Not allowed equipment for disabled child on NHS.............

#1
.......as I am serving overseas. :x :?

Bloody marvelous this is.

My son was born last year and it was quickly diagnosed that he has severe Cerebral Palsy complicated with Microcephaly and a suicidal tendency to refuse to eat.

It has taken us as a family a while to get our heads round it all and to learn to deal with his increasing needs.

Long story short (missing out the near nervous breakdowns etc) because of his hatred of anything passing his lips he has been fed through a tube in his nose since Feb this year. Because this was only a sort term answer, he has now been fitted with a Gastostomy tube directly into his stomach (safer way of feeding the wee bugger)

This has had to be done in the UK and he had it fitted thursday last week.

To ensure the best usage of time whilst here, we have had various appointments with Neuroligists, Physios and Occupational Therapists. All these people have looked at wee chummers and decided that because his CP is rather bad, he needs the following equipment:

1. Special chair to help with posture (circa £1200)
2. Special standing frame again for posture (circa £600)
3. Special pram (circa £1200)
4. Adapted car seat (circa £900)
5. Special bath seat (circa £200)

Great says I, thanks for that, when can I get the stuff?

Sorry says professionals, we wont pay for it you don't live here or in the UK.

I remind them that I am here because this is where the Army has sent me to speak to you as treatment where I am stationed is minimal for disabilities and I pay Tax, NI and CILOCT.

The reply was tough, you are not a resident here so pay for it yourself.

The real kick in the slats was the following comment that if I had been an immigrant placed here temporarily, then my son would be entitled.

To say that I am rather upset would be a tad of an understatement.

It seems my only options now are to fund it myself or try and get funds through SSAFA (which I am about to try)

Any ideas on how I can get the NHS to give my son this kit or am i just doomed to beg for handouts?

I would write to my MP but they would probably steal the money to fund a new set of golf clubs or perhaps getting their windows cleaned.

CW
 
#2
Sorry to hear about your son mate. Actually the NHS got their facts wrong in that wherever you are posted, in barracks you're are on British soil. I would suggest applying for the equipment via your medical center. As a backup check with your family and welfare officers about available funds/next steps. I would be interested to know how you get on.

Regards, Chaz
 
#3
Thanks. I will do that. I tried that approach with the doctors, but the trust will only fund residents in their area.

Banging my head against a brick wall comes to mind!!

I hope the Med Centre will come up trumps, or at a push SSAFA but I am loathed to let the Army/SSAFA fund something that should be funded by the NHS after all their budget is a lot bigger than ours and I would rather the MOD spent the money on MOD things not NHS things (if you get my drift)
 
#4
If Chaz's advice fails, write to the press, every single scum and broad sheet out there as well as every independant TV station.

Do that and I will bet a years wages that the end part of the story will be

"after reviewing Mr Chummers_Warn's story we have found that mistakes were made" etc etc etc
 
#5
Hi, every regiment has a welfare budget. I found this out after paying for the funeral of my daughter who died of cot death. I would suggest doing the applicant for the kit via the medical centre, take copies of all forms and if necessary get your company/commanding officer to put pressure on them.

I agree that the NHS should cover and in turn they probably will as I imagine they supply stores/kit to medical centres.

Anyway the kit and money is there and at the end of the day your kid comes first not the MOD.

In a worse case scenario the British Legion "help" financially on a case-by-case basis.

Best of luck and keep us all up-to-date. Chaz
 
#6
Have you contacted the Army Families Federation or SSAFA for advice? They may be able to give you some information about the channels to go through to get the equipment you need.

Best of luck and all good wishes to you and yours - I hope that you get the equipment and support that you need.
 
#7
I suspect it won't come to that. I don't really want to parade my family issues in the press. Probably because they will no doubt twist things and say shite things that never happened. I hate journalists slightly less than politicians. (And I really fcuking hate politicians, Rt Honorable my arrse)

I am annoyed at the moment. No doubt I will be apoplectic if nothing can be done and I have to start selling my spare organs to get the wee ones stuff.

As an aside and because I have a sick sense of humour, I will be adapting his sitting chair to look like a Davros the Dalek type thing for Halloween. You never know he might win a prize!! Either that or I will be up in front of Social Services!!
 
#8
Already in talks with SSAFA and will speak to med centre on return. The real issue I have is the total lack of help from a system that I pay into every month (not by choice). And them insisting that the military should pay.

My wife (god bless her) is a serving Police Officer in this city (career break till 2010) so she works here. Not even that was enough. Have to be physically living here.

The more I type, the angrier I am getting (must be the whiskey!!)
 
#10
Chaz said:
Sorry to hear about your son mate. Actually the NHS got their facts wrong in that wherever you are posted, in barracks you're are on British soil. I would suggest applying for the equipment via your medical center. As a backup check with your family and welfare officers about available funds/next steps. I would be interested to know how you get on.

Regards, Chaz
The NHS actually didn't get it wrong in this case, though the policy that allows it to do this is crazy. All equipment like this is provided from equipment budgets allocated to the Primary Care Trusts (PCT).

Unfortunately for a PCT to supply equipment the requirement is that the person is registered with a GP in the area of the PCT that funding is being requested from. To put it simply, if you are posted out of the UK you're fecked as no PCT covers these areas. And if you're registered with an Army GP you're also fecked as that doesn't count as NHS healthcare technically, though my view is that it clearly should.

I'm a PCT Commissioning Manager and one of the things I do is to look at equipment requests. Unfortunately the rules that govern such things are not set by us but by the DoH. You couldn't even put a request in as there isn't anyone to put it to, if you see what I mean, as no PCT covers BFG or Cyprus.

