Cerebral Palsy
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Cerebral Palsy and Coronavirus (COVID-19)

Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
edited March 23 in Cerebral Palsy
Cerebral Palsy affects every individual differently that is why it is difficult to create a one size fits all guidance about the impairment and coronavirus.

If you have respiratory issues, like getting chest infections quite a lot. O
r are invited to have the yearly flu jab, you have swallowing difficulties normally, as some people with CP do, due little to no mobility, then you will be classed as having an underlying health condition. It is not the CP itself. 

Here are the latest Government Guidelines on Social Distancing and who should be doing it.

If you are still worried please contact your G.P. or 111

Scope
Specialist Information Officer - Cerebral Palsy

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Replies

  • tristantristan Member Posts: 3 Listener
    Hi 

    Just looking for some advice on this really please
    Our 2-year-old daughter was recently diagnosed with mild CP (only last week) so this is all a bit new to us
    Should we be on full lockdown then?

    thanks

    Tristan 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Hi @tristan, welcome to the community.
    Without knowing your daughter or her history it's impossible for me to advise you of that.

    Please contact her G.P. or Paediatrician.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • tristantristan Member Posts: 3 Listener
    Hi Richard - Many thanks for your reply - We are trying to get hold of him now - tristan 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    I hope you are able to get in contact with him soon, @tristan.


    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • tristantristan Member Posts: 3 Listener
    Hi Richard - We managed to speak to the Paediatrician and due to her having such a mild case she would not be on the "vulnerable" list so good news there - thanks for you help its very much appreciated 

    Tristan 
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,610 Scope community team
    That's good news @tristan and must come as a bit of a relief. I'm glad you were able to get in touch with her paediatrician and that they were able to reassure you. 
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 852 Pioneering
    Hi @Richard_Scope
                                       Thank you for sharing this advice with us, it is greatly appreciated. Please take care and look after yourself. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 852 Pioneering
    Hi @tristan
                       Thank you for getting in touch. I am so pleased to hear that you were able to get in touch with the paediatrician who was able to advise you. Please let us know if there is anything else we can help you with. Please take care and look after yourself and your family. Thank you.
  • Katy7Katy7 Member Posts: 1 Listener
    Hi,

    I hope you are all keeping well in these troubling times. I just wanted to know if I need to isolate for 12 weeks or not? I'm currently isolating as a relative has symptoms, and I think I may be starting to show symptoms. So obviously I will be isolating for the time being anyway. But is there a way to know if the recommended extended period of isolation is necessary for me?

    Thank you, Stay safe x
  • buffster72buffster72 Member Posts: 3 Listener
    Hi
    My son is 25 and has mild CP. He's also offered the flu jab every year - he also has hydrocephalus which is a medical condition so possibly the reason for him being offered the flu jab - or a combination of the two.

    At first I was really worried and upset when they extended the at risk list to include those with CP.
    The thing is, he's never suffered with any colds, flu etc any more than most people. Doesn't have weakened immune system, respiratory problems, is pretty robust etc. He works part time.
    My question is: should he take the precautions and social distance? He works in a shop *rolls eyes* so not ideal. But he/they are taking all the precautions. 
    Should he be telling his boss that he will be unable to work now?  
    He has various issues with his conditions but they are physical and mental as opposed to respiratory, weak immune system etc.
    Thanks in advance.
    Angie x


  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 852 Pioneering
    Hi @buffster72
                      How are you? On the forum, we are not in a position to offer medical advice but would suggest speaking with your son's GP and asking for their advice regarding social distancing.  I hope this helps, take care and look after yourself. Thank you. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Katy7 said:
    Hi,

    I hope you are all keeping well in these troubling times. I just wanted to know if I need to isolate for 12 weeks or not? I'm currently isolating as a relative has symptoms, and I think I may be starting to show symptoms. So obviously I will be isolating for the time being anyway. But is there a way to know if the recommended extended period of isolation is necessary for me?

    Thank you, Stay safe x
    Hi @katy7
    As you and a relative are showing symptoms it is vital that you self-isolate for 14 days. 
    The extended period of isolation, 12 weeks, is recommended for people at high risk and the NHS will contact these people by letter. More information about this can be found on the NHS COVID-19 Conditions page.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Hi
    My son is 25 and has mild CP. He's also offered the flu jab every year - he also has hydrocephalus which is a medical condition so possibly the reason for him being offered the flu jab - or a combination of the two.

    At first I was really worried and upset when they extended the at risk list to include those with CP.
    The thing is, he's never suffered with any colds, flu etc any more than most people. Doesn't have weakened immune system, respiratory problems, is pretty robust etc. He works part time.
    My question is: should he take the precautions and social distance? He works in a shop *rolls eyes* so not ideal. But he/they are taking all the precautions. 
    Should he be telling his boss that he will be unable to work now?  
    He has various issues with his conditions but they are physical and mental as opposed to respiratory, weak immune system etc.
    Thanks in advance.
    Angie x


    Hi @buffster72
    People who are in the at-risk group and need to isolate for 12 weeks should be contacted by the NHS. More information about this can be found on the NHS COVID-19 Conditions page. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Julianos1969Julianos1969 Member Posts: 1 Listener
    Hi
    I am 50 years old I have Mild CP, but due to back pain, club feet, wear and tear on my spine, I use a Manual Wheelchair. I also have High Blood Pressure and Cholesterol issues, but it is controlled by medication.
    Do I have to self- isolate
    thanks

    Julian  
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Hi @Julianos1969,  People who are in the at-risk group and need to isolate for 12 weeks should be contacted by the NHS. More information about this can be found on the NHS COVID-19 Conditions page. 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • BazaladBazalad Member Posts: 21 Connected
    People are saying 12 weeks, but I personal think it might be longer but I am hoping to be wrong
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    @Bazalad, I hope you are wrong too. How are 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. 
  • AlexW_ScopeAlexW_Scope Scope Team Posts: 215 Scope community team
  • WelliWelli Member Posts: 4 Listener
    Hi Everyone on the Scope help team. 

