When we opened in 1987, Martin House was the first children’s hospice in Yorkshire and only the second in the UK. So much has changed since then, both in terms of how we have grown and developed as an organisation, and across children’s palliative care nationally.
As we look towards the future our challenge is understanding what children and young people with life-limiting conditions – and their families – need from us for the next 30 years.
At the core of that is Martin House itself – families value the time they spend here, so we need to make sure our facilities and services are fit for the future. Our building is 30 years old so we need to update it and create more space.
We also want to offer more to families. Martin House has a community team, which supports people at home, and we are looking to expand that service. It’s a means of providing more support than occasional respite visits can offer, and reaching those who may not want to come to a hospice.
Advances in medicine and technology in the last 30 years have meant many children live longer lives, and we created our teenage unit Whitby Lodge in 2002 in recognition of their changing needs. Now, as many more young people reach adulthood, there is a gap as they transition from paediatric to adult services, which we need to address.
We are working in collaboration with some of our older users and St Leonard’s Hospice in York to learn what services they need, and how they can best be provided as they move into their 20s and 30s. It’s part of our desire to contribute to improve the knowledge about caring for children with life-limiting conditions, an area which has had little academic research.
For some years we have been involved in research, and last January we partnered with the University of York to launch the Martin House Research Centre. We believe we can produce research that could fundamentally change the lives of some children.
Both our present services and ambitions for the future come at a price – currently it costs more than £6.5m a year to run Martin House.
We receive a contribution from statutory sources – Clinical Commissioning Groups and NHS England – of just under £1m, which covers around 20 per cent of our care costs. Yet children’s hospice care is often long-term, and includes providing support for the whole family, which is inevitably more expensive.
It means we have a mammoth fundraising task every year, and we are lucky as a regional charity to have the support of thousands of people from across West, North and East Yorkshire.
But economically the country is still not where it was 10 years ago, and there are all sorts of challenges to people’s ability to donate, while there is a lot of competition from other charities.
Another challenge we face is the difficulties facing the NHS, not just in terms of funding and the pressures it is under as we have seen this winter; but in the existing national shortage of doctors and nurses, and the decline in numbers of people training, particularly in paediatrics.
We are privileged at Martin House to have 24-hour, seven days a week cover from a team of excellent doctors and nurses. If the decline in recruitment and training continues, we are going to have a generation of shortages of qualified staff coming through the system.
It’s an issue which affects the whole country, but it means we will have to look at how we maintain our level of service in the future. One of the ways we are tackling it is by hosting specialist training places for consultants in paediatric palliative care. We are one of only three centres in the UK which provides this – the others are Great Ormond Street Hospital and Cardiff.
The guiding vision of Martin House is that every child and young person has access to palliative care when and where they need it.
Every year we support around 420 families, and a further 150 bereaved families, but there are always more people we could reach.
Part of this is making sure families know where to turn to when they need the kind of care we give; but also in breaching the gap between what people think children’s hospice care is, and what we actually do.
People see the word ‘hospice’ and think it means dying, but we give long-term support to families as well as end of life and bereavement care. So much of our work is about creating memories, making the most of happy times and helping our children and young people to have fulfilling lives.
The word hospice also means a place of shelter, and our mission is to ensure that Martin House remains a safe haven for everyone who needs us for the next 30 years and beyond.
Martin Warhurst is chief executive of Martin House Hospice Care for Children and Young People.