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No NHS money for DS' equipment.

(26 Posts)
awfulomission Tue 04-Nov-14 15:08:43

Consultant told us this morning that there is no money in the budget for aiding DS' hearing. He needs a specific type of aid for which the budget is being 'squeezed' (consultant's words).

I feel so angry and upset for him. I feel sad that he will never, unless we really, really fight for it, be given a chance to hear like other DCs. The aids might not work, sure. But we could have tried them and known for ourselves. He has the 'wrong' type of deafness, that's all.

I just wanted a rant really. We've slipped through the net AGAIN and where I will find the energy to come back this time I have no idea. I will fight this but I just don't know how at the moment.

Silly me for thinking that 'Every Child Mattered'. sad

AttilaTheMeerkat Tue 04-Nov-14 15:22:36

Off the top of my head...

I would contact your MP when you feel able to do so, after all he represents you as one of his/her constituents and let this person know of the situation.

Could the National Deaf Childrens Society assist at all?.

blanklook Tue 04-Nov-14 15:33:54

How much are they?

Ineedmorepatience Tue 04-Nov-14 15:37:35

What about a charity?

I was thinking of Newlife but dont know if they would be able to help, worth asking though!
Or Caudwell children.

awfulomission Tue 04-Nov-14 15:42:20

I hadn't thought of the MP - that's an excellent idea, thank you.

I've found the NDCS are helpful to a point; they advised me to use the Equalities Act when requesting equipment for example. Their knowledge is not specific enough to individual Health Authorities though. All of the advice out there says that this aid is completely available on the NHS. Because of budgets tightening this is no longer the case (according to the consultant).

It doesn't work for some children which is why it is not universally provided. Also, the manufacturer has ceased to make the wired model that was used for younger children in favour of the wireless option. This is much more easily lost though and the HA had to provide too much replacement equipment. Hence no more funding.

There are other options but their numbers are reserved for children in more need of it than DS. A blind child, for example, who has exactly the same type of hearing loss as DS but sight loss too. Of course he should have the aid over DS. It's just sad they have to make that choice.

'Twas ever thus I guess. I'm just sore this afternoon over it all.

uggerthebugger Tue 04-Nov-14 15:43:57

awful, this sounds like a job for the MNSN team... brew

There's a good chance that you are being given the run-around - the consultant might not be the budget holder, for one thing. Is the consultant at the ENT department of your local hospital, or is it a more specialised regional clinic?

Also, what type of hearing loss is it, and what type of hearing aid or implant are you looking to get?

thanks

awfulomission Tue 04-Nov-14 15:45:31

AFAIK it's not the initial cost that's the issue - more the upkeep of the aids. New batteries, moulds, tuning all costs if you go privately. Again AFAIK you buy into something that is a life long, open ended commitment cost wise.

I will look into other options with charities.

Thank you all. It's such a small thing compared to what many on the SN boards cope with daily. I'm so tired though and was so hopeful for this appointment.

awfulomission Tue 04-Nov-14 15:48:26

Hi ugger . He's profoundly deaf in one ear, with dyspraxia and poss HFA.

We want him to try a CROS Aid to see if it will help with his attention and social skills.

Thank you for the brew - I'm off to collect them now so it will be a wine later I hope!

blanklook Tue 04-Nov-14 18:33:48

awfulomission "AFAIK it's not the initial cost that's the issue - more the upkeep of the aids. New batteries, moulds, tuning all costs if you go privately. Again AFAIK you buy into something that is a life long, open ended commitment cost wise. "

As far as i can see, you don't know if a Cros aid will be the item he needs. Why not approach the manufacturer and ask for a trial? Then if it does work, cost it up and go to the NHS trust with a proper financial proposition. For example, ask them to pay for the ongoing costs, just like they would for any other hearing aid then fund the rest separately.

It's so difficult to get anything these days, maybe thinking outside the box could help.

I hope you find a good solution.

awfulomission Tue 04-Nov-14 19:07:57

Thank you blanklook .

