regularly change positions in labour (if went into labour)
    15. Did you feel you were treated with respect (in pregnancy/labour/postnatally) all the time/most of the time/some of the time/not at all?
    16. Were there any problems during the birth that you felt could have been managed better ?
    17. Did you feel that the NHS / maternity unit provided for your needs adequately ? What do you think would have made things different for you and your partner?
    18. Is there anything in relation to your birth that you feel you wish to share that could have been done better (or infact everything may have been perfect)
    19. Thinking about the time after your birth - how did you feed your baby? did you find postnatal checks difficult / challenging? did you feel you stayed in hospital (if you gave birth there) the right amount of time ? how was your recovery after the birth? Did you experience any problems?


    Liz thanking you in advance. If you have any questions you need to ask me please let me know using my email as above. Please do be aware that you do not have to answer any of these questions, They are simply phrased in an attempt to understand birth stories from women / partners who may face additional challenges during pregnancy . If you wish to see the final anonymised writings then i am more than happy to send that to you when I have enough information / feedback from others.
    kindest regards
    Belinda Green

     
  • belindaGbelindaG Member Posts: 5
    Hello Liz
    These are just some of my thoughts when thinking about women and their partners care / experience during the pregnancy / birth/ postnatal periods . My email is [email protected]. I am a consultant midwife here.
    Please feel able to respond or not as you feel is appropriate . I am not making any assumptions about your disability so please excuse me if some of my questions seem odd.

    1. What type of disability do you have?   Were you born with a disability or did the disability happen during your life time?
    2.When you thought you were pregnant how did you diagnose the pregnancy? Did you self test, and if so was this an easy task for you? Did you go to the GP? Did you do a self referral to your maternity unit?
    3. At this time did discovering your pregnancy make you feel anxious/ happy/concerned?
    4. Have you been pregnant before? Did you attend antenatal classes, if not was there a specific reason for not going?
    5. Where did the midwife undertake the booking appointment (eg. home , hospital,GP surgery) For you where would the ideal place have been?
    6. Did you have scans undertaken for the downs screening test at 12 weeks (thereabouts) and did you have further scans done because of a specific reason connected to fetal growth / problems ? (the average number of scans is around 2-3 during an entire pregnancy.) or did you feel you were over monitored because of having a disability?
    7. Considering your disability would you consider that you were overly monitored in pregnancy, or was it about right or too little?
    8. Was your care with an obstetrician all the time , or some of the time and / or shared with a midwife and a GP ? Did you have a midwife who provided continuity of care for you in the pregnancy and birth / postnatal period ?
    9. Did you experience problems coming to hospital (if you came to hospital) and would anything have made these visits better? do you think that home visits during the pregnancy would have been better for you? or would using some other medium been more suitable (skype for example)
    10. Many women find they have to wait when they attend for appointments, did you wait ? How did this work for you ? (eg facilities/ space)
    11. Did you feel you were considered as an equal partner in the decisions made about your pregnancy? what about your partner (at that time)?
    12. Where did you plan to have your baby? Were you given a choice of place of birth ?
    13. Where did you have your baby? What were the facilities like for you? What could have made a difference to you / your partner? How was your baby born? did you experience any problems with staff or facilities or feel that you would have wanted to do something else but werent able to? for eg a home birth ?
    14. How was your baby monitored ? (CTG, hand held sonic aid) and if a CTG was this because there was a reason for using a CTG monitor? did you regularly change positions in labour (if went into labour)
    15. Did you feel you were treated with respect (in pregnancy/labour/postnatally) all the time/most of the time/some of the time/not at all?
    16. Were there any problems during the birth that you felt could have been managed better ?
    17. Did you feel that the NHS / maternity unit provided for your needs adequately ? What do you think would have made things different for you and your partner?
    18. Is there anything in relation to your birth that you feel you wish to share that could have been done better (or infact everything may have been perfect)
    19. Thinking about the time after your birth - how did you feed your baby? did you find postnatal checks difficult / challenging? did you feel you stayed in hospital (if you gave birth there) the right amount of time ? how was your recovery after the birth? Did you experience any problems?


    Liz thanking you in advance. If you have any questions you need to ask me please let me know using my email as above. Please do be aware that you do not have to answer any of these questions, They are simply phrased in an attempt to understand birth stories from women / partners who may face additional challenges during pregnancy . If you wish to see the final anonymised writings then i am more than happy to send that to you when I have enough information / feedback from others.
    kindest regards
    Belinda Green

     
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