My name is Gabriella Walker. In February this year, my daughter Thea died aged two years and nine months. She had Niemann-Pick disease type A, a rare, degenerative life-limiting condition. Forget Me Not Children’s Hospice, which provides services to more than 600 families across West Yorkshire and North Manchester, were a lifeline for me and my family. Of the £4million its hospice in Huddersfield needs every year to provide vital care, it receives just 3% from the NHS and local councils. To make sure other families like mine can access the support they need to make the most of their short time together, I’m asking the public to sign my open letter to Health and Social Care Secretary Matt Hancock. I’m calling on him to make sure NHS England makes good on its promise to protect and increase NHS funding for children’s hospices in England.
Thea’s condition meant she had to be fed through a tube, relied on a wheelchair and wouldn’t learn to talk. In the months following her diagnosis, which we got just before her first birthday, we felt very lost and alone. I felt as though the NHS had given up on Thea. Lovely though everyone involved in her care was, it felt like because there was nothing anyone could do for her, we were on our own, forgotten.
But because we’d been told that we had years before she would die, and she wasn’t ‘ill’, at that point, we didn’t see the need for a hospice.
We did need help though – not least with the practical realities of living with this disease. So, in the end, we reached out to Forget Me Not Children’s Hospice.
Forget Me Not turned out not to be about death or illness. None of the children we met looked particularly sick and neither they nor their families were behaving as though anyone was dying anytime soon. It was a happy place. It was a place we could finally feel normal.
We took Thea to their baby group where there were other children like Thea, with feeding tubes and machines. Most importantly there were staff who had seen it all before. They had experience with sensory play and communication and could teach us so much. We also received two hours a week of childcare for Thea, and eight overnight stays a year.
As Thea’s disease progressed we relied more on the medical support provided by Forget Me Not. After one lengthy stay in hospital we were discharged to the hospice for a week of step-down care. It meant we could leave hospital sooner and Thea was in a homelier environment where all her medical and personal needs were taken care of while we were helped to get used to the new routines and medications.
The support from Forget Me Not was invaluable. We felt less alone, more empowered. Their help gave us the confidence and skills to pack as much life into the few short years Thea had as we could.
But it was hard, really hard. Thea was too dependent and too young to qualify for support for disabled children through the local authority, and not sick enough to get support from the NHS. We weren’t eligible for any benefits or tax credits but although I continued to work full-time while my husband looked after Thea and her brother, my salary wasn’t covering our living costs.
We were very lucky to have had the support of Forget Me Not and some other local services. It’s the reason we have so many happy memories. It is the reason that we were able to cope with – as much as possible – a smile on our face.
I was shocked when I learnt how little Forget Me Not and other hospices like them receive from the NHS and local councils. I dread to think how different things could have been if Forget Me Not had not been there. But I know there are thousands of families in this country who have to struggle on alone.
Do we want families who live with the knowledge that in a few short years their child will pass away, to have to spend that time worrying, unable to pay bills, fighting for the most minimum level of support? Forget Me Not ensured that my family spent those years living as best we possibly could, focussed on enjoying the time we had together. Surely every family deserves the same.