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Adapted for people with LAM 24th March 2020
Background and scope of guidance
This guidance is for people who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition, and for their family, friends and carers. It is intended for use in situations where the extremely vulnerable person is living in their own home, with or without additional support. This includes the extremely clinically vulnerable people living in long-term care facilities, either for the elderly or persons with special needs.
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.
Not all conditions likely to confer an increased risk of more severe illness were incorporated this advice. The UK LAM Centre has therefore adapted Public Health England’s general advice to cover people with lymphangioleiomyomatosis (LAM).
What do we mean by extremely vulnerable?
People falling into this extremely vulnerable group include:
Shielding is for your personal protection. It is your choice to decide whether to follow the measures we advise. Individuals who have been given a prognosis of less than 6 months to live, and some others in special circumstances, could decide not to undertake shielding. This will be a deeply personal decision. We advise calling your GP or specialist to discuss this.
The NHS in England is directly contacting people with these conditions to provide further advice.
We understand this is an anxious time and people considered extremely vulnerable will understandably have questions and concerns. Plans are being readied to make sure you can rely on a wide range of help and support.
If you have LAM or another rare lung disease, have good lung function and do not fit into the categories above: it is essential you follow all recommendations on social distancing, hygiene and otherwise reduce your risk of being exposed to corona virus. Even if outside these categories, you may still chose to self-isolate by following the guidance below, it is your choice.
What you need to know
If you have an underlying health condition listed above, you are at very high risk of severe illness as a result of coronavirus (COVID-19) requiring admission to hospital.
Shielding is a practice used to protect extremely vulnerable people from coming into contact with coronavirus.
You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter. Please note that this period of time could change.
Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19). You may find this guidance on home care provision useful. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there.
You should have an alternative list of people who can help you with your care if your main carer becomes unwell. You can also contact your local council for advice on how to access care.
If you think you have developed symptoms of COVID-19 such as a new, continuous cough or fever, seek clinical advice using the NHS 111 online coronavirus service or call NHS 111. Do this as soon as you get symptoms.
If you have someone else living with you, they are not required to adopt these protective shielding measures for themselves. They should do what they can to support you in shielding and they should stringently follow guidance on social distancing, reducing their contact outside the home. If you care for but don’t actually live with someone who is extremely vulnerable, you should still stringently follow guidance on social distancing.
How do these measures differ from the social distancing guidance for vulnerable people issued?
You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter.
People who are not clinically extremely vulnerable who have contracted coronavirus (COVID-19) and recovered will be able to go about their normal business. If you are in this group we strongly advise that you should remain at home at all times.
The most common symptoms of coronavirus (COVID-19) are recent onset of:
What is shielding?
Shielding is a measure to protect extremely vulnerable people by minimising interaction between those who are extremely vulnerable and others. This means that those who are extremely vulnerable should not leave their homes, and within their homes should minimise all non-essential contact with other members of their household. This is to protect those who are at very high risk of severe illness from coronavirus (COVID-19) from coming into contact with the virus.
If you think you have a condition which makes you extremely vulnerable or have received a letter from NHS England you are strongly advised to shield yourself, to reduce the chance of getting coronavirus (COVID-19) and follow the face-to-face distancing measures below.
The measures are:
Do use telephone or online services to contact your GP or other essential services.
We know that stopping these activities will be difficult. You should try to identify ways of staying in touch with others and participating in your normal activities remotely from your home. However, you must not participate in alternative activities if they involve any contact with other people.
This advice will be in place for at least 12 weeks from the day you receive your letter.
What should you do if you have someone else living with you?
While the rest of your household are not required to adopt these protective shielding measures for themselves, we would expect them to do what they can to support you in shielding and to stringently follow guidance on social distancing.
If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.
Handwashing and respiratory hygiene
There are general principles you should follow to help prevent the spread of airway and chest infections caused by respiratory viruses, including:
What should you do if you develop symptoms of coronavirus (COVID-19)?
If you develop symptoms of COVID-19 (high temperature above 37.8 °C and/or new and continuous cough), seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access. In an emergency, call 999 if you are seriously ill. Do not visit the GP, pharmacy, urgent care centre or a hospital. Do this as soon as you get symptoms.
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, pyjamas, toothbrush, medication and so on). If you have an advanced care plan, please include that.