This clearly stinks and I'm not for one minute defending it, but that's the way it is. It highlights one of the ways that military and civ healthcare systems don't work well together.

I've often wondered why the GP services in BFG/Cyprus/BATUS and indeed, any UK garrison aren't seen as part of the NHS and link in with a local PCT (would obviously need a standalone equivalent for overseas postings) but with military Docs. This would allow a much more seamless service, allowing access to what, as the original poster quite rightly says, we have all paid into.

Unless you can kick up a big enough stink via the press, the only way you're going to get the NHS to pay currently is to leave the services, return to the UK and register with a NHS GP.
 
#12
No, as the GPs won't take proxy patients as the children already have a GP, it's the MOD one. GPs are very reluctant to take on anyone who doesn't physically reside within their catchment area and they simply wouldn't if the person already has a GP, MOD or civilian.
 
#14
Unfortunately it won't change the system until there's a BIG decision taken somewhere very high up in the DOH and MOD that this is what should happen. Realistically the change would need to be that MOD GP care comes under the remit of the NHS rather than the military (except in operational theatres obviously) and that, thinking aloud, maybe a military PCT would be created to look after this kind of issue, and access NHS funding. I don't see why a variant of this couldn't be done and it would certainly improve the equality of access to healthcare.

Functionally, in terms of health care all MPs can do is raise the issue with the local PCT who will simply say this person does not reside within our area and is registered with a military GP and therefore is not our responsibility, and here's the DOH documentation that tells us that this is the line we take.
 
#15
Aunty Stella said:
surely then the proxy voting constituent has a muhassive stick to batter the MP with.

Voting rights but no care? Taxation without (dependants) representation?

MP is the way forward, followed by press if no joy
You might also like to try Liam Fox MP - he's a GP, a former Civilian Army Medical Officer as well as being the Shadow Secretary of State for Defence, so he may well have a view on this.
 
#16
Absolutely ridiculous.

My advice is to write to either your local MP, or as DozyBint says, write to Liam Fox.

Thats the only hope - its completely stupid that you even have to put up with this kind of rubbish in the first place.

Or, if you have no other option (god forbid) go to the Daily Mail.... :roll:
 
#17
C_W,

I couldn't access this information last night because the links didn't work, but thanks to msr's comment on a TA thread I worked out how to fix it (if the www.army.mod.uk links don't work, add "2" after "www").



Army Families Federation - Health & Additional Needs Specialist: CLICKY

As the Health and Additional Needs Specialist, I spend my time helping army families with problems in these two areas by becoming an expert matter in these fields.

Subjects covered by Health and Additional Needs include NHS Dentists and Doctors, moving treatment between Primary Care Trusts, Mental Health issues, IVF availability, the care of wounded soldiers and their families, moving Statements of Education Needs between areas, adaptations to quarters and ensuring families are kept up to date with changes in both Military and Government legislation which will affect them by means of my pages on the AFF website and the Journal.

As part of my role I also represent Army families at different meetings, in particular the SSAFA Forces and Additional Needs Forum and liaise directly, on behalf of families with the Chain of Command.


Phyllis Gibson
Tel: 0752 749 2930 or
01354 688163
Email:additionalneeds@aff.org.uk




Useful Contacts

* Children's Education Advice Service (CEAS) - Tel: 01980 618244
* Additional Needs and Disability Advisor (ANDA) at SSAFA Forces Help - Tel: 020 7463 9234. Email - jane.b@ssafa.org.uk Website - www.ssafa.org.uk
* Forces Additional Needs and Disability Support Group (FANDSG) - Tel: 020 7463 9234
* Forces Additional Needs Group Newsletter SSAFA FH: Tel: 020 7463 9234
* CarersLine - Tel: 0808 808 7777
* Contact a Family - Tel: 0808 808 3555 Email: helpline@cafamily-org.uk
* Army Welfare Service - www.army.mod.uk/aws
* SCOPE helpline for people with Cerebral Palsy - Tel: 0800 626 216

Additional Needs download: CLICKY
 
#18
Guys, thanks very much for your help and input. Psycobabble, many thanks for the letter of the law it has been useful.

Dosy Bint, thanks for that and being a dosy bint i supose!!!!! (sorry couldnt resist)

I will contact AFF and see what they can do and I think I may have to see if I can get a chat with the person in charge of the NHS trust just to have a go really.

Sorry if the spolling and grammer is wrong, I have had at least 10 Jim Beam & Cokes this evening. Anesthesia at its best!!!

Its no wonder I want to emigrate, pity that I am now screwed because of Chummers Warn junior. Trouble is, he is too cute to get annoyed with.

CW
 
#19
hello there
our son was born in germany a few years ago and also has quad c.p.
his equiptment was funded through med branch jhq.
you shouldn't have to pay for this equiptment yourself and it should be sourced through your physio and ot,( who you should be visiting regularly )recommended by your paediatrican and paid for by med branch.
in our case, any treatment or equiptment that we needed for our son was authorised by our paediatrician first before funding was given and we saw our physio and ot on a weekly basis.
i must admit that it was as much a learning curve for us as it was for them and it took a few phone calls to eventually find out who would pay.

going back to ssafa/british legion funding, they are both fantastic charities and have helped us out greatly with equiptment that the nhs don't provide as your son gets older ( car seats, beds , speech aids , tricycles etc etc)

if you need any more help please pm me as i can advise you of excellent sites that can help you with your sons needs.
 
#20
Hi guys, update as of today.....

The military will fund the kit that the wee one needs.

Thats great and all that but I still feel hard done by that the NHS won't pay for it.

Ah well at least I don't have to go begging or sell a kidney just yet!!

Thanks for all your help and comments

CW
 

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