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NeST & Covid -19

Thursday, April 2, 2020

Please may I remind you to check previous information given on this website by nephrologists and also visit the government website link for updates regularly  to see updated information for the renal community.


The updated advice is now on the gov website which clearly states those of you immunosuppressed should self isolate and shield for 12 weeks. Those who have recently been weaned off immunosuppression medication fall into this category too! You should receive a letter if you fall within this vulnerable category from your hospital consultant. Please note some letters are still in the process of being sent out. If you are still confused whether you fall within this vulnerable category I would  advise you to telephone the hospital and talk to your consultant's secretary to kindly speak to your consultant on your behalf for advice as to whether you will be receiving a confirmation letter to say to self -isolate for 12 weeks.

Please register on the gov website  as vulnerable and then register with supermarkets within your area who will in due course contact you to offer you grocery delivery slots. If you cannot sign up on the website you can telephone this number 0800 028 8327. This is a simple automated service so you can register your support needs easily and quickly.Also, if you wish the government are delivering FREE additional food parcels,but only if you fall within this extremely vulnerable group.

Please visit the 'Kidney Care UK' website where Nephrotic Syndrome is specifically mentioned on the list of health conditions,together with other helpful information. This website has been updated today.I would strongly advise you to keep checking for regular updates

Another very helpful website for information

If you are a keyworker and are living with someone who has Nephrotic Syndrome who been advised to self -isolate for twelve weeks and to be shielded by close family members and yet concerned you may feel you are possibly compromising their shielding by working, I would strongly advise speaking to your personnel department about these circumstances to see if any alternative arrangements can be made. Please click on the following links for further advice   and

If you are looking for more information on caring for yourself or your loved one with Nephrotic Syndrome please may I refer to our website pages, or  suggest visiting

NeST like many charities and companies, is unable to function in the normal way very sadly and will be going into hibernation until happier and healthier times. All our fundraising and awareness events will not be happening any time soon sadly.But hoping many of you will support us as soon as it is safe to do so and to those of you already enrolled into events please will you kindly consider where if possible with event organisers to transfer your place until next year.Thankyou so much!

Roadshows and conferences  - Podocyte Conference in Manchester in June and UK Kidney week conference at Birmingham have both been postponed until 2021. The Glasgow Roadshow planned September 12th will not go ahead either.

You can still sign up to Patient View and use the Nest app module, via your consultant, or directly on  Patient view website, the latter I would say being the best course of action currently with renal units being very busy.

This is the first phase of the Nest app and in 2021 with the help of the Nest young ambassadors and Nest community – it will be developed further in the coming months.

The NeST Facebook page (private and closed) pages are still most active, so please visit for a chat and further support.The NeST community is very friendly! The social media channels are both inclusive of parents/carers of children and adults.

I hope we can get back to normal as soon as Covid-19 virus is brought under control.



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