Shielding letter: Has anybody on Azathioprine... - Behçet's UK

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Shielding letter

MrsB1
MrsB1

Has anybody on Azathioprine and / or Humira had a letter regarding their ‘shielding’ yet?

I thought that given the fact that I’m on both might mean that I’ll get one but I haven’t received anything yet.

22 Replies
oldestnewest

Hi! What is a ‘shielding’ letter?

Thanks

TonyWT
TonyWTAdministrator

Dear Mrs B1,

I suggest you make contact with your GP/Health Centre or treating clinician and inform (remind!) them what drugs you are on and quote the reference.

Hope this helps.

Tony

TonyWT
TonyWTAdministrator
in reply to TonyWT

further to my above comment

Not everyone in the ‘extremely vulnerable’ group has been contacted by the NHS so far. In a letter to all GPs, national director for primary care Nikita Kanani said: “Central data sets are not sophisticated enough to identify all categories of patients who should be included in the vulnerable groups list.” GPs and hospital clinics are currently reviewing their patient registers and conducting risk stratification to identify more patients who need to be instructed to ‘shield’ for 12 weeks.

So suggest, only for those who need, help them in this task.

MrsB1
MrsB1
in reply to TonyWT

This might be an ‘in-an-ideal-world’ suggestion I’m afraid. I called me GP yesterday for help and the receptionist told me ‘it’s not our problem’.

I’m aware that everyone is different but I turned to this forum as a last resort. So if I don’t get a letter because my GP isn’t communicating with me I can at least follow along based on what everyone else that takes the same medication is doing .

TonyWT
TonyWTAdministrator
in reply to MrsB1

Understood. I have sent you a private message. Please could you respond to the question, one way or the other. Thanks. Tony

UKbehcetsLady
UKbehcetsLady
in reply to MrsB1

The receptionist at my GP surgery said the same thing - letters are being sent by the government and are nothing to do with us...

hi Mrs B1,

it seems that the NHS haven't go a very clear database, I have received a letter but that is because I am on immune-suppression treatment.

However everyone with Behçet's syndrome should have a letter as Behçet's syndrome is an auto-inflammatory - auto-immune disease.

I hope this gets sorted out for you and everyone ASAP.

I wish you well.

#Solidarity always.

rosshi

MrsB1
MrsB1
in reply to rosshi

Thanks Rosshi. I too am on immunosuppressants but because I live in Wales our NHS is devolved. Public Health Wales are asking GP’s to contact people, and my GP’s receptionist won’t help me in anyway (“it’s not our problem” is the response I got yesterday).

As long as I know what others are doing the I can mirror it without waiting for my GP to send out letters.

rosshi
rosshi
in reply to MrsB1

That's absolutely appalling it is your surgery's responsibility, can you e-mail your GP? Put your concerns in an attached letter perhaps? Or contact any consultant you may have? Above all self-isolate as much as possible, I hope your have family and friends who can help you during this.

I wish you well.

Best regards,

rosshi

gillianTS
gillianTS
in reply to rosshi

Hi rosshi

Can you please share the content of the letter you received, like others on the list who fall outside of the England NHS area, I am in Scotland, we are all still waiting for guidance. To help us all both in the UK and outside would be I am sure very beneficial. Once I know I can take this up with my consultant and GP, like many our GP's really are not our main point of contact.

Thank you in advance for any details you are happy to share.

Gillian

rosshi
rosshi
in reply to gillianTS

hi Gillian,

here it is in full;

IMPORTANT: PERSONAL 21st March 2020

Dear *************,

Your NHS number: **********

IMPORTANT ADVICE TO KE P YOU SAFE FROM CORONAVIRUS

Your safety and the continued provision of the care and treatment you need is a

priority for the NHS. This letter gives y u advice on how to protect yourself and

access the care and treatment you ne d.

~ The NHS has identified you, or the named person you care for, as someone at

risk of severe illness if you catch Coronavirus (also known as COVID-19). This

is because you have an underlying disease or health condition that means if you

catch the virus, you are more likely to be admitted to hospital than others.

The safest course of action is for you to stay at home at all times and avoid all

face-to-face contact for at least twelve weeks from today, except from carers

and healthcare workers who you must see as part of your medical care. This

will protect you by stopping you from coming into contact with the virus.

