Families with seriously ill children are at breaking point

THE RAPIDLY escalating cost of living has placed huge strains on many. But for families with seriously ill children, the financial pressures on top of everything else they are enduring are almost too much to bear. There’s no economising when it comes to running life-saving machinery, keeping a home warm 24/7, getting to and from hospital appointments or buying specialist equipment. And often, local authority grants and benefits only partially cover the outlay.

For many families Camp Simcha assists, the costs of maintaining Jewish life — Jewish schooling, buying kosher and making Yomtov — only adds to the pressures. And in numerous cases, at least one parent has to give up work, and therefore income, to become a full-time carer.

Offering practical, therapeutic and emotional support, Camp Simcha exists to stop families reaching crisis point. But the current economic situation has led to more families turning to us. Many of those we already supported now need more from us than they did.

For example, people who only used our hospital transport for emergencies now want to use the service more regularly. You cannot use public transport when you have a child with a severely compromised immune system and the costs of driving, parking and congestion charge have become too onerous for them to shoulder.

We have also seen a big increase in demand for respite care from parents desperately in need of a break, or just a precious night’s sleep.

Families are having to cope with the fact that statutory services and other organisations that have been supporting them are so stretched, they cannot access all the assistance they need. Some charities have even shut down specific services.

Unsurprisingly, we are also encountering greater demand for counselling and therapeutic support. For some of our families already living with serious illness, lockdown took its toll on mental wellbeing.

We have seen this in particular with some of the young people we support. They are turning to our counselling, art therapies and animal-assisted therapies to try to address the emotional effects of trauma and stress.

With such financial and emotional burdens on parents, there is a far greater necessity for us to not just fill in the gaps but to bring some light into families’ lives at the darkest of times.

This past year, demand for our residential retreats, outings, art groups and after-school sibling groups has been huge. Last summer, we had a record number of family members joining our summer events.

As a holiday is not viable for many of the families we help, these periods of respite and joy are a lifeline for them — as is the sense of community Camp Simcha provides. Having been starved of social contact and peer support, they are desperate to be with others who understand their daily struggles.

While calls on our services have increased, inflation has driven up the cost of providing them. Services such as hospital transport, “crisis meals” and therapies are now around 30 per cent more expensive.

Respite care costs are increasing as the demand is greater than the workforce at the moment. This impacts us both in the cost of the day-to-day respite we provide to families, as well as the multiple carers we use on residential retreats.

It now costs Camp Simcha £2.8 million to provide all our services to more than 1,400 family members annually. We receive no statutory funding and this is why it is crucial that our match funding campaign this coming Sunday and Monday is a success.

Camp Simcha cannot operate waiting lists because when families are in crisis, their need for our support is immediate. Critically, so far we have been able to say “yes” to every family in the UK who needs our help.

That has to continue, now more than ever.