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Caring for someone with a brain tumour during the coronavirus pandemic

If you look after someone with a brain tumour then you may have concerns about how to protect them, and what to do if you become unwell or unable to look after them during Coronavirus.

How can I protect the person I care for?

The NHS has written to everyone considered to be at risk of severe illness if they catch the coronavirus.

If a person you care for has received this letter, they must stay at home at all times and avoid all face-to-face contact for at least 12 weeks, except from you as their carer and healthcare workers continuing to provide essential medical care. However if you as a carer have any of the symptoms of corona virus you should stop any face to face contact. We have some information below about creating an Emergency plan to ensure the person you care for still receives the care they need in the event that you are unable to continue caring.

If you are caring for someone who falls into the clinically ‘extremely vulnerable’ category for risk of severe illness from coronavirus (COVID-19), there are some simple steps that you can take to protect them and to reduce their risk. Ensure you follow advice on good hygiene:

  • only care that is essential should be provided
  • wash your hands when you arrive at the home of the person you care for and often thereafter, using soap and water for at least 20 seconds or use hand sanitiser
  • 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
  • do not visit if you are unwell and make alternative arrangements for their care
  • provide information on who they should call if they feel unwell, how to use the NHS 111 online coronavirus service and leave the number for NHS 111 prominently displayed
  • find out about different sources of support that could be used. Further advice on creating a contingency plan is available from Carers UK.

Is it safe for a care workers to come into our home?

The government has issued guidance to home care providers to ensure that appropriate levels of hygiene are achieved to reduce the risk of infection.

Care workers must stay away if they have any of the symptoms of coronavirus.

Speak with your care provider about what protective measures they are taking and how they plan to respond if any of their staff are affected.

Are you feeling worried about going to appointments?

If your loved one has an upcoming hospital appointment, it can seem a bit scary to attend it, with everything happening at the moment and lots of advice about staying at home. But if the appointment hasn’t been cancelled it’s important to remember it’s still vital for your loved one to attend if your medical team believe that it’s safe to do so.

If you’re feeling scared about this, please remember the following points:

  • Your medical team will carefully consider whether it’s safe for your loved one to attend your appointment and take the right steps to protect them. This includes postponing or cancelling appointments if they think it necessary.
  • If they‘re no longer required to attend an appointment, your medical team will be in touch with you to explain this. If you haven’t been contacted then they should still attend their appointment.
  • Measures are being put in place to make sure anyone attending an appointment is being kept safe. This will include:
    • holding appointments in separate areas of the hospital
    • restricting the number of people you’ll have contact with
    • disinfecting all medical equipment such as MRI scanners, waiting rooms and consultation rooms
    • asking people not to turn up early to appointments, to limit the amount of time spent at the hospital
    • texting you when the clinic or scan team are ready to see you, so you can wait safely in your car.

What can I do if I feel nervous about my loved one going to thier next appointment?

It’s absolutely natural to be feeling a bit nervous about your loved one attending their appointment, but the best thing you can do is contact your medical team, key worker or clinical nurse specialist. They can help to reassure you and talk you through the measures they’re taking to keep people safe.

You can also ask whether there are other options for appointments, for example holding it over the phone or virtually.

If you or a loved one have any symptoms related to coronavirus (Covid-19), such as a high temperature or a new continuous cough, please do not attend your hospital appointment. You also must not attend your appointment if you should be self-isolating because you, or somebody close to you, has, or has had, symptoms. If you aren’t sure whether this applies to you or not, please contact your medical team.

Making an Emergency Plan

An emergency plan makes provisions for occasions when you are unable to fulfil your caring role. Knowing that you have made an Emergency plan can give you, and the person you care for, peace of mind that appropriate care will be in place for them.

Regardless of the current circumstances it is always a good idea if you are a carer to have an emergency plan. However, now more than ever, it is recommended that all carers create an emergency plan with the person that they care for. If you become unable to care for your loved one this plan will help you arrange help from other people to deliver the care that’s needed. This could be help from family or friends, or a care provider.

