Living with a terminal illness during COVID-19 (Coronavirus)

Last updated 27 October 2020

 

Visiting the hospice - if you are planning on visiting someone at the hospice, please watch this safety video first. Visiting hours are 10am - 8pm and only one visitor per patient is permitted each day. Visitors may stay for as long as they like during the permitted hours. If you are going to be visiting for a long period of time, please bring your own food and drink provisions, although tea and coffee will be available. Thank you for your understanding.

 

If a family member or friend is living with a terminal illness, or if you have a terminal illness yourself, you may be worried about coronavirus. Some people living with a terminal illness may be at higher risk of experiencing more serious complications
from coronavirus. We have some general information on this page that you might find helpful.

 

About coronavirus

 

You can find the latest information about coronavirus from:

   

How can I avoid catching or spreading coronavirus?

 

Staying at home - on 23 March, the Government introduced new rules to say that everyone must stay at home to help stop the spread of coronavirus. You can only leave your home:

 
  • to shop for basic essentials, such as food and medication only when you really need to
  • to do one form of exercise a day such as a run, walk or cycle, alone or with other people you live with
  • for any medical need for example, to provide care for someone or visit a pharmacy
  • to travel to and from work but only where this is absolutely necessary.


GOV.UK has more information on these rules.

 

Other things you can do to stay safe


The NHS and GOV.UK also advise that you can:

 
  • wash your hands with soap and water often do this for at least 20 seconds
  • use hand sanitiser gel if soap and water are not available
  • wash your hands as soon as you get home, if you need to go out
  • 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
  • stay 2 metres (3 steps) away from other people, if you need to go outside
  • do not touch your eyes, nose or mouth if your hands are not clean.
 

What should I do if I have coronavirus symptoms?


The NHS advises that you stay at home if you have coronavirus symptoms, either:

 
  • a high temperature - this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
  • a new, continuous cough - this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual).
 

You should follow NHS advice about how long you need to stay at home for and what you need to do. If you live with other

people, they also need to follow NHS advice.

 

If you live with someone who is extremely vulnerable or vulnerable (see below), GOV.UK has advice on what you should do.

 

People who are extremely vulnerable


Some people are at very high risk of experiencing more serious complications from coronavirus. This includes the following people:

 
  • Solid organ transplant recipients.
  • 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.
  • People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  • People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  • People on immunosuppression therapies sufficient to significantly increase risk of infection.
  • Women who are pregnant with significant heart disease, congenital or acquired.
 

If someone is in this group, GOV.UK has advice on “shielding” them. They advise that they stay at home and avoid face-to-face contact with other people for at least 12 weeks. The NHS says that they will contact people in this group before Sunday 29 March 2020. Speak to your GP or care team if you haven’t been contacted and you think you should have been.

 

People who are vulnerable


Even if someone isn’t extremely vulnerable, they may still be at higher risk of experiencing more serious complications. People who are vulnerable includes those who:

 
  • are 70 or over
  • are under 70 with an underlying health condition
  • chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
  • chronic heart disease, such as heart failure
  • chronic kidney disease
  • chronic liver disease, such as hepatitis
  • chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy
  • diabetes
  • problems with your spleen for example, sickle cell disease or if you have had your spleen removed
  • a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy
  • being seriously overweight (a body mass index (BMI) of 40 or above)
  • are pregnant.
 

If someone is in this group, GOV.UK has advice on protecting them. This includes being extra careful to follow advice on handwashing and reducing face-to-face contact with other people.

 

Visiting the Hospice

 

Advice for visitors of Saint Francis Hospice patients during COVID-19.

We are asking visitors to respect the new limit of one visitor at the bedside at any one time. And where possible please consider keeping in touch via phone or video calls.

 

The visiting window is between 10am and 8pm, but please could we ask that the visiting time is restricted to 2 hours per visitor per patient. We understand that circumstances may prevail this in certain situations.

 

Please do not visit if you are:

• unwell, especially if you have a high temperature, a new, persistent cough or a loss of, or change in, your normal sense of taste or smell (anosmia)
• vulnerable as a result of your medication, a chronic illness or if you are over 70 years of age.

Please remember to wash your hands and apply alcohol gel as you enter the Hospice, before you enter the ward. This is for your safety, your loved ones and our staff. All visitors to the ward are now required to wear PPE (gowns, gloves and masks) before they enter the ward. If this is something you would like to discuss we are happy to meet with you and offer guidance.

We understand that if you will want to be in touch with your loved one, even if you are unwell. Please call us on 01708 753319 so we can arrange a way to make this happen.

