NHS Big Tea, Neve Style

All paintings of Neve (in the gallery) painted by me, Emily Tammam

I am fundraising in memory of my daughter Neve, to support the Oxfordshire Children’s Community Nursing (CCN) Team to buy their own cooling equipment, in the form of a Cuddle Cot and a Cuddle Blanket. It seemed only fitting to jump on the bandwagon of the NHS Big Tea; Neve always loved a celebration. Hot chocolate was a firm favourite, accompanied by a Freddo if she could get away with it. On Friday, 5th July, please join me, virtually, to enjoy a mug of hot chocolate and fundraise in Neve’s memory.

When Neve died last year, we were lucky enough to be able to borrow a cooling blanket from our local hospice, Helen & Douglas House. This meant we could keep Neve at home with us for 40 hours after her death. Many of the people who loved her, including friends, family, carers, nurses, and doctors were able to come and say goodbye. Before she died, I had no idea that keeping her at home, in her own bed, could be such a healing experience, after years of trauma and uncertainty.

The previous three years, since Neve’s brain cancer diagnosis, had been very challenging for us all. Her experience of cancer was harrowing and complex, with much suffering and trauma. Our family lived with huge levels of uncertainty and sorrow. Whilst we had been anticipating her death for most of that time, when it did occur it felt completely unexpected. There was no gentle period of sitting vigil, which I had thought might help us transition through her death.

Instead, using the cooling blanket, our family created a quiet space to sit with Neve and begin the process of grieving her death. Over those 40 hours, Neve began to change, with gentle signs of deterioration. I had no idea how helpful this would be, as a part of processing her death. When it came time for her to leave our house and then to be buried, we knew with absolute certainty that she had died and that these were the next right steps in the process.

I have written in more depth about these 40 hours. You can read this here https://emilytammam.substack.com/p/40-hours-at-home

The CCN nursing team provided Neve and us with exceptional palliative care. At the moment, they rely on other services to lend them this equipment. This increases the risk of delay or that the equipment might not be available, and it’s yet another thing for busy, overstretched nurses to coordinate. We know that the number of children needing end of life care is increasing and that more families are choosing to keep their child at home while they are dying. I would love all families to have the same choices that we did.

I am hoping to raise £9,000, in order to purchase both a one cooling cot (for babies) and a cooling blanket. If I raise more than my target, the Oxford Health Charity has agreed that I can ring-fence any additional funds, to support local children’s palliative and end of life care.

Thank you so much for your help and support in my endeavour. Buying this cooling equipment would support both our local NHS teams and families who are facing heartbreak and trauma. Let's use this day of fundraising to drink hot chocolate and raise funds for this vital equipment, in Neve’s memory.

You can read more about Neve here https://www.emilytammam.co.uk/writing