If you are in touch with friends, family or a support network in your community who

can support you to get food and medicine, follow the advice in this letter. If you do

not have contacts who can help support you go to gov.uk/coronavirusextremely-

vulnerable or call 0800 0288327, the Government's dedicated helpline

If, at any point, you think you have developed symptoms of coronavirus, such as a

new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice

using the NHS 111 online coronavirus service (111.nhs.uk/covid-19/). If you

do not have access to the internet, call NHS 111. Do this as soon as you get

symptoms.

You, or the person you care for, should:

• strictly avoid contact with someone who is displaying symptoms of coronavirus

(COVID-19). These symptoms include high temperature (above 37.8 °C) and/or a

new and continuous cough

• not leave your home

• not attend any gatherings. This includes gatherings of friends and families in

private spaces e.g. family homes, weddings and religious services

• not go out for shopping, leisure or travel. When arranging food or medication

deliveries, these should be left at the door to minimise contact

••••••••••••••••••cc••••••••••••••••••

• keep in touch using remote technology such as phone, internet, and social media

• use telephone or online services to contact your GP or other essential services

• regularly wash your hands with soap and water for 20 seconds. Ask carers or

support workers who visit your home to do the same.

The rest of your household should support you to stay safe and stringently follow

guidance on social distancing, reducing their contact outside the home. In your

home, you should:

• minimise the time you spend with others in shared spaces (kitchen, bathroom and

sitting areas) and keep shared spaces well ventilated

• aim to keep 2 metres (3 steps) away from others and encourage them to sleep in

a different bed where possible

• use separate towels and, if possible, use a separate bathroom from the rest of the

household, or clean the bathroom after every use

• avoid using the kitchen when others are present, take your meals back to your

room to eat where possible, and ensure all kitchenware is cleaned thoroughly.

If the rest of your household are able to follow this guidance, there is no need for

them to take the full protective measures to keep you safe.

You will still get the medical care you need during this period. We are considering

alternative options for managing your care and will be in touch if any changes are

needed. Your hospital care team will be doing the same. We also advise-that:

1. Carers and support workers who come to your home

Any essential carers or visitors who support you with your everyday needs can

continue to visit, unless they have any of the symptoms of coronavirus, All visitors

should wash their hands with soap and water for 20 seconds, on arrival and often.

It is also a good idea to speak to your carers about what happens if one of them

becomes unwell. If you need help with care but you're not sure who to contact

please visit gov.uklcoronavirus-extremel....

2. Medicines that you routinely take

The government is helping pharmacies to deliver prescriptions. Prescriptions will

continue to cover the same length of time as usual. If you do not currently have your

prescriptions collected or delivered, you can arrange this by:

1. Asking someone who can pick up your prescription from the local pharmacy,

(this is the best option, if possible);

2. Contacting your pharmacy to ask them to help you find a volunteer (who will

have been ID checked) or deliver it to you.

You may also need to arrange for collection or delivery of hospital specialist

medication that is prescribed to you by your hospital care team.

2

3. Planned GP practice appointments

Wherever possible, we will provide care by phone, email or online. But if we decide

you need to be seen in person, we will contact you to arrange your visit to the i surgery or a visit in your home.

~'" s§~~ 4. Planned hospital appointments 0'"

Q~. §§ NHS England have written to your hospital to ask them to review any ongoing care

;::r=2 ~~ that you have with them. It is possible that some clinics and appointments will be

cancelled or postponed. Your hospital or clinic will contact you if any changes need

to be made to your care or treatment. Otherwise you should assume your care or

treatment is taking place as planned. Please contact your hospital or clinic directly if

you have any questions about a specific appointment.

5. Support with daily living

Please discuss your daily needs during this period of staying at home with carers,

family, friends, neighbours or local community groups to see how they can support

you. If you do not have anyone who can help you, please visit

gov.uklcoronavirus-extremel....

This letter is evidence, for your employer, to show that you cannot work outside the

home. You do not need to get a fit note from your GP. If you need help from the

benefit system visit gov.ukluniversal-credit.

