OT, Cost of special needs cot bed and feeling really uncomfortable

[soverytiredofthis]

Just had OT round with trainee and representative of company regarding a special needs cot bed.

DD is currently in a special cot bed but it is temporary as she will eventually climb out of this one so we are looking for a permanent solution. Roll on this meeting today.

When bed was put together I was looking at opening mechanism and was not satisfied that it is suitable for us. OT then starts explaining that this bed is much cheaper and so they will provide cctv camera for us as they can afford to with this bed.

The bed we were after is more expensive. I felt like I was doing the NHS out of money by asking for a different bed than one they were showing. This was a whole conversation as well about the cost of the bed.

Is this normal as I felt really uncomfortable...

I am sure that you were asking for the more expensive bed with your Dd's safety in mind.

A cctv camera is no good to you when you are asleep. You need your Dd to be safe, I think you might have to fight this one sovery

Good luck

We had to pay for our own bed for Bee - here, they are considered a convenience item

Cost should not be your problem. If the opening mechanism is not safe or suitable, or there are any other reasons that the cot bed is inappropriate, then cost is irrelevant. Do they expect you to remain awake staring at the CCTV system for the duration of the night while your DC is asleep, as the unsuitability of the mechanism equates to it not being safe (and the OT as much as admitted that when she offered the CCTV system as an additional purchase)?

Suffocation, entrapment and escape are the 3 most important things to consider - not cost. You are not trying to get something more expensive because it is prettier or more "chic", you are trying to get it because it is safer and more suitable.

Don't let the OT pressure you - it is not her money, either. I have a number of resources to help with justification of more costly cot beds - Bee's, here in Canada, cost $13,000. After doing our own fundraising, getting small donations from several local charities (we discovered it was far easier to get several small donations than one big one) and going into debt to finish the cost, we are VERY glad to have made the purchase. This is the bed we got for Bee It is a lovely piece of furniture (and actually less expensive than it's compapable competitor). She had a hospital bed prior to this, and fell out of it/got caught in it so many times it was scary. This new one will be suitable for her for many years.

She has made you feel uneasy, and it is to her benefit... but you are doing what is best for your child, and doing a fine job of it, too... It is like being told that you have to cross the English Channel in a canoe, because a large motorboat is too expensive... but hey will be happy to give you a blow-up life vest, too

sorry to drip feed ineedmorepatience but cctv is because DD has night-time seizures as well as daytime. But we need bed with high sides as she can climb out of bed at night and we need to monitor her.

We also need high sided bed as she can climb during a seizure! Fun times ahead :)

I mean :(

Sorry I thought they were suggesting a cheaper bed and cctv for when she escapes.

Of course she needs the correct bed. My dniece broke her arm getting it caught in her bed during a siezure

FFS. Penny wise, pound foolish.

Every extra A&E attendance the unsuitable bed causes will cost £200 at least, probably more because she's complex and they'll always end up doing xrays and getting the paediatricians down.

Plus another £500/night for any admission, another £100 for each extra out-patient appointment (at fracture clinic for example...)

Go and moan to the GP, they'll sympathise even if they can't fix it

You shouldn't have to do this but....

Could you put together a written submission for the more expensive item, detailing all of the cost benefits...which includes the costs of pressure care, hospital admission, paediatric reviews etc etc

Have you had a representative from the company with the more suitable bed come and 'assess' your needs. Mosts companies will be happy to bring the equipment to your home. Invite the OT back on the day. Emphasise how cost is not the issue, safety is.

Unfortunately, your best chance of getting what you need is, to build the case for the OT. So, while the initial outlay may be more, the long term costs to NHS overall will be less (at least in the case that you build).

Or write asking for a copy of their comprehensive risk assessment, and the cost-benefit analysis of their decision. Ask who is the named senior manager taking responsibility for the decision to give her the less safe bed.

Cc to the Trust's chief executive confirming that should she suffer harm through having the wrong bed you will be suing for lifetime care costs.

sovery - they tried to fob us off with a cheaper DFG than we asked for. I pointed out their suggestion was unsafe.

Agree with Mareeya - point out that if she is damaged as a result of an unsafe bed you will hold them responsible at both a personal and corporate level (they really don't like being told you will hold them personally responsible - I use that all the time now)

Which bed are you after sovery? I have seen some very expensive beds in the houses of some of the disabled children that I know - all funded through Social Care/NHS.

The cctv is needed as well as the bed - it is not a case of "you can have the cctv if you have the cheaper bed" - you need both, regardless of the cost of the bed.

I wouldn't like to begin to add up how much my DD has cost the NHS/Social Care in equipment and care over the last 18 years - the fact is, I really don't care. We ask for what she needs to keep her safe and alive and us fit and healthy and free from injury.

Feel no guilt, the NHS is there to help anyone who needs it and they need to provide safe and appropriate equipment for your DD. But you will have to prove why the bed they are offering is wholly unsuitable and dangerous to get anywhere.

Thanks everyone with the suggestions.

When I spoke to my husband about this bed he was not accepting of it at all.
www.kinderkey.co.uk/product/101/bearhugzzz_spacesaver

I said that he should speak with OT and deal with some of the pressure she is giving me.

I think when I next speak with DD's Keyworker I will ask that she attend the next meeting with OT and rep from co re bed. The only problem is OT keeps saying that the other rep from the more reasonable bed is always unavailable and cannot get an appointment sorted! :(

This is the bed we would like www.bakare.co.uk/solutions/special-needs-beds/tom-special-needs-cot-bed/

We don't need the hydraulics we just need a high sided bed that we can get into and lock quickly (so she cant get out). We also need her not to be able to climb onto any bars so preferably Perspex sides.

OT knows this, I have told her several million times and she gave me list of approved providers and these beds were on it. I telephoned and told her I would like this bed and thought that she would take this on board. How wrong was I!

We have CCTV already but it would not hook onto bed that OT wants to provide and so OT said that she would have to check but she thinks they will provide an additional unit that can be fixed to wall. She told me in front of rep from bed company. This is the 1st time she mentioned it!!! She made it very clear that with the cheaper bed we could have this unit.

I am my DD's advocate and full time carer and just don't need another blinkin battle!!

Sorry for moan everyone

Beemom sorry to hear Bee in hospital, I hope everything with her gets better and she gets home soon! Sending masses of hugs of support !!

Her bed by the way looks absolutely lovely :)