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Ask the Expert: how to access COVID-19 treatments at home

Other News // 7th April 2022

Across the UK, people at the highest risk of getting seriously ill from COVID-19 can access treatments to help fight off the infection. However, we know that some myeloma patients have experienced delays and problems accessing these treatments.

We caught up with Myeloma Information Specialist, Ellen Watters, to get her advice about accessing COVID-19 treatments.

Who is eligible for COVID-19 treatments?

People with weakened immune systems living anywhere in the UK can access COVID-19 treatments at home, or in the community, through the NHS.

Myeloma and smouldering myeloma patients can access these treatments if they test positive for COVID-19.

AL amyloidosis patients who are either receiving treatment or recovering from high-dose therapy and stem cell transplantation will also have the option to access these treatments if they test positive for COVID-19.

See our COVID-19 treatments page for more information on eligibility and treatments available.

What COVID-19 symptoms should patients look out for?

The main symptoms of COVID-19 are:

  • A high temperature – feeling hot to touch on your chest or back
  • A new, continuous cough
  • A loss or change to your sense of smell or taste
  • Shortness of breath
  • Feeling tired or exhausted
  • Aching body
  • Headache
  • Sore throat
  • Blocked or runny nose
  • Loss of appetite
  • Diarrhoea
  • Feeling sick or being sick

However, the Department of Health and Social Care (DHSC) consider all the following as symptoms of COVID-19: fever, chills, sore throat, cough, shortness of breath or difficulty breathing, nausea, vomiting, diarrhoea, headache, red or watery eyes, body aches, loss of taste or smell, fatigue, loss of appetite, confusion, dizziness, pressure or tight chest, chest pain, stomach-ache, rash, sneezing, coughing up sputum or phlegm, or a runny nose.

What should a patient do if they have COVID-19 symptoms?

If you have symptoms, you should be tested for COVID-19 as soon as possible. Free, symptomatic testing for people with weakened immune systems is currently available across the UK.

Patients should take a lateral flow test (LFT) or a priority PCR test if they are in Northern Ireland as soon as possible after symptoms start.

You must use an LFT supplied by the Government rather than a privately bought one. This is because you must register your result to be able to access treatments, and you cannot currently register results from LFTs bought privately.

Alternatively, if you were previously sent a PCR test or LFTs, you can use these to test yourself when you have symptoms.

Although the overall process is very similar, the exact route for ordering COVID-19 tests varies depending on which area of the UK you live, and patients can find the instructions for England, Scotland, Northern Ireland and Wales on the local NHS or government websites.

What should a patient do if they have tested positive for the virus?

Firstly, register your positive LFT on your nation’s reporting website, or call 111 or 119. You can find information on registering your test in the leaflet sent with your LFTs.

If you are eligible for COVID-19 treatments and live in England, Wales, or Northern Ireland, you will be contacted by the NHS within 24 hours.

You must contact your NHS health board directly if you live in Scotland.

We would also advise that patients contact their haematology team to let them know that they have tested positive. Haematology teams can help if you have issues accessing treatments and help change any clinic visit appointments.

Describe the symptoms you have to your healthcare team, doctor, or 111/119 operator.

What should a patient do if they have a positive PCR test or have registered their positive LFT test and not received a phone call about treatments within 24 hours?

If you live in England or Wales, contact 111.

If you live in Northern Ireland, contact 119.

If you live in Scotland, contact your NHS health board.

You can also call your GP surgery or your haematologist, who can make an urgent referral.

Let them know:

  • It has been over 24 hours since you registered/received your positive test
  • That you have COVID-19 symptoms
  • That you are in the category eligible for COVID-19 treatments
  • That you have blood cancer
  • There is some urgency as you require treatments within five to seven days of symptoms appearing

What should a patient do if they are told they are not eligible, but they think they are?

Myeloma patients are eligible for COVID-19 treatments if they have a positive COVID-19 test and have symptoms.

Most people you speak to, even in healthcare settings, will not be myeloma experts. When talking to telephone operators about getting access to COVID-19 treatments, think of these tips:

Stick to the basics. Let them know you have blood cancer and are eligible for COVID-19 treatments. Tell them that you are in the highest risk category of being very poorly with COVID-19.

Do not play down your symptoms or suffer in silence. Describe all the symptoms you have been experiencing.

Ask questions. Ask why they think you are not eligible for treatment. This can help you know what to do next.

Be your own advocate. You are within your right to ask to speak to the telephone operator’s supervisor. Or try calling the same number again to talk to a different operative.

Get your healthcare team involved. Speak to your consultant, GP, or clinical nurse specialist about the challenges you are experiencing accessing treatments. They may be able to help you.

You can give the healthcare team our letter to inform them of your eligibility for COVID-19 treatments. If you are struggling to contact the healthcare team, consider emailing them a copy of our letter.

What should patients do if their symptoms have changed?

Be open and honest about all your symptoms. Receiving COVID-19 treatments might make your journey to recovery from COVID-19 better and quicker.

Let the telephone operator know all the symptoms you have had and currently have, to highlight the range of symptoms you have been experiencing.

Tell them if you have taken any painkillers, such as paracetamol. This is relevant because paracetamol can mask important signs of infection, such as reducing a fever; so your temperature might be lower than expected even though you are unwell.

If your symptoms get worse or you feel really unwell whilst waiting for treatment or a call back from the NHS, call 111 for advice, and if it’s an emergency, call 999.

Can MGUS patients get access to COVID-19 treatments?

Monoclonal gammopathy of undetermined significance (MGUS) patients are not considered at high risk of extreme illness from COVID-19, so they cannot receive treatments from the NHS at home.

If you are feeling unwell from COVID-19, call your GP, healthcare team, 111, or 119. Just because you are not eligible for COVID-19 treatments at home does not mean there is no care in place for you. Please speak up if you are not feeling well.

In an emergency, always call 999.

 

If you have more questions about COVID-19 and treatments, call the Myeloma Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk. You can also talk to your clinical team who will be able to provide advice specific to your circumstances.