The government advice is that your emergency plan should include:

  • the name and address and any other contact details of the person you look after
  • who you and the person you look after would like to be contacted in an emergency
  • details of any medication the person you look after is taking
  • details of any ongoing treatment they need
  • details of any medical appointments they need to keep

You could also include the following information about the person you care for:

  • where any current medication is stored
  • details of any known allergies
  • details of their GP and pharmacy
  • any care and support services they receive
  • any continence products needed and who supplies them
  • any mobility challenges and mobility aids such as a wheelchair or hoist
  • anything behavioural that others need to be aware of.

An emergency plan should be in a format that can readily be shared with other people who will need to discuss the plan with the person you care for.

You may be able to arrange help and support from family and friends, but it can be reassuring to have the involvement of your local authority or healthcare provider in case informal arrangements fall through. It may also be helpful to contact your local carers support organisation who can help with contingency planning.

Looking after yourself

Caring for someone with a brain tumour can be both physically and emotionally demanding at any time. However, there are additional pressures at the current time and the potential for reduced access to support such as respite care. It can be easy to put your own needs last; but you need to look after your own health and wellbeing.

You may find it helpful to stay in touch with friends and families, by phone, online or by post. Let people know how you would like to stay in touch and build that into your routine.

Physical activity is important for health and wellbeing, including managing stress, and encouraging positive feelings and sleep. If you are able to, and following government guidance, go for a walk once a day or find an activity that you can do in the home.

Learn more about support for carers

Useful contacts

It may also be helpful to contact your local carers support organisation who can help with contingency planning and support that may be available in your area. You can find out about local carer organisations at Carers UK.

A helpline has been set up for those who are struggling to get the supplies and support they need – call 0800 028 8327.

A number of local voluntary groups that may be able to help in practical ways, for example with home deliveries.

We know that, sadly, some people in our community have seen changes in their loved ones that have led to them being violent or aggressive, although this is rare. 

These changes can seem even more worrying in the current situation, but it’s important to remember that if this is something you’re experiencing, your safety is paramount and the current social distancing (or isolation) rules don’t apply if you need to leave your home to escape domestic violence.

If you feel you’re at risk of abuse, remember there’s help and support available, including police response, online support, helplines, refuges and other services.

You are not alone!

Find out more

Taking time off work

Trying to juggle looking after your loved one and working can be really difficult and you might have to look at your working hours to find a different way to manage it all. But we also know that understanding your rights can be confusing, so we’ve put together some information to help you do what you need to.

As an employee, you have a statutory right to take a ‘reasonable’ amount of time off from work:

  • To see to an emergency or unforeseen matter involving your partner, child, parent, grandchild, or someone who relies on you for care.
  • There is no fixed amount of time you can take off.
  • The time off is unpaid unless your employer is willing to give paid time off as a contractual right.
  • If you aren’t given time off for dependants, your employer may allow you ‘compassionate leave’ - this can be paid or unpaid leave for emergency situations. Check your employment contract, company handbook or intranet for details about compassionate leave.

ACAS has more useful information about taking time about taking time off to look after someone that you care for, so do take a look.

Furlough leave

We know that a lot of people in our community have looked into going onto furlough leave, to help manage things. We know this isn’t an easy conversation to have with your employer, and you might not even be sure if you can have it.

You can be on any type of employment contract, including full-time, part-time, agency, flexible or zero-hour contracts to be furloughed. Although you can’t claim through this scheme if you’re self-employed or get any income from self-employment.

You can be furloughed if you have caring responsibilities that have arisen from Coronavirus (COVID-19) and mean you are:

  • unable to work (including from home)
  • working reduced hours

Examples of caring responsibilities include caring for:

  • children who are at home as a result of school or childcare facilities closing
  • a vulnerable individual in your household

You should speak to your employer about whether they plan to place staff on furlough.

We know that this conversation isn’t always an easy one. Therefore you might want to have a look at information from Carers UK to prepare for this conversation.

About the author

I’m a member of the Children and Families Team at The Brain Tumour Charity and previously practised as a Speech and Language Therapist, working with children of all ages. I’m dedicated to supporting children, young people and families affected by a brain tumour by being there every step of the way to provide help, understanding and support, when it’s needed most.

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