Living well in isolation

This document has been produced by the Clinical Psychology team in Cardiff & Vale University Health Board.

A period of isolation will be challenging for everyone; but we hope these ideas may help to lessen the impact. They may not all be possible for everyone – use any of these suggestions which might be appropriate for you.

Activities and structure

  • Don’t listen to the news too frequently (or at all). Check up on news only once each day at most. Choose your information sources wisely in order to access accurate information.
  • Structure your day so that you have an activity to undertake each morning, afternoon and evening. Be kind to yourself and set manageable goals. It’s okay if you are unable to do everything you intend. You are likely to experience many distractions.
  • Keep to a routine with waking up and bedtimes. You can add to these routines by having a bath or shower in the mornings, and practice meditation or mindfulness before bed.
  • Watch or listen to programmes, audiobooks and podcasts. Do you have any favourite comedy sketches? Are there any light-hearted shows that bring you joy? Audible have made many titles of audiobooks freely available online: https://stories.audible.com/start-listen
  • Read a book that has been on the shelf waiting for attention.
  • Learn a new skill or hobby, or pick up an old hobby you used to enjoy doing. How about drawing, jigsaws, playing board games, or learning a language?
  • Explore the world from your home! Explore.org has a livestream of 100 cameras from around the world so you can watch the northern lights, pandas, the Great Barrier Reef, and more.
  • If you have a garden, spend time out of doors. Even in colder weather, if you’re well, wrap up in coat and blanket and take a coffee break outside.
  • Go with the ‘flow’. Research suggests that when you are fully engaged in an activity, working at your own pace and making progress while being fully absorbed, you achieve a state of ‘flow’. Activities which induce flow will vary dependent on your interests; however, some people find activities such as painting, gardening, baking, knitting and woodwork can induce flow.
  • Take time to self-care. Schedule time for soothing activities. This could be a warm bath, a meditation of mindfulness practice, a few moments cuddled up under your favourite blanket, or petting the cat/dog. Anything that makes you feel calm, connected or cared-for counts.
  • Make time for spiritual practice if this is important to you. Whilst you cannot attend places of worship at the moment, think about setting aside time for prayer and meditation at home. Can you stay in contact with members of your congregation over the phone or via Skype? Skype could offer an opportunity for group prayer sessions too.
  • Take a virtual tour of a museum. There are many; some examples are:

Diet, health and exercise

  • Keep up movement and exercise.
    • Follow any advice you already have from a physiotherapist, your nurse or doctor
    • Even if you have fatigue, move about briefly out of a chair every hour. Look at this NHS advice on sitting exercises, but follow your own common sense about how much to do: nhs.uk/live- well/exercise/sittingexercises
    • If you’re already fitter and want to keep up exercise, use the stairs as often as possible, do some simple exercises that you’re familiar with, or look for some on-line guidance. Remember, only as much as you feel comfortable doing.
  • If you are allowed, leave the house for exercise – e.g. if you do not need to be completely sheltered. Try to do this even if it is a short walk. Remember to observe the guidance around social distancing and keep 2m (6ft 6) away from another person, unless you live with them.
  • Try out an online class. Class providers such as yoga are offering online, scheduled classes at set times, which can also help with your routine and structure. Many of these are offering classes for free to try, or at reduced prices
  • Consider food supply options.
  • Try to buy only what you need for the coming week.
    • If you have concerns about accessing fresh food and supplies, consider how family or friends may be able to support you. There are many local businesses that may be able to provide free delivery of fresh produce such as fruit and vegetables. Many communities are also providing options for support so it may be helpful to connect with your local community online via platforms such as the ‘nextdoor’ app and local newspapers.
  • Spend time making fresh meals if you have the ingredients and energy. It takes more time than ready meals, and can add structure to the day.
    • Check up bbcgoodfood.com for ideas: type in a search for ingredients you already have at home, and a range of recipe ideas pops up. Try some new meals, cakes or even sweets.
  • Contact your medical team if you have questions or queries to do with any issues around your physical health and cancer treatment. Who in the team could you phone, e.g your CNS?

