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To think the nhs should fund all Selective dorsal rhizotomy (sdr) surgery

(15 Posts)
PiperIsTerrysChoclateOrange Thu 20-Nov-14 21:24:23

this is something close to my heart, as my friends little girl has cerebral palsy.

They need to raise £60,000 to fund this operation which will hopefully mean that she will walk.

I don't know why the nhs will not fund it.

IABU to say the nhs should approve a lot more funding to get children with CP to walk.

Sn00p4d Thu 20-Nov-14 21:32:29

Not bu at all but where do they draw the line, the nhs has massively limited funding, who decides what is deserving of funding and what isn't? I wouldn't want to be the one deciding!
Although since that vile woman's boob job was nhs funded I Think someone somewhere has their priorities all wrong.

Best of luck for your friends daughter x

AnyoneforTurps Thu 20-Nov-14 22:39:13

They may be able to get it funded. It's being trialled in a few hospitals at the moment - patients from anywhere in the UK can be referred to those hospitals - link here

StillSquirrelling Thu 20-Nov-14 22:58:27

Seems crazy that they won't fund someone to enable them to walk but they spend millions each year on illness/diseases that are self inflicted through either smoking, drinking or just plain gluttony...

PiperIsTerrysChoclateOrange Thu 20-Nov-14 23:03:09

Parents have been down that route and even appealed the decision.

colleysmill Thu 20-Nov-14 23:25:53

Is the refusal to fund purely financial op? I know many centres in the UK have a fairly strict clinical assessment for sdr but the funding can be really variable even if the child has been assessed as suitable for the procedure.

SusanIvanova Fri 21-Nov-14 01:27:53

Perhaps we shouldn't treat soldiers either? They went into combat voluntarily, didn't they Squirelling.

Trickydecision Fri 21-Nov-14 07:46:04

Not a sensible comparison, SusanIvanova. Soldiers acquire their injuries in the interests of defending their country. Boozing, greedy, smokers benefit no one.

whereonthestair Fri 21-Nov-14 08:09:19

No. I really don't think they should fund it all, for all children with cp. As many many children aren't in fact suitable. I have spent 18 months going through the various hoops to get funding and I am so glad that the hoops are there as sdr is not a magic bullet for any children, let alone those whose cp is not suitable. A year or two ago there was a postcode lottery, now with the new guidelines that has largely gone as the key centres decide on which children are suitable.

I get that it is hard, I deeply deeply understand what your friends are going through as I have walked in their shoes with a 4 year old who cannot walk due to cp. I really wish that the world was different for my son, and for your friends little girl. But unfortunately it isn't.

I would fight with every breath in my body to get all children with cp enough appropriate treatment, enough physio, enough support from orthotics and wheelchair services, proper statements etc, but not sdr. It's life changing serious operation, and for some children it is not appropriate, whatever they say in St Louis. Our NHS desperately needs more funding, and more for children with cp but sdr, not necessarily.

I wish your friends all the best, but sdr is controversial for a reason.

SusanIvanova Fri 21-Nov-14 08:28:04

Yes because dehumanising a whole section of society for their drinking, smoking and greedy ways is both helpful and fair. hmm Perhaps we should just wheel all of those perceived to have caused their health issues out into the street. The fact that the child in this situation can't receive surgery on the NHS is unfair, that does not make it the fault of others who are sick. Perhaps it is the fault of the decision makers who would rather spend money on a top down reorganisation than treatment options.

Oh and just as a side note, exactly when was Iraq a threat to our country? Was it before or after the WMDs were revealed to be fictional?

PiperIsTerrysChoclateOrange Fri 21-Nov-14 09:20:48

She is suitable and has had all the test.

Footsteps centres are amazing, she is coming on lovely with the programme.

I just wish I could win the lottery in order to pay for it for them.

WooWooOwl Fri 21-Nov-14 09:27:37

I don't know enough about this operation to be able to make any relevant comment, but the sad truth is that there's loads the NHS could be funding for equally deserving cases, but it doesn't because it can't.

It's across the board. If there were better funding people wouldn't have to go through half the stress they do even when they do get the appropriate treatment, let alone the operations, treatments, medications and occupational therapy services that aren't funded.

Yes this child should get the operation she needs, along with everything else like therapy that she probably needs too, but there are countless other children and adults (who are equally as important) who should get things that are currently denied to them as well.

leccybill Sat 04-Nov-17 22:28:41

Hello - sorry to bring up an old(ish) thread but just wanted to pass on a warning.
You may know of some families who have fundraised to pay for SDR in America and further treatment and physio back at home. It is common (required even?) to use a charitable trust/foundation to handle the funds raised and distribute them as and when.
One of those trusts is the Darren Wright Foundation. It has come to light that many families using this foundation have had trouble with invoices not being paid, cheques bouncing, deadlines not being met, communication being ignored, requests to move their own money away being ignored. To date, the foundation trustees refuse to acknowledge any problems, and refuse to give new timescales for money they hold to be released, and have deleted all complaints or requests for info from their social media pages and/or blocked families.
The thought of any further families suffering at the hands of this foundation is awful. Just wanted to warn people to steer clear and spread the word.
(The police, Action Fraud and the Charities Commission seem uninterested sadly). Thanks x

Aeroflotgirl Sat 04-Nov-17 22:36:27

I agree with you op, from what I have heard, it's life changing, will improve the quality of life for the child immensly, enabling them to be more productive in the furure when it comes to working and relying less on benefits.

leccybill Tue 07-Nov-17 19:09:52

Just a little bump to read my post about the charity who are about to ruin Christmas for a lot of families with disabled children. Their conduct has been disgusting.

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