We know our community is thinking about the impact of coronavirus (COVID-19) on their treatment. People’s appointments and treatments are changing during this crisis, so we are providing information about what’s happening, the reasons for changes and some advice on how to cope.
Changes to treatment
[Updated – 07 January 2021]
You may hear that individual hospitals and trusts are making decisions to postpone non-urgent surgery’s due to coronavirus (Covid-19). This happened in April 2020 during the national lockdown when the NHS made the decision to postpone all non-urgent elective operations in England for 3 months. We appreciate that this may raise questions and concerns for some of our community.
We are closely monitoring this situation and will update information as soon as we can. Your medical team will let you know if you scan, treatment or surgery will be postponed. If you remain unsure if your scan, treatment or surgery will go ahead within the current restrictions please contact your medical team.
You can also get in touch with our Information and Support Team by emailing support@thebraintumourcharity.org, calling 0808 800 0004 or through live chat by clicking the red button in the bottom corner of your screen.
Are you feeling worried about going to appointments?
If you have 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 your appointment hasn’t been cancelled it’s important to remember it’s still vital for you 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 you to attend your appointment and take the right steps to protect you. This includes postponing or cancelling appointments if they think it necessary.
- If you‘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 you should still attend your appointment.
- Measures are being put in place to make sure anyone attending an appointment is being kept safe. This will include:
What can I do if I feel nervous about going to my next appointment?
It’s absolutely natural to be feeling a bit nervous about attending your 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 you safe.
You can also ask whether there are other options for your appointment, for example holding it over the phone or virtually.
If you 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.
How the coronavirus pandemic changed my treatment
“I know it is difficult to go through dramatic changes, but I try to hold myself together both mentally and physically. I try to remain positive and encourage others going through such difficult times. Now, usually I would not let everyone know, but I have turned my home into a place where I can dance instead of my stroll to the seaside that I cannot do right now!” Daniel Knight.
So why might people’s treatment be changed?
There are a few reasons why this might happen, but it is important to remember that each medical team will review this on a case by case basis. They will review you as an individual, and consider what is best for you in your specific situation. What they decide will be constantly reviewed, so if there are any changes in the situation or new concerns about your health, they will continue to consider this.
Our recommendation continues to be that you keep in touch with your clinical team to understand their recommendations for your treatment at this time, and to keep them briefed on any changes in your condition which they need to know about.
Reasons for changes might include:
- Weighing the benefit of treatment against the risks of coronavirus (Covid-19)
The government has outlined that there are groups of people within the UK who would be considered extremely vulnerable and, if they were to catch the virus, would be at increased risk. People who are receiving chemotherapy are considered extremely vulnerable, usually due to the impact that this treatment has on their immune system. Other treatments can also make you more vulnerable to coronavirus (COVID-19), so your medical team will consider this, and will make a decision that is prioritising your safety and health. In some cases, it may be that postponing treatment is safer for you than putting yourself at a higher risk of catching the virus. Please don’t compare your plan to others it is important to remember you are all on individual treatment regimens - Shortage of staff
It has been widely reported that coronavirus (COVID-19) is having a large impact on the capacity of the NHS and this has led to a change in many services, including cancer services. For example, it might mean your clinical team may also need to work outside their specialism (eg. ITU or Respiratory Medicine) to support wider efforts to cope with Coronavirus. Other medical professionals are also being trained in how to treat patients with coronavirus (COVID-19), and being redeployed to staff other areas of the hospital that are dealing with the virus. This could all lead to fewer staff to work with patients, meaning treatment may be adapted to reflect this.
And, finally, like the rest of the population, some staff are self-isolating because they have or have been in contact with someone who has Coronavirus. - Surgery needs additional staff support
A number of patients may see their surgery has been cancelled or postponed. In addition to the individual assessment of the risk for each person, resources and staffing will be a factor in this during the Coronavirus crisis.
Surgery is a complex treatment and involves a number of medical professionals working together at one time. It’s vital that the right team and resources are all in place to make sure each individual receives the best care possible. If medical professionals and specialist resources are in demand for tackling Coronavirus, surgical teams may not be able to proceed with every surgery.
- Continuing changes in protocol
Many hospitals are now using telephone and online video consultations as a way of helping people to avoid exposure to Coronavirus in clinics. 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.
Currently the situation and the measures to tackle it are changing rapidly. This uncertainty enters into the evaluation of risk and benefit when your clinical team are considering whether it’s best for you to start a new long term treatment such as radiotherapy.
Clinicians may also need to prioritise treatment for those most in need. All decisions are made with multidisciplinary team (MDT) input and will be clearly communicated with you, the patients.