6. Urgent medical attention

If you have an urgent medical question relating to your existing medical condition, or

the condition of the person you are caring for please contact us, or your specialist

hospital care team, directly. Where possible, you will be supported by phone or

online. If your clinician decides you need to be seen in person, the NHS will contact

you to arrange a visit in your home, or where necessary, treatment in hospital.

To help the NHS provide you with the best care if you need to go to hospital as a

result of catching coronavirus, we ask that you prepare a single hospital bag. This

should include your emergency contact, a list of the medications you take (including

dose and frequency), any information on your planned care appointments and things

you would need for an overnight stay (snacks, pajamas, toothbrush, medication etc).

If you have an advanced care plan, please include that.

7. Looking after your mental well-being

We understand that this may be a worrying time and you may find staying at home

and having limited contact frustrating. At times like these, it can be easy to fall into

unhealthy patterns of behaviour, which can make you feel worse. Simple things you

can do to stay mentally and physically active during this time include:

• look for ideas for exercises to do at home on the NHS website

3

• spend time doing things you enjoy - reading, cooking and other indoor hobbies

• try to eat healthy, well-balanced meals, drink enough water, exercise regularly,

and try to avoid smoking, alcohol and recreational drugs

• try spending time with the windows open to let in fresh air, arranging space to sit

and see a nice view (if possible) and get some natural sunlight. Get out into the

garden or sit on your doorstep if you can, keeping a distance of at least 2 metres

from others.

You can find additional advice and support from Every Mind Matters and the NHS

mental health and wellbeing advice website.

Further information on coronavirus, including guidance from Public Health England,

can be found on the nhs.uk ' and gov.uk2 websites.

Yours sincerely,

******** Medical Practice

01*** ******

List of diseases and conditions considered to be very high risk:

1. Solid organ transplant recipients

2. People with specific cancers

• People with cancer who are undergoing active chemotherapy or radical

radiotherapy for lung cancer

• People with cancers of the blood or bone marrow such as leukaemia,

lymphoma or myeloma who are at any stage of treatment

• People having immunotherapy or other continuing antibody treatments for

cancer

• People having other targeted cancer treatments which can affect the immune

system, such as protein kinase inhibitors or PARP inhibitors

• People who have had bone marrow or stem cell transplants in the last 6

months, or who are still taking immunosuppression drugs

3. People with severe respiratory conditions including all cystic fibrosis, severe

asthma and severe COPD

4. People with rare diseases and inborn errors of metabolism that significantly

increase the risk of infections (such as SCID, homozygous sickle cell)

5. People on immunosuppression therapies sufficient to significantly increase risk of

infection

6. People who are pregnant with significant heart disease, congenital or acquired

nhs.uk/conditions/coronavir...

gov.uk/coronavirus

I hope this is useful to you, I will do a fresh post with the information for everyone too, feel free to share I have taken out any personal details of mine...

ATB

rosshi :-)

gillianTS
gillianTS
in reply to rosshi

Hi rosshi

Thank you very much for helping everyone of us on the forum who has not received any news from the NHS, here in Scotland yet to happen and for other's around the world who might not receive any news from their governments about how to manage during the Coronavirus, this will be helpful.

My brother in-law (diabetes) has just literally received a text message so hopefully the people who live in Wales might now start to receive the kind of advice you have received too.

Take care of yourself and thanks.

Gillian

rosshi
rosshi
in reply to gillianTS

hi Gillian,

no problem, you take good care too, I'll do that general post now.

I wish you well, take care and stay safe.

ATB rosshi

Hi

You can self register as an extremely vulnerable person using this link. I had registered myself.

I was identified by the NHS as being an extremely vulnerable person and was sent a text with this link in it. I am on immune suppressants for Behcets.

It is also available on the government web site for anyone to register if they fall into thefocussed group of people with medical conditions.

Good luck

gov.uk/coronavirus-extremel...

Hi MrsB1,

Hi im also in Wales ive had a phone chat with my GP Who says that as im on Methotrexate and Infliximab infusions which i had last one on Monday....terrified going for that one ,but was told keep going..

i fall into the Very High group risk just for the Meds , and then add on the Behcets and other autoimmune problems

Wether the Welsh assembly will write as in England and state this in black and white is a different thing.....

