Advice on connecting with people in a similar situation.. Liverpool area
Steve_83
Community member Posts: 2 Listener
Hi all, new to the forum. Father of a (nearly) 4 year old girl with suspected Cerebral Palsy and Global Delay.
Neurologist not entirely ruled out a genetic cause for her condition and she has another MRI this week to look further at abnormalities in her brain. But she presents as having cerebral palsy and so is having the associated care/therapies.
We have been in a bit of limbo for a while as doc has been back and forth on weather it be caused by a difficult delivery or a genetic condition.. had birth notes etc. She's affected in all limbs and has global delay so she is quite behind.
We are in the Liverpool area and wondering if anyone knows of groups that may run for people in a similar boat, not really got anyone to talk to other than eachother and starting to feel a little isolated with friends and family.. easy to get cut off or i guess.
Sorry for the big ramble ? thanks in advance
Neurologist not entirely ruled out a genetic cause for her condition and she has another MRI this week to look further at abnormalities in her brain. But she presents as having cerebral palsy and so is having the associated care/therapies.
We have been in a bit of limbo for a while as doc has been back and forth on weather it be caused by a difficult delivery or a genetic condition.. had birth notes etc. She's affected in all limbs and has global delay so she is quite behind.
We are in the Liverpool area and wondering if anyone knows of groups that may run for people in a similar boat, not really got anyone to talk to other than eachother and starting to feel a little isolated with friends and family.. easy to get cut off or i guess.
Sorry for the big ramble ? thanks in advance
Comments
-
Hello @Steve_83
Have you tried Contact a Family?
Here is their site https://contact.org.uk/advice-and-support/local-support/. Also ask your doctors whether they know of any local support groups you can join or not. If not look at support groups online.
They can make all the difference to us. On bad days they can support you and on good days celebrate with you. It made me deal with things better especially in the early days when I was adjusting to my new normal.
-
Hi @Steve_83
Welcome to the community. Scope has a national mentor service that provides emotional support for parents, called Navigate My colleagues at Navigate have lots of experiences from diagnosis to dealing with the day to day.
I live with quadriplegic Cerebral Palsy and I'm around if you want to talk.
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know. -
Hi @Steve_83 and a warm welcome to the community! Thank you for sharing this and please do let us know if we can do anything else to help. I too would suggest looking at the Navigate service that my colleague has suggested.
Scope -
Hi all sorry for the late reply, and thank you for the welcome.
I'll check out the navigate service, I'm also speaking to contact s family to see what's available in my area.
Appreciate the help and guidance, don't really know what we're looking for exactly but we're open to see what support is available.
Hope you all have a great day ahead of you.
Thanks -
No problem at all @Steve_83! Please do keep us updated and I hope you are able to find some support. If you have any further questions then we are always around.
Scope -
Hi @Steve_83
How are things? I have found some links that might be helpful:
LivPac is a local parents and carers association
Early Help Register This is more like a directory of services from Liverpool City Council.
Liverpool Council for Disabled Children again, this is a directory to services in the wider area.
Apologies for the delay in finding the information for you. It wasn't as easy to find as it should be!
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
Want to tell us about your experience in the community? Talk to our chatbot and let us know.
Brightness
Categories
- All Categories
- 13.3K Start here and say hello!
- 7K Coffee lounge
- 101 Games lounge
- 482 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.6K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 806 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 666 Dating, sex, and relationships
- 374 Exercise and accessible facilities
- 845 Transport and travel
- 32K Talk about money
- 4.6K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.4K Talk about your impairment
- 1.8K Cerebral palsy
- 885 Chronic pain and pain management
- 183 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 328 Sensory impairments
- 832 Rare, invisible, and undiagnosed conditions