Losing sleep

Raising a disabled or seriously ill child comes with additional daily pressures, such as hospital appointments, treatment, strict routines and handling extreme behaviour.  Despite the best efforts and dedication from parents and carers, it isn’t surprising that families need support and advice to help cope with this.  Here at the Family Fund, we help families raising disabled or seriously ill children or young people by providing grants for essential items such as washing machines, computers, sensory toys and family breaks to help ease these pressures.  The Fund also highlights the key issues these families face to policy makers, raising awareness of where there might be gaps in essential support and local resources.

Earlier this year, the Fund conducted research with 100 of our team of 200 Family Fund Advisers about common health issues amongst families.  Our Advisers meet face to face with families applying for a Family Fund grant, seeing first hand the significant health issues, affecting not just the disabled or seriously ill child, but the whole family.

Parents’ top health issue is the need for information about their child’s disability or condition from the start, with ongoing support to manage the many behaviours and features of these disabilities.  They can often be left after a diagnosis with little guidance or support about how to manage their child’s disability.

Other issues include access to mental health services for children and their parents, carers or siblings.  The emotional, practical and financial pressures impact on the whole family as they strive to manage the complex health needs of a disabled or seriously ill child.

Also common across these families is long waiting lists for Speech and Language Therapy physiotherapy and occupational therapy services.  They can wait months, sometimes years for an appointment to help manage their child’s disability.  When families do get an appointment, it can conflict with managing many other hospital, specialist clinic and therapist appointments, none of which are co-ordinated.  This places an extreme strain on finances and missing lots of days from work.

Sleep deprivation is very common within these families as they attend to the child throughout the night for treatment, nightmares or discomfort in bed.  Some parents and carers are on high alert for a disturbance so any sleep they get is not restful, taking it in turns and sleeping in shifts.  All of this can lead to lost hours at work, lost hours in school, mental health issues and stress for the whole household.   Many parents will relate to this during the first few years getting their newborn into a regular sleeping routine.  The thing to remember is that children with disabilities or health conditions may not grow out of this nightly occurrence as their needs may remain the same throughout their lives.

The Family Fund helps with grants relating to helping children sleep better such as new mattresses, beds and black out blinds, but also with exercise or sensory equipment to help children wind down to sleep.  Most parents have no access to guidance about their child’s sleep routines which leaves them with nowhere to turn.

We are looking at the extent of this issue for families and what professional support they receive, if any, by conducting a short survey with families raising disabled or seriously ill children. The results of the survey will help us to highlight gaps in services and support our work with other organisations, looking at what more can be done.

www.surveymonkey.com/s/familyfundsleep

Clare Kassa is Network Development Manager at the Family Fund