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Paying for equipment ???

(11 Posts)
piglettsmummy Tue 30-Oct-12 11:50:19

To understand up to date you'd probably have to read my previous posts. My daughter is in a vent during sleep. Somehow the hospital don't seem to think she needs a battery for it which would enable us to take it out and let her use it if aw falls asleep during the day (not at home) basically ATM she sleeps on oxygen when out and this makes her worse! Just been told although I was first told I w get a battery for her vent now they won't et me one! I've looked at it and it's £300!!!!! I am a
Single mum on benefits!!! Wth!! We had a bad episode a few days go which shows she must be on a vent at all sleep periods but they won't listen! Anyone had to deal with this before would I get anywhere if I attempted to claim the moment back after I had bought it?

starfishmummy Tue 30-Oct-12 12:05:39

This is awful. I have no experience of getting money for this sort of thing but I think I would be contacting any health professionals who see her at home - community nurses, GP even physios and occupational therapists. Often, even if they can't help, they will know of sources of funding. Mybe your SW (iif you have one).

As a long shot try contacting the manufacturer and seeing if they can do a big discount or even lend you one long term.

Maybe write to you councillor, MP and even the local press (if you don't mind publicity)

WilsonFrickett Tue 30-Oct-12 12:33:22

Gosh that's awful. £300! I would also start with HCP's. Are there any local charities that you could approach - there's a Cash for Kids fund here (Edinburgh) that springs to mind for this sort of thing. Are you going to SureStart? They might be able to point you in the right direction?

Nigel1 Tue 30-Oct-12 17:06:31

1. Why wont the NHS supply one. Get it in writing.
2. If you are to take her out and include her in the world then she has to be able to go outside the front door. She needs a battery to do that. Ask the PCT for the medical evidence to show that his would be a medically unsafe procedure.
3. That should flush out whether this is medically lead or cash lead. If cash lead write to the line manager as a formal complaint or failing that the head of the PCT. Remember they work for you!
4. If medical clarify why not. I think it is unlikely that will be the case.
5. Ask to see the policy that provides for this.

Sounds like a bunch of bean counters overruling medical logic. You can also say that by their actions they are adding to your cost of living and isolating you more and adding the to the SSD costs as you will need additional support.

Hope this helps.

Tootsandblanket Tue 30-Oct-12 17:54:01

I'm with Nigel1, your daughter needs the vent, therefore the PCT need to supply one and all necessary equipment to go with it.
I've had slightly similar issues recently related to vent funding. We came home with a vent and a 2 wk supply of disposables .... As we got close to the end of the 2 wk supply no one - PCT, CCN or hospital would be forthcoming about where the next lot would be coming from.... No one could work out who would be paying for it... It was really stressing me out. On the final day the Continuing care nursing team came though with some supplies. It was a lot of extra stress that I didn't need as well as coping with a child on a vent.
Is get on the phone first thing tomorrow morning and speak to your PCT, your respiratory consultant( is that who you got the vent from?) should back you up on this. Good luck.

SallyBear Tue 30-Oct-12 18:06:08

We had a similar issue with our PCT regarding my DD's BAHA (bone anchored hearing aid). The surgery and the aid costs £5k and the 5 yr maintenance contract is about £2k. It's crucial for my dd as she has bilateral Microtia which means her ears didn't form. We had to apply for funding. We got her paediatrician, audiologist and ENT surgeon to write supporting letters to help our application. We got the funding.
It is all about bean counters sadly. sad

bigbluebus Tue 30-Oct-12 18:09:27

Sounds like a lot of 'buck passing' to me. Do you have a Community Childrens Nurse? Any equipment required for use in the community is the responsibility of the PCT not the hospital. Does your DC have a Continuing Healthcare package? If so, the the equipment should be funded under that by the PCT. If not then the CCNs should help you source charitable funding for it if they will not provide it themselves. Depending on your DCs condition (sorry I'm not familiar with your other threads) then possibly the charity Newlife will be able to help you. They will only help with equipment that the NHS will not supply, but will help you fight the NHS if they feel that it shoudl be supplied by them. (sorry I can't link as am away from home and signal strenght is low!)

piglettsmummy Tue 30-Oct-12 18:25:45

This is guna sound really dumb but I have no idea way wat a pct is or a healthcare package !! The care we get is pretty sh*t so of I just explain all that I know that might help?

We live in Mansfield uk and have a emerald paed consultant who sees us for rental review only I also have a complex needs nurse. I don't speak to her and se doesn't visit me unless I have an issue that she can deal with. I have a Saturation monitor which comes from the other hospital she is under ( Sheffield children's) but the disposable probes for it are via prescription which my complex needs nurse sorts out.

The second hospital we are under we deal with a respiratory nurse who gave me the saturation monitor but doesn't deal with the probes, just any problems with the machine. We have a non invasive ventilation nurse he deals with all issues we have with ventilation including vent problems and if between sociable hours any respiratory problems (I.e. low o2 levels) . Then we have our respiratory consultant and he does well not much jut a review that's all maybe he odd test here and there. We don't have any plan really I don't actual know what's happening ATM all. Know is when I put her to bed I hook her up to her vent and monitor deal with any problems at night ( I can take her up to or local children's wars whenever I feel necessary) and when we're out she has her o2 and Sats monitor again and I she stops breathin and doesn't come round I can perform respiratory resuscitation and full CPR If needed?

I'm guessing somewhere along this is my pct?? Help I'm confused now sad

piglettsmummy Tue 30-Oct-12 18:26:46

Forgot to mention the equipment is not provided by my local hospital it's provided by Sheffield children's that includes the vent and they are the ones who refuse a battery x

bigbluebus Tue 30-Oct-12 19:52:00

Hospitals are run by NHS Hospital Trusts. Health services provided to people living in their community are funded by Primary Care Trusts (or PCT's). So for example, your GP or NHS dentist is provided under contract from your local PCT. ANy other health services such as community physiotherapy, speech therapy etc are all paid for by the PCT and not the hospital.
The PCT are responsible for funding any medical care that your child needs in the home - they may well be paying the hospital in Sheffield for the equipment that you have.
Do you know who your Complex needs Nurse works for? If they are local to you then they probably work for the PCT or Community Trust, so I would suggest contacting them and telling them of the difficulties you are experiencing when out and about. Ask them who is responsible for funding a battery, and don't take "I don't know for an answer". It is just not acceptable for them to expect you to stay in because you don't have a battery for the vent.
Failing that then have a look at the charity site I suggested previously (Newlife) as they may be able to help or point you in the direction of another charity who can.

piglettsmummy Tue 30-Oct-12 21:03:16

Thankyou big !!! I feel a bit daft now not knowing pct meant primary care trust :/

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