Relationships

  • It can be difficult living in close proximity to others, but there is information about managing family relationships at home – https://www.relate.org.uk/covid-19-our-advice-and-tips-healthy-relationships.
  • Support younger family members – there are options to guide self-care for young people online: https://www.annafreud.org/on-my-mind/self-care/
  • Make a regular phone-call to a neighbour or friend who may need support – they will be in need of hearing another voice. Try to talk about other things rather than coronavirus.
  • Ask others how much they would like to discuss coronavirus and let them know how much you want to talk about it. Some people find it helpful talking about the latest updates, other people find it overwhelming. Try to communicate what your needs are.
  • Think about creative ways of connecting with others. How about arranging a “cook along’ via FaceTime/Skype/Zoom with a friend or family member.  You could even cook the same meal and eat at the same time. Could you watch/listen to the same film or podcast at the same time and then text or chat on the phone about it afterwards? Or play games such as scrabble, chess etc against a relative or friend on- line. Are there any online groups or communities you could join who have shared interests?
  • There is online support available if you want to talk to someone. SilverLine is free confidential helpline providing information, friendship and advice to older people, open 24/7: 0800 4708090.

Psychological wellbeing

  • Connect with friends and family; share your experiences.
  • Allow yourself space to process and make sense of how you are feeling about the covid-19 virus
    • Allow yourself time to worry (e.g. allocate yourself 15 minutes worry time, use a journal or diary to reflect on your experience and how you are feeling).
    • Notice how you are feeling and what you may be doing to help manage these feelings. Try to limit coping strategies that might be maladaptive in nature such as drinking alcohol or eating unhealthily. Use strategies which optimise your overall health and wellbeing.
  • Make a list of what you can and cannot control to help focus your energy.
  • Practice reflecting on good experiences. At the end of the day, reflec vt on three positive things that have happened each day – this could be anything at all, from receiving a text from a friend to enjoying a meal.
  • Try out some psychological resources involving ACT (Acceptance and Commitment Therapy) and mindfulness
    • Download the ACT companion app: http://www.actcompanion.com/. The app is available on android or ios. Enter the code TOGETHER on the subscription page to unlock all the app content free for three months until the end of June.
    • The Velindre Mindfulness app – an excellent  way to guide mindfulness practice; available free to download.
  • Think about your values or the activities that help give your life meaning. Ask yourself whether you could be doing more of these activities to help you manage during this period.
  • Create your own ‘self–isolation bag’. This     could include objects personal to you to help you manage and self soothe (e.g. your favourite scent, book, a jigsaw puzzle, hot water bottle, playlist).
  • It can be difficult to change habits, so keep using well-practiced, helpful strategies. Try to do them a bit more if you can.

Finances

Lastly, if you find that your low feelings are getting worse there is more specialised help available.

  • Contact your GP
  • Your GP can also refer you to your local primary mental health service for more specialised support.
  • The Samaritans provide free confidential emotional support to anyone experiencing feelings distress or despair including those that may lead to suicide: 08457 909090 (open 24/7).
  • Community Advice and Listening Line is a free confidential listening and emotional support service for people in Wales: 0800 132737 (open 24/7).
  • Mind Infoline offers free confidential help on a range of mental health issues: 0300 123 3393 (Monday- Friday, 9am-5pm).

Don’t sit on cancer symptoms during coronavirus outbreak

Don’t sit on cancer symptoms during coronavirus outbreak

Monday 27 April 2020

Wales’s leading cancer charities are urging people with cancer symptoms to see their doctor as GPs warn the coronavirus outbreak is keeping people with these symptoms away.

The 20 charities in the Wales Cancer Alliance are asking people to see their GP as usual if they have concerning symptoms such as changes to their body, unexplained lumps or bleeding and coughs which don’t go away after three weeks.

Their warning comes as many GPs in Wales report a worrying drop in the number of people who are seeing them with suspected cancer symptoms.

Clinicians are reporting a 75 per cent drop in urgent cancer referrals in Wales since the coronavirus outbreak started.

Doctors are urging people with new or changing symptoms which could be cancer to see their GP.

GP and Macmillan GP Advisor Elise Lang said: “In general practice we are working hard to adapt our usual processes in order to keep our patients COVID19 free.

“We are definitely still working but we are working in a new way.

“If you are worried about any new or changing symptom, I would ask you to contact your GP surgery and let us call you and work through the symptoms together and decide what is needed.

“We ask that you stay home and stay safe but seeing your primary care team may be an essential journey.”

Many GP surgeries are now offering appointments over the phone or virtually, which can be accessed easily and securely on a smartphone through a link.

When people need to be seen in person, GP staff may be wearing personal protection equipment to maintain safety.

Richard Pugh, Chair of the Wales Cancer Alliance and Head of Partnerships for Macmillan Cancer Support in Wales, said: “While these are exceptional circumstances, speedy diagnosis of cancer continues to be of utmost importance.

