Today is the 28th of January and we have just visited Richard House Children’s Hospice in Beckton. We brought two boxes of new toys and donated £850 to pay for music therapy and playtime supplies.
Lucy, from the Richard House Fundraising Team, gave us a tour of the building, beginning with the multi-sensory room. The room, which looked like a lunar capsule with a water bed, was host to an array of lights, screens, and projectors that can transform the white space into a dream. I didn’t get the full experience, but I can imagine, even as an adult, being mesmerized by the moving walls, sounds and textures.
Lucy explained that the room has two functions. The first is to give disabled children a sensory experience. Many children in the hospice experience severe cognitive and sensory impairments that limit their interaction with the world around them. Secondly, it helps children to forget their pain and endless hospital appointment, giving them a place to relax.
The holistic approach of Richard House’s care sets it apart. They address the essential medical needs of children while also offering specialist therapy and excursions that hospitals do not provide, and some parents cannot afford.
Currently, government funding only covers palliative care. However, Lucy was keen to point out how necessary the other half of hospice care is. Families and children can have access to bereavement support, music therapy sessions, and day trips to Southend-On-Sea (this requires much more planning and money than you might expect). This is why hospice care is so valuable for the majority of Richard House patients who come from the most deprived areas in London.
While donations from legacies and other sources have increased in recent years, securing government funding become a struggle. For every £4 the hospice spends, £3 must be raised by Lucy and her colleagues in order to keep the hospice running free of charge and, hopefully, expand in order to accommodate the increasingly long list of referrals. There are five beds at Richard House and only five other children’s hospices in London. This leaves many families, especially those living in poverty, unable to access good quality end of life care for their children.
As well as focussing on seriously ill patients, the hospice considers the welfare of parents and siblings. Brothers and sisters can stay in the same room together, and flats are provided upstairs to give families 24/7 access to the hospice. The flats are useful for parents with a newborn transitioning out of hospital care into the home. This can be a very difficult time for parents who have just had a baby diagnosed with a complex condition, and are then expected to go home and look after them without any training. The hospice gives nurses time to show parents the right way to treat serious conditions, whilst easing their acceptance of the emotional challenges that lie ahead.
Richard House also gives struggling families a rare opportunity for respite. At the moment they can offer each family 12 nights a year during which their child can stay overnight in one of the five specially equipped bedrooms. This allows mums and dads to catch up on lost sleep, take a holiday/weekend away, and give their other children some attention. Lucy described parents who must supervise their child 24 hours a day, leaving them unable to get a full night’s sleep or spend any quality time together. It’s situations like this that make the respite service so precious.
As we entered the Quiet Room, Lucy told us that the space was designed to accommodate the broad range of faiths and cultures that pass through the hospice. The Quiet Room allows families to reflect, and recognise that others go through the same things. It is easy for parents to forget this when they are forced to give up work and a social life. There was also a book for relatives to write messages in, many of which were written in the memory of a recently departed child. Although these were painful pages, they allow people to communicate their experiences long after using the hospice service.
We were then taken to the bedrooms. Lucy had already dispelled the myth that children live in the hospice, so it was quite empty when we looked around. Gladly, many of them were at school. We did see one child enjoying Finding Nemo, while a father walked around looking relieved to have some help.
Lucy was keen to show off the bathroom, including a bath tub the size of a small boat adorned with music, lights, and water jets. As she explained the workings of the tub, and a lay–down shower, we discussed the future of the struggling hospice sector. Richard House already services 18 boroughs around London, and there has been a massive increase in referrals as the population continues to increase. Plans to add a sixth bedroom are constructive, but the number of people who would benefit from hospice care far outstrips the resources of London’s hospice sector. Recently, Richard House has had to prioritise the most complex cases, which more often come from outside the usual catchment of Newham, Tower Hamlets and Hackney.
Their response to the shortage of beds has been to introduce a new service called “Hospice at Home”. Through the service, Richard House nurses are sent to care for children at home, for three hours a week. Parents can use the time to have a nap, do some shopping, or spend time with their other children, without the need to travel to and from the hospice, which itself can be time-consuming and difficult. For siblings, the focus on their poorly brother or sister can have a negative effect on their upbringing, therefore these three hours are precious. So precious that the demand is, again, relentless. The work they do at Richard House speaks for itself.
As our tour came to an end, Lucy gave us fair warning before entering the end of life suite. The Rainbow Suite is designed to allow families up to a week with their child after they have passed away. They are given private access from a flat above, as well as bereavement therapy, support with practical arrangements, and the freedom to create memories and say goodbye to their child – fully supported by the Richard House team.
The empty bed was chastening and we could feel the pain clinging to the air. Most parents never expect to be in that position, but anyone could end up there. Without a hospice to alleviate the violent impact of losing a child, mothers, fathers, and siblings are left damaged and vulnerable. If any charity deserves our money then it is Richard House.
Although he survived, it is clear that death is a large part of what the hospice deals with. Despite this, the hospice is full of life and laughter. The staff, nurses, parents, and children, balance reality with hope and happiness, acceptance and togetherness. It is a place for children to receive care that includes their family, allowing everyone to share in their grief and manage it together.