Profiling beds & circulation mattresses

lil_me

Hi honey thought I best reply here to keep all your responses in one place

Right, funding. If she's in Scotland the last I read (unless it has changed lately) several Scottish health boards said they wouldn't fund any electric beds for children under 12

Two Scottish Health Boards do not provide electric profiling beds for children under twelve

taken from the muscolar dystrophy website from a recent service review, so still at least 2

However http://www.livingmadeeasy.org.uk/scenario.php?csid=172 there are some organisations who may be able to help from charities/other organisations.

The wesbite doesn't sell goods but they will show you where you can buy just about everything you could need for a disabled child or adult

http://www.livingmadeeasy.org.uk/bedroom/variable-posture-%28profiling%29-beds-461/ grown up beds
http://www.livingmadeeasy.org.uk/children/beds-3166-p/ little people beds
They also list hire places for beds http://www.livingmadeeasy.org.uk/bedroom/beds-%26-accessories-for-hire-654-p/ and there is a mattress one too http://www.livingmadeeasy.org.uk/bedroom/mattresses-%26-overlays-for-hire-745-p/

bribri_2

Regs may be different for Scotland but...
in our Lonodn borough, we have been given a profiling bed for our 7 year old. Then had special sides added as hands/legs were being caught in bars. Also been provided with a 'sleep system' which supports the sleeper to hold a position at night.

I was told that we were given the bed because of our needs as parents not too damage our back with lifting.

Also we have had legal advice that if child is assessed with a need then that need must be provided for regardless of cost etc, waiting for budget is no excuse. So in the past for us a charity has bought an item, then challenged the health authority and had the money refunded.

sockdrawer

lil_me wrote: »

Right, funding. If she's in Scotland the last I read (unless it has changed lately) several Scottish health boards said they wouldn't fund any electric beds for children under 12

Aye, you're right. I have just found that out this afternoon. According to the OT/Social worker she would be placed on an all adult list, as there is no pediatric provision and would be waiting for years as there are no funds. She's about to have a rod put into her spine for the scoliosis problem she has, so really needs the bed sooner than "years"

lil_me wrote: »

However http://www.livingmadeeasy.org.uk/scenario.php?csid=172 there are some organisations who may be able to help from charities/other organisations.

The wesbite doesn't sell goods but they will show you where you can buy just about everything you could need for a disabled child or adult

Very Very useful lil_me, and thank you so much for all the research you've done. It's helped no end. Thank you dear. x

sockdrawer

bribri wrote: »

Regs may be different for Scotland but...
in our Lonodn borough, we have been given a profiling bed for our 7 year old. Then had special sides added as hands/legs were being caught in bars. Also been provided with a 'sleep system' which supports the sleeper to hold a position at night.

I was told that we were given the bed because of our needs as parents not too damage our back with lifting.

Also we have had legal advice that if child is assessed with a need then that need must be provided for regardless of cost etc, waiting for budget is no excuse. So in the past for us a charity has bought an item, then challenged the health authority and had the money refunded.

This is really interesting. I wonder if it is the same in Scotland. It's certainly worth finding out. Thankyou for sharing your experience. I'll pass it on to my sister once I've found out a bit more about situation up here. Thank you once again.

Js_Other_Half

The Cerebra charity is worth a mention, they offer information and advice, as well as grants. They also run a postal lending library of books and toys.
http://www.cerebra.org.uk/parent_support/

sockdrawer

Js_Other_Half wrote: »

The Cerebra charity is worth a mention, they offer information and advice, as well as grants. They also run a postal lending library of books and toys.
http://www.cerebra.org.uk/parent_support/

Absolutely. Both my sister and I are members of Cerebra. They were so fab when it came to advice about building my Niece's sensory room. I hadn't thought about them regarding this. Thank you for the help x

jenhug

would it be worth applying to the family fund also?
http://www.familyfund.org.uk/page.asp?section=000100010001&pagetitle=Grants

sockdrawer

jenhug wrote: »

would it be worth applying to the family fund also?
http://www.familyfund.org.uk/page.asp?section=000100010001&pagetitle=Grants

I suggested that to my sister who is going to work out whether they are under the income limit (my BIL has an RAF pension) Thanks jenhug