No letter

[1234_riley]

I haven't received any letter from anywhere to state I should shield I haven't had anything from anyone so I presumed I was not classed as overly vulnerable I take methrotrexate hydroxychloraquine and sulfazine and I'm 55 I have been working from home x

[springcross]

I only had a call from the Government Helpline this morning although they have been trying to ring me since last Friday. Hang on in there as you may well yet receive a call. x

[Neonkittie17 in reply to springcross]

I haven’t had a letter either and I know I should have so I’m writing to my GP.

[springcross in reply to Neonkittie17]

I had to ring them yesterday on the instructions of the Government Helpline . When I rang them, they said I hadn't been flagged up and also said that they thought the government were supposed to be sending out the letters that's why they haven't bothered.

[Neonkittie17 in reply to springcross]

Thank you I will write to them this week as I have to let my GP know I am postponing my Rituximab infusions.

[JulezH]

Call your GP, they can add you to the list.

[helixhelix]

Look at the various assessment charts, like this one

leedsth.nhs.uk/assets/f6d9e...

You may have other conditions, but otherwise just being on MTX isn’t felt to increase your risk. (Hydroxy and sulpha don’t matter either)

[Katsmam in reply to helixhelix]

Am I being thick but what’s the difference between shielding and strict social distancing

[JFlay in reply to Katsmam]

My interpretation is that people shielding aren't supposed to go out of their house/garden or come into contact with people from outside of their home. I think in some instances some people even have to keep apart from others in their household.

Strict social distancing means you can go out but keep 2 meters away from others if you do.

[kerryhannah in reply to JFlay]

The Leeds NHS flow chart says “no outside work, shopping or exercise” for strict social distancing. I’ve taken it to mean the same as shielding apart from having to stay apart from people in your house. I’m from Oxford and was sent this flow chart from my rheumatology department to self-assess.

[JFlay in reply to kerryhannah]

😂 I'm in Oxford too! I didn't get a flow chart though, just a way to work out my risk score which is low as I'm just on hydroxy. So I'm going out but not venturing out of the local area and keeping 2m away from anyone I meet when out.

[kerryhannah in reply to JFlay]

Actually, you’re right (sorry)... no flow chart in the post, just the scoring thing but it had Leeds NHS written on it so I also used the flow chart to help me (feels like months ago I did that!). Am the middle one so it said “strict social distancing”. Am hoping they re-evaluate anyway and I can be downgraded so I can at least go out for a walk each day!

[JFlay in reply to kerryhannah]

My low score comes out as 'strict social distancing' too, but I've been going out for a walk. It's all very confusing 😷

Edited to say:

I've now checked the letter and the Leeds NHS flow chart, flow chart says 'standard' social distancing but the letter says 'strict' social distancing for me 🙄

But: the NRAS flow chart is different to the NHS one!

[kerryhannah in reply to JFlay]

Oh gosh... so hard to know what to do! Just going to stay in for now. I thought the letter we got was a holding one and they were going to contact us once they had evaluated us but I guess not?! Am a teacher so luckily they don’t want vulnerable people in, even if just controlled asthma.

Just re-read the letter which says for me to do strict social distancing with discretion to shield. On the Oxford Rheumatology website is the Leeds NHS flowchart which says that strict social distancing means no shops, outside work or exercise. I think we have to just decide what suits us and hope there is some sort of way out soon 🤞🏼

[medway-lady in reply to JFlay]

I got the shielding because of CKD and it was scary it came weeks ago, only house and garden, pack a bag with list of medications and consider how you wish to be treated. Sleep alone with own bathroom and try not to share a kitchen etc. How someone in a flat with a family can do this is hard to understand. Oh and contact if first suspect the virus. Not reassuring but I've followed the instructions as It has to taken seriously.

[JFlay in reply to medway-lady]

😟

[helixhelix in reply to Katsmam]

No not thick as this whole thing is so horribly confusing. Shielding means not going outside your home at all, and also puts constraints on other members of your family. Bit it does mean you can get priority shopping and that your employer should furlough you. Strict social distancing means you can go out for a walk.

The family constrains of shielding are that you basically have to live apart from your family unless they stay indoors with you 24/7

Minimise the time other people living with you spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.

Keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, use a separate bathroom from the rest of the household. Use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.

If you share a toilet and bathroom with others, it’s important that they are cleaned every time after use (for example, wiping surfaces you have come into contact with). Consider drawing up a rota for bathing, with you using the facilities first.

If you share a kitchen with others, avoid using it while they’re present. If you can, take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing-up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.

