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Changes to children’s hospice care

If your child is under hospice care or may need to be, we understand you might feel particularly worried at this unnerving time and have many questions.

We’ve asked Sarah Holloway, Head of Children’s Services at St. Andrew’s Hospice, to draw on her own experiences to answer some commonly asked questions.

What can children’s hospices currently support with given the situation with coronavirus?

All hospices are aware that this is a very worrying time for families. For those affected by a brain tumour there is the added stress of what this may mean for their child’s well-being, as well as any impact on their treatment or rehabilitation.

Every hospice will have its own approach to services on offer, depending on their local situation and the changing advice from NHS England. You should check what’s happening at your local hospice – you can do this by visiting their website. Although each hospice will be different, they will all be looking at how they can support families, so I would urge anyone who has concerns to contact their hospice directly and have a conversation.

All hospices will be experiencing a reduction in some of the services they can offer. But they will all be looking for ways that they can support the families who need their help.

At St. Andrew’s Hospice, for example, we are no longer running our day care services. However, we can still provide staff to visit children in their homes to support their care needs. We are also telephoning all of our families on a regular basis to ensure they are safe, offer support and signpost to other services if required.

The hospice also continues to offer inpatient stays. We recognise that caring for a child who is unwell is a difficult job and the respite we offer is essential for many families. So any family who needs a short break can contact us to discuss and arrange this.

We are working very closely with other providers across health, education and social care to ensure that we work in a joined up way for families.

If any of our parents become ill during this time, we are committed to supporting the child. So we offer inpatient admission or home care to children whose parents are too unwell to look after them.

We are also working closely with colleagues in acute hospitals. If they identify children who could leave hospital earlier than planned by coming into our care, we are happy to support with this.

The hospice is open to end of life care and we will do all we can to support families in this situation. We are able to offer family support and bereavement services.

There are some restrictions to visiting at the hospice.

Together for Short Lives also has a COVID-19 page with links to some of the children’s hospices as well as some general advice, which may be beneficial to read through.

Do you have any advice for families on accessing support?

  • Keep in touch with your care providers, even if you aren’t seeing them face to face at the moment.
  • Think ahead to what may be a problem for your family over the next weeks and months.
  • Make sure you have backup plans, e.g. factor in extra time for ordering your medications.
  • If there are areas where you think you may have problems, talk to your care team.

The most important thing is to ask for support. This situation is entirely unprecedented and everyone is struggling with it. If you have an unwell child it is an extra pressure.

Asking for support is not an admission of failure, it’s a sensible thing to do for both your child and family. It is better to access support early than get into a crisis.

What advice would you give families on balancing quality of life at the end of their child’s life, while following shielding guidance?

Having to cope with the death of your child at any time is the most difficult thing for a parent to do. Managing that within the context of shielding is even more daunting.

The important thing to remember is that you still need to focus on what is right for your child and family. Everyone in this situation will make different choices, and that’s okay.

First and foremost, talk to one another. Talk to your child in whatever way suits you and them, and find out their opinions and what is important to them. The government rules on staying at home don't list visiting someone who is dying as a reason to leave the house. However, we don’t feel that these rules are intended to stop people saying goodbye when someone is dying.

If you are thinking about having visitors, it is important to think in terms of getting or spreading coronavirus. For example, you should consider whether there is any risk to the person who is dying, or to anyone else, such as staff helping with their care or other family or friends.

Remember that if anyone who is thinking about visiting you has symptoms of coronavirus, they should not visit you.

If important people in your child’s life aren’t able to visit in their last weeks or days of life, this will be very upsetting. It’s a very difficult situation to be in. Try to remember that this is not anyone’s fault. It may be the best way to reduce the risk of other people getting coronavirus.

Perhaps you could think about other ways of keeping everyone in touch. Phone, video call, text or social media can be useful tools. Family members could talk to or read to your child. Even if they are not very alert, they may be aware of the other person’s voice and find this comforting.

Remember to take time for you as a family, rather than just being concerned about other people’s feelings. Spend whatever time you need to with each other.

Ensure that you still get rest, eat a balanced diet, and exercise where you can. These things will help you manage your stress levels better.

If you need to talk to someone outside of the family then many support services will still be offering remote appointments, by telephone or other means.

Are there specific resources or information that might be helpful for families during this time?

  • Check your local hospice website.
  • Talk to your local council if you’re struggling to access food or medicine.

The following organisations have produced guidance and advice for families:

We’d like to say thank you to Sarah for taking the time to answer these questions and support our community at this difficult time.

Please do remember, we in the Children and Families Team are here if you need us. You can contact us via Live Chat and/or on our Support and Information Line (0808 800 0004), which is available between 9.00am–5.00pm, Monday–Friday.

You can also email us at: childrenandfamilies@thebraintumourcharity.org

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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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