Ovarian cancer and COVID-19 (coronavirus): advice for patients in Wales

BRCA gene mutations

Updated  17th July 2020

Information for patients in Wales who are currently receiving treatment for ovarian cancer

17 July update

Due to the current outbreak of COVID-19, many ovarian cancer patients need to follow special advice ("shielding") to stay healthy. The Welsh Government has been regularly reviewing and updating its shielding advice for vulnerable people (at risk of becoming seriously ill if they caught the virus) in Wales throughout the course of the outbreak. 

On 17 July, the government announced that it plans to pause shielding in Wales from 16th August if the number of cases of the Coronavirus continues to fall within the community. The Chief Medical Officer will write to everyone who is shielding before 16th August to confirm the change and what to do next. Vulnerable people should continue to shield until 16th August.

The Welsh Government has answered some commonly asked questions about the upcoming changes to shielding in Wales, which are available to read here:

The shielding guidance has already started to gradually relax, as the infection rates drops. From 1st June, people shielding in Wales could leave their houses and go outdoors to exercise and meet up with people from another household. And from 6th July, they can now a join with one other household to create an “extended household”. 

Shielding from 6th July

Who is most at risk?

  • Ovarian cancer patients who are currently having chemotherapy, or have had chemotherapy in the last 3 months.
  • Ovarian cancer patients who are currently having treatment where they are taking a PARP inhibitor (Olaparib, Niraparib, and Rucaparib).
  • Ovarian cancer patients who are having immunotherapy or any treatment that affects their immune system.
What guidance should I be following from 6th July?

Shielding has been extended until the 16th August, although the guidance has already started to relax. 

This means you can now:

  • Leave the house to exercise and meet people from another household outside (still keeping 2 metres social distancing). You can do this as many times as you want a day, but the advice is to stay local and avoid busy places.
  • From 6 July, two households are able to join together to form an “extended household”. In effect the people in the two households become part of a single household and need to agree how members of that household should behave in order to keep all members safe

You should still:

  • Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19).
  • Stay at home as much as possible, and stay away from busy outdoor places where social distancing is harder
  • Stay close to home if leaving the house so that you'd don't need to use a toilet that isn't your own, and not enter anyone else's home
  • Not attend any gatherings. This includes gatherings of friends and families in private spaces e.g. family homes, weddings and religious services
  • Not go out for shopping, leisure or travel. When arranging food or medication deliveries, these should be left at the door to minimise contact 
  • Continue to keep in touch with family and friends who don't live locally 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.
  • Not go to your place of work if it is outside the home

You should first try to get help from:

  • Family members 
  • Friends or other people in your community
  • Carers or community organisations
  • Voluntary organisations (a list of local voluntary groups can be found here)

If you are unable to request online shopping and have no support from family, friends or community organisations, you will be able to request a weekly food box. Each free box will provide essential food for one person for a week, and will be delivered weekly. If more than one person in your household is shielding and has no support they will also receive food. You can contact your local authority to request a food box – the contact number for your Local Authority is on the letter you received from the Chief Medical Officer (or your GP or hospital doctor).

If you have no support from family, friends or community organisations to collect your medicine please speak to your regular community pharmacy to discuss how you can get your medicine. Pharmacies should have extra capacity to make more deliveries and a record of who has been identified as extremely vulnerable in your area.

We understand this will be an incredibly frustrating and difficult time for many of you, especially those who feel well. Your emotions will probably range from anxious to downright bored. Your mental health will be just as important as your physical health in these next few weeks. For those of you on our mailing list, we will be sharing content to keep you informed, entertained and engaged over these coming weeks, but if there’s anything in particular you’d like to see from us, tell us on info@ovarian.org.uk. If you aren’t on our mailing list but would like to be added, sign up at the bottom of the page.

Who can I join an 'extended household' with?

From 6 July, two households will be able to join together to form an “extended household”. It does not matter who you extend your household with, but you must choose only one (and the same) household to join with. This means it's an exclusive arrangement.

Households who both have people who are shielding can still join to become an extended household.

There are some key rules that will keep friends and family safe when you create a shared household:

  • No person can be part of more than one extended household, with the exception of children who live in two homes (for example because their parents have separated and have joint custody).
  • All individuals in one home must belong to the same extended household.
  • All of the adult members of each household must agree to join the same extended household.
  • Once you have agreed and joined an extended household, you cannot change this arrangement.
  • If one member of an extended household develops symptoms of coronavirus, the entire extended household should self-isolate, not just those living together.
  • It is also useful for people to keep a record of who is in their extended household and their contact details, so contact tracers can get in touch with them quickly in the event that they need to.

Why did the guidance relax in July?

According to the Welsh Government, the advice has changed because:

1) The number of people who have coronavirus in Wales has gone down and so the risk of you catching the virus has reduced.

2) We have learned more about how coronavirus behaves. We know the virus does not spread as easily outside as it does indoors

3) Staying at home for long periods of time can affect your health and wellbeing.

What do I do if I have COVID-19 symptoms?