From what i can see they are absolutely useless this side of the border

Stay well

Kev

Hi rosshi

Can you please share the content of the letter you received, like others on the list who fall outside of the England NHS area, I am in Scotland, we are all still waiting for guidance. To help us all both in the UK and outside would be I am sure very beneficial. Once I know I can take this up with my consultant and GP, like many our GP's really are not our main point of contact.

Thank you in advance for any details you are happy to share.

Gillian

If you still haven't had one, this is what mine says;

IMPORTANT: PERSONAL 21st March 2020

Dear *************,

Your NHS number: **********

IMPORTANT ADVICE TO KE P YOU SAFE FROM CORONAVIRUS

Your safety and the continued provision of the care and treatment you need is a

priority for the NHS. This letter gives y u advice on how to protect yourself and

access the care and treatment you need.

~ The NHS has identified you, or the named person you care for, as someone at

risk of severe illness if you catch Coronavirus (also known as COVID-19). This

is because you have an underlying disease or health condition that means if you

catch the virus, you are more likely to be admitted to hospital than others.

The safest course of action is for you to stay at home at all times and avoid all

face-to-face contact for at least twelve weeks from today, except from carers

and healthcare workers who you must see as part of your medical care. This

will protect you by stopping you from coming into contact with the virus.

If you are in touch with friends, family or a support network in your community who

can support you to get food and medicine, follow the advice in this letter. If you do

not have contacts who can help support you go to gov.uk/coronavirusextremely-

vulnerable or call 0800 0288327, the Government's dedicated helpline

If, at any point, you think you have developed symptoms of coronavirus, such as a

new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice

using the NHS 111 online coronavirus service (111.nhs.uk/covid-19/). If you

do not have access to the internet, call NHS 111. Do this as soon as you get

symptoms.

You, or the person you care for, should:

• strictly avoid contact with someone who is displaying symptoms of coronavirus

(COVID-19). These symptoms include high temperature (above 37.8 °C) and/or a

new and continuous cough

• not leave your home

• not attend any gatherings. This includes gatherings of friends and families in

private spaces e.g. family homes, weddings and religious services

• not go out for shopping, leisure or travel. When arranging food or medication

deliveries, these should be left at the door to minimise contact

••••••••••••••••••cc••••••••••••••••••

• keep in touch using remote technology such as phone, internet, and social media

• use telephone or online services to contact your GP or other essential services

• regularly wash your hands with soap and water for 20 seconds. Ask carers or

support workers who visit your home to do the same.

The rest of your household should support you to stay safe and stringently follow

guidance on social distancing, reducing their contact outside the home. In your

home, you should:

• minimise the time you spend with others in shared spaces (kitchen, bathroom and

sitting areas) and keep shared spaces well ventilated

• aim to keep 2 metres (3 steps) away from others and encourage them to sleep in

a different bed where possible

• use separate towels and, if possible, use a separate bathroom from the rest of the

household, or clean the bathroom after every use

• avoid using the kitchen when others are present, take your meals back to your

room to eat where possible, and ensure all kitchenware is cleaned thoroughly.

If the rest of your household are able to follow this guidance, there is no need for

them to take the full protective measures to keep you safe.

You will still get the medical care you need during this period. We are considering

alternative options for managing your care and will be in touch if any changes are

needed. Your hospital care team will be doing the same. We also advise-that:

1. Carers and support workers who come to your home

Any essential carers or visitors who support you with your everyday needs can

continue to visit, unless they have any of the symptoms of coronavirus, All visitors

should wash their hands with soap and water for 20 seconds, on arrival and often.

It is also a good idea to speak to your carers about what happens if one of them

becomes unwell. If you need help with care but you're not sure who to contact

please visit gov.uklcoronavirus-extremel....

2. Medicines that you routinely take

The government is helping pharmacies to deliver prescriptions. Prescriptions will

continue to cover the same length of time as usual. If you do not currently have your

prescriptions collected or delivered, you can arrange this by:

1. Asking someone who can pick up your prescription from the local pharmacy,

(this is the best option, if possible);

2. Contacting your pharmacy to ask them to help you find a volunteer (who will

have been ID checked) or deliver it to you.

You may also need to arrange for collection or delivery of hospital specialist

medication that is prescribed to you by your hospital care team.

