Abandoned: I have Lupus and scleroderma and on 25mg... - LUPUS UK

LUPUS UK

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Abandoned

PickledGinger profile image
20 Replies

I have Lupus and scleroderma and on 25mg methotrexate yet my doctor has said I am only moderately at risk yet I must isolate for at least two months. Because I am listed as moderate I can’t get any food deliveries and help getting meds. I have no one who can help me and I feel like I have been completely abandoned. Every day I watch healthy people queue up and stock up on goods and I can’t even get basics. I had to phone the doctor because not a single person from the clinic or my GP have been in touch and all they said was to isolate and get friends to help....er I dont have any or any family who can help, I feel as though I have been written off.

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PickledGinger profile image
PickledGinger
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20 Replies

Oh no! There must be some type of help organization, Good Samaritan group, church group or something? I am so very sorry but I bet that someone in here knows of something. I am in the US so I don’t know what you have available. 🙏all my best. Someone will help, I’m sure of it.

PickledGinger profile image
PickledGinger in reply to

Thank you, I am going to contact my local council as they may be able to help me. Stay safe. 🙏

in reply to PickledGinger

I hope you find someone. Thank you, you too.

happytulip profile image
happytulip

Are you in the UK?

PickledGinger profile image
PickledGinger in reply to happytulip

Yes, I think I have a solution 🙏 local council may help.

happytulip profile image
happytulip

Google Covid-19 mutual aid. There should be a support group in your local area. If there isn't then set up a Facebook account if you don't have one and there should be a support group on there.

If that fails then call the local council and register yourself as vulnerable.

If all else fails contact your local church as they will know someone in the community who has organised a group of helpers. So many communities are pulling together all over the country.

So

1. Covid-19 Mutual Aid

2. Local Facebook group

3. Local council

4. Church and local community projects.

Let us know how you get on.

PickledGinger profile image
PickledGinger in reply to happytulip

Thats really great thank you.

happytulip profile image
happytulip in reply to PickledGinger

No problem. Let us know if you get anywhere. It's useful to know where people are getting help so we can pass it on to others.

PickledGinger profile image
PickledGinger in reply to happytulip

I have contact my doctor to request a letter and I will keep trying the council. I will let you know how it goes. 🙏

maybehope profile image
maybehope

Please, PLEASE contact your Council as each Council is organising local help for people that are in need of deliveries but have not been put on the list!!!!!!!!!!!!!

PickledGinger profile image
PickledGinger in reply to maybehope

Brilliant I will do that now. 🙏

miccika1 profile image
miccika1

So you know to order food and medicine online? If not I can help just message me and I will teach you how to do it.

PickledGinger profile image
PickledGinger in reply to miccika1

I always order online the problem is the food stores are not doing deliveries unless you are classified as in the critical level. I have been put in the moderate despite having two illnesses that put me in the critical list. My GP is delivering my meds so thats now sorted but food is still a problem. I will contact my council to see if they can help.

miccika1 profile image
miccika1 in reply to PickledGinger

Can you ask your GP to re-classify you? That seems it would solve the problem. Where do you live? Did you explore all possible delivery options in your area?

Hamptons profile image
Hamptons

I am in a similar position but think I get low risk but isolate. Would love clarification cos if I am that low risk I will get it myself.

My local council have asked for people to tell them if they are alone and need help. There is a link on their webpage. Also, my local church has reached out and the local residents group. Look these up online for your area.

It’s a time to reach out - pride gets us nowhere at this point. A nice lady from church brought me milk, which had a double impact - I had milk and I felt less alone.

I am normally a volunteer and work for several charities so am doubly frustrated. But from that I know they mean kindness and want to help. They are genuine in their concern so let them help. Where are you and I will help you search support.

PickledGinger profile image
PickledGinger in reply to Hamptons

Thank you. Someone has suggested I contact my local council so I will do that first. I live in a small village and our church closed a long time ago sadly. I have lived here 15 yrs and everyone knows this is a vulnerable house and no one is helping anyone, so disappointing, even my landlord the national trust haven’t bothered and they know me really well. One family have literally filled two sheds with produce, they’ve shopped every single day and they wont help anyone not even the elderly, its appalling.

Hamptons profile image
Hamptons

That is sad. A reflection on them not you. Try your council page - we will find a way to get you help.

PickledGinger profile image
PickledGinger in reply to Hamptons

It is sad, you don’t expect that in small communities. I have contacted my GP and am waiting to here from them. I have also tried the council but like many I can’t get through but will keep at it. What I don’t understand is why people who are on the highest rate of PIP or DLA don’t automatically qualify as vulnerable and need help. Thanks for you support, online support is just as valuable.

miccika1 profile image
miccika1 in reply to PickledGinger

Hope your GP will re-classify you! I see now the problem. Keep trying , something will work out.

Hamptons profile image
Hamptons in reply to PickledGinger

I think the clarification is about immunity level as opposed to vulnerability. They are thinking what you would need should you be admitted to hospital not how you manage in isolation.

Are you internet savvy as there may be a link on the council page, that’s how I did mine. Maybe more efficient if people are working from home. Bizarrely, my dentist has just sent a letter offering to help with food and medicines.

Where are you and I will see if there are any support groups.

Morrison’s boxes seem a quicker online option as they are just sending them out. No choices but it’s all an adventure.

The other option is Social Services adult disability service they may have recommendations.

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