 

What you may be worried about

 

For many people, the uncertainty surrounding coronavirus is the hardest thing to handle. We don’t know how exactly we’ll be impacted or how bad things might get. And that makes it all too easy to catastrophize and spiral out into overwhelming dread and panic. Some of the common worries include:

 
  • when will this will all end?
  • when will things will open?
  • when will the “peak” will be?
  • will you able to get your food and vital items like medication?
  • the safety of yourself and your loved ones
  • what if you get ill will you be treated and get help?
  • when you will see your family again?
  • your mental health
  • about the family who have gone through bereavement
  • looking after your elderly neighbour
  • your finances and job
  • your relationships
  • your children's education and their well being
  • seeing your friends again what will that be like


Our patients may worry about whether their treatment will go ahead, sadness about the time they have left with their families and not being able to do what they would like to.

 

You may not know what your worries are, but you may know you feel anxious, or you cannot sleep, your appetite changed, you’re angry or short with your emotions. These are sign of being anxious and stressed as you face the unknown and uncertainty.

 

Fears about COVID-19 can take an emotional toll, especially if you’re already living with an anxiety disorder. But you’re not powerless. Below are things that you can do to assist you with your anxiety and managing them when they arise.

 

Complementary therapies

 

Here are some information sheets that patients and families may find helpful, to support you during this difficult time. These have been created for you, as we are not able to provide our usual therapy services here at Saint Francis Hospice at the moment.


This information has been put together by the Therapies team, however these are suggestions only and should not replace your usual medical advice.

 

If you would like to speak to a member of the therapies team to discuss what may be of benefit to you, please contact us on the numbers below via the referral hub.

   

Please see the links below to five short videos giving carers and family members instructions on how they can give their loved ones therapies to relieve their symptoms and help them to relax.

   

If you have any questions, then please contact 01708 753319 ext 2224/2268/3053 and speak to a member of the team.

 

Family Support Services

 

We are still offering all services but over the telephone for those in the community and over video and telephone for children services.

 

The Family Support Services team are seeing and supporting patients on the ward as well as their families. We are respecting the guidance around infection prevention.

 

All groups have been suspended until its safe to resume, but we are available to talk on the phone to support our regular group attendees.

 

For members of our Young Adult Group, we are making calls to check in with you and make sure you are coping with the new situation. If you haven't heard from us yet, expect a call soon.

We are still here to support you in any way that we can. If you are a young adult living with additional needs (and you are within the areas of West Essex, Brentwood, Barking, Havering, Redbridge & Dagenham) and would like to link with us we are particularly looking at telephone support at this time. Do get in touch and let’s see how we can work with you and your carers going forward.


If you need to talk please call 01708 753319 and ask for a member of the Family Support Services team. Alternatively, please email familysupportservices@sfh.org.uk and we will help you via email.

 

Currently our support is still only to patients known to us and their loves ones. 

 

Here are some short videos that you might find useful to help support you and your family:

   

OrangeLine

 

OrangeLine will continue supporting lonely and isolated people during the isolation period due to the Covid19 virus. Staff and volunteers are working remotely and will continue supporting our existing service users and to take new referrals.

 

Our phone number has been redirected so that you can ring directly for support during Monday-Friday from 9am-5pm.

 

Please call us on 01708 758649 and remember we are just a phone call away.

 

Hospice at Home


The hospice is continuing to offer up to 2 hours blocks of care to those being cared for in last 2 weeks of life. We are continuing to offer 9am - 9pm service with support overnight from Maria Curie where available. 


The hospice has a service coordinator available from 9am - 5pm, 7 days a week to take calls, referrals and allocate priority care to those most in need.

 

We continue to focus our visits on end of life support and comfort care of our patients and their families. During all visits personal protective equipment (PPE) will be used to prevent the spread of infection.

 

If you need to speak to a member of the Hospice at Home team please call 01708 758603.

 

Specialist Community & Crisis Support (SCCS) services


The hospice is continuing to offer SCCS service via the Specialist Advice Line which is available 24 hours a day, 7 days a week. 

 

This means, if you are in a crisis, you can call our Specialist Advice Line 01708 758643 to speak to a Clinical Nurse Specialist. 


Our key focus is on symptom management and comfort care at home is also a key priority.


We are offering crisis home visits with personal protective equipment (PPE) being used to to prevent the spread of infection.


A number of the team are now working remotely to follow guidance on social distancing and we are working hard to overcome challenges that may arise. We regret that we are currently unable to offer outpatient appointments at the hospice. 


We are only a phone call away for advice and support. With an current increase in referrals, there may be a slight delay in getting back to you. Please do call us with concerns and leave a message if the line is busy 01708 753319.