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We aim to provide general information about COVID-19 and how it may affect you as a patient with pseudomyxoma peritonei (PMP) or appendix cancer. What we cannot do is provide up-to-date information that is specific to where you are. Always follow your government’s advice.  The situation will vary from place to place.

Many pseudomyxoma peritonei patients in the UK have been identified as “clinically extremely vulnerable and have been shielding at home. The guidance for these patients changed in Northern Ireland from July 31st, in England on August 1st, in Scotland on August 3rd and is planned to change in Wales on August 16th. The guidance for each is broadly similar throughout the UK although we always recommend that you check the guidance where you live. Guidance elsewhere can be found here.

 

Advice for the Clinically Extremely Vulnerable in England

The guidance for the clinically extremely vulnerable has been updated in line with what was announced on Monday 22 June. You are no longer advised to shield and you can now visit shops, places of worship and other venues. You can return to work if your workplace is Covidsecure but should carry on working from home wherever possible.

You should maintain social distancing wherever possible and adopt other measures to keep yourself safe, such as regular hand washing. More information on how to keep yourself safe can be found here.

However, local advice may vary where incidence rates and transmission are a concern. The government will write to those affected when advice is changed. You can check if there are local measures in your area here.

Advice to the clinically extremely vulnerable has been and remains advisory.

Is this safe?

The guidance has been updated in line with the latest scientific and medical advice and with the safety and welfare of the clinically extremely vulnerable in mind. Current scientific evidence indicates that average incidence rates across the country are lower now than when the decision was made to pause shielding.

We will monitor the virus continuously over coming months and if it spreads too much, we may need to advise you to shield again. Your name will be kept on the Shielded Patient List held by NHS Digital so the Government can write to you if this happens.

Returning to work

You should continue to work from home if you can. If this is not possible, your employer should take steps to make your workplace Covid-secure. You can find out more about safety measures in your workplace by searching here, for example if you work in a supermarket, you can read the ‘Shops and branches’ guidance.

If your employer cannot make your workplace Covid-secure, they can access the Coronavirus Job Retention Scheme for those who have been furloughed for a three-week period prior to 30 June, until the end of October.

If you are concerned about your safety at work, talk to your employer and look to come to an agreement. For example, you could discuss staggered working times or taking on a different role. You can get advice on your specific situation and employment rights by visiting the Acas website or calling the Acas helpline, 0300 123 1100.

Support

In line with what was announced on Monday 22 June, the Government-provided food boxes and medicine deliveries have now stopped. However, there are a number of ways you can still access support.

Supermarkets and other retailers are continuing to offer priority delivery slots for the clinically extremely vulnerable, as well as telephone ordering and food boxes to help the most vulnerable shop for themselves.

The NHS Volunteer Responders Programme will continue providing support with food, prescriptions and essential items to those who are self-isolating for any reason. You can contact them by calling 0808 196 3646 or by going online here.

If you are still concerned and need help, you should contact your local authority. You can also find out what support services are available in your area by using this search tool: https://www.gov.uk/coronavirus-local-help.

If there are local measures in your area

If you are clinically extremely vulnerable and live in an area where there are enhanced public health measures, you should follow the guidance on your local council’s website. If you don’t know what your local council is, you can check here.

If the enhanced measures require you to resume shielding, the government will write to you with detailed guidance.

This guidance will always be advisory.

Useful Resources

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For information specific to your indivual needs, please check your local, state or national guidelines or ask a trusted health professional.

We’ve used these sites as sources for this post as well as [email protected]

Government and Health System Support

The UK Government is advising everybody to:

  • wash hands – keep washing your hands regularly
  • cover face – wear a face covering over your nose and mouth in enclosed spaces
  • make space – stay at least a metre away from people not in your household
    • If you are feeling unwell, get a test and do not leave home for at least 10 days.

    Do not leave home if you or anyone in your household has symptoms of coronavirus. In the first instance, please refer to wider Government guidance on:

    The Government have a wide range of information to help people at this time, including on employment, financial support, and childcare. See: https://www.gov.uk/coronavirus

    Cancer services during the restoration and recovery from COVID-19

    The NHS is currently moving into the next phase of its response to the COVID-19 outbreak: to restore and recover all services for patients. If you need to access care or treatment for suspected or diagnosed cancer, arrangements have been put in place to keep you safe from COVID-19.

    If you have a worrying symptom, and you think it might be cancer, please contact your GP surgery straight away. GP surgeries are offering online consultations and/or remote triage so that people do not have to attend in person unnecessarily. If you have been asked to go to hospital for further investigation or for treatment if you are diagnosed with cancer, it is important that you attend.