Yes, DH and I were talking and I think that this, or something similar, is one of our next steps. A sort of half way house.

We can just about afford to pay something at the moment. I'm in very low paid work and DH's, while very well paid, is very insecure so that's why we're nervous about committing to anything.

We had friends over after school which was v. nice and I ranted for a while over a cuppa.

I'm no longer feeling it's the end of the road which is good. smile

stillstandingatthebusstop Tue 04-Nov-14 19:19:21

I wonder if this might be useful.

I have a diabetic child and I know some parents have transferred their children to a different hospital that seems to have a bigger budget. My DS is under the local hospital and has an insulin pump but not a continuous glucose monitor. Some families have moved their children's care to the nearest city children's hospital because they seem to get more funding and the children get CGM's as well.

I haven't moved DS as he is 16yrs and doing reasonably well and any improvements in blood glucose control would need more effort from him: He's a 16yr old lad, he's not really into effort. grin

Might that be worth a try??

awfulomission Tue 04-Nov-14 19:59:39

We are members of a local deaf children's group and I am going to ask there if anyone has done anything similar still .

I know that one family have, on request, been transferred to St Thomas's but their son has bilateral implants so he is a slightly different case. It's all worth finding out about though.

Thank you. flowers

uggerthebugger Tue 04-Nov-14 20:12:18

I've not found out anything useful about funding for unilateral aids, sorry. blanklook and stillstanding's ideas sound good though.

The consultant's argument is a bit odd if it's about upkeep rather than upfront cost. If the alternative is giving DS a standard behind-the-ear hearing aid, then the cost of batteries, mould impressions, programming etc amount to the same cost as that for a CROS. The CROS aids aren't much more expensive to purchase than a standard aid either - and for paediatrics, you'd expect the clinic to have procured replacement equipment as part of a partnering support contract.

The truly insane thing about this budget thing is that it's so uneven. Clinical commissioning groups are hosing money at bilateral cochlear implantation. There is a net benefit to having two cochlear implants rather than one, but it's argualy marginal - and the surgery, equipment and rehab for one CI costs the NHS a mid-five-figure sum each time. The difference with this case compared to yours is that there's a set of guidelines from NICE spelling out the benefits. I couldn't find anything equivalent for CROS.

One very left-field idea might be to pursue an assessment for a bone-anchored hearing aid (BAHA). The BAHA itself might be an extreme option... but some paediatric audiologists will get the child to trial a CROS aid as part of the BAHA assessment, to see if that could work as an alternative.

awfulomission Tue 04-Nov-14 21:59:52

ugger that is such useful information, thank you. You sound a real expert. Is this information available to the public? How can we get hold of it?

The consultant was really honest about the funding (or lack of). She explained that if his case were a straightforward bilateral loss then she would be giving him aids in a shot. Normal behind the ear aids are not suitable for his type of loss as it's too extreme in his deaf ear. CROS aids work beautifully for some children but many others find them ineffective or uncomfortable so they are not uniformly used.

Ironically, were he not profoundly deaf in his left ear he could have a normal amplifying hearing aid. So he has less hearing than lots of children who use hearing aids.

Soft band aids, another option, are reserved for children with no ear canals at all, another funding decision made by managers she explained. And of course those children should have priority without exception; it just means that we slip the net on those too.

I think the issue is that they have to find somewhere in the system to cut and this is it.

I feel the BAHA is really extreme at the moment but if we're no further in 6 months time I will pursue this course with the consultant.

uggerthebugger Wed 05-Nov-14 15:18:27

I've got 2 profoundly deaf DCs (bilateral, started with HAs, now with CIs), so I know my way around bits of audiology - unfortunately, not the bits you need to get your situation sorted sad... people with unilateral losses definitely get the worst end of the stick.

What I know has basically been picked up by having my kids as users of services - chatting to audiologists and other folk working in and around cochlear implant clinics. There's not a lot of hard data out there, and different bits of the NHS disclose data in different ways.