“Although many people referred for tests won’t have cancer, it’s vital symptoms are investigated as soon as possible. there’s a risk the current crisis could become a longer-term cancer crisis.

“We want people to know their GP surgery is open and staff want to hear from them if they have any symptoms.”

The Wales Cancer Alliance is a coalition of 20 charities working together to prevent cancer, improve care, fund research and influence policy in Wales. Member organisations are:

  • Brain Tumour Trust
  • Breast Cancer Now
  • Bowel Cancer UK
  • British Liver Trust
  • Blood Cancer Alliance
  • Cancer Research UK
  • Cancer Research Wales
  • Clic Sargent
  • Hospices Cymru
  • Jo’s Cervical Cancer Trust
  • Macmillan Cancer Support
  • Maggie’s
  • Marie Curie
  • Ovarian Cancer Action
  • Myeloma UK
  • Pancreatic Cancer UK
  • Prostate Cancer UK
  • Target Ovarian Cancer
  • Teenage Cancer Trust
  • Tenovus Cancer Care

The Wales Cancer Alliance has a page on its website with helpful resources, information and support for people living with cancer in Wales – https://walescanceralliance.org/2020/03/21/support-for-people-living-with-cancer/

Home Isolation & Shielding

Updated 27 March 2020

Home isolation, shielding and coronavirus

If you or someone you live with has symptoms of coronavirus, you will need to stay at home for up to 14 days. 

The Welsh Government has also asked people to self-isolate for up to 12 weeks if they have been identified as a greater risk. If you are in this category, the NHS will directly contact you with advice about the more stringent measures you should take in order to keep yourself and others safe. They will also tell you about the support available for home isolation. If you are worried you are in this group and you are not contacted, you should speak to your healthcare team.

It’s important to stay up-to-date with advice provided by the Welsh government and the NHS. Here are links to the latest information about staying at home:

We understand that home isolation isn’t easy. This page has advice we hope will help.

What is home isolation?

Home isolation means staying at home to stop the spread of coronavirus, or to reduce your risk of contracting it. 

According to advice from the NHS, this means you shouldn’t:

  • go to work, school or public areas
  • use public transport or taxis
  • have visitors, such as friends and family, in your home
  • go to buy food or collect medicine.

You are able to use your garden, if you have one. Please make sure you’re following the latest advice from GOV.WALES.

Preparing for home isolation

You might be feeling worried about home isolation. Being prepared will hopefully help ease some of your concerns. We recommend that you:

  • Think about what you will need in order to be able to stay at home for the full 7 to 14 days.
  • Think about and plan how you can get food and other supplies such as medications that you will need during this period.
  • Ask friends, family of your employer if they can drop off anything you need while you’re in home isolation.
  • Plan in advance what you will do if someone in your household were to feel much worse, such as having difficulties breathing.
  • If you order supplies online, make sure they are left outside your home for you to collect.

It’s understandable you may be feeling more anxious. We have prepared a list of organisations providing emotional and practical help.

Cancer and Coronavirus Q&A

UPDATED 24 MARCH 2020

If you have cancer, you might be worried about how coronavirus affects you. The most important thing is to follow the advice from the NHS and your healthcare team.

People with cancer may be at a higher risk of infection, so please follow the advice that will help reduce the risk of getting coronavirus (COVID-19). This page includes advice and information from Public Health Wales and GOV.WALES

It’s understandable that people with cancer may be feeling more anxious. We have prepared a list of organisations providing emotional and practical help.

Following new guidance issued by the UK government on Sunday 22nd March, we have updated our information.

Do I need to do anything differently as someone who is being treated / in remission from cancer / living with a chronic cancer?

Some people with cancer are more at risk of becoming seriously ill if they contract the COVID-19 infection:

  • people having chemotherapy, or who have received chemotherapy in the last three months;
  • 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 having intensive (radical) radiotherapy for lung cancer;
  • people who have had bone marrow or stem cell transplants in the last six months, or who are still taking immunosuppression drugs;
  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment.

If you are in this category, you should review the advice from Welsh Government on shielding here. If you fall into the category requiring shielding, you will be directly contacted by the NHS with advice about the more stringent measures you should take in order to keep yourself and others safe.

What will happen to my cancer treatment?

For example:

  • Will it be postponed?
  • Should I still go to hospital appointments?
  • How will my hospital decide whether I am a priority for treatment? Will there be national rules?
  • Should I start chemotherapy treatment (particularly if it is a 2nd/3rd line for “mop up”) or postpone?
  • If I get the virus and recover, will this affect my cancer treatment and outlook?

