"Care for my daughter during the pandemic"

My daughter was diagnosed with a brain tumour in November 2019. She was only 8 months old. She underwent several operations on her brain and now has hydrocephalus so she has a shunt fitted. She started chemotherapy in December 2019.

She needed an NG tube fitted immediately as she was not eating anything and she was vomiting lots. She also needed lots of medications so the NG tube was useful for administering medications.

This was all a huge shock to me. I never expected my baby to have cancer. It has been a really difficult time for us but we've had a lot of support from many charities such as CLIC Sargent and we've had a huge amount of support from the nurses at Bristol children's hospital and the oncology teams at Bristol children's hospital and Musgrove Park hospital.

Nutricia have supplied and delivered all of my daughters feed and all medical equipment for her NG tube and we were told we would have a Nutricia nurse that would come out every 30 days to change her NG tube, but this never happened.

My daughter was vomiting 6-8 times daily for 11 moths and her tube would come out during a vomit, this was happening weekly, sometimes 2-3 times in a week. We have spent so much time in hospital and my understanding was that Nutricia would help support patients at home to limit the amount of time spent in hospital, but this was not the case with us.

Our CLIC nurses (oncology nurses) from Musgrove Park hospital would come out to us instead during the evenings, weekends and bank holidays, including new years day!

My understanding is that this extra support was set up because of coronavirus to protect vulnerable patients and limit hospital visits to prevent spread of infection. This was a huge support for us it really made our lives easier not having to take our baby to hospital in the middle of the night or in the winter months. If coronavirus didn't exist I fear we would have had a lot more hospital visits as Nutricia haven't been very supportive and they have said recently our daughter was a high risk case so they could not help with changing her NG tube, after promising over a year ago that they would help.

We have been very well looked after by both hospitals and the community teams such as physiotherapist, dietitians, speech and language therapists etc. We are extremely grateful for the NHS. We have at times felt that staff are working very hard on very long shifts and communication isn't always great between nurses and doctors which results in us having to remember a lot, and remind doctors several times which was exhausting. However we understand how difficult their jobs are and the stress they are under, especially during coronavirus.

We felt quite isolated when we started shielding as lots of our daughter's therapists were then unable to visit us at home. Luckily our daughter has remained very well considering what she has been through and we haven't needed much support at home. However I worry about the families that are struggling.

Our CLIC oncology nurses have been absolutely amazing. Our main nurse Olivia visited our home weekly to care for our daughter and without her and the other community nurses, things would have been much more difficult and stressful and very lonely during this pandemic.