Coronavirus

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Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Coronavirus

Post by Thumps »

I didn't get a letter, only a text message. But it definitely confirmed that I was in the shielding group (12 years tx)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Chris Wright
Posts: 131
Joined: Sun Nov 19, 2006 9:21 pm

Re: Coronavirus

Post by Chris Wright »

scwebb wrote:

Very surprised to be told I wasn’t included on the list (as far as my GP is concerned) which is why I was wondering if they’d been issued with more specific guidance. But I’ve seen the letter that NHS England sent to GPs and it doesn’t look that way.

Anyway, I’ve asked that my GP look at it again and they’ve said they’ll get back to me. If they still say I’m not in the Extremely Vulnerable group I’ll get in touch my Renal Unit (who posted me my medication for the next three months last week, coincidentally).
Definitely do that.

My letter from my GP has a "List of diseases and conditions considered to be very high risk:"

The first condition is "Solid organ transplant recipients"

You absolutely must be entitled to the letter/text to show to your employer.

Hope you get it.

C
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
morzov
Posts: 19
Joined: Thu Jul 23, 2009 7:52 pm

Re: Coronavirus

Post by morzov »

scwebb wrote:Yes, I was reading it earlier.

I actually started isolating/shielding last Monday on the assumption that I was in the group and told my workplace I’d be off for 12-weeks. They asked for a copy of the letter when it arrived which is why I started chasing it today.

Very surprised to be told I wasn’t included on the list (as far as my GP is concerned) which is why I was wondering if they’d been issued with more specific guidance. But I’ve seen the letter that NHS England sent to GPs and it doesn’t look that way.

Anyway, I’ve asked that my GP look at it again and they’ve said they’ll get back to me. If they still say I’m not in the Extremely Vulnerable group I’ll get in touch my Renal Unit (who posted me my medication for the next three months last week, coincidentally).
Apparently the "go to" resource for Kidney Patients is:

https://www.kidneycareuk.org/news-and-c ... us-advice/

As far as the letter goes it says this in its FAQ:

[i]I haven’t received a letter about shielding
The NHS is working hard to send letters or texts to all who should be self-isolating. However, because it is such a huge task there may be some people who have not yet received a letter despite being in one of the patient groups listed as ‘extremely vulnerable to coronavirus’ (see above).
If you are in one of the extremely vulnerable groups you should not wait for a letter to start self-isolation. If your employer asks for the letter, we recommend showing them the list of patients required to self-isolate.
People who should self-isolate are being identified in a number of ways, which means you may receive your letter from your GP, hospital team or national NHS. This includes from national databases and from records kept by hospital teams. Hospital specialists and GPs are also being asked to check their patient lists for patients who should self-isolate and will not have been picked up through databases.
If you are included in the list of extremely vulnerable people and have not received a letter or text by Monday 30 March and you are in England, you should self-register for support through the government’s portal. You can register yourself, or on behalf of someone else. You should then contact your GP or clinician to explain you haven’t received a letter. It may take time for any support offered through this service to arrive. Wherever possible you should continue to rely on friends, family and wider support to help you meet your needs.
As noted in this guidance, we are currently seeking clarification on whether all people on dialysis should be included in the extremely vulnerable list. This group is not currently on the government’s list, although patients may have received a letter if their overall health needs are judged to make them extremely vulnerable.
[/i]
scwebb
Posts: 5
Joined: Sat Aug 20, 2016 8:52 am

Re: Coronavirus

Post by scwebb »

GP has got back to me with (in essence) “we’re not responsible for this”. They’ve then referred me to the guidelines on gov.uk - the same one’s that say to ring my GP if the letter hasn’t arrived by 29th March.

Can’t get through to my Renal Unit at the mo. Will keep trying.
Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Coronavirus

Post by Thumps »

Bit surprised your renal unit haven't contacted you. It was them that got in touch with me first. There might be info on your hospital page? Is there an email address for your outpatient office?

Good luck. x
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Coronavirus

Post by jooles »

I’m also in the group who hadn’t received a letter - 5 year post Transplant. I phoned GP. He said I wasn’t on list he had been sent - but that many weren’t. He didn’t know who sourced the list. He sent me one via email and I registered with Gov site. Then I phoned my transplant team. They said they had nothing to do with the list. A friend, under same renal unit, has been sent text to say they would be sending info to patients this week. All seems a little haphazard. Still, let’s be grateful for our NHS right now hey!
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
AllenC
Posts: 17
Joined: Mon Dec 19, 2016 1:41 am

Re: Coronavirus

Post by AllenC »

AllenC wrote:I was also expecting to register on the government website.
That's the UK government website by the way.

