Parents, carers and disabled parents
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Is there a support group in the Manchester area for parents?

SusieMSusieM Member Posts: 2 Listener

 Hello, This is my first time ever on a discussion group.  Does anybody know of a support group in the Manchester area for parents. I am the grandmother of gorgeous twin girls aged 8 months. One of the babies has CP following lack of oxygen around the time of her birth. These are my daughters first children and I am so worried about her. She is struggling right now with all the things she has to juggle,appointments galore but little in the way of communication and advice. Plus caring for 2 babies and trying to come to terms with the diagnosis. I really feel she and her husband would benefit from talking to other parents who have been through some of the same things or are going through it now. Our little one  is tube fed and has just had a swallow test which showed some problems, she has a vulnerable swallow. She had been enjoying food up until then but we have been told to stop and tube feed only following a chest infection due to her aspirating..We  have not been given advice about any physio or other therapy which might strengthen her swallow or ways to ensure that food is pleasurable in the future. Does anybody have any advice about this? I am going to encourage my daughter, to  join this discussion herself when she feels ready but in the meantime I am trying to find her some support . Health visitor came once in the beginning but has not been back since.

Thanks for listening

Sue 

 

Replies

  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    Hi @SusieM - I know you wouldn't want to give too much info on here, but is your daughter in Manchester itself or a borough of Greater Manchester? There is an excellent group in Stockport x
  • SusieMSusieM Member Posts: 2 Listener
     Hi
    She lives in Manchester (South) where there appears to be nothing in the way of support.
    I saw groups in Stockport, Bury  and Tameside but they do not include Manchester city families.?
    Thanks
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @SusieM welcome to the community.

    We have some advice on CP here that might be helpful.

    I wonder if it is worth calling the Health Visitor again and asking for support and advice? They should have the most up to date local support group information.

    I hope your daughter can join the community, there are so many parents and carers on here who have such a wealth of experience and hopefully can help her feel a little less alone.

    Sam 
    Scope
    Senior online community officer
  • StripesStripes Member Posts: 24 Listener

    Dear Suzziem

    I am the Scope's information and Advice Worker for your area. My role is to provide advice and information to families who child has been diagnosed with Cerebral Palsy.

    I would be happy to come to see your daughter and son in law to offer some advice around what services are available in their area.

    Also I can talk to them about the condition Cerebral Palsy and explain a bit more about  Cerebral Palsy as I have the condition myself I can give them a insight to living with the condition

    If you feel a visit would be useful then please drop me an email to [email protected],uk and we could arrange for me to come and see them


    Ian Jones

    Information and advice worker



  • StripesStripes Member Posts: 24 Listener

    Dear SusieM (apologise for the incorrect spelling of your name on my 1st post)

    I am the Scope's information and Advice Worker for your area. My role is to provide advice and information to families who child has been diagnosed with Cerebral Palsy.

    I would be happy to come to see your daughter and son in law to offer some advice around what services are available in their area.

    Also I can talk to them about the condition Cerebral Palsy and explain a bit more about  Cerebral Palsy as I have the condition myself I can give them a insight to living with the condition

    If you feel a visit would be useful then please drop me an email to [email protected],uk and we could arrange for me to come and see them


    Ian Jones

    Information and advice worker

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