Being a nurse at the moment is both scary and fulfilling. The children that we look after at Haven House are so vulnerable that the sense of responsibility to keep them safe whilst they are with us, and when they can’t be with us is sometimes overwhelming. We are acutely aware of our NHS and care colleagues who are under unprecedented strain and there is a real sense amongst our Care team that we are willing to pull out all the stops to support them in any way we can. Although we have been preparing for this crisis for a while, I am always surprised at the variety of different ways we are responding to relieve pressure on the NHS, whilst supporting our families at the same time.

Every day is a new challenge and our expert team of nurses and carers have amazed me with their flexibility and responsiveness. We have increased our bed capacity at short notice and are taking ever more complex children, sometimes straight from intensive care, in order to free up vital NHS beds. This has been an immense challenge as normally these children would have had a much longer stay in hospital. Trying to juggle rapidly learning new advanced care skills, whilst ensuring everyone is safe to do this is often difficult, however it is vital for these very unwell children.

As a result of coronavirus in London, most children’s wards have been moved to a large hospital in Central London (GOSH) which means that children who need long stays are often far from their homes with their families travelling long distances to visit them which can be risky. Stepdown beds at the hospice have meant that these children requiring longer stays can continue them closer to home where their parents can stay with them. Our family flat has provided a refuge for parents and siblings to gain the confidence to care for their child’s complex medical needs whilst being close by.

One of the most challenging elements of caring for a life-limited child can be the isolation the children and families feel when living with their condition. In better times, Haven House provides a vital community for these families to recharge and reconnect as well as meet others in similar situations.

In a time where most of us are having a taste of how difficult a life of isolation can be, our team at Haven House is working round the clock to discover new ways to reach out to our families and support them.

Many of our parents say that caring for a life limited child is a 24-hour role and thankfully they can normally access support to share this through school, networks of friends and carers. With most of these options now closed to them, Haven House has stepped up to provide Crisis Care and respite for the times when things are just too difficult, or parents themselves are unable to care for them due to illness.

The Community and Wellbeing team have come up with some brilliantly innovative solutions to help support children and families at this time. Like many we have embraced technology to continue to deliver services, and Music Therapy, Therapeutic Yoga and Physiotherapy are all being carried out via video calling. Parents, siblings and children are able to access our counselling service via the telephone or video calling, which is especially important in a time where many of us are anxious. Our play team have been busy devising play boxes, providing specialist sensory activities tailored to each child and delivered to their front door. Nearly all our children fall in to the ‘shielding’ category which means that they should not leave the house for the next 3 months, this can make it extremely difficult to obtain basics like groceries and medications and our team have been working hard to support our families by delivering these where needed.

Quickly adapting our working is a fresh challenge every day, but one that the nurses, carers and therapists have risen to magnificently.

The resilience and dedication they have shown in their determination to support our NHS colleagues and ensuring our families are looked after is awe inspiring and makes me proud to be a nurse at Haven House.