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Funding request denied. Who can help?

(10 Posts)
Lynz1298 Fri 03-Jul-15 07:41:28

My Grandson, who is 21 months old, has a rare syndrome and is substantially delayed in his development. One of the major factors is that he is still exclusively breastfed as he also has feeding problems related to his development. His parents are trying to get help with this from a service which is not routinely provided through the NHS but needs an individual funding request (IFR) from his CCG. This has been denied and he was been referred to GOSH who have not helped. He is now being referred to CAMHS. They feel they are knocking their heads against a brick wall trying to get care from the NHS for their son as all they appear to want to do is give him a feeding tube. They made a freedom of information request which has not helped and they don't know who they can go to for help. Does anyone have any suggestions please?

Nelliemoser Fri 03-Jul-15 08:11:35

Have you tried some of these for support?

I just picked some of these up by googling rare diseases. I had heard about these organisations on the radio.

Luckygirl Fri 03-Jul-15 08:26:20

CAMHS for a 21 month old!

Are they all recommending a feeding tube, GOSH included? It may simply be that this is what is necessary.

I don't see the breast-feeding as a problem, in spite of his age - he is getting nourishment, that is what is important.

I am sorry that you have this problem in your family.

ninathenana Fri 03-Jul-15 08:45:34

CAMHS does seem a strange one.
I do empathise as DGS has had heart surgery and had feeding problems for the first two years. May I ask, what the funding is actually to cover?
I wish your DGS well and good luck to you all.

Nelliemoser Fri 03-Jul-15 09:12:06

I could not understand CAMHS at all.

What is your GS's syndrome? If he can breast feed, he can clearly swallow liquids and suck ok.

What measures have been looked at already by his Doctors? Is it solids he cannot cope with?
Have the childs parents had a really good explanation from the medics about his condition, and how it may progress?

vampirequeen Fri 03-Jul-15 09:14:03

Are they suggesting he is scared of switching to real food? Is that why they've suggest CAMHS?

Nelliemoser Fri 03-Jul-15 09:17:01

Just another thought. That little boy is very young, could the medics just be waiting to see how he progresses until he is a bit older and stronger to undergo any surgery that might be needed?

Lynz1298 Fri 03-Jul-15 10:02:12

Many thanks for your responses.
Ninathenana, the funding is for av psychology service that specialises in children's feeding disorderss and has a 100% success rate. The feeding tube is an easier, but more expensive option and puts him at increased risk of infection. He cannot tolerate a bottle or any solids but has recently started to lick yoghurt. His gag reflex has not developed in accordance with his age.
Nelliemoser - yes that is exactly what they have done but if he's not getting proper nutrition by the time he is 2 then a feeding tube is necessary. All very frustrating especially when there is some hope for him but no funding to the right service. Many thanks for the links, I will follow these up

elena Fri 03-Jul-15 12:47:34

CAMHS may be very appropriate - I know of services which see babies and toddlers under five, alongside their parents, usually because of attachment issues, but feeding issues may have a psychological element, too, perhaps because of underlying physical factors.

If the service on offer is like this, then it could be right for your gs.

Hope it works out - how worrying.

Grannyknot Fri 03-Jul-15 13:10:02

Poor little thing. How wonderful that he can breastfeed.

I don't know the answer to this, but is there an option to apply for part-funding for the psychological services option?

It seems bonkers that he is being offered a more expensive treatment option, if the preferred one that is being rejected is cheaper.

I hope help is found.