    I am living with CP and have done so since birth.  Whilst I understand that you are not able to provide medical information for individuals I am wondering how you can help me go forward with what I feel is now becoming a major issue.  Not only am I living with CP I am now a full time wheelchair user also living with asthma.  Each year I am invited for a flu jab despite knowing that I am not able to have them due to having an egg allergy.   I also have several chest infections throughout the year. 

    My concern is, that whilst I received the txt msg regarding the lock down, I have not officially been classed in the shielding group.  As advised on the NHS website, people who feel that they have been missed off the list for shielding, should ring their surgeries.   I did, to only receive an unhelpful response.

    I self isolated 4 weeks ago today and still no letter.  Not being on that list of shielding has caused me problems in accessing shopping.  All the charities and organisations are rightly so, requesting proof as it were of their eligibility to assistance, I have none.  I have written to my local newspaper with regards to how probably millions of other people have been inadvertently been missed from the list of shielding, this has today come to light to be the case.

    If there are any further steps you feel I could take, I would be most appreciated to hear them.  I am still fighting this and will continue to do so because unfortunately,  it has been said that this situation will unfortunately get heaps worse before it gets better.

    Thank you so much for being here :) you are all heroes. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Hi @Welli, it's really good to meet you! 
    From the information you have given in your post It does appear that you should have received a shielding letter. It's my understanding that a second mail drop of letters is imminent, in an attempt to include the people that were missed when the letters first went out.
    In terms of further steps, we have some useful information about Food and Essentials during Coronavirus
    You are not alone in this, please keep in touch.

     
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WelliWelli Member Posts: 4 Listener
    Hi Richard, 

    Thank you so much for your reply and for being their for us all at this time.  I didn't think for one minute I am alone in the situation of being 'missed' that is why I have highlighted this problem with my local newspaper as I realise there must be thousands of us out there. 

    I will go to the link regarding accessing provisions whilst isolating. 

    Once again my sincere thanks and wish I had known about this website a long time ago :).

  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    No problem @Welli, it's brilliant that you are a member of the community. Keep well and if you need a chat, let me know! 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Katiegps342Katiegps342 Member Posts: 2 Listener
    Hi Everyone on the Scope help team. 

    I am living with CP and have done so since birth. I'm a semi - permanent wheelchair user but can also walk with 2 sticks. I also cope with having asthma; causing several chest concerns over the years including 2 bouts of pneumonia, coeliac and other health problems as I have got older. Each year I am invited for a flu jab so when PM said on 16th of March that those who were eligible each year should shield themselves for the next 12 weeks from the 21st of March; that's what I prepared myself to do. 

    Unfortunately this wasn't soon enough as on the 23rd of March I was taken ill, had to call NHS direct after taking advice from my local chemist and subsequently was taken to my local a&e for medical and practical reasons as me possibly having symptoms of Coronavirus meant I had to self isolate from my support workers who I employ via direct payments package provided by my local authority and suddenly had no care and couldn't be left at my home on my own. 

    After 5 hours I was admitted into hospital and tested for Coronavirus; in the meantime my CP had flared up and I couldn't walk. Doctors couldn't and wouldn't understand and tried desperately to get me home even with no care! Eventually the following day I tested positive for Coronavirus. Why I'm posting this information is to warn people that this virus starts off like an ordinary cold and then hits you like a brick! 

    I ended up staying in hospital for 12 days fully in isolation and believe me it has been mentally tough even with all the experiences of health care I have had during my life. I then got moved to an intermediate care home for rehabilitation and have stayed there 13 days; having physiotherepy and constance phone calls with social workers to sort out a care package and continued therepy at home to help me recover to as I was prior to this virus. Today I am finally getting home, but the battle isn't won. 

    My concern also is that whilst I received the txt msg regarding the lock down, I have not officially been sent a shielding letter or any contact from my Gp so how I'm I going to access things like shopping online, I know I'll have the care package but that doesn't cover cleaning, laundry and shopping etc. All the charities and organisations are rightly so, requesting proof as it were of our eligibility to assistance, I have none.

    Also I know I need and most isolate myself for the next however many weeks even months eventhough I have had Coronavirus. 

    If there are any further steps you feel I could take, I would be most appreciated to hear them, it has been said that this situation will unfortunately get heaps worse before it gets better.

    Thank you so much for being here :) you are all heroes. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Hi @Katiegps342, I'm so glad to read that you are on the mend and that you have joined the community.
    In terms of further steps, we have some useful information about Food and Essentials during Coronavirus
    You are not alone in this, please keep in touch.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • BazaladBazalad Member Posts: 21 Connected

    LIFING IN LONG DOWN

    Hi my name is Barry or Baz and I am 41 years old, with Cerebral Palsy I lived in Ayrshire in Scotland. I am in a power wheelchair and speak with a SL50 which a lightwrighter a voice output communication aide. before long down started I always went out each days with my pa and now we stay in because it isn't safe to go out. I am thank you I have a back door, I can go out for air. see if anyone told me this 12 weeks ago I would say to them "DONT TALK <..
  • Richard_ScopeRichard_Scope Administrator Posts: 2,432 Scope community team
    Hi @Bazalad, have you received the High Risk letter from the government? If not, you are allowed out for one hour per day whilst observing the social distancing rules.
    This something I try to do, just to get some fresh air.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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