What you need is someone who knows NHS financial plumbing and how it varies from area to area.... Anyone? reaches for the batsignal

awfulomission Wed 05-Nov-14 15:37:33

My GP is excellent; we had a phone consultation today and I'm going in to see her next week to talk things through. She was really sympathetic and, while she said she didn't hold out a lot of hope for it, she is willing to share what she knows about how to ask for stuff!

I've been in an impossible situation with DS before; we wanted him to be held back a year after reception as, as a late summer born with partial hearing and dyspraxia and just in himself, he wasn't ready to start Y1. It took a change of school but we were successful eventually and we have one much happier boy now. Everyone said we couldn't do it but after a long and complicated fight we did.

I do hope we will get there in the end.

We do spend a LOT of time hanging/waiting around clinics etc, don't we! All the best for your DCs ugger .

MeirAiaNeoAlibi Wed 05-Nov-14 20:24:27

Sounds like your dc's consultant is irritated by this and might well be happy to request a Great ormond street second opinion to rule out possible auditory processing disorder.

If this was present, you could more easily leapfrog the ban on 'CROS for unilateral deafness', because you're then asking for a CROS for 'unilateral deafness plus APD'. Which they're unlikely to have a policy for (yet).

The GP could help with an exceptional case referral so the case gets discussed by a local NHS panel (before you despair, they're not as bad as LA SEN panels)

MeirAiaNeoAlibi Wed 05-Nov-14 20:25:16

And yy to
One very left-field idea might be to pursue an assessment for a bone-anchored hearing aid (BAHA). The BAHA itself might be an extreme option... but some paediatric audiologists will get the child to trial a CROS aid as part of the BAHA assessment, to see if that could work as an alternative.

uggerthebugger Wed 05-Nov-14 21:53:01

Meir thanks

<turns the batsignal off>

Nigel1 Fri 07-Nov-14 20:49:11

Speak to your local PatientWatch - ask for their advice as to how to move forward
Get the contact details for your local Clinical Commissioning Group and appeal directly to them.
Be prepared to ask for a second opinion

awfulomission Fri 07-Nov-14 22:05:41

Thank you so much for getting back! It's been a bonkers couple of days at work and I've rather avoiding this issue a bit until I can give it some head space.

The BAHA path seems like an option now, certainly. I have made an appointment to see our GP properly to discuss and will certainly find out about the PatientWatch locally. The GP seems really switched on and willing to help and seemed genuinely taken aback by our situation.

I do know someone locally who took the GOSH option with her DS and who was pleased with the results eventually.

Thank again all, once more. flowers

geogteach Fri 07-Nov-14 22:28:20

I would second the exceptional case referral. We had to take this route to get funding for DS bilateral cochlear implants. He has a deteriorating loss and didn't meet the criteria because his speech was too good. It was his second CI assessment and the team referred because although his hearing had dropped dramatically and they were sure he would benefit he was never going to meet the criteria. Once he was referred we had no involvement till the result came through.
Also have you tried The Ear Foundation? Their assessments are very thorough and should either reinforce the route you are trying to follow or suggest an alternative one.

awfulomission Fri 07-Nov-14 22:30:50

Ah, I've never heard of it! Will google now, thank you.

awfulomission Fri 14-Nov-14 13:48:00

An update - I've taken advice from the NDCS audiologist now, who was brilliant.

I'm meeting our SENCO next week to (with luck) start the statement and our GP's surgery has re referred us to Great Ormond Street for the audiology clinic there. The NDCS audiologist explained that if they say no there, it'll be for a good reason, not just the crapness of 'we've got no money/he's got one good ear so that's enough'.

So it's not the end of the road. Thank you for the brew s and the support.

awfulomission Wed 17-Dec-14 13:13:42

An update for you - we had our second appointment with a different consultant from the same team today (acting as a second opinion really) and she is giving our DS the equipment he needs. She did so without question or raising any issues and, in as professional a way as she could, wondered what the problem had been for her colleague in consenting to it.

Very odd. And just goes to show why a second opinion can make all the difference.

Thanks again all. flowers

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