Rapamycin and coronavirus (COVID-19)
Most LAM services are telling people with LAM who do not have COVID-19 to continue taking rapamycin (sirolimus) in order to preserve lung function as far as possible. If you develop symptoms of COVID-19 and you are taking rapamycin we would recommend you stop taking the drug then.
How can you get assistance with foods and medicines if you are shielding?
Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities and the general public are gearing up to help those advised to stay at home. 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. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.
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:
You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team.
If you receive support from health and social care organisations, for example, if you have care provided for you through the local authority or health care system, this will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the home care provision.
What should you do if you have hospital and GP appointments during this period?
We advise everyone to access medical assistance remotely, wherever possible. However, if you have a scheduled hospital or other medical appointment during this period, talk to your GP or specialist to ensure you continue to receive the care you need and determine which of these appointments are absolutely essential.
It is possible that your hospital may need to cancel or postpone some clinics and appointments. You should contact your hospital or clinic to confirm appointments.
What is the advice for visitors, including those who are providing care for you?
Contact regular visitors to your home, such as friends and family to let them know that you are shielding and that they should not visit you during this time unless they are providing essential care for you. Essential care includes things like help with washing, dressing or feeding.
If you receive regular health or social care from an organisation, either through your local authority or paid for by yourself, inform your care providers that you are shielding and agree a plan for continuing your care.
If you receive essential care from friends or family members, speak to your carers about extra precautions they can take to keep you safe. You may find this guidance on home care provision useful.
Speak to your carers about backup plans for your care in case your main carer is unwell and needs to self-isolate. If you need help with care but you’re not sure who to contact, or if you do not have family or friends who can help you, you can contact your local council who will be able to help you and assess any social care needs you might have. Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need.
What is the advice for informal carers who provide care for someone who is extremely vulnerable?
If you are caring for someone who is extremely vulnerable due to severe illness from COVID-19, there are some simple steps that you can take to protect them and to reduce their risk at the current time. Ensure you follow advice on good hygiene:
How do you look after your mental wellbeing?
Social isolation, reduction in physical activity, unpredictability and changes in routine can all contribute to increasing stress. Many people including those without existing mental health needs may feel anxious about this impact including support with daily living, ongoing care arrangements with health providers, support with medication and changes in their daily routines.
If you are receiving services for your mental health, learning disability or autism and are worried about the impact of isolation please contact your key worker or care coordinator or provider to review your care plan. If you have additional needs please contact your key worker or care coordinator to develop a safety or crisis plan.
Understandably, you may find that shielding and distancing can be boring or frustrating. You may find your mood and feelings are affected and you may feel low, worried or have problems sleeping and you might miss being outside with other people.
At times like these, it can be easy to fall into unhealthy patterns of behaviour which in turn can make you feel worse. There are simple things you can do that may help, to stay mentally and physically active during this time such as:
Constantly watching the news can make you feel more worried. If you think it is affecting you, try to limit the time you spend watching, reading, or listening to media coverage of the outbreak. It may help to only check the news at set times or limit this to a couple of times a day.
Try to focus on the things you can control, such as your behaviour, who you speak to and who you get information from. Every Mind Matters provides simple tips and advice to start taking better care of your mental health.
If you are struggling with your mental health, please see the NHS mental health and wellbeing advice website for self-assessment, audio guides and tools that you can use. If you are still struggling after several weeks and it is affecting your daily life, please contact NHS 111 online. If you have no internet access, you should call NHS 111.
What steps can you take to stay connected with family and friends during this time?
Draw on support you might have through your friends, family and other networks during this time. Try to stay in touch with those around you over the phone, by post or online. Let people know how you would like to stay in touch and build that into your routine. This is also important in looking after your mental wellbeing and you may find it helpful to talk to them about how you are feeling if you want to.
Remember, it is okay to share your concerns with others you trust and in doing so you may end up providing support to them, too. Or you might want to try an NHS recommended helpline.
What is the advice for people living in long-term care facilities, either for the elderly or persons with special needs?
The advice also applies to extremely vulnerable persons living in long-term care facilities. Care providers should carefully discuss this advice with the families, carers and specialist doctors caring for such persons to ensure this guidance is strictly adhered to.
What is the advice for parents and schools with extremely vulnerable children?
The advice also applies to extremely vulnerable children in mainstream and special schools.