If, at any point, you think you have developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8 °C), seek clinical advice using the using the NHS 111 Wales COVID online service. If you do not have access to the internet, call NHS 111. Make sure you mention that you are an ovarian cancer patient who has been considered to be at risk. Do this as soon as you get symptoms.

In an emergency, call 999 if you are seriously ill. Do not visit the GP, pharmacy, urgent care centre, or a hospital.

To help the NHS provide you with the best care if you need to go to hospital as a result of catching coronavirus, please 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, your medication etc). If you have an advanced care plan, please include that.

What should I do about work?

If you are employed, please show the shielding letter from the Chief Medical Officer for Wales (or your GP or hospital doctor) to your employer. You should not go to your normal place of work – you will need to work at home until at least 15th August 2020, if you can do so. You do not need to get a fit note from your GP.

If you work in England but live in Wales you should continue to follow the advice for Wales, and cannot be required to return to work on the 1st August. 

After the 16th August employers should be making risk assessments for employees who have been shielding. From then you should only return to work if you cannot work from home, and your place of employment is COVID safe.

What about my treatment?

Your hospital or clinic will contact you if any changes need to be made to your care or treatment. Please phone your hospital or clinic if you have any questions about your appointment. 

Some hospital appointments may need to be cancelled, postponed changed to be over the phone or the internet. You can read a helpful guide put together by Ovacome about how to prepare for these appointments here. This is part of the plans to help the NHS to respond to the coronavirus outbreak. You will still be able to contact your hospital care team if you have an urgent issue.

If you’ve received a shielding letter then you’ll firstly need to see if family, friends or neighbours can collect your medicine from the pharmacy for you. If this isn’t possible, please speak to your regular community pharmacy to discuss how you can get your medicine.

I haven't received a letter but think I should have

To ensure all high risk patients are contacted, GPs and now hospital doctors have been provided with a list of those who’ve been sent letters to check against their known patients. They will send any additional high risk patients not identified a letter outlining the advice from the Chief Medical Officer.

If you haven’t received a letter but believe you should have please contact your GP or hospital doctor. If they do not think you need to stay at home then you do not need to shield, and should follow the guidance on social distancing for people with other conditions.

What should I do if I'm experiencing ovarian cancer symptoms?

The following advice is from the British Gynaecological Cancer Society.

Some existing cancer patients have open access to their gynae-oncology service, normally via the Clinical Nurse Specialist (CNS). If you have already had a gynaecological cancer diagnosis and have symptoms concerning for recurrence (such as persistent bloating and stomach pain), please get in touch with your CNS via their usual contact details. Please be aware that many staff have been re-deployed to look after acutely unwell patients, so there may be a delay, or a CNS from another cancer team may be covering the gynaecological cancer team.  Please be understanding with us if this is the case. We will try our very hardest to look after you and get back to you as quickly as we can.

Sometimes you may be referred to another hospital in your area, if your normal hospital is very busy. We have been working together to help get you seen and treated as soon as we can. We are all one big NHS team, now more so than ever. Please bear with us and be understanding, if this is the case.

Do others in my household have to stay at home?

No, they do not have to stay at home as well.  However, if they are going out they must follow social distancing rules, otherwise they will be at risk of catching the virus and therefore passing it to you. In this case we would advise that you try to separate yourselves in the home environment as much as possible, for example by having separate rooms, and that family members who have to go out take extra precautions when they come home.

If you have members of your household who are not shielding:

  • Minimise the time you spend with others in shared spaces such as the kitchen, bathroom and sitting area, and keep the rooms you share well ventilated.
  • Aim to keep 2 metres (3 steps) away from others, and sleep in a separate bed where possible.
  • Use separate towels and bathrooms. If you share a bathroom, clean it after every use. Consider creating a rota for bathing, with you using the facilities first.
  • Avoid using the kitchen at the same time as others, and eat your meals in separate rooms. Ensure all kitchenware is cleaned thoroughly. 
If all the other members of your household are following shielding measures, then you do not need to socially distance from them in your own home. 

How can I look after my mental health during this time?

There are all sorts of ways to look after your mental health while shielding. You can find our separate page on this here

Specifically in Wales,  you can contact the C.A.L.L helpline on 0800 132 737 or by texting "help" to 81066. Or go to the website here.

How is lockdown being lifted in the rest of the UK?

Wales and England shielding measures are no longer the same. Wales has extended its shielding period until the 16th August while the rest of the UK will pause shielding on the 1st August.

If there are local lockdowns due to rising rates of infections in certain areas you may be asked to shield again for your own safety. 

All four nations of the United Kingdom together are looking at implementing individualised risk assessments - a tool which is currently under development - so that if rates of infection do increase they won't have to advise everyone who has been shielding has to shield again. The goal is for patients to receive their own individual risk assessment based on their medical condition, stage of treatment and location. This is not currently in place, but the Welsh Government is hoping that if there is any need for shielding to return in the future, they can use this tool instead to determine who needs to shield.

Where can I read the latest guidance?

You can find the latest guidance for Wales here.