Your clinician may want to review your treatment plans, including whether the risks involved in any treatment have changed. In some cases, this may lead to a discussion about a revised or modified treatment plan. This is because the risks and benefits of certain treatments may be different in light of the coronavirus (COVID-19) risk

Many hospitals have started to use more telephone consultations as a way of helping people to avoid long waits in clinics and for treatment. You may be called to arrange your treatments in this way, and planned treatments may need to be moved to help with running a smooth service.

Your clinical team are best placed to talk with you about the effect on your treatment and appointments.  They will work with you to determine the best course of action in each individual situation.  If you have any concerns or questions about your treatment, please speak to your clinical team.

I am on chemotherapy, if I experience sweats / cough / shivering, should I call NHS 111 or the chemotherapy care line?

The advice in this situation is to immediately contact the chemotherapy care line, the Acute Oncology Service at your treating hospital or whatever number you were given by your team in the event of an urgent query. The important thing is to get urgent medical advice.

Home isolation

Please visit GOV.WALES website for guidance on home isolation.

Current government guidelines suggest those who need to home isolate are:

  • People with symptoms that may be caused by coronavirus (COVID-19) and do not require hospital treatment.
  • Those living in households with someone who shows symptoms that may be caused by coronavirus (COVID-19).

If I need to self-isolate, what will happen in relation to treatment that has to be done weekly?

Your clinical team are best placed to talk with you about the effect on your treatment and appointments.  They will work with you to determine the best course of action in each individual situation.

There is extended guidance on staying at home if you or someone in your household think you have coronavirus.

Advice for when staying at home

Staying at home will help control the spread of the virus to friends, the wider community, and particularly the most vulnerable. The following may make it easier:

  • Plan ahead and think about what you will need in order to be able to stay at home for the full 7 or 14 days.
  • Think about and plan how you can get food and other supplies such as medications that you will need during this period.
  • Ask friends, family or your employer if they can drop off anything you need.
  • If you order supplies online, make sure these are left outside your home for you to collect.
  • Keep in touch with friends, family and work colleagues over the phone or through social media.
  • Think about things you can do during your time at home. People who have successfully completed a period of staying at home have kept themselves busy with activities such as cooking, reading, online learning and watching films.
  • Plan in advance what you will do if someone in your household were to feel much worse, such as have difficulties breathing.
  • Find some exercises you can do at home – If you go out to exercise you will need to keep a safe distance (two metres) from other people.
  • If you are an employee and unable to work due to coronavirus, please refer to this guidance from the Department for Work and Pensions to find out about the support that is available to you.
  • Staying at home for a prolonged period can be difficult, frustrating and lonely for some people and that you or other household members may feel low. It can be particularly challenging if you don’t have much space or access to a garden.
  • It’s important to remember to take care of your mind as well as your body and to get support if you need it. Stay in touch with family and friends over the phone or on social media. There are also sources of support and information that can help, such as the Every Mind Matters website.

Caring for people with cancer

I am a carer to someone with cancer. Should I be doing anything differently?

If you provide essential care (such as help with washing, dressing, or preparing meals), you may find this guidance on Home care provision useful.

I have been exposed to the virus and am a carer for someone with cancer. What should I do? Who will look after the person I care for if I am unable to?

The Welsh Government is currently advising that if you have symptoms and you live with a vulnerable person, you should try to find somewhere else for them to stay for 14 days.

If you provide essential care (such as help with washing, dressing, or preparing meals), you may find this guidance on Home care provision useful.

It is also a good idea to think about what happens if you become unwell. 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 can contact your local council who should be able to help you. Carers UK have also produced advice for those currently caring for others.

The Future

Will cancer patients be a priority for the vaccine if/when it is developed?

There is currently no vaccine for this form of coronavirus. Research is being done to develop a vaccine, but this will take many months.

The best way to reduce your chance of infection is to follow the NHS advice on reducing the risk of picking up infections including thoroughly washing your hands frequently, practicing good hygiene and avoiding contact with people who are unwell.

Will there be problems accessing my cancer drugs?

There are currently no medicine shortages as a result of COVID-19. The country is well prepared to deal with any impacts of the coronavirus and we have stockpiles of generic drugs like paracetamol in the event of any supply issues.

The Government is working closely with industry, the NHS and others in the supply chain to ensure patients can access the medicines they need, and precautions are in place to prevent future shortages.