[ldwilliams in reply to Katsmam]

the level of help that you can get

[Ozzy in reply to Katsmam]

My letter from the hospital said strict social distancing means no going shopping!! they put that in the letter in case of any confusion, not going out but I am ok to share my home with my family but they should wash their hands if they go out. I am going out for walks as I live in a small village so I hardly see anybody and I cross the road if there is someone on my side. My mother who is shielded is not supposed to share kitchen, bathroom etc with my father

[AgedCrone]

I had the first call from anybody yesterday 5 May......when I told the young lady who called this was the first time I’d had any contact , she said that at the beginning there had been great confusion as to which department should do what. Consequently some tasks were doubled up on and others completely missed out.

So don’t despair you May hear something soon.

The confusion is no excuse and it wasn’t her fault ...in fact I feel quite sorry for the people calling......they are just the messengers & I’m sure a lot of people are taking out their frustrations on them.

[Pippy25 in reply to AgedCrone]

I have just spoken to my GP (who is lovely) this morning and whilst she has told me to shield from day one and continues to tell me that I should shield, it appears that I do not fit into any categories because at the time of this outbreak I was awaiting further blood tests and am currently not taking anything (Too complicated and complex to go into). Therefore in the eyes of this confusing system I am not deemed as at risk, vulnerable and therefore will not be getting any letter or offered support. It's a catch 22 situation as I cannot have the tests at this moment in time . My body given my historical and current health tells me I would not be able to fight this virus. I could hear her frustrations about this situation alongside other personal things she knows I am going through right now, but I guess there will be people who are vulnerable who simply don't fit into 'the box' so to speak and it looks like I am one of them. So I will continue to keep doing what I am doing and be the best judge of my health. I hear what you say in respect of 'don't shoot the messenger' in respect of the people contacting, as there have been messages left from council workers identifying my late dad as 'high risk' and countless offers of support, leaflets dropped through offering him names and numbers of organisations offering support etc. So I acknowledge they are only 'reading from the list they've been given' However his living daughter here with health issues can't even be identified as being at risk.

[AgedCrone in reply to Pippy25]

I see there is very little you personally can do about your situation but there is certainly something your GP could do about it. There must be somebody she can actually contact at the local health authority explaining your situation and explaining it’s vital as a vulnerable patient you get whatever assistance is available. Get back to her and point this out.

Unfortunately it is a real muddle.Do you have contact with your rheumatologist’s secretary or PALS at your hospital..Talk to them. ..they may have contacts who can help.

Another route would be to contact one of your local councillors ....look up who he or she is online and send him or her an email explaining the situation about your late father and explain your situation.

But don’t give up...the more people you Contact The more likely it is you will have some success in getting on the lists you need to be on.

Have you spoken to NRAS support to see if they have any ideas?

Have you asked any of your friends if they can help you contact the right people?

I’m now fresh out of ideas, but as elderly lady living alone I do understand how frustrating you are finding things.

I have been there,& you just have to keep on knocking in doors until one opens.

I know it’s not fair...but you will win out in the end.

[Pippy25 in reply to AgedCrone]

Thanks AC for your support and suggestions, my situation is complex and I get that and the fact I don't fit into the boxes in one respect but I am fighting so many battles at the moment in respect of my health and also in respect of more personal things that are upsetting. Sadly I don't have any support from my rhuematology at the moment and after my last appointment and the inaccuracies in my notes prior to this virus I was in the process of addressing this. I know I could contact my local MP who has supported me in the past but I do wonder at this point almost 8 weeks into my shielding what will I benefit from this. I know and in normal circumstances that I should persue this, but I am wondering with all I am dealing with at the moment I need to think through and weigh up what would be the benefit of getting a letter/ support at this stage. Again thanks for suggesting the NRAS helpline too and this may help me get some clarity. As you know from my posts I keep going and down like having 'wobbles' and have faced so much in my 55 years which has made me stronger in spirit, but this needs some thinking through. Take care and I am so glad that finally you got that call offering support, it was a long time coming but am so pleased you have been contacted. x

[AgedCrone in reply to Pippy25]

Take a day off & charge your batteries....eat what you like & just put everything out of your mind.....it’s very therapeutic to say ‘the hell with it.’

Do you really want the aggravation of contacting your GP?

Right now MP’s of all persuasions are really dealing with so much I think you might not get the attention you need.

I think you would get much more local knowledge & sympathetic intervention from a local councillor

As you say...we are hopefully through the worst of it & we’re still standing!

So better things to come!

[Pippy25 in reply to AgedCrone]

Thank you AC for your sound advice I am grateful. I'm thinking about what I really need to prioritise right now and what I need to channel my energies into and need to think about what having this letter may mean verses some of the other difficult things I am having to deal with right now. A good idea to take a day off tomorrow and yes you are right 'to hell with things'.....I'm here and still standing! Always good to have the support from people on this site so once again thanks and take care x

[ldwilliams]

get your GP to look at this, Ever GP in the country has been sent this

england.nhs.uk/coronavirus/...

[beeckey]

I have not heard from any one.I will be 70 in a few months and i take Tozilimabab and was taking steroids at the start I managed to get priority shoping. Sorry about the spelling