Supporting people with
Complex Regional Pain Syndrome

Coronavirus – Covid -19 Latest

Updated: Thursday 4th April

Stay At Home

· Only go outside for food, health reasons or work (but only if you cannot work from home)

· If you go out, stay 2 metres (6ft) away from other people at all times

· Wash your hands as soon as you get home

Do not meet others, even friends or family.

You can spread the virus even if you don’t have symptoms

Stay at home Protect the NHS Save lives

This guidance is for everyone, including children. It advises on social distancing measures we should all be taking to reduce social interaction between people in order to reduce the transmission of coronavirus (COVID-19). It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting guidance is available.

What is social distancing?

Social distancing measures are steps you can take to reduce social interaction between people. This will help reduce the transmission of coronavirus (COVID-19).

They are to:

Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough

Avoid non-essential use of public transport when possible

Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information

Avoid large and small gatherings in public spaces, noting that pubs, restaurants, leisure centres and similar venues are currently shut as infections spread easily in closed spaces where people gather together.

Avoid gatherings with friends and family. 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

Everyone should be trying to follow these measures as much as is practicable.

We strongly advise you to follow the above measures as much as you can and to significantly limit your face-to-face interaction with friends and family if possible, particularly if you:

are over 70

have an underlying health condition

are pregnant

This advice is likely to be in place for some weeks.

Handwashing and respiratory hygiene

There are general principles you can follow to help prevent the spread of respiratory viruses, including:

washing your hands more often – with soap and water for at least 20 seconds or use a hand sanitiser when you get home or into work, when you blow your nose, sneeze or cough, eat or handle food

avoid touching your eyes, nose, and mouth with unwashed hands

avoid close contact with people who have symptoms

cover your cough or sneeze with a tissue, then throw the tissue in a bin and wash your hands

clean and disinfect frequently touched objects and surfaces in the home

We understand that many people with CRPS and their families may be concerned at the Coronavirus pandemic; please follow the Government guidelines by clicking on the link below.

https://www.gov.uk/…/guidance-on-social-distancing-for-ever…

The best advice is to STAY AT HOME if you DO NOT have a valid reason to go out.

Are people with Complex Regional Pain Syndrome at greater risk?

It is completely understandable that people affected by CRPS are very concerned at the escalating pace of the impact of COVID-19 in the UK, whether they have the disease themselves or are a close family member of someone with the condition.

From the evidence so far, there is no increased risk of catching coronavirus for people with CRPS unless you have any of the following underlying health conditions listed below (ie anyone instructed to get a flu jab as an adult each year on medical grounds):

· chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis

· chronic heart disease, such as heart failure

· chronic kidney disease

· chronic liver disease, such as hepatitis

· chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy

· diabetes

· problems with your spleen – for example, sickle cell disease or if you have had your spleen removed

· a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy

· being seriously overweight (a body mass index (BMI) of 40 or above)

· those who are pregnant

Note: there are some clinical conditions which put people at even higher risk of severe illness from COVID-19. If you are in this category, next week the NHS in England will directly contact you with advice the more stringent measures you should take in order to keep yourself and others safe. For now, you should rigorously follow the social distancing advice in full, outlined below.

Guidance on Shielding and Protecting People Defined on Medical Grounds as Extremely Vulnerable From Covid – 19 Published 21st March 2020

Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others. We are strongly advising people with serious underlying health conditions (listed below), which put them at very high risk of severe illness from coronavirus (COVID-19), to rigorously follow shielding measures in order to keep themselves safe.

People falling into this extremely vulnerable group include:

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 the risk of infection.

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

If you are still concerned about how you should do to protect yourself due to your CRPS, the best advice would be to follow the NHS Guidelines on Self-Isolation.

https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/

“WHAT CAN I DO TO KEEP MYSELF SAFE?”

We recommend following the current government and Public Health England advice and taking precautions such as regular handwashing, covering your mouth and nose with a tissue, not your hand, when coughing and sneezing, and avoiding close contact with people who are unwell. In addition, follow Government Guidelines on Social-Distancing.

https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

If despite these measures, you should develop symptoms of infection, please follow the advice given in the section below:

“WHAT DO I DO IF I FEEL UNWELL?”

If you feel unwell or notice any of these symptoms:

• a high temperature – you feel hot to touch on your chest or back

• a new, continuous cough – this means you’ve started coughing repeatedly

• shortness of breath

You should stay at home for at least 7 days.

If you live with other people, they should stay at home for at least 14 days, to avoid spreading the infection outside the home.

After 14 days, anyone you live with who does not have symptoms can return to their normal routine.

But, if anyone in your home gets symptoms, they should stay at home for 7 days from the day their symptoms start. Even if it means they’re at home for longer than 14 days.

YOU SHOULD ONLY CALL THE NHS 111 SERVICE IF:

• you feel you cannot cope with your symptoms at home

• your condition gets worse

• your symptoms do not get better after 7 days

https://www.nhs.uk/…/coronavirus-cov…/self-isolation-advice/

https://www.gov.uk/…/publica…/covid-19-stay-at-home-guidance

Further information on what to do can be found here: https://www.nhs.uk/conditions/coronavirus-covid-19/

Travel

In the event that you have to travel, either here or abroad, keep up to date with the latest advice from your travel company, your travel insurance provider and the Government and Foreign Office:

https://www.gov.uk/guidance/travel-advice-novel-coronavirus

Contacting CRPS UK

As you might imagine, our mailing service is receiving a huge amount of emails at the moment; to ensure that you get the information you need, please follow the guidelines and links below. If you have further questions email admin@crps-uk.org

It is important to recognise that the situation is changing all the time and we will regularly update this guidance as new information becomes available

Key websites where you can get ‘official’ information

Please refer to the following organisations’ guidance for further information on the outbreak and how to protect yourself. Please note that the advice about what to do may vary between the devolved nations.

• NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do:

https://111.nhs.uk/service/covid-19 (available in England, Scotland, Northern Ireland and Wales)

• England: Public Health England has a blog on the virus which they are updating very regularly:

https://publichealthmatters.blog.gov.uk/…/wuhan-novel-coro…/

• Scotland: Health Protection Scotland are updating their website with the latest news daily:

https://www.hps.scot.nhs.uk/a-to-z-of-topics/covid-19

• Wales: Public Health Wales are updating their website with the latest news daily: https://phw.nhs.wales/…/latest-information-on-novel-corona…/

• Northern Ireland: Public Health Agency are updating their website with the latest news daily:

https://www.publichealth.hscni.net/

Other links:

https://www.gov.uk/…/coronavirus-covid-19-information-for-t…

https://www.nhs.uk/conditions/coronavirus-covid-19/

https://www.who.int/emergen…/diseases/novel-coronavirus-2019

https://www.gov.uk/…/guidance-on-social-distancing-for-ever…

If you are having a difficult time, struggling with your mental health and need support contact The Samaritans or Mind

https://www.samaritans.org/

https://www.mind.org.uk/info…/coronavirus-and-your-wellbeing

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