    The NHS is reorganising the way that it delivers services to keep you safe:

    • COVID protected hubs have been established for cancer surgery across the country to keep patients safe. These are in COVID protected areas of a hospital or on separate hospital sites. The model is now being expanded to cover diagnostics too.
    • Wider measures are also being taken by all hospitals treating COVID patients to ensure that COVID and non-COVID patients are kept separate. This may include using separate entrances for COVID and non-COVID patients, ensuring staff and patients do not move between different parts of the hospital, and making sure that, as far as possible, staff are social distancing both inside and outside clinical areas.
    • The staff caring for cancer patients will be vigilant for any symptoms that they or their families are showing and are required to self-isolate in line with government guidance. Staff will be tested for the virus if they are displaying symptoms. Hospitals are also introducing testing for staff not displaying symptoms where there is testing capacity to do so.
    • All patients can support NHS staff to maintain COVID-protected environments by being aware of any symptoms they or their family may be displaying, and by following the advice of the clinical teams working with them. If a patient is uncertain whether they should come into the hospital, they should discuss this with their clinical team.

    The NHS is here for you if you need it: help us to help you.

    UK wide

    Guidance on social distancing for everyone in the UK
    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

    Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19
    https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

    Guidance produced by the One Cancer Voice charities in partnership with NHS England – here

    England

    Get coronavirus support as an extremely vulnerable person (England) – https://www.gov.uk/coronavirus-extremely-vulnerable

    NHS England Advice for everyone – Coronavirus (COVID-19)
    https://www.nhs.uk/conditions/coronavirus-covid-19/

    Scotland

    Coronavirus in Scotland – https://www.gov.scot/coronavirus-covid-19/

    Latest guidance about COVID-19 from NHS Scotland and the Scottish Government
    https://www.nhsinform.scot/coronavirus

    Northern Ireland

    Northern Ireland Public Health Agency COVID-19 information
    https://www.publichealth.hscni.net/news/covid-19-coronavirus

    Public Health Wales Novel Coronavirus (COVID-19)
    https://phw.nhs.wales/topics/latest-information-on-novel-coronavirus-covid-19/

    Wales

    NHS Wales Coronavirus COVID-19 Symptom Checker
    https://www.nhsdirect.wales.nhs.uk/SelfAssessments/symptomcheckers/?ScName=CoronaVirusCOVID19&SCTId=175

    Elsewhere

    Coronavirus (COVID-19): latest information and advice from the Government of Ireland
    https://www.gov.ie/en/publication/472f64-covid-19-coronavirus-guidance-and-advice/

    Australian Government Department of Health Coronavirus (COVID-19) health alert
    https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert

    Government of Canada Public Health Coronavirus disease (COVID-19)
    https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html

    Official COVID-19 New Zealand Government Information
    https://covid19.govt.nz/ 

    CDC Coronavirus (COVID-19)
    https://www.cdc.gov/coronavirus/2019-ncov/index.html

    Financial Support and advice

    Turn2Us Benefits and Corona virus
    https://www.turn2us.org.uk/get-support/Benefits-and-Coronavirus-new

    Benefits and Work Coronavirus (COVID-19) Updates
    https://www.benefitsandwork.co.uk/coronavirus-updates

    Other Support

    Latest guidance from British Dental Association
    https://www.bda.org/advice/Coronavirus/Pages/patients.aspx

    A guide to self-isolation or quarantine with Covid-19 from GPs-can
    https://www.gps-can.com.au/covid19-blog/a-guide

    Self-isolating warning poster for your front door
    https://www.pseudomyxomasurvivor.org/wp-content/uploads/2020/03/pseudomyxoma-survivor-covid-19-door-poster.png

    Care for your coronavirus anxiety
    https://www.virusanxiety.com/

    Andrew Johnson has some of his most popular mediations available free on his website
    https://andrewjohnson.co.uk/

    Headspace are offering free access to their meditation resources during this time
    https://www.headspace.com/

    Mindful Breathing Meditation from the Irish Cancer Society
    https://www.youtube.com/watch?v=FpGdYInmL3A

    Authored by A Brook, Trustee
    Reviewed by Dr G Morgan MB ChB, Trustee

    Originally published 21 Mar 11:52. Updated frequently.

    So what is COVID-19?

    COVID-19 is a disease caused by the SARS-CoV-2 virus that mutated to infect human hosts after starting in animals. SARS-CoV-2 is a coronavirus. Coronaviruses have been known for many centuries and in fact the common cold is a coronavirus.