Apparent we are not a "United Kingdom" it seems.
You can only register if you live in England.
Us in Wales have been ignored..as has our Scotland friends.
It seems I was a little premature in my earlier post.

The Welsh government are now taking action.
I received a phone call today from my local council saying I was identified as in the vulnerable group, and would I answer a few questions....
"Are you self isolating ".....Yes.
"Do you need help with shopping "....Yes.
"Would you like a weekly food parcel"....yes please.

I'm now registered for help with shopping (not entirely sure what help is available but expect to here more shortly)
I can now expect a weekly food parcel courtesy of the government.
grinninglinux
Posts: 4
Joined: Wed Apr 01, 2020 11:55 am

Re: Coronavirus

Post by grinninglinux »

Hi,
It seems a lot of Transplant patients havn't received this Shielding letter during this very anxious time. Apparently its the GP'S job to find and send data back, about possible patients on the computer systems that define you as in the "extremely vulnerable group" . I can only imagine how busy GP's are so it sounds like a massive task they are having to undertake.

I too haven't received this letter, I am 14 Years Transplanted and was told by my Renal Transplant Clinic, which is in another county to start shielding immediately even with out having received this letter. They also told me they are aware of the problem and mentioned if i needed any help with delivery's of meds, food, care etc. to also register on the Gov's web-site and mention during the questions that a letter wasn't received. Hope this was of some help.
Skm
Posts: 44
Joined: Sat Sep 01, 2018 10:13 am

Re: Coronavirus

Post by Skm »

5 years post transplant and I’ve still not received the letter.
Have been shielding for the past 2 weeks.
GP not interested. Too busy and too many staff off to be fair.
Contacted renal unit they just said to register on government site. I had already done that. I understand that there has been further discussion and they are going to send out letter to all transplant patients next week. (Bit late).

I heard from the government site yesterday. They said that as I’d said I hadn’t received the letter they would need to check that I was vulnerable. As I’d said I had friends that could help they wouldn’t help with shopping. All I want is to be able to book a home delivery slot from a supermarket. Not a lot to ask when you are going to be stuck at home for the next 3 months (minimum). I would then no longer be a drain on resources that could be used for others. At the present time they refuse to tell supermarkets I am vulnerable.

Rant over.

Stay safe and keep well. X
Transplant May 2015
scwebb
Posts: 5
Joined: Sat Aug 20, 2016 8:52 am

Re: Coronavirus

Post by scwebb »

Spoke to Renal Unit earlier, they too said that the government was responsible for sending out the letters. When I explained I needed to show something to my employer to prove I was in the group they immediately said “Oh, OK. We’ll send you a letter in the post first class.” So now expecting it tomorrow. :roll:
grinninglinux
Posts: 4
Joined: Wed Apr 01, 2020 11:55 am

Re: Coronavirus

Post by grinninglinux »

Hi,
Found a Poster to download and print off, ideal for transplant recipients front door, window etc. might be of some help.

https://imnda.ie/wp-content/uploads/202 ... ster-4.pdf
Skm
Posts: 44
Joined: Sat Sep 01, 2018 10:13 am

Re: Coronavirus

Post by Skm »

Still no letter - BUT have now had communication from local supermarket (Sainsbury’s) saying they have heard I am vulnerable and offering home delivery slots.
Phew.. problem solved.
Transplant May 2015
wagolynn
Posts: 1326
Joined: Thu May 23, 2013 2:49 pm

Re: Coronavirus

Post by wagolynn »

Hey that's good, assuming they have what you want.
I went to the local store on Thursday, and it was mostly empty shelves.

I have been trying to register with my local Sainsbury's but they say they stopped taking new delivery customers for the moment.

Reading Sainsbury's web site suggest that if you are registered on the government website they will deliver But the government website does not have dialysis patents listed as being in the priority group?
Skm
Posts: 44
Joined: Sat Sep 01, 2018 10:13 am

Re: Coronavirus

Post by Skm »

Wagolyn,

Dialysis patients have just been added to the government list of “extremely vulnerable “ people. - as of Friday I think. Give it a few more days for the form to be updated on the government web site and try again.

Good luck
Stay safe

Sue
Transplant May 2015
Chris Wright
Posts: 131
Joined: Sun Nov 19, 2006 9:21 pm

Re: Coronavirus

Post by Chris Wright »

grinninglinux wrote:Hi,
Found a Poster to download and print off, ideal for transplant recipients front door, window etc. might be of some help.

https://imnda.ie/wp-content/uploads/202 ... ster-4.pdf
Brill, thanks, it's now prominent on my front door!
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
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