Information sent out from Leeds chapel Allerton rheumatology

[Willow1414]

Morning everyone , hope your all as well has can be .

I write this post regarding information from the shielding help line who phones me yesterday .

They do not have the information that chapel Allerton have sent out to patients ??

She was most concerned , and said I should be in the high risk shielding group , this is worrying to say the least ? We had a long conversation regarding my diagnosis and recent flare together with my 2 recent chest X-ray results .

She does not understand and has no knowledge of a middle vulnerable group, and found that must worrying , she said NHS England have only high risk shielding ofwhich lupus diagnosis SLE is in the high risk shielding group , government guidelines for every one else .

I cannot get sorted at all with any online shopping .

I have not been out for 5 weeks now .

I have been offered a volunteer to do my shopping , I feel very uncomfortable at putting another person at risk . When all I need is to get a slot for online shopping and be put on the priority list .

I feel very guilty putting a volunteer at risk

Does anyone else feel concerned about the chapel Allerton guidelines . ??

🦋❤️

[Paul_Howard Partner LUPUS UK]

Hi Willow1414 ,

To be clear, are you a patient at the rheumatology clinic of Chapel Allerton Hospital?

Was it someone from the department who called you with the shielding advice, or was it someone else?

They are still identifying people who should be shielding. GPs have now been given a deadline of 28th April to complete this.

If you have been identified as someone who needs to shield then you should be able to register for the support packages and priority shopping (if you live in England). If you've not received information about this yet, it is probably best to register yourself at gov.uk/coronavirus-extremel...

[Willow1414 in reply to Paul_Howard]

Hi Paul

Yes I applied on the government web page . It was a person from the shielding helpline who called me after I applied .

It’s most confusing , I feel I’m at most risk and should be shielding the shielding helpline agree , yet I have a letter from chapel Allerton as have all patients of the rheumatology department at chapel Allerton . The helpline tells me they also need to take every patients other conditions and medical records into consideration . I am in a flare and my condition is not been treated has I cannot tolerate 2 of the blue box meds , Im offered another blue box med and I take hydroxychloroquine , but nurse said it might be best to wait , yet I’m still in a flare . This means just following the guideline letter and not considering anything else I’m at normal risk ??

Yet when I read the link provided by NHS England and speak to the shielding helpline I’m at high risk and should have a shielding letter ,

I find this most worrying .

I have spoken to my practice doctor .

She said they have very strict guidelines and only follows the stated conditions on this , although shielding help line said they cannot mention ever single serous condition , and said lupus would come rare dresses and I should have a shielding letter .

I just feel like nobody is singing from the same hymn sheet

What can I do ?

I need to get a slot to get online shopping .

The only way to have shopping delivered is to be on the shielding list and you get priority , I live alone , I have no family or friends to get me shopping or anything else . My daughters live in London and my friends are shielding .

Help 🦋

[Paul_Howard Partner LUPUS UK in reply to Willow1414]

Hi Willow1414 ,

I think you've summed it up quite well, saying that they aren't all singing from the same hymn sheet. Was the person on the shielding helpline not able to ensure you were marked as such on your records and provided the shielding support?

Have you tried speaking to your rheumatology team?

[Willow1414 in reply to Paul_Howard]

No , she said that the supermarket Morrison’s should get in touch ??

Not has yet .

She said to get in touch with JP . ??

This I have done , back to square one ??

She did say there is no such thing has middle ground in the isolating . Just shielding with letter or the government guidelines for all . ?????

I’m so worried , I e ordered a wheels trolly from eBay , Yet cart walk far due to flare in my joints . What a nightmare .

Can we have cloth and is it just Leeds chapel Allerton making this list or the whole of England ??

🦋

[Willow1414 in reply to Willow1414]

Hi Paul

Sorry about the predictive tx

Please change the word cloth to clarity in my last message to you .

🙄🦋❤️

[Paul_Howard Partner LUPUS UK in reply to Willow1414]

In some cases I have heard of supermarkets contacting people on the shielding list to offer them a delivery slot - this isn't always the case though. Are you able to try and contact local supermarkets to see if they can help? I believe each chain is supporting people in a slightly different way but they should have dedicated phone lines for this purpose.

There isn't any guidance from the government for the 'moderate risk/vulnerable' group beyond 'strict' social distancing (this is something we've been trying to get addressed. The guidance from a number of rheumatology departments is for people in this group to stay home from work and avoid supermarkets and public transport. They are more at risk than the rest of the population, so it makes sense that they should take additional precautionary measures.

I'm not sure if I've confused things by including the guidance from Chapel Allerton in our post. They are not making the list or providing guidance for the whole country - they had just produced better resources for patients that I'd seen elsewhere.

[Willow1414 in reply to Paul_Howard]

I hope this can be sorted very very soon .

Thank you Paul .

Maybe Leeds chapel Allerton Hospital should extend the list to the shielding helpline . I do feel that would be a very good idea . !!

NHS uk would than have to scrum what they say about lupus and shielding etc .

Told not to go out to supermarket , yet cannot get a online slot .

Yes I’ve have tried all options for a delivery.

No phone line , just emails , not been answered , indeed if they have an answer .

Clarity please , on a national level ??

🦋❤️

[Paul_Howard Partner LUPUS UK in reply to Willow1414]

Hi Willow1414 ,

Are you a patient at Chapel Allerton? If you are and they have you on the high-risk list then that should have been shared with the shielding support line.

I've just searched for information about the Morrison's support service -my.morrisons.com/doorstep-d...

"Our Morrisons Doorstep delivery service is available to vulnerable and elderly members of the community, unable to go shopping in-store.

Call 0345 611 6111 and select option 5 to place your order."

[Willow1414 in reply to Paul_Howard]

Thank you sooo much Paul . I will call this number and let you know .

❤️🦋

[Willow1414 in reply to Paul_Howard]

Hi Paul

Just phoned up , line closed open 8 till 4 .

I will try again tomorrow . Thank you

🦋❤️

[Ruby3333]

Hi I not had letter either was told to ring my DR they don’t want to do letters either had to get sick note stating isolate 12 weeks but work not happy about that and I work at Dr surgery said will only get paid sick pay if I don’t have letter absolute joke I have SLE and C O P D but have got online shopping at least I’m getting food register with gov.uk good luck🥰

[PMRpro]

"I have been offered a volunteer to do my shopping , I feel very uncomfortable at putting another person at risk"

These are the NHS volunteers - over 600,000 people who have been signed up and security cleared to be able to do this. You are no more putting them at risk than the person working at S'burys or Tesco who picks your order or the delivery driver who delivers it to your door. It is a way of increasing the capacity which is greatly stretched - a lot of it by people who are used to online shopping and still doing so as well as people like you or me who suddenly needed it and added to the numbers. Into the bargain, these volunteers will have been trained in how to minimise contamination and proper use of PPE when delivering to the vulnerable - so you are likely to be at less risk than from a delivery driver or who has just dropped stuff off at a couple of dozen other customers.

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Hi Willow1414 I'm also a patient at Chapel Allerton. Can I ask what letter you have received as I haven't had one?

I had a telephone appointment on Thursday and am starting Azathioprine on Monday, the consultant said I do not need to shield and there is no increased risk of catching the coronavirus or suffering increased effects from it.

I also had a conversation with a GP yesterday and he said there are three categories and I will be in the middle one when I start Azathioprine and to stay at home. I asked about shielding and he said only if I was on 2 medications such as steroids and the Azathioprine.

I have been staying at home for 5 weeks now. I presume the middle one is staying at home but still allowed to exercise outside the house for an hour a day but no trips to supermarkets etc?