Thank you to the Jewish Chronicle for featuring this piece in their finance supplement…
Families facing the devastating reality of having a seriously ill child not only contend with huge emotional and practical challenges, but also the often-overlooked financial implications.
Charity Camp Simcha, which offers support to UK Jewish families with a seriously ill child, says at least 50% of families they support are feeling the financial impact of their child’s condition. The cost-of-living crisis from the past 18 months has only made matters worse.
Camp Simcha Head of Services Daniel Gillis explains: “There are multiple financial implications – such as gaps in healthcare support because while the NHS covers all essential healthcare services, additional therapies, specialised equipment and certain medications may not be fully covered leading to extra expenses.
“There may be travel and accommodation costs as families sometimes need to access specialised treatment centres that are not near them; the costs of running life-saving medical equipment; lost income as both parents may not be able to work, and the emotional toll a child’s illness takes on a family can lead to mental health challenges. While the NHS offers mental health services, available resource sadly often outstrips demand so families may be forced to seek private therapy.”
Many of Camp Simcha’s services are geared up to mitigating these challenges. Support such as hospital transport, crisis meals, counselling, other therapeutic services and respite care can take the pressure of families who are struggling to cope.
Days out organised by the charity, with medical care on site, provide an emotional lift and can often be the only opportunity for families to spend time out together, due to prohibitive cost and accessibility issues.
In addition, Camp Simcha’s social work team can signpost to available benefits and grants and support families with their applications.
Leat Preston, Camp Simcha social work manager, explains that she looks at every factor that may be impacting how a family is coping.
“Camp Simcha puts in place a range of bespoke practical, therapeutic and emotional support, but then we also liaise with other organisations and agencies to ensure they access all available help.
“Together we work out what they are entitled to from the local authority in terms of a package of care and benefits. We can also help with grant applications for specialised equipment or adaptions they may need to make at home.
“Local authority budget cuts in some areas mean these care packages sometimes need to be supplemented, so Camp Simcha will try to work in tandem to fill in gaps in support, such as providing additional respite care.”
Camp Simcha parent Katie, whose daughter Leia has a rare mitochondrial disease, says: “When you have an unwell child the costs are just enormous; a lot of the practical help we receive from Camp Simcha we simply couldn’t afford by ourselves.
“They have helped us with transport to and from hospital, countless numbers of meals and respite care. We can’t just hire any babysitter to look after Leia as she needs very specific care and neither of our parents live in London, so Camp Simcha have helped with a carer on a number of occasions.
“Some of the outings we have been on with Camp Simcha have been a real ray of sunshine … to have something to look forward like that is a big deal. We spend a lot of time in hospital with Leia and sometimes you lose the things in between, because you are just waiting for the next hospital visit, the next appointment, the next procedure but Camp Simcha give you these things in between that provide an escape.
“Over the years their support has been a lifeline.”
If you or someone you know needs Camp Simcha’s support, get in touch – email@example.com or call 020 8202 9297.