Shielding from 16th August 

We understand that the pause to shielding in August may be a big relief to many. But that it may also cause some mixed emotions, and make others feel anxious or worried about their health. Please be assured that support will still be available for you after 16th August to help you manage as shielding relaxes. 

Why is the Government planning to change shielding advice from 16th August?

The Chief Medical Officer for Wales has indicated that, should prevalence of coronavirus continue to fall within our communities, he will be able to pause his advice to those who are shielding. Those who are shielding will no longer need to do so after the 16th August.

A letter will be sent to all those who are shielding before 16th August to confirm this advice.

The Chief Medical Officer for Wales has made this decision in line with CMOs across the other UK nations; recognising that shielding was put in place to protect those at the most significant risk of harm at a time when prevalence of the coronavirus in our communities was rising.
There are significant harms associated with continuing to shield and we must focus on helping people to make steps toward returning to the lives they lived before shielding.

Will I still receive a food box?

For those people receiving food boxes, these will remain in place until 16th August. After this date they will no longer be available. The last food box delivery will take place in the week ending 16 August, depending on your usual delivery day.

Food boxes were established as emergency solution to if someone was unable to go shopping or to book an online delivery slot. The advice for shielding people

is that they will be able to go out shopping, being careful to maintain social distancing.

The Welsh Government is giving people advance notice of the end to the food box scheme so you have time to put alternative options in place.

Can I still get a priority shopping slot after the 16th August?

Yes, priority online delivery slots will remain available. If you are unable to get a priority slot with your usual supermarket we recommend trying an alternative supermarket. Local Authorities can also assist with putting you in touch with a volunteer who can assist you with shopping if required.

I'm worried about going to the supermarket, how can I get food?

Click here to see the different ways to get food without going to the supermarket. The alternatives include online delivery, commercially available food boxes, and arranging for a volunteer to help you.

Can I still get my medicines delivered after 16th August?

The volunteer medicine delivery scheme will be available until the end of September.

Can my employer force me to come into work?

After 16 August you should be able to return to work, if infection rates remain low in Wales, and your employer should help you to transition back to work safely and support you to keep to social distancing in your workplace (if you cannot work from home).

Employers should be mindful of the particular needs of different groups of workers or individuals.

Help is available for employees if they come across any difficulties. They may wish to engage with ACAS (Advisory, Conciliation and Arbitration Service), who offer free advice to employers and employees alike, in resolving disputes. A link to their specific advice on Coronavirus is here, and this is their free helpline number is 0300 123 1100.

I'm worried about my health and safety in my workplace?

The Welsh Government has put together guidance to employers on taking measures to make the workplace safe.

If you have concerns about your health and safety at work, you can raise them with any union safety representatives, or ultimately with the organisation responsibility for enforcement in your workplace, either the Health and Safety Executive or your local authority.

If you’re self-employed support is available through the Self-employment Income Support Scheme.

Can I still get statutory sick pay when shielding advice is paused?

Once shielding is paused on 16th August your entitlement to Statutory Sick Pay (SSP) will also end. However you may be entitled to Universal Credit or New Style Benefits.

You can only claim Statutory Sick Pay (SSP) because of Coronavirus if you are:

  • self-isolating because you or someone you live with has coronavirus symptoms
  • self-isolating because you’ve been notified by the NHS or public health authorities that you’ve come into contact with someone with coronavirus

Will my furlough end when shielding is paused?

If both the employer and the employee agree, staff can be kept on the Coronavirus Job Retention Scheme until it closes at the end of October. The amount the UK Government will pay towards the scheme will gradually decrease to 60% and employers will be asked to contribute to ensure staff receive a minimum of 80% of their wages whilst on furlough.

From 1 July, employers will be able to flexibly furlough employees – this means they can bring employees back to work for any amount of time, and any shift pattern. If employers choose to flexibly furlough staff, they’ll need to agree this with employees (or reach collective agreement with a trade union). Employers need to make sure that the agreement is consistent with employment, equality and discrimination laws.

Is my name being kept on a shielding list?

Yes, The NHS will continue to maintain the Shielded Patient List allowing the Welsh Government to give targeted advice and support to those who are most vulnerable and to change advice and support.

Will I be asked to ‘shield’ again in the future?

The latest scientific evidence shows that the chance of encountering coronavirus in the community has continued to fall. The CMO regularly monitors this position and if the rates of infection in the community rise, then it may be necessary to advise that more restrictive measures should be taken.

Those who have received a shielding patient letter remain on the Shielding Patient List. The guidance will continue to be updated to reflect the most recent advice from the CMO. If there is a significant change to the advice, the CMO will write to all patients on the list setting out any changes.

It's possible that local outbreaks may require advice to be specific to a geographical area in future. If this is the case, only those in the affected area would receive a CMO letter.

Why is the advice for Wales different to the advice for other parts of the UK?

The only aspect of the advice that differs in Wales is the date that shielding will pause. Shielding is not mandatory, it is advice. If people no longer wish to shield then they do not need to.

If you have a question that hasn’t been answered, have a look at our wider Coronavirus FAQs and if we still haven’t covered it please email us at info@ovarian.org.uk - we may not know the answer straight away, but we will do our best to find out.

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