Total Parenteral Nutrition

Hi again,
My daughters TPN runs overnight for 14 hours so we don't take her out with it running. She has a suction machine attached to her peg tube which we take around with us and hang over the wheelchair. Her stomach doesn't function so has to be emptied this way. She is also on several laxatives a day because her colon doesn't work either resulting in bowel incintinence.

She was given a home visit for face to face without any problem, the health professional was really nice had the forms and hospital letters and went over everything? My daughter also has an extremely rare Autistic Spectrum disorder (so rare the genetic consultant has put her case on a database to see if anyone else in the world is similar) and learning difficulties, partially sighted so is never alone.
Going back to the TPN it should be a given that you qualify, I know a few people who are not as complex as my daughter who were awarded high rate for both components. Yes you're right about the rucksack and keeping the line safe from being pulled out and you need to be vigilant of people rushing about and possibly banging into you so you would head a companion going out.
Hopefully you get a nice Health Profesional who has some knowledge about your condition. As I said to the one who came to visit my daughter if she didn't get high rate for both I would be asking for a review as her condition was not the result of alcohol abuse, drug abuse or smoking which a lot of people do and end up on these benefits because their health problems are more or less self inflicted, which they kind of agreed.
X

Hi Guys,

I've got a home visit by ATOS tomorrow morning.

Anything I should be aware of? Will they want to see my aids and equipment? I've got severe abdominal injuries, and that makes moving a bit of an issue, but I can cope round the house.

If they ask me to walk fifty metres, I can't without major pain, when attached to my feeding equipment. It isn't so bad without. I will not be attached to the equipment when they come, so how is best to handle that?

I guess it's a case of things being variable, and they won't be at their worst when they visit.

Any thoughts or experience very welcome.

Thanks

Hi everyone,

Thanks for the advice and use of your experience. I had the assessment, and it took an age for the paperwork to come through (3 weeks ago)

I have been awarded 14 points Daily Living, and 4 points mobility. But I am not happy.

Firstly, they say "You can either manage medication therapy or monitor your health condition unaided, or you don't need to. This gives you a score of 0"

The descriptor I think applies is "3e. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week. 6 points."

I have two nurse visits a day, as the hospital will not let me look after my own line.

However, they have given me 6 points because I "need assistance from another person to manage a theraputic source that enables you to take nutrition. This gives you a score of 6 points"

I don't think they have acknowledged that TPN is effectively medicine?? And that the nurses are monitoring me at every visit. Or can the same issue only give rise to points in one descriptor?

I also got other points for appliances etc. so it won't make a difference financially, but I don't trust them to not change the rules (on appliances?) in the future, hence I want to make sure I have the max points I possibly can.

When it comes to mobility, I said I can walk 100m before experiencing difficulty, which they agreed with (4 points). That's fair enough as far as it goes.

I think "1f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points." should apply to me when I am on the pump, connected to my Aorta, for 14 hours a day, even if most of it is of a night. I need someone to ensure no one is getting entangled in the line. It's very dangerous.

In all, I think they have missed the seriousness of the line, the management needed, and the risks involved.

What do you guys think? What do I do from here?

I have till Friday to ask for Mandatory Reconsideration. I have had other things to deal with (a civil court case) so sorry for this being so late, but it couldn't be helped.

Got my ESA form as well, but I don't think that is going to be a problem - tube fed is enough for support group. So I am hoping, this, ESA, and court case is my three!

Cheers

Gordon,

Thank you for your response. It's very informative, and pretty much what I had come round to thinking. Having someone experienced confirming my logic is great reassurance. This site has made the process so much easier, keep up the good work!

Thanks again,

nwfb