Background and scope of guidance

This guidance is for people, including children, 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.

What do we mean by extremely vulnerable?

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

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.

If you think you fall into one of the categories of extremely vulnerable people listed above, you should discuss your concerns with your GP or hospital clinician.

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.

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 several weeks. 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. 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.

People who are not clinically extremely vulnerable who have contracted coronavirus (COVID-19) and recovered will be able to go about their normal business.

Symptoms

The most common symptoms of coronavirus (COVID-19) are recent onset of:

• new continuous cough and/or
• high temperature (above 37.8 °C)

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 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:

1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
2. Do not leave your house.
3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces, for example, family homes, weddings and religious services.
4. Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
5. Keep in touch using remote technology such as phone, internet, and social media.

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.

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.

1. Minimise as much as possible the time other family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
2. Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, you should use a separate bathroom from the rest of the household. Make sure you use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
3. If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with you using the facilities first.
4. If you share a kitchen with others, avoid using it while they are present. If you can, you should take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.
5. We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.

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:

• wash your hands more often – with soap and water for at least 20 seconds or use a hand sanitiser. Do this after you blow your nose, sneeze or cough, and after you 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
• clean and disinfect frequently touched objects and surfaces in the home

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. Call emergency 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.

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.

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.

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.

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:

• only care that is essential should be provided
• wash your hands on arrival and often, using soap and water for at least 20 seconds or use hand sanitiser
• cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
• put used tissues in the bin immediately and wash your hands afterwards
• do not visit or provide care if you are unwell and make alternative arrangements for their care
• provide information on who they should call if they feel unwell
• find out about different sources of support that could be used
• look after your own wellbeing and physical health during this time. Further information on this is available.

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:

• look for ideas of exercises you can do at home on the NHS website
• spend time doing things you enjoy – this might include reading, cooking, other indoor hobbies or listening to favourite radio programmes or watching TV
• try to eat healthy, well-balanced meals, drink enough water, exercise regularly, and try to avoid smoking, alcohol and drugs
• try spending time with the windows open to let in the fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight, or get out into any private space, keeping at least 2 metres away from your neighbours and household members if you are sitting on your doorstep

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.

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.

What is the advice for people living in long-term care facilities, either for the elderly or persons with special needs?

The advice above 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 above also applies to extremely vulnerable children in mainstream and special schools.

---

RESOURCE: 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

---

You may also be interested in:

A discussion about guarding mental health during the COVID-19 pandemic.

We are organizing an extended EAMDA executive committee (EC) meeting between October 18 and 20, 2019, at the Rehabilitation Center in Izola, Slovenia.

The topic of the meeting will be related to the AGA in 2020, the construction of educational programs for people with NMD and the substantive preparation of EAMDA strategic development guidelines for the next five years. The goal of all planned activities is to connect and educate members and people with NMD, which directly or indirectly improve their health status and thus increase the quality of life of people with NMD. The meeting will be attended by members of the EC and representatives of the visiting countries.

Program of the meeting is available for download HERE.

Duchenne and You is a resource dedicated to those who have had their lives touched by Duchenne muscular dystrophy.

Visit the site http://duchenneandyou.eu/

EAMDA 47th Annual General Assembly (AGA) took place between 20th and 23rd September, 2018 in Prague, Czech Republic (Clarion Congress Hotel). The event has been traditionally divided into three parts: medical, social and administrative part.

Within the medical part, top experts in the field of neuromuscular disorders (NMD) from all over the Europe have been presented. They showed innovative approaches in eliminating the secondary consequences of the underlying disorder, as well as the modern methods of the treatment. Thus, the program of medical part was divided into several sections: Diagnosis and new therapies in NMD, New clinical trials and approach in NMD, Cardiological and respiratory care, and Restorative rehabilitation and treatment. Medical doctors, scientists and other experts presented the new therapies currently available for people with NMD, clinical studies and research news, new possible treatments as well as patient advocating and improvement of quality of life for people with NMD on multidisciplinary level.

The social part again demonstrated the importance of its integration in the program, as it connects complementary with medical part. In the social part people with NMD from different countries have been presented. They showed that despite of high degree of disability and diversity of health-social conditions they successfully develop their intellectual potential. An important event organized within the social part of the program was the implementation of a round table on the challenges associated with the introduction of new NMD treatment methods in different European countries. There is no secret that new possibilities of etiology treatment are becoming available to treat NMD, and that a realistic prediction of the genetic treatment arrival is being on the way. Some European countries are already among the leading ones in Europe by introducing new forms of treatment, while others are developing infrastructure to start treatment with them. The great challenge of financing expensive drugs for rare diseases, among which NMD is definitely taking place, has been also stressed out. Every country in the EU is putting efforts to solve the problem of financing new therapies, and in EAMDA we are convinced that a reasonable solution can only be found by persevering in a consensual dialogue involving all participants: insurance companies, medical doctors, pharmaceutical industry and representatives of people with NMD. In many countries mentioned linking form of the dialogue already appears to be the most effective.

