I talk a lot about Team Sam. Team Sam is headed up by, well Samuel of course, and consists of not only his Dad and I, but all the people who love and care for him – that includes Julia’s House who look after him and his therapists and doctors who oversee his care.
But I must say one massive component in Team Sam, I mean without it we wouldn’t be able to do what we do so easily, is our old faithful NHS.
Hopefully during our lives most of us will only have to rely on the NHS a few times and for only minor things. We, however, are so reliant on the NHS for everything. As a family our biggest financial cost of having Samuel was me having to give up work. When I was pregnant our intention was for me to go back part-time, whether that was for three or four days (we were still negotiating that right up until his arrival). But we soon realised that there was no option and I was to give up work and be his carer.
But wow, Samuel must cost the NHS a pretty penny. Off the top of my head they pay for:
- All his medicines (and don’t forget he has quite a few and I have been reliably informed by my local chemist that they aren’t cheap)
- Ketogenic formula
- Pump equipment and bits and bobs
- Gastrostomy care and related bits and bobs
- Various therapies including hydrotherapy and physiotherapy
- Special buggy
- Special tumble form seat
- Special high chair
- EEGs (recording of electrical activity in the brain)
- Stuff to test Samuel’s blood ketones and glucose – monitor, lancers and the test strips (one box of 10 ketone strips costs £30 & we use two a day)
- Paedetrician, Neurologist, Genetics, Child Development, Community Nurse, Speech and Language Therapist, Dietician
- Treatment and care when admitted as an inpatient (although Samuel has only been admitted once as an emergency patient since coming out of NICU)
I know I’ve forgotten a number of things but I think you get the idea. Anyway, the fantastic NHS pays for all of that. Its all free. We don’t have to have special medical or health insurance. We just get it all because we live in England. I love the NHS. The NHS has helped our little lad defy the odds.
One of Samuel’s best friends Liam lives in America. They don’t have the NHS like us and his Mum and Dad have to worry about medical and health insurance. I think they may not even be covered for Liam starting the Ketogenic Diet which we can’t even imagine happening here. I must admit that I do feel guilty about how lucky we are and it makes me feel all the more grateful.
So to you NHS here is a massive thank you from Samuel, our family and also all the families in this country who benefit like we do.
And so a message to Mr Cameron. The NHS is vital for children like Samuel and without our free medical care, I can’t even imagine what we’d do and the effect it would have on Samuel. Would it mean that we’d have to make certain choices as to which therapies, or worse, which medicines he could have because we, or our insurance company, would be paying and couldn’t afford (or wouldn’t pay out) for certain things? Would we have to look at cheaper alternatives for some of Samuel’s care and treatment? Hands off our NHS Mr Cameron, I’m warning you.