In October 2012 a Neurologist at Great Ormond Street Hospital gave my husband and I the worst imaginable news. Our youngest child Frank, aged 4, was diagnosed with Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition.
Frank had been healthy and had developed as expected until the age of three and a half when he started having seizures.
Batten disease has taken his mobility, his speech, his sight, and his ability to swallow and eat safely. He has a life expectancy of only 6-12 years old. Frank suffers from dementia and distressing seizures. He is completely immobile, fed through a tube and needs assistance with breathing.
He requires extensive medications and 24 hour care. The demands are unrelenting!
A bewildering array of services are involved. To support Frank we access services from almost 20 disciplines across two hospitals and in the community. To complicate things further Frank attends our closest suitable school in Westminster but has an Education budget and Key Worker in Brent.
I cannot begin to describe the complexity and stress of trying to co-ordinate the appointments, the paperwork and the preparation with all the relevant teams to advocate for Frank. Why can’t Education, Social Care and Health Care share electronic records so I don’t have to constantly relay information between services?
Why does it take 2 days to fill in the Disability Living Allowance application form? Why was it so hard to get a Statement of Educational Needs for a child with clearly complex needs?
I have been close to breaking point many times and as a healthcare professional I am better placed to navigate the system than many parents. Advice, support and help from two organisations that work with Together for Short Lives may have saved my sanity.
At the time of the diagnosis I was given a leaflet for the Batten Disease Family Association, who support families with Frank’s condition. I was advised to contact our local hospice. My image of a hospice was of a gloomy, sombre place where adults went to die, not somewhere I would want to take my child. However, the Support Worker from the Batten Disease Family Association told me “children’s hospices are not like adult hospices”. Feeling encouraged I visited the hospice.
My motivation? The hope that when Frank was nearing the end of his life they would have the expertise and resources to manage Frank’s symptoms, ensure he was comfortable and that his death would be as peaceful as possible.
It quickly became apparent that Shooting Star Hospice offered so much more than just end of life care. The support we have received has been invaluable. At Shooting Star House we can hand over Frank’s care and enjoy some precious time as Mum and Dad rather than being Frank’s carers.
The environment is not clinical like a hospital, but homely and welcoming with specialist equipment that benefits Frank. He enjoys the hydrotherapy pool, wheelchair swing and sensory room.
Frank’s brother and sister benefit from having less stressed parents, who can better meet their needs. They have also enjoyed meeting other siblings at the hospice, children who like them have siblings with complex needs and understand the challenges they face.
Last year, after a long admission Frank was able to leave hospital sooner because the hospice could provide 24 hour nursing care. After weeks of sleeping in hospital beside Frank I was exhausted and grateful to have the privacy of my own room at the hospice. I was able to sleep uninterrupted, safe in the knowledge Frank was receiving the care he needed and if his condition deteriorated I could be called to his room in a moment.
It was a difficult time but it was wonderful to be together, staying as a family after weeks apart. To eat together at a table, to sit outdoors in the garden and feel confident to leave Frank’s side, knowing he was safe, in a comforting and familiar place.
We stayed for almost a month while the Great Ormond Street Palliative Care team worked with the hospice to control Frank’s unrelenting seizures. Support from palliative care helps our family enormously, enabling us to cope with Frank’s increasingly complex needs. They have supported us from Frank’s devastating diagnosis and they will continue to support us for as long as necessary.
We are not unique
There are 49,000 children and families like ours. They all deserve the support we receive to make the most of their short lives together.
Rachel Thompson spoke to MPs and Lords about her experience caring for Frank at a Together for Short Lives event on 7 February to launch our All Party Parliamentary Group for Children Who Need Palliative Care.