A number of factors will be considered in decisions, including:
They will continue to review their decision, and if you notice a change or worsening in your usual symptoms, you should contact your medical team as soon as possible to alert them to this. In addition to this, what one hospital or medical team introduces for their patients, may not be the same as a hospital in another part of the country, as the impact of Coronavirus will vary by hospital and area.
Clinical trials and Coronavirus
Those who are already part of a clinical trial will generally continue to be treated, but many clinical trials are now halting recruitment.
If you’re already part of a trial
Although there may need to be some adjustments to protocols, those already on a trial will generally continue to be treated. Of course, safety is the top priority.
If, for any reason, a trial can’t continue or you aren’t able to remain part of the trial, you will still be given standard care.
You should continue to talk to your doctors or trial team if you have any concerns. Some trial co-ordinators have suggested that email is better, as these are easier to monitor than phone calls when people are working across different sites and emails create a trail.
I want to take part in a clinical trial
Across the UK, recruitment onto trials is being managed on a site-by-site and case-by-case basis, but most trials are halting recruitment to:
- redploy staff to deal with coronavirus (COVID-19) on the frontline
- make research facilities available for tackling coronavirus (COVID-19)
- make sure there is sufficient staff to monitor patient safety for those already on trials
- limit the contact between people, especially those who are particularly vulnerable.
The decision to halt recruitment is often being taken by the organisations who own the trial, not the unit/site itself.
It’s important to remember that not all trials are halting recruitment and there may be very rare exceptions where a doctor can apply for you to join a trial. So, if you’re interested in joining a trial you should still discuss it with your doctor to get the latest advice and information.
How can we help you?
Our support team is here for you, we can be here to help with questions you may have or to simply provide a listening ear. You can contact our support and information line by ringing 0808 800 0004, emailing us at support@thebraintumourcharity.org or starting a live chat. The Support and Information Line is open Monday to Friday, between 9.00am and 5.00pm.
We can connect you with others who understand and may be going through similar experiences, through our online communities. These groups are safe and supportive spaces, where you talk to others who truly understand.
How can you look after yourself?
We understand hearing the news that your own or your loved one’s treatment plans have changed may naturally cause feelings of concern, distress and worry. We’ve pulled together some information and organisations who may be able to help guide you through these uncertain times and feelings, with small, yet valuable, tips and advice to help you cope.
- Acknowledge how you are feeling and talk to someone you know you can trust. Talking about how you feel and being listened to can help you feel more supported and less alone. You can join our online communities to talk about these and other issues.
- Try to keep up with or introduce a daily routine. Having a routine can be a really helpful way to keep you focussed on the day to day, rather than worrying about the future.
- Trying to focus on things you can control, whether that’s through looking after your diet, keeping up with regular exercise, or getting enough sleep, where possible.
- Write things down. If or when you have a worry about something, for instance what’s going to happen without treatment or something you are unable to answer – write it down on a piece on paper or in a book and either rip it up or close the book. That way you’ve importantly acknowledged the problem, by writing it down, but also actively got rid of the thought at that particular moment.
- Try relaxation, breathing exercises and mindfulness. We have some really useful resources on the importance of looking after your well-being and ideas on how to do this. Mind also have some useful relaxation tips, relaxation exercises, you might also want to explore their information on mindfulness.
- Try activities such as; yoga, meditation (YouTube has lots of free online sessions) to encourage relaxation and calmness, whilst helping to manage feelings of stress.
- Choose a book, find a podcast or listen to relaxing music to help you switch off, for even just a short time.
Your well-being and coping with anxiety
For more advice and information, you may find our page on anxiety beneficial to read through.
Both Macmillan and Marie Curie also offer valuable guidance and advice on coping with times of uncertainty and managing anxiety.
Please do remember if you or a loved one is struggling with the feelings you’re experiencing or you feel like you want to harm yourself or others, there are a number of helplines and listening services available:
- Samaritans – You can call 116 123 (free from any phone) or email jo@samaritans.org 24 hours a day.
- Papyrus HOPELINEUK for those under 35 years on, you can call on 0800 068 4141 (weekdays 10am-10pm, weekends 2pm-10pm and bank holidays 2pm–10pm), email pat@papyrus-uk.org or text 07786 209 697.
- Or in an emergency, visit A&E or dial 999
There’s more information on different helplines and listening services on the Mind website.
More information
Coronavirus updates
Get the latest health advice around coronavirus COVID-19 and how you might be affected
Vaccinations & brain tumours
Information and advice about newly developed COVID-19 vaccinations.
Information for carers
Advice on how to protect the people with a brain tumour that you care for during coronavirus