Incontinence wear for three year old

[Deleted User]

Thank you so much for the link to nhslothian continence service. We had no idea that such a specialised department existed. We hope for an assessment from the new Health Visitor soon and is is great having the email link for the nhslothian continence service. This is a great forum! Thank you very much.

[Deleted User]

Hello Devizes 18193 - Can you tell me how we can 'prove' that DLA is not for nappies, please? The continence lady from NHS Lothian told me that the nappies (pull up pants) should be bought out of the DLA money and I didn't know how to respond. She said that NHS continence provision was only from age 4 onwards and, according to assessment, Pull Ups would only be provided as part of a toileting programme. This is not relevant to us because our little one has permanent brain damage. What are NICE guidelines and do they apply in Scotland? The NHS Lothian lady said that they worked from their NHS Lothian policy document.

bribri - I hope you don't mind but does the DDA mean that the child has to have nappies or does it mean she is being discriminated against until she is aged 4 (the age of assessment according to the lady at NHS Lothian) because she is not allowed pants as close as possible to the normal ones? If you can give any more detail it would be really appreciated.

This is exhausting, as Eric's Mum knows because we don't seem to be getting anywhere. In the meantime it is frustrating. Any more replies would be very much appreciated. Just when we were hopeful - it has come to nothing. I dared to ask if there was any means of appeal but the lady from NHS Lothian said that these were the agreed guidelines and there was no way of appealing. Can this be true - after the HV's assessment of course? Because we have been told that there will be no provision until our little one is 4 it seems a waste of the HV's time asking for an assesssment - but this is what we have been advised to do. I really feel quite swamped by it all.

I'll be glad of any replies. Scotland seems to be so different from England.

Thank you everyone - Crimson

gollygosh

Just a thought, (I know nothing about the complexitites of DLA) would your doctor be able to write a prescription for them? my doctor wrote me one for soya milk without even being asked (he decided we were entitled to it because "why should you pay twice as much as everyone else") it might be worth asking just to get you through the next few months. Good luck.

carole740

Not sure about Lothian, But here in Grampian we get incontinence from age 3 and we get either pampers nappies or huggies pull ups once they out grown them they get Attends.

DLA is definately not for buying nappies.

[Deleted User]

Thank you, again for the helpful replies. The nappies, we have been told by the pharmacist who checked, are not available on prescription but thank yo for the suggestion, gollygosh.

Carol740 - if at all possible can you let us know how to 'demonstrate' or explain adequately, that DLA is not for buying nappies? I didn't know how to respond when the lady said that they should be bought from DLA. I'm grateful to hear that in Grampian you get some supplies. I cannot be certain but I think the lady from nhslothian said that the guidelines were national throughout Scotland.

I really do appreciate the help. A recent vital taxi ride, complete with wheelchair etc, cost over £28 and other expenses are crippling.

Thank you, Crimson.

[Deleted User]

Hello rac456. If you don't mind me asking would you let me know the Health Board in Scotland who give you your provisions? The reason I am asking is because, although I can't be certain, I think the lady from NHS Lothian told me that no where in Scotland were children under 4 given incontinence wear and now, as you see, Grampian do make provision. It sounds as if I may not have been given the full amount of information about provision in Scotland.

Once again, I hoope you don't mind.

Thank you, Crimson

freddie2

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4057529.pdf

This is probably what she is talking about. As far as I am aware it applies to England and Wales , although is accepted as good practice nationwide. Most areas raised their age for continence supplies to 4 as it is not that unusual for children without disabilities to still be in nappies at 3 and a half!
It is also fairly common to say that pull ups can only be prescribed as part of a training programme, although most areas that I am aware of will be flexible re this.
Please dont think that a toileting programme will automatically be out of the question for your little one....many children with disabilities can become dry in time with the right help.

[Deleted User]

Thank you very much, freddie2. It is a long DOH document and I have had a brief look. It probably does apply only to England and Wales but is good practice approved by the Government. The reason I am so negative about toilet training in our case is because the brain damage has been diagnosed from birth and is quite extensive affecting motor skills and what is loosely called 'delayed learning.' I'm really glad to have received the link to the document you gave, thank you - tomorrow's homework!

GlasweJen

Don't give up crimson, I know a boy who has cerebal palsy; R can't talk or walk and he is dry! He uses sign/his communication aid to tell his mum/teachers when he has to go.

R has had nappies since he was 3 from NHS Greater Glasgow and Clyde, pull ups for day and nappies for night.

[Deleted User]

Thank you, Glaswe.jen. It really is encouraging so we appreciate it. It is really interesting that we have been told that the nhslothian guidelines about incontinence wear applies across all of Scotland yet, from this forum - first Grampian and now Glasgow - are showing much more flexibility. We'll keep in touch in there is any progress. In the meantime thank you again to everyone who has responded and has made all the relevant suggestions.

Crimson