The administrative part has been organized within parallel section of the conference, where an AGA as the highest EAMDA statutory defined organ has been held, followed by two EAMDA executive meetings.

Over 120 participants took part in the event, namely delegates, representatives of NMD associations and lecturers from eleven European countries (Slovenia, Slovakia, Poland, Croatia, Serbia, Bulgaria, Italy, France, Switzerland, Turkey and the Czech Republic).

Boris Šuštaršič, the founder of the Muscular Dystrophy Association of Slovenia, passed away on Saturday, 25 August 2018, in Izola. We are deeply saddened and shocked by the sad news, having hoped his health would improve despite the illness that he had suffered for the past few weeks.

His name has been strongly connected with the life and work of people with muscular dystrophy ever since 1969 when, together with his supporters, he established the organisation which was then named the “Association of People with Muscular and Neuromuscular Disorders of Slovenia”. His life was very early fatefully marked by disability. Nevertheless, together with his brother Andrej, he accepted his disability as a challenge and an imperative that led him through his life.

He soon noticed that besides social organisation people with neuromuscular disorders (NMD) need employment in order to become equal citizens also in economic terms. Development of information technology enabled people with the most severe disabilities to enter the labour market. Thus, in 1997, on Šuštaršič’s initiative, the Muscular Dystrophy Association of Slovenia established company for employing disabled people “Birografika BORI”, which developed from a small print shop with only one photocopy machine into one of the most modern graphics companies in Slovenia employing about 100 workers.

Based on his own experience, Boris Šuštaršič was aware of the importance of coastal group restorative rehabilitation for people with NMD. In 1985, the Muscular Dystrophy Association of Slovenia bought the premises of the former hospital in the coastal town of Izola and thus set the foundation of the centre for developing the programme of restorative rehabilitation for people with NMD. Today, the centre operates under the name “Dom dva topola” and is one of the biggest medical rehabilitation centres for people with NMD in this part of Europe, both in terms of equipment and service quality.

More than forty years ago, Boris Šuštaršič realised that political support is required for the development of disability protection in Slovenia. That is why he became actively engaged in the former Yugoslav and Slovenian political sphere. He helped establish muscular dystrophy organisations in former Yugoslav republics and constantly maintained close contacts with them also after the dissolution of the joint state.

He also participated in political activities as a representative of social care interest groups in the National Council of the Republic of Slovenia where he served as a national councillor for three mandates and also in the last term of office. He played a decisive role in designing and development of the lottery games field. He was the initiator and the actual creator of the Foundation for Financing of Disability and Humanitarian Organisations of the Republic of Slovenia (FIHO) where he made an immense contribution to the preservation of independent and harmonised financing of disability and humanitarian organisations.

He was aware of the importance of employing disabled people in various economic sectors and therefore undertook activities through “Birografika BORI” to establish the Alliance of Companies Employing Disabled People of Slovenia which today unites 143 companies employing disabled people, including “Dom dva topola”, one of the two companies established by the Muscular Dystrophy Association of Slovenia.

In the field of disability care there is no other person who did more for Slovenian disabled people during one’s lifetime than Boriš Šuštaršič. He was a true visionary and a creator of excellent realisable ideas. Also in the field of economy it would be hard to find someone who had made such an important contribution: he was surely among the top managers in Slovenia.

Boris Šuštaršič actively contributed to integrating different groups of disabled people at the European level. He was one of the co-founders of the European Alliance of Neuromuscular Disorders (EAMDA) and its President since 2008 when EAMDA’s headquarters was moved from Malta to Slovenia. He was also an active representative of Slovenian disabled people in the European Disability Forum (EDF). Many of his innovative solutions in the field of social care were adopted by numerous European countries and transposed into their national legislation.

On his path to successes he was often met with benevolent reactions from those who envied him his achievements. He had quite a few of such opponents, but this only proves the old saying: “a cloud of dust follows a good horse”.

We have lost a great leader, mentor and colleague, whose charisma and energy filled us with optimism for dealing constructively with all the challenges that arise in our work. At the same time he gave us the ability to think analytically and separate the wheat from the chaff not only when it comes to social and disability policy but also in our own life and work.

The members and colleagues in the Muscular Dystrophy Association of Slovenia will continue the vision set by our late President who believed that the desired goals can be realised and that one should never yield in the face of difficulties. This maxim will remain our imperative in the future operation of the Association.