Max’s Story
Max is 8 years old and has complex health care needs, including complex epilepsy.
When his younger sister Martha was born we realised we would benefit from some help with Max as his condition was deteriorating.
We were accepted by the Rennie Grove Hospice Care team at a particularly difficult time - with both children in hospital.
I had a reasonable understanding of what children’s hospices were due to my previous work experiences, which is why I didn’t hesitate to accept when we were offered the support.
Now we have the support I can’t imagine not having it.
I appreciate how holistic it is and that one issue impacts another issue, so it’s not always possible to look at one problem or one symptom but rather the need to look at all areas and also how it impacts us as a family as well as Max as an individual.
Francesca supported us as his hospice at home nurse before moving to Helen and Douglas House as one of the outreach nurses and continued to support us in that role.
Max and Martha both always looked forward to her visits to our home. She was always happy to listen or liaise with others or refer on when needed and to support in any way she could.
She helped us to get funding for equipment, enabled trips out when I had a buggy and a wheelchair to push and delivered presents to hospital on Christmas Day when we found ourselves unexpectedly separated for Christmas during lockdown when Max was extremely unwell.
We have been fortunate to be able to receive support from Rennie Grove hospice at home team as well as Helen and Douglas house with inpatient stays as well as outreach support. Both teams communicate with each other and with his NHS professionals and can therefore decide where the most appropriate place for treatment or support is - hospital, hospice or home.
Having this support has enabled us to keep Max out of hospital on various occasions when previously we would have had to have taken him in.
It is so reassuring that we have professionals we can ring who know Max at any time, day or night.
