Following BBC Panorama’s ‘Fighting for My Child’ documentary on Monday 16th July. WellChild Parent Ambassador Rick shares his thoughts (and frustrations) with the lack of support available to families caring for a child with serious health needs.
BBC Panorama’s ‘Fighting for My Child’ on Monday highlighted the £1.5 billion pound shortfall in funds to provide appropriate support for children with disabilities.
My son, Isaac is one of the growing numbers of children who require support. He’s seven and has quadriplegic cerebral palsy, a tracheostomy to help him breathe and is fed through a gastrostomy into his stomach. Isaac needs 24 hour care and despite his killer smile and cheeky personality he is wholly reliant on other people to meet his every physical need.
Isaac did not ask to be how he is; he suffered a brain bleed early in his development and was born with a lifetime condition. A lifelong condition that needs a lifetime commitment of support.
As Isaac’s parents, both my wife and I are tired of fighting for support. Actually, we’re frustrated, knackered, worn out, physically and emotionally struggling and disillusioned with fighting for support. ‘Fighting’ is a polarising word; for us as parents it means passionately trying to get the needs met for a son whose needs we can’t independently meet no matter how we try. For the services that are financially cut, time poor and facing increasing demand ‘fighting’ means them protecting resources. It is, by nature, a collision course between the needs led perspective of a family and the resource led response from services. It can’t consistently end well, and it doesn’t.
In seven years there’s barely been a break in the constant battles.
Rick, Dad to Isaac (7yrs)
In seven years there’s barely been a break in the constant battles, be it for equipment Isaac needs, a functional Education Health and Care Plan, battling for joined up provision of healthcare to list only a few. As a parent you begin to expect barriers, which is a bad place to start from.
What I would like is for services to see us as a family that is saving them resources, not diminishing them. Support us in providing Isaac’s care – look for opportunities to do so. We’ll do (and we do) our bit – we both work full time, we run a household with 2 other children in it, we pay tax, we try. A system that would prop up that commitment rather than stretch it to breaking is needed.
Isaac doesn’t qualify for our local continuing care pathway, we tried to question it but it was going to take another fight (a request from a commissioner to meet us to explain…..thanks, but we’re a bit busy, can’t imagine why). Some people reading that sentence will read it as adversarial; it is not, it is just exasperation. If ‘the system’ is so far away from being able to empathise with us then we’ll get on with surviving like we always do, we can’t expend energy and time on the discourse of a challenge. I’m writing this at 9.45pm, Isaac’s just gone to bed and there’s every chance we will be up several times suctioning him during the night before going to work tomorrow….I haven’t got the resilience to deal with a commissioning framework and complaints process at this time of night. I’ll take my silence as being exhaustion, agencies take it as ‘not had a complaint’ – must be fine then.
The necessity for the Disabled Children’s Partnership to have to shine the light on families like mine is something we wish was not necessary, but until services start to be better resourced and supportive and there’s less fights needed then it is not just necessary; it is our strongest voice.
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