We asked our families how we're doing, and here's what they told us. They used words such as ‘lifesaving’, ‘outstanding’, ‘caring’ and ‘compassionate’ to describe our hospice – a service so vital during such a highly uncertain time.

On arrival to Haven House and going through the booking information the nurse had already made personal notes on my son’s needs and interests. This was really nice and important as it showed that she had gone the extra mile to receive him for care. It just made me feel, for her, he was just not another number or child coming here – he’s an individual.
The nurse took time to check in on me and ask me if I was alright – It’s funny because sometimes people forget about you - the care giver.

These are the heartfelt and profound words of a Haven House mum, recently captured in our Family Satisfaction Survey – a survey which reveals what we mean to families during what is an unparalleled time of anxiety.

Families reported that Haven House was a “valuable source” of support for them at a time when other services had paused. Using video calls, messaging and phone calls, our care team have maintained relationships with parents, seriously ill children and siblings.

One parent said: “During the pandemic Haven House has really stepped up through music therapy and yoga and by continuing to offer these via zoom….we have managed to feel connected at a time where all other input has really ground to a halt.”

Respite care, music therapy and physiotherapy were highlighted as services that are most important to our families. In a world which has turned virtual we have adapted the way that we deliver these services and are reaching out to our families delivering these therapies via zoom.

Whether it be reading stories, using toys or music, or leading craft activities online these sessions have enabled parents to take a much-needed break while their children have some fun. Our play team have also dropped activity packs to families’ doorsteps, to brighten children’s days.

One parent explained: “Staff go above and beyond to offer support. Our play coordinator Rowline in particular has been supporting Samuel* with play and his educational development at home during the pandemic also including his little brother. Firstly, via Zoom and now in our home, it has been such valuable support for our family which is greatly appreciated. Samuel has missed a huge amount of schooling and Rowline has worked extremely hard to get to know his interests and areas that he struggles with helping to improve his focus and improve his basic learning skills and building on his overall confidence.”

The survey showed the everyday pressures and challenges our families are facing, which can often leave them exhausted, and the importance of our respite care. A service so essential to our families, that's why fundraising with a vision to be able to support more families means so much to Haven House. With essential fundraising and community support, we could reach more families who need us.

We are very grateful for the respite service as without this we would not have a break. My son needs 24hr care and he has lots of different health conditions….We as a family are under extreme pressure every day.

At Haven House, service improvement is a continuous and a vital aspect of providing the best care our children and families can possibly receive. Feedback from those who use our services allow an insight and understanding of how our services are currently and how they can be improved in the future.

Responses to this survey were generally excellent and extremely complimentary about the experiences with Haven House. 

Director of Care at Haven House Eileen White said: “Caring for a seriously ill child brings a high degree of stress and anxiety to a family at any time. Since the onset of the COVID-19 pandemic in March 2020, families are facing new emotional and practical pressures on top of their ongoing concern for their seriously ill child.

“We know our families need us more than ever. We value the feedback we receive and are constantly listening and responding to the evolving needs of our children and families. We will continue to adapt and innovate our services to support them during this highly uncertain time.”

No one should feel alone when caring for a child with a life-limiting condition or diagnosis. Our mission is to provide the highest quality palliative and holistic care services to babies, children and young people and their families in our local communities. 

To find out more about our families and the important work we do, read our family stories here or watch our films.