Care and Support

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Care and Support

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Creutzfeldt-Jakob disease and other human prion diseases are invariably fatal, and there is currently no proven treatment that has been shown conclusively to slow, halt or reverse the disease process in humans with any form of human prion disease.

CORONAVIRUS (COVID-19) AND CREUTZFELDT-JAKOB DISEASE

Posted 07.04.2020, Updated 24.03.2020, Previously posted 17.03.2020.

Following the confirmation of increasing cases of COVID-19 in the United Kingdom, and having considered the advice of health professionals and the current government guidelines, we have made some difficult decisions.

NATIONAL CJD CARE TEAM

Our priority is to minimise the risk as much as possible for patients, their families, carers and our team and therefore we are taking these steps.

We have suspended all travel and will be working remotely. We hope this does not cause any inconvenience and hope you understand why we have taken this action. It will be under regular review.

Both of us will be available over the phone and via email to provide ongoing support and information.

We will continue to get actively involved in care and discharge planning.

Application for the National CJD Care package will continue to be available and will be considered in a timely manner.

CONTACT DETAILS:

Blaire Smith-Bathgate: 07789717487 – email: blaire.smith-bathgate@nhs.net

Margaret Leitch: 07900924832 – email: margaret.leitch@nhs.net

In line with Information Governance and GDPR please keep patient identifiable information to a minimum when sending emails.

CJD AND THE CORONAVIRUS

The advice that we have received regarding COVID-19 and CJD is the same as that being shared and regularly updated by the NHS and the Government.

WE WOULD ADVISE YOU ASK ANY VISITORS COMING INTO YOUR HOME TO WASH THEIR HANDS AT POINT OF ENTRY AND ON LEAVING.

Wash your hands often with soap and water for at least 20 seconds or use an alcohol-based hand sanitiser.

Use an alcohol-based hand sanitiser that contains at least 60% alcohol if soap and water are not available.

Cover your cough or sneeze with a tissue, then throw the tissue in the bin. If you don’t have a tissue, use your sleeve.

Avoid touching your eyes, nose and mouth with unwashed hands.

 

The situation around COVID-19 and the risks it poses is changing rapidly. We advise visiting the following NHS websites for current information and guidance.

If your relative sadly dies during this current situation please visit the following web site:

https://nafd.org.uk/pandemic-planning/

Further advice and guidance:-

 

 

 

 

 

The National Care Team

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The National CJD Care Team is based within the NCJDRSU and was formed in order to optimise the care of patients suffering from all forms of CJD.

Support Groups

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List of CJD support groups in the UK and from around the world.