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MS COVID19 letter to patients Final version

IMPORTANT ADVICE TO KEEP YOU SAFE FROM CORONAVIRUS

We are writing to you because the NHS has identified you or the named person you care for, as someone who may be more susceptible to the effects of the COVID-19 illness caused by the coronavirus. Your safety and the continued provision of the care and treatment you need is a priority for the NHS. This letter gives you advice on how to protect yourself and access the care and treatment you need. It is based on current NHS and government advice.

The coronavirus is related to viruses that cause the common cold but unlike the common cold, this virus is new and therefore nobody has immunity to it. In most cases, perhaps as many as 80%, people who catch the virus may have no or just mild symptoms. It affects the lungs and airways; the commonest symptoms being high fever (temperature above 37.8oC), persistent cough or shortness of breath. Patients on certain types of treatment may be more likely to catch the virus and some patients with long term conditions may experience more serious symptoms from the virus, requiring hospitalisation. However, simply having MS of itself will not increase your risk of catching this infection.

COVID-19 coronavirus infection does not lead to neurological symptoms and should not be mistaken for a relapse of MS. There are strategies for reducing the risk of exposure to the virus. This includes social distancing and shielding or self-isolation.

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:

1. Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
2. Avoid non-essential use of public transport when possible.
3. Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information.
4. 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.
5. Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media.
6. Use telephone or online services to contact your GP or other essential services.

Everyone should follow these measures as much as is practicable.

Shielding

Shielding is a stronger measure to protect extremely vulnerable people from coming into contact with coronavirus, by minimising all interaction between them and others. This involves a period of self-isolation.
Those who are extremely vulnerable should:
1. Not leave their homes.
2. Minimise all non-essential contact with other members of their household.
3. Strictly avoid contact with someone who is displaying symptoms of COVID19 – these symptoms include high temperature and/or new and continuous cough.

MS patients in this vulnerable category requiring shielding include those who have significant difficulties with breathing or swallowing and, as will be further outlined below, those who have received treatment with alemtuzumab (Lemtrada) or cladribine (Mavenclad) in the past 3 months.

During a period of shielding or self-isolation you should;
 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.

Other circumstances in which self-isolation should also be considered
Patients with MS who do not fulfil the criteria for extremely vulnerable listed above but meet any of the following criteria should also strongly consider self-isolation for up to 12 weeks;
1. Age >70 years old.
2. Those unable to walk or requiring assistance either from an aid or other person to do so.
3. Treatment with cladribine (Mavenclad) or alemtuzumab (Lemtrada) within the past 6 months.
4. Treatment with fingolimod (Gilenya).
5. Treatment with ocrelizumab (Ocrevus) within the past 12 months.
6. Current pregnancy.
7. Other significant health conditions including cancer, diabetes, asthma and heart disease.
8. Work in a potentially high risk environment such as a hospital or other healthcare setting.
9. Obesity, particularly a high BMI (body mass index) >40.
If you have any queries about these issues please contact your MS team.

When self-isolating 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. 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 if you are not sure who to contact, please visit the website www.gov.uk/coronavirus-extremely-vulnerable.

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.

3. Planned hospital appointments
There are no face-face hospital appointments at this time unless there is an urgent need. Telephone clinics are however taking place and you may receive a telephone call from your neurology doctor or nurse specialist instead. This telephone call will be from a withheld number. You will usually receive a letter advising as to the time when this will occur. We appreciate that this can be a very difficult and stressful time. You should however know that the MS Helplines will still be available and you can also contact your consultant via the secretarial team should this be necessary. Help is also available via the MS Society in Belfast. Details are at the end of this letter

4. 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
https://www.nidirect.gov.uk/articles/coronavirus-covid-19-advice-vulnerable-people or contact the Covid-19 Community Helpline A Freephone Helpline to assist those in vulnerable groups to access information, advice and
guidance in relation to COVID-19 is open 9am to 5pm, 7 days per week. The Helpline is local to Northern Ireland, and is managed by Advice NI. Freephone number: 0808 802 0020 You can also get in touch via e-mail and text message. Email: [email protected] Text: ACTION to 81025

5. 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 two metres from others.
 You can find additional advice and support from Every Mind Matters and the NHS mental health and wellbeing advice website.
 The MS Society is creating a range of online events to help reduce the impact of social isolation and to support exercise. If those might be of interest to you, please contact the Society. Details at the end of this letter.