There is no need for patients to change the way they order prescriptions or take their medicines. Patients should always follow the advice of doctors, pharmacists or other prescribers who prescribe and dispense their medicines and medical products. The NHS has tried-and-tested ways of making sure patients receive their medicines and medical products, even under difficult circumstances. If patients order extra prescriptions, or stockpile, it will put pressure on stocks, meaning that some patients may not get the medicines or medical products they need.

A regularly updated list of cancer charities providing support can be found here.

Support for people living with cancer

Updated 2 April 2020

Help and information for people living with cancer

The Wales Cancer Alliance is a group of 20 cancer charities working together to make things better for people affected by cancer and their loved ones. The current pandemic of Covid-19 is no doubt making many feel worried and anxious, to support you through this we’ve produced a list of organisation’s whose support lines and information can really help.

You might want to just have a chat with a listening ear, find out more about benefits and financial support or you might have a question about your cancer that’s unrelated to Covid-19. The important thing is to know that we are there, and we are all working together to support you.

Macmillan Cancer Support

0808 808 00 00

8am-8pm everyday

Marie Curie

0800 090 2309

8am-6pm weekdays, 11am-5pm Saturdays

Bowel Cancer UK

Ask the Nurse Online Support

Prostate Cancer UK

0800 074 8383

9am-5pm Monday-Friday

Myeloma UK

0800 980 3332

9am-5pm weekdays

[email protected]

Information hub

The Brain Tumour Charity

0808 800 0004

9am-5pm weekdays

[email protected]

Jo’s Cervical Cancer Trust

0808 802 8000 Opening hours vary

Bloodwise

0808 208 0888

10am-4pm weekdays, 10am-1pm Wednesdays

Pancreatic Cancer UK

0808 801 0707 10am-4pm Monday to Friday or via email.

Kidney Cancer UK

01223 870008

9am-4pm weekdays, 4pm-6pm weekends

Online support available

Maggie’s Centre

Support online, over the phone and via video chat.

0300 123 1801 (UK Support line)

9am-5pm weekdays

Local support –

Maggie’s Cardiff (at Velindre Cancer Centre) 029 2240 8024 [email protected]

Maggie’s Swansea (at Singleton Hospital) 01792 200 000/ [email protected]

Tenovus Cancer Care

0808 808 1010

9am-5pm weekdays, 10am-1pm weekends

Breast Cancer Now

0808 800 6000

10am-3pm weekdays

Cancer Research UK

0808 800 4040

9am-5pm weekdays

Target Ovarian Cancer

020 7923 5475

9am-5:30pm, weekdays

British Liver Trust

0800 652 7330

10am-2.45pm weekdays (Not on bank holidays)

[email protected]

Online support group

Clic Sargeant

Online Live Chat 10am-4pm Monday to Friday and Facebook Groups

Ray of Light Wales

Online support, emails, telephone and Skype throughout the month. Facebook page here.

Old Mill Foundation

01792 851553

Via email

If you have any questions about the content on this page, please contact: Jon Antoniazzi, Policy & Public Affairs Manager, Wales for Macmillan Cancer Support – [email protected]

Statement on changes to screening provision

Issued 20th March 2020 and updated 27 March 2020

Statement in response to changes of screening provision in Wales following Covid-19 outbreak

Following the announcement to suspend some non-urgent appointments and procedures, Welsh Government has agreed the recommendations of Public Health Wales to temporarily pause some of the population based screening programmes. This will include the cancer screening programmes, and that: bowel, breast and cervical screening. This situation will be reviewed in 8 weeks.

If you have recently received an invitation to participate in bowel screening, Bowel Screening Wales want you to hold onto the kit for now and wait until services return to normal before completing it and sending it back. Bowel Screening Wales may send you a fresh kit or contact you to re-do your test when the service returns to normal.

The decision to pause cancer screening programmes in Wales is not one that has been taken lightly. But it will mean NHS screening staff can support front line services at this difficult time. It also means that the members of the public can observe the national call for no travel except when it is essential. Screening services will be restored as soon as possible. As screening services are for people without symptoms, it is important that anyone who is worried about possible cancer symptoms contacts their GP. GPs are being asked to increase their use of phone and video consulting so people don’t need to go into the surgery.

It’s understandable that people with possible cancer symptoms may be feeling more anxious at this time. If you or your loved ones would like to speak with someone about emotional support or general advice the following organisations provide support lines. They can help you.