    It seems to be about twice as infectious and to cause far more pneumonia, other serious disease and deaths than the seasonal influenza virus (flu). It’s also worse than the flu because the world population so far lacks immunity. New diseases are more dangerous, because their infection rates can grow incredibly rapidly (even having exponential growth). Such rapid transmission of a new disease can swiftly overwhelm even outstanding health-care systems, making it impossible for everyone who needs care (including for unrelated conditions) to access it – and in turn contributing to more severe disease and death.

    The disease attacks through the lung tissue, meaning that those with asthma or other breathing difficulties such as COPD may experience more severe symptoms. At the current time and based on our understanding of what is known of COVID-19 and other similar respiratory viruses, it is likely that older people and those with chronic medical conditions may be vulnerable to severe disease. As more information emerges, recommendations may change.

    ​​How is COVID-19 spread?

    People can catch COVID-19 from others who have the virus and the disease can spread from person to person through small droplets from the nose or mouth which are spread when a person with COVID-19 coughs or exhales. These droplets land on objects and surfaces around the person.

    Other people then catch COVID-19 by touching these objects or surfaces, then touching their eyes, nose or mouth. People can also catch COVID-19 if they breathe in droplets from a person with COVID-19 who coughs out or exhales droplets. This is why it is important to stay two metres apart from others.

    How can I protect myself and others from getting it?

    1. Wash your hands frequently and catch coughs and sneezes in a tissue

    ​One of the ways we become infected, or pass on viruses to others, is through the droplets in coughs and sneezes – for instance through someone who has a virus, coughing onto their hand, then touching a door handle.

    A simple and effective way to protect yourself and others from coronavirus is by making sure you wash your hands frequently with soap and water or to use a hand sanitiser if you are out and about. It’s particularly important to wash your hands once you get home or arrive at work or before you prepare or eat food.

    If you are unwell it’s vital that you catch your coughs and sneezes in a tissue, or use your arm if needed, throw the tissues away, then wash your hands.

    2. Be prepared to self-isolate

    As COVID-19 is now spreading in communities, people with symptoms of coronavirus should self-isolate at home. This means staying indoors and avoiding contact with other people for seven days after the onset of symptoms (new, continuous cough and/or high temperature). People can return to normal activity after seven days if they do not have a temperature and feel like they are improving. Please refer to your local guidance on isolation for family groups.

    3. Plan ahead based on your situation

    There are a number of ways to slow down an infectious disease outbreak. Well-established tactics include self-isolation as mentioned above, as well as measures sometimes referred to as “social distancing.”

    4. Use health services wisely

    Now that COVID-19 is considered to be spreading in the community this could mean the health services are busier than usual so it’s important to think carefully about the services you use. If you start to experience symptoms and believe you could have coronavirus, do not go to a GP surgery, pharmacy or hospital as you could pass the infection to others. Check with your local public health website for guidance on what you should so. In the UK, you should visit NHS 111 online or call NHS 111 if you need to speak to someone.

    5. Stay up to date using trusted sources of information

    Since COVID-19 began to spread quickly in China, it has been a major global news story and with this level of media and public interest it’s inevitable that myths, misinformation and rumours will be shared online.

    What symptoms should I expect?

    You may suffer from any of the following, most common first symptoms:

    • Fever
    • Fatigue
    • Dry (unproductive) cough
    • Shortness of breath
    • Gastrointestinal symptoms

    A fever seems to be the most common symptom but not everyone experiences this. Early data reported a low incidence of gastrointestinal symptoms (diarrhoea, nausea, vomiting, abdominal pain, loss of appetite) but more recent evidence shows they are common and can even come before respiratory symptoms. Initial symptoms may also include joint/muscle pain, headache, chills, dizziness, nasal congestion, and sore throat. Later in the infection, symptoms may include loss of smell and taste lasting for several days.

    These symptoms are common to other viruses too such as the common cold, influenza (flu), and allergies.

    Should I be more worried?

    If you have pseudomyxoma peritonei (PMP) or appendix cancer, you will be worried about how COVID-19 affects you. The most important thing is to follow the advice from your public health service and your healthcare team.

    If you are on chemotherapy or immunotherapy, you are regarded as clinically extremely vulnerable.

    The guidance in the UK in this case is that you should be shielding at home. You are strongly advised to stay in your home for 12 weeks and there are other measures which you should take if youshare your home with other. You can find the information for shielding here – https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19.