If you are currently on a disease-modifying therapy (DMT) for MS

Current advice is that you should continue on the treatment prescribed by your neurology team, provided you feel well. In most cases, the risk of stopping medication will outweigh the risks associated with the Coronavirus.
If you do have symptoms to suggest COVID-19 – a high temperature or new persistent cough – then you should call NHS 111 as soon as possible or use the online Coronavirus service (https://111.nhs.uk/covid-19/).
Patients with serious COVID-19 complications and MS may safely stop their immunotherapy for up to four weeks but should do so only after consultation with their MS team. If you are confirmed to have the virus please let us know. There is also a study through the UK MS Register specifically examining the impact of Coronavirus on people with MS. If you are interested in participating you can sign up here – https://ukmsregister.org/Coronavirus. This will help us to pick up real-time trends in patients with MS and may assist other patients on the same DMT.

1. If you are on interferon beta 1a (Avonex, Rebif or Plegridy), interferon beta 1b (Betaferon or Extavia), glatiramer (Copaxone), teriflunomide (Aubagio), dimethyl fumarate (Tecfidera) and natalizumab (Tysabri), please continue to take these drugs. They do not significantly increase the risk of systemic viral infections.

2. If you are on fingolimod (Gilenya), please be aware that the risk of viral infections is moderately increased. So you may be more prone to coronavirus infection and its complications. For most people on fingolimod, this risk is outweighed by the effectiveness of fingolimod in controlling their MS. It is important not to stop fingolimod without speaking to your MS team, because there is a risk that MS will become active and cause relapses in the weeks after stopping the drug.

3. If you are on ocrelizumab (Ocrevus), please be aware that the risk of viral infections is moderately increased and you may be more prone to coronavirus infection. For many people on ocrelizumab, this risk is outweighed by the effectiveness of ocrelizumab in controlling their MS. The MS team is likely to delay a further round of ocrelizumab until the risk of coronavirus infection is clarified or has passed, because it is clear from experience with a similar drug, rituximab, that an infusion of ocrelizumab will remain effective at controlling MS for longer than 6 months.

4. If you have had Year 1 of cladribine (Mavenclad) or alemtuzumab (Lemtrada), and are due Year 2 treatment, then you should discuss this further with your MS team. The risk of viral infections is highest in the three to six months after alemtuzumab and cladribine. Therefore it is sensible to delay the second round of treatment until the risk of Coronavirus infection has passed. It is safe to increase the gap between the first and second alemtuzumab treatments to 18 months, without a risk of a return of MS activity. The data are less clear for cladribine. If delaying treatment is a concern, it would be reasonable to consider switching to another treatment.

5. If you have had two cycles of treatment with cladribine or alemtuzumab and the latest round was within the past 3 months then please be aware that the risk of viral infections is significantly increased. In this scenario shielding is recommended for patients for a period of at least three months after the date of their last treatment.

