Lockdown has been a difficult time for most of us with normality thrown out the window, but for Shambhavi and her family the situation became even more difficult when their daughter, Aayushi, became ill in March just at the time when many services were being put on hold.
Approaching her eighteenth birthday, Aayushi became very ill with concerns she might not reach her birthday. She has a severe global neuro-disability.
Shambhavi says, ‘At the beginning of lockdown when Aayushi was very poorly and we were quarantined I was concerned that nobody would be coming into our home and that we would not have the support we needed. It felt like there were a lot of things going on and we were feeling overwhelmed with all the different discussions about her deteriorating condition.’
‘However, it was quickly recognised that we were looking after a very ill child with complex needs and the Children’s Hospice at Home nurses coordinated with the community nurses and other teams to put together a support plan. The nurses were on-hand in the evenings and weekends which was a big relief for me as I did not want Aayushi going to the hospital or to see an out-of-hours GP as they don’t know her well enough.’
One of the big benefits of the Children’s Hospice at Home service is that the specialist nurses in the team can use their knowledge and understanding of the child’s condition to support the family and offer care plans that reflect the parents’ wishes.
‘Having the nurses at this time, when Aayushi was at her most vulnerable, gave us great peace of mind.’
For example, Shambhavi says, ‘Having the nurses at this time, when Aayushi was at her most vulnerable, gave us great peace of mind. On one occasion, Aayushi was behaving strangely and we couldn’t work out if it was the side effects of some medication she’d been given and the GP was advising we go to the hospital. However after speaking to Leanne, Clinical Nurse Specialist, she reassured me that it was OK and not a side effect of the medication which saved us from a hospital visit potentially spending hours there and exposing Aayushi to Covid-19.’
Shambhavi continues, ‘It was a really, really, really brilliant experience and I was so happy that Aayushi had the Rennie Grove nurses looking after her. They even had conversations on our behalf so that I didn’t need to manage the handovers between different teams, as I was finding it so overwhelming at the time.’
Providing help remotely
Although the nursing team couldn’t enter the home, Shambhavi found the service provided on the phone reassuring. She says, ‘They were available on the phone all of the time, which was especially helpful out-of-hours, and they offered advice on Aayushi’s symptoms or if I wasn’t sure about what medication to give her to manage her pain. They would listen and make suggestions and then discuss with the GP to make it happen.’
Reflecting on the family’s experience during lockdown, Shambhavi recognises that the situation was difficult, but the experience of the nursing team’s support and having valued family time has helped.
Shambhavi comments, ‘It feels like we’ve experienced both sides of the coin as when my daughter was really poorly and we really didn’t think she would make her birthday, being in lockdown made the situation much worse. But the high level of support was not something I was expecting at all and it was really great to see the nurses coming together with the consultant and GP to make a plan for how we can look after Aayushi at home.’
She adds, ‘We’ve really enjoyed our time as a family and, although we’ve been really busy during this period looking after both of our children, we haven’t had the normal pressures of rushing to different appointments and could just focus on looking after the children which has been good for all of us.’
‘The nursing team has been my lifeline during lockdown’
A few months ago, Shambhavi and her family were not sure how they would manage during lockdown or what level of support they’d get from different organisations involved in Aayushi’s care but now recognise fully how much the Children’s Hospice at Home nursing team helped them through this difficult time. Shambhavi concluded, ‘the nursing team has been my lifeline during lockdown. All the normal services are not available 24 hours, whereas their nurses are always on hand to help. It’s been an amazing experience.’
The Pepper Foundation works together with Rennie Grove Hospice Care to ensure that the families of children like Aayushi have the support they need. Without the help of people like you, this service may not exist in Herts and Bucks. You can support the work done by the Pepper Foundation and Rennie Grove Hospice Care by sponsoring an hour of nursing care for £28.50 or making a regular monthly contribution.