    If you have had a splenectomy, please follow the guidance below:

    • If you currently take them, continue with your antibiotics. If you don’t, do not start them if you do not have any symptoms.
    • Make sure that you have your emergency antibiotics, be that to double your penicillin or to take azithromycin.
    • Ensure you are up-to-date with your vaccines (Annual Influenza and 5 yearly Pneumonia booster)
    • If you develop any chest symptoms, contact your GP to check if you should move to your emergency treatment and for further advice – DO NOT go to the surgery, walk-in-centre or A&E

    If you are worried that your treatment or part of the monitoring of your disease will be affected, you should contact your specialist’s departmental secretary or clinical nurse specialist. Please remember that many of the staff may have been redeployed to help treat COVID-19 patients and it may take longer for someone to get back to you.

    Cancer52, of which Pseudomyxoma Survivor is a member, is regularly joining teleconference calls with NHSE and other charities on the evolving situation and working with other cancer charities under the banner of One Cancer Voice. You can find the latest guidance here.

    The European Centre for Disease Prevention and Control (ECDC) has a leaflet with information for those with an immumocomproising condition which can be found here.

    What should I do if I develop symptoms?

    ​Always call your local emergency number for a life-threatening emergency (911 or 999).

    • If you live alone and you have symptoms of COVID-19, however mild, you should stay at home for seven days from when your symptoms started.
    • If you live with others and you are the first in the household to have symptoms of coronavirus, then you must stay at home for seven days, but all other household members who remain well must stay at home and not leave the house for 14 days. The 14-day period starts from the day when the first person in the house became ill.
    • For anyone else in the household who starts displaying symptoms, they need to stay at home for seven days from when the symptoms appeared, regardless of what day they are on in the original 14 day isolation period.

    It is likely that people living within a household will infect each other or be infected already. Staying at home for 14 days will greatly reduce the overall amount of infection the household could pass on to others in the community. Public Health England has a diagram to explain ending self-isolation.

    If you have coronavirus symptoms, do not go to a GP surgery, pharmacy or hospital. Follow your local advice as to whether you need to contact you doctor or specialit. In the UK,  you do not need to contact 111 to tell them you’re staying at home. Testing for coronavirus is not needed if you’re staying at home

    You should continue to wash your hands regularly for 20 seconds, each time using soap and water, or use hand sanitiser. If you feel you cannot cope with your symptoms at home, or your condition gets worse, or your symptoms do not get better after seven days, the follow your local advice for contacting healthcare professionals.

    What do I need to do if I am going to an appointment either at my GP or at the hospital?

    Please call your doctor or hospital for advice. Most consultations are now being held over the phone.

    Should I avoid travel?

    Yes, you should avoid travelling unless absolutely necessary.

    Are there treatments for COVID-19?

    There are no drugs available yet to treat the virus and no vaccination to prevent it. A number of trials are under way of experimental drugs and vaccines, including anti-virals and vaccines, but these are likely to take some time (months if not years) before becoming widely available. However, for most, isolation at home will lead to a recovery within days, followed by a period of immunity. For others who suffer respiratory difficulties, support in hospital and possibly intensive care support may become necessary to preserve life whilst the immune system fights the infection.

    Symptom Diary

    One tip we have found from [email protected] is to keep a diary from the first day of symptoms. The suggest that a few times a day, preferably at somewhat regular hours or points in your normal routines or rhythms (e.g., every morning before making coffee or tea),

    • you measure your temperature, even if you don’t feel like you have a fever (yet)
    • you weigh once a day if possible.
    • make a note respiratory and heart rates in breaths and beats per minute. It will get you used to doing these things, give you practise, and (if you start early) give you some idea what (more or less) healthy values for you look like.
    • also suggested is that you record your blood pressure and oxygenation if you can

    Write down any symptoms you have. and be sure to note what medication, if any, you take. You can download a printable illness diary from their website.

    How can you help?

    Take 1-minute to self-report daily, even if you are well. Help scientists to identify the high-risk areas in the UK, who is most at risk, by better understanding symptoms linked to underlying health conditions, how fast the virus is spreading in your area. COVID-19 Symtom Checker: https://covid.joinzoe.com/
    (other countries are being added)

    The NHS is “rallying the troops” for the war on coronavirus, with volunteers being called up to help vulnerable people stay safe and well at home – https://www.goodsamapp.org/nhsvolunteerresponders

    Please do continue to support Pseudomyxoma Survivor – we’re a small charity run by a small number of patients, the majority of whom are self-isolating. You can make a donation here.

     

    Authored by A Brook, Trustee. Reviewed by Dr G Morgan MB ChB, Trustee. Originally published 21 Mar, 2020. Updated Jun 9, 2020.
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