If you are about to start a disease-modifying therapy (DMT) for MS

1. The choice of disease modifying treatment for someone with MS is complex and takes into account many factors. The potential for a period of some months with an increased risk of Coronavirus infection should be part of these considerations.
2. The following disease-modifying treatments do not significantly increase the risk of viral infections: interferon beta 1a (Avonex, Plegridy, Rebif), interferon beta 1b (Betaferon, Extavia), glatiramer (Copaxone), teriflunomide (Aubagio) and dimethyl fumarate (Tecfidera). It is important to comply with blood monitoring on these drugs, which ensures that the immune system is not excessively suppressed. Once these drugs are stopped, the immune system recovers over several weeks.
3. Natalizumab (Tysabri) is a highly effective therapy, with very few side effects in the first six months of treatment. Natalizumab does increase the risk of viral infections in the brain, but COVID-19 does not appear to affect the brain. Once stopped, the immune system recovers over several weeks.
4. Fingolimod (Gilenya) is an effective treatment of MS but causes a moderate increase in the risk of viral infections whilst you take the drug. It is a tablet and, once stopped, the immune system usually recovers after several weeks.
5. Ocrelizumab (Ocrevus) is a highly effective treatment of MS and more effective than fingolimod. After the first two infusions [a fortnight apart], it causes a moderate increase in the risk of viral infections that persists for months. If someone on ocrelizumab gets Coronavirus, the drug’s effects on the immune system cannot be reversed, so the likelihood of complications from an infection is probably higher than if taking a drug which can be stopped. If it has been scheduled for you to commence treatment with this drug, your MS team will probably want to consider a delay in treatment until the situation around the epidemic is clearer or alternatively they will consider alternative treatment options.
6. Cladribine and alemtuzumab are highly effective treatments of MS and are given as two cycles of treatment, separated by twelve months. However, there is a very significant risk of viral infections in the three to six months after a cycle of alemtuzumab and cladribine. Therefore we would advise delaying the start of these treatments until the risk of coronavirus infection has passed. Most people considering these drugs will have active multiple sclerosis and so delaying treatment altogether may not be wise. In which case it would be reasonable to consider starting another treatment.
7. Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS, which carries a very high risk of infections for many weeks. We would recommend postponing this treatment until the risk of coronavirus has receded.

MRI Scans

Due to the Coronavirus outbreak our radiology (“X-Ray”) departments are under significant pressure. Consequently all patients, including those with MS, will have a longer than normal wait for MRI scans to be performed. However, every effort will be made to ensure scans for safety reasons & for urgent indications continue where possible.

Blood monitoring for disease modifying therapies

We are mindful of the need to continue blood monitoring for patients who are prescribed
DMTs. However, we recognise the need to attempt to minimise travel & social contact
particularly within healthcare settings. Many GP practices are not going to be able to
continue monitoring blood tests during this period, and for some people there is a greater
risk from attending a practice for a routine blood check than just continuing the medication.
During this uncertain time regarding the coronavirus your MS team may reduce the
frequency of your blood test monitoring, using guidance being developed across the UK and
with your safety being the primary concern. Where blood tests are essential and if your
access to the usual sampling with your GP is not possible, your MS team will endeavour to
facilitate this in an outpatient hospital setting. If this is necessary, they will be in contact with
you.

The situation with regard to COVID-19 is rapidly evolving. To keep up to date there are a
number of websites you can visit which include:
https://www.nidirect.gov.uk/campaigns/coronavirus-covid-19
https://www.nhs.uk/conditions/coronavirus-covid-19/
https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifyingtherapies/covid-19-coronavirus-and-ms
Yours sincerely

MS Specialist Interest Group
Dr Jamie Campbell Consultant Neurologist
Secretary Tel: 02837562154
Dr Aidan Droogan Consultant Neurologist
Secretary Tel: 02895043316 (Belfast), 028907134571 ext 216628 (Altnagelvin)
Dr Orla Gray Consultant Neurologist
MS Co-ordinator Tel: 02895988038
Dr Stella Hughes Consultant Neurologist
Secretary Tel: 02896155910
Dr Gavin McDonnell Consultant Neurologist
Secretary Tel: 02895047768

Belfast Trust MS Nurse Helpline Tel: 02895042640
Northern Trust MS Nurse Helpline Tel: 02825635686
Southern Trust MS Nurse Helpline Tel: 02837560076
SouthEastern Trust MS Nurse Helpline Tel: 02895988038
Western Trust MS Nurse Helpline Tel: 02871296132
MS Society, Annadale Avenue, Belfast Tel: 02890802802
Email: [email protected]