A father and child smiling at each other.

Your questions answered

You probably have a million questions – so here’s where we start answering them. 

We understand that before you meet us, a hospice might seem like a scary place. You may not know what we do, or whether we’re the best place for you. You might be wondering why you’re even thinking about a hospice at all. We’re here to help: we hope to answer a few of your questions here, although we know there will be lots more to talk about.

Most importantly, please don't think you’re alone or that your circumstances are so unique that no one could possibly understand. If you’re not sure if we can help, then get in touch and just have the chat with us. Don't sit and wonder – we're here, day and night.

Our hospice is not a building; it’s more than that – not least because we can provide our services in your home or in hospital as well as at Russell House (in fact, in all 3 places, if that’s what you need).  Think of us as a giant wraparound hug which lifts burdens from your shoulders, helps you with every little detail, and cares for every single member of your family. 

Of course, we offer medical and clinical support for your child. But we also make sure you get a break, that you have someone to talk to, that you’re helped with practical daily burdens, and that you can make the best of the precious time you spend as a family. 

We’re often told our hospice is a real home from home, and that’s exactly what we hope you’ll find, too. A place where children can be children, and where parents can be parents – not just carers. Of course there are sad moments, but there are many, many more happy ones. We believe in light and laughter and hope!

No. Despite what most people think, a children's hospice isn’t simply a place where children go to die – far from it, although for some children that will, sadly, be the outcome. But the myth still persists, so some people are horrified if a hospice is suggested to them. Please let us reassure you: we’re here to provide a huge range of support to any family where a child has a life-shortening condition. But ‘shorter’ can mean well into adulthood, so we regularly help young people transition over to an adult hospice. 

There are, sadly, times when the end of a child’s life approaches all too soon. But what we can do is give you support, practical help, gentle kindness, and above all more control over your situation. 

To begin with, you can rely on the Care Quality Commission’s inspection report, which rated us ‘outstanding’ and puts us in the top 1% of all of the services they inspect. Then, when you’ve got to know us, you’ll discover for yourself just how much you can put your trust in us. 

No. The care and support we provide is completely free for our families.

There are over 400 conditions which could shorten a child's life. So we meet all kinds of situations, from families whose babies are unlikely to survive birth to families whose child may live well into their teens or twenties. We’ve seen almost every condition, from every background, no matter how rare, so we’re well-placed to welcome every family and care for them.

You can be referred during pregnancy or at any point in your child’s life, even long after your first diagnosis, all the way through to your child's 19th birthday (after that, an adult hospice may be more suitable).

We’re here for families, whatever their future holds. We start supporting families with children who’ve just been diagnosed with a life-shortening condition, and children who’ve been living with their diagnosis for a while. You may have been struggling alone with your child for some time, and really need a support network. We also start looking after mums and dads-to-be during pregnancy, helping them make sense of what they’ve been told and preparing them for the journey ahead. When a young person we’re caring for reaches 21, we help them and their family to move to adult services. We support bereaved families with services like therapy and counselling for two years after their loss. And, if they wish, families can stay connected with Forget Me Not for as long as they want after that. 

We won't pretend to know what you need straight away. However, we will listen carefully, take the time to get to know you and your child, and work hard to really understand every aspect of your child’s condition and its impact on all of your lives. That way, we can agree together what’s the best way to help you.

There’s no limit. You might just want to use our counselling service, or respite care, or to join a support group. You might want to use our therapy facilities, or our Hospice at Home service. Or all of it!

Yes, and no. You’ll certainly get an exceptionally high standard of clinical care across all of the medical services we offer. But there are some things we don’t do: for example, we don’t deliver babies, and we don’t have an intensive care unit. Sometimes, you’ll need services which you can only get from a hospital – but if that’s the case, we can be present. We can come to the hospital; we can be there for the birth; we can be there in the NNU, PICU and pediatric wards. We’ll walk with you every step of the way. We can even help your child leave hospital more quickly, bringing them to be looked after either at Russell House or at home. 

If you live in West Yorkshire and your baby or child has a life-shortening condition (and is under 19 years of age) or your baby or child has died as a result of a life-shortening condition, you can be referred to us. You might be referred by your GP or a nurse, social worker or hospital consultant. Or you can refer yourself by completing our referral form.

We’ll work with you to understand what kind of support you need, and where. We’ll talk you through all of our services, so you can choose how many, or how few, you’d like to use. And don’t forget, it’s not just about your child, it’s about the whole family: it’s about any brothers and sisters, it’s about grandparents, and most importantly it’s about you, too. So you’re free to choose services which make you feel better. 

We know that lives change, and needs come and go. Our services reflect that. There may be times when you need our help, and other times when you don't. You can come to us at any time, and we’ll always be there to help. We encourage families to reach out to us whenever they’re ready.