cerebral palsy Help Please

jaffa30

Hi All

I was wondring if anyone could send me in the right direction to get help for my friends grand daughter who has cerebral palsy.



Ie websites charities who will help with paying for specialist shoes for her...( i dont know if any do )



I have applied to 2 places for help ( masonic charities)and iam awating a reply

As you can guess i dont know where to start to try and find help for the little lass


MTIA John

munchings-n-crunchings

Hi Jaffa,

There will be folks here that are more clued up specifically on CP.

More general options will be:-

http://www.familyfund.org.uk

http://www.caudwellchildren.com

If you contact Welfare Rights, part of your county council, they ofen have a staff member skilled in the Family Fund application process, so you can get the most out of it. Although it is a fairly easy process.

There are often local charities that will help with things, that other organisations don't cover.
Try you local Lions club, or The Round Table.
It's a matter of asking.
Just write a letter, saying who you are, who the child is, their problems and disabilities, and why they need help.
If people ask in a polite and courteous manner, help is often forth coming.



Good luck,
Munchie

Js_Other_Half

http://www.turn2us.org.uk/n lets you search charities which may help - it's a searchable datasbase of a lot of uk charities.

hth

cresentmoon

Hi Jaffa,

My DD has CP and has specialist shoes for her (Peidro Boots).
I'm not sure if these are the same shoes as the ones your friends granddaughter needs but my DD's were provided by the NHS through her Physio. I would think that asking the Physio where to get them from would be the first step (i think they are £100-£200 a time to buy).

I can also recommend https://www.newlifecharity.co.uk . If you have any further question don't hesitate to ask.

jaffa30

cresentmoon wrote: »

Hi Jaffa,

My DD has CP and has specialist shoes for her (Peidro Boots).
I'm not sure if these are the same shoes as the ones your friends granddaughter needs but my DD's were provided by the NHS through her Physio. I would think that asking the Physio where to get them from would be the first step (i think they are £100-£200 a time to buy).

I can also recommend www.newlifecharity.co.uk . If you have any further question don't hesitate to ask.

Hi Cresentmoon

Iam not sure what make the boots are but i will be speaking tothe GD later today and will find out......

I better your DD s a little star cresentmoon



The physio they have for her is useless , they had to take her to hospital because of her walking and the doctor said the shoes sh was wearing were a size to small , but the physio had said a couple of days before that the shoes were fine..


Shes such a happy go lucky little girl and deserves ( like all kids ) the best possible start to life......


Thank you all for the advice i shall keep everyone on the thread informed a to what happens

cresentmoon

Thanks Jaffa....she is our little star.

Please, please, please don't be afraid to complain about a useless professional. I have done so (politely of course!) about both Physio and SALT. On both occasions things have been changed for the better for both my daughter and other families who may be too shy to speak up. Your friend's GD should be getting as much help as she needs and the earlier the better (my DD is 3 in Nov).

Don't be afraid of pulling people up on not doing their job satisfactorily, sometimes it might even help them to get extra resources (in both my complaints, the services were woefully understaffed and bringing attention to those higher up may have helped).

I would say from my point of view a good Physio is the most important thing a child with CP needs. If you need to...go around them for other things e.g contact the hospital directly.

jaffa30

Shameless bump............................................................................

Humphrey10

I don't know if Scope helps with things like shoes: http://www.scope.org.uk/
A friend of the family has cp and his mother used to get some help from Scope I think, not sure exactly what though sorry.

Hope you find somewhere that can help!

kazzah60

http://www.thegentlemensnightout.co.uk/
this is a brilliant charity who can help in LOTS of ways from financial donations to building extensions, sensory rooms etc etc
my charity that i volunteer for has had lots of help from them - great people.

Also the Family Fund can help - they paid for me to have driving lessons and my driving test ( thank you FF!) and for a holiday for 13 years until my ds was too old to be eligible
PLEASE get the family to apply to them -they can help in LOTS of ways

good luck
Karen

jaffa30

kazzah60 wrote: »

http://www.thegentlemensnightout.co.uk/
this is a brilliant charity who can help in LOTS of ways from financial donations to building extensions, sensory rooms etc etc
my charity that i volunteer for has had lots of help from them - great people.

Also the Family Fund can help - they paid for me to have driving lessons and my driving test ( thank you FF!) and for a holiday for 13 years until my ds was too old to be eligible
PLEASE get the family to apply to them -they can help in LOTS of ways

good luck
Karen

Hi Karen

Thanks for the info , i have passed the info on to Alan and his wife and they ae going to email / write etc to these places...

I am useless with writing what i am trying to say , but thank you everyone .

longhotbath

Hi Jaffa30, your friends granddaughter really needs to be assessed properly for shoes. The most widely avaliable are piedros, but there are other makes too. The correct footware will give her stability and support her ankles.
Her parents may need to talk with their paediatrician, and also the physios manager or a senior paediatric physio within the team. Just buying a pair may cause future problems (my son curled his toes as his feet were going into the boots, and had to switch to sandals which became unsupportive and he has now switched to molded orthotics which cradle his feet and support them correctly.

If nothing else, ask for the doctor at the hospital to assess her, or get her properly assessed by another physio, and say that the shoes will be privately funded. (some great funding links already given).

Here, one pair of Piedros at a time are fully funded by the NHS when they are needed. There is also a wide range of fantastic designs and colours for girls.

Best wishes, LHB