2

3. Planned GP practice appointments

Wherever possible, we will provide care by phone, email or online. But if we decide

you need to be seen in person, we will contact you to arrange your visit to the i surgery or a visit in your home.

4. Planned hospital appointments

NHS England have written to your hospital to ask them to review any ongoing care

that you have with them. It is possible that some clinics and appointments will be

cancelled or postponed. Your hospital or clinic will contact you if any changes need

to be made to your care or treatment. Otherwise you should assume your care or

treatment is taking place as planned. Please contact your hospital or clinic directly if

you have any questions about a specific appointment.

5. Support with daily living

Please discuss your daily needs during this period of staying at home with carers,

family, friends, neighbours or local community groups to see how they can support

you. If you do not have anyone who can help you, please visit

gov.uklcoronavirus-extremel....

This letter is evidence, for your employer, to show that you cannot work outside the

home. You do not need to get a fit note from your GP. If you need help from the

benefit system visit gov.ukluniversal-credit.

6. Urgent medical attention

If you have an urgent medical question relating to your existing medical condition, or

the condition of the person you are caring for please contact us, or your specialist

hospital care team, directly. Where possible, you will be supported by phone or

online. If your clinician decides you need to be seen in person, the NHS will contact

you to arrange a visit in your home, or where necessary, treatment in hospital.

To help the NHS provide you with the best care if you need to go to hospital as a

result of catching coronavirus, we ask that you prepare a single hospital bag. This

should include your emergency contact, a list of the medications you take (including

dose and frequency), any information on your planned care appointments and things

you would need for an overnight stay (snacks, pajamas, toothbrush, medication etc).

If you have an advanced care plan, please include that.

7. Looking after your mental well-being

We understand that this may be a worrying time and you may find staying at home

and having limited contact frustrating. At times like these, it can be easy to fall into

unhealthy patterns of behaviour, which can make you feel worse. Simple things you

can do to stay mentally and physically active during this time include:

• look for ideas for exercises to do at home on the NHS website

• spend time doing things you enjoy - reading, cooking and other indoor hobbies

• try to eat healthy, well-balanced meals, drink enough water, exercise regularly,

and try to avoid smoking, alcohol and recreational drugs

• try spending time with the windows open to let in fresh air, arranging space to sit

and see a nice view (if possible) and get some natural sunlight. Get out into the

garden or sit on your doorstep if you can, keeping a distance of at least 2 metres

from others.

You can find additional advice and support from Every Mind Matters and the NHS

mental health and wellbeing advice website.

Further information on coronavirus, including guidance from Public Health England,

can be found on the nhs.uk ' and gov.uk2 websites.

Yours sincerely,

******** Medical Practice

01*** ******

List of diseases and conditions considered to be very high risk:

1. Solid organ transplant recipients

2. People with specific cancers

• People with cancer who are undergoing active chemotherapy or radical

radiotherapy for lung cancer

• People with cancers of the blood or bone marrow such as leukaemia,

lymphoma or myeloma who are at any stage of treatment

• People having immunotherapy or other continuing antibody treatments for

cancer

• People having other targeted cancer treatments which can affect the immune

system, such as protein kinase inhibitors or PARP inhibitors

• People who have had bone marrow or stem cell transplants in the last 6

months, or who are still taking immunosuppression drugs

3. People with severe respiratory conditions including all cystic fibrosis, severe

asthma and severe COPD

4. People with rare diseases and inborn errors of metabolism that significantly

increase the risk of infections (such as SCID, homozygous sickle cell)

5. People on immunosuppression therapies sufficient to significantly increase risk of

infection

6. People who are pregnant with significant heart disease, congenital or acquired

nhs.uk/conditions/coronavir...

gov.uk/coronavirus

I hope this is of help to you

kind regards,

rosshi

My son is on azathioprine and steroids he also has asthma I have been told by his specialist that children will not be getting a letter and just to follow the rheumatologist have website with all the guidelines to follow

I got my shielding letter a couple of days ago ( a bit late...)

I did ring rheumatology a few weeks earlier and was told I was not in the high risk group ( just on Azathiprine and disease considered to be controlled), and only had to practise social distancing.

Yes only got mine on Thursday 16/04

Yes I only got mine on Thursday 16th of April

have received shielding letter even though not on any medication at moment. Thought would only have one if on certain medications

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