DLA Renewal form is here

shopaholic2

Nothings has changed for me AT ALL,as it never will. I have a very narrow airway, paralysed vochal chords, and this will never get better without some sort of surgical intervention.

I was " offered" the chance to have a tracheal resection operation, but for various reasons I'm not even going there.
I did have a CT scan tho to show the seriousness of the narrowing, and where they would cut away some trachea and sew the rest back together ( considering the risks, and the fact that if it goes wrong, i die, basically, I declined the offer!)
Anyway, can I request a copy of the CT scan to put into my evidence for my DLA renewal claim, and do they HAVE to agree, or can the hospital trust refuse to alloow me a copy???

Seeing yet another consultant today, who will most likely see me as yet another opportunity to further his career by experimenting on me in some way, when all I want is support and a good letter from him for my DLA claim
Thanks for reading x

P.s I'm not bitter (well just a bit!) but have been through alot and every new consultant I see never seems to listen to me, just sees me as some sort of enigma!!

Mandymull

sorry, but how does this affect your life? what care needs and physical needs do you have that require extra support. I know nothing about your condition so am asking out of interest
mandy

ramsas

Maybe this explains why the poster may be having problems!! What is vocal cord paralysis?

Vocal cord paralysis is a voice disorder that occurs when one or both of the vocal cords (or vocal folds) do not open or close properly. Vocal cord paralysis is a common disorder, and symptoms can range from mild to life threatening.

The vocal cords are two elastic bands of muscle tissue located in the larynx (voice box) directly above the trachea (windpipe). The vocal cords produce voice when air held in the lungs is released and passed through the closed vocal cords, causing them to vibrate. When a person is not speaking, the vocal cords remain apart to allow the person to breathe.

Someone who has vocal cord paralysis often has difficulty swallowing and coughing because food or liquids slip into the trachea and lungs. This happens because the paralyzed cord or cords remain open, leaving the airway passage and the lungs ...Would have thought that having someone with him would be a definite given the chance of choking to death along with other problems!

People who have vocal cord paralysis experience abnormal voice changes, changes in voice quality, and discomfort from vocal straining.so would have thought communicating would also come into play here.

MrsManda

You can request a copy of your CT scan.
It can take upto 40 days from your request before you get access though guidance says it should only take 21 days.

Your doctors can refuse but only if they believe that having the record/scan will cause mental or physical harm to yourself or others.
http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68&subcategoryid=160

You can be charged upto £50 to receive a copy depending on how the record is held.

I'm not sure how it works with scans as in theory because they're usually held on the computer rather than hardcopy it should only cost £10.

However receiving a copy on a CD or DVD may not suit your purpose as I'm unsure what computer programme would be required to view the scan and whether the decision makers at the DLA would have such a programme/computers capable of running it. You'd need to speak to your consultant or possibly a better idea would be to speak to a radiologist to see what their suggestion is.

For fees have a look here:
http://www.nhs.uk/chq/Pages/fees-for-accessing-medical-or-health-records.aspx

HTH

shopaholic2

Hi, sorry it seemed i was being vague, but having been like this for so long i tend to not say much for fear of boring people!!
In 1998 i was diagnosed with non-hodgkins lymphoma,with the main tumour being wrapped around my trachea and vocal chords.
This resulted in an emergency tracheaostomy,. as treatment was not started early enough and i was rushed in blues&twos, very very nearly lost my life.
I had an EXCELLENT consultant at the time, who literally saved my life, he was on call that night and got to me within 2 minutes of me being dead.
He has supported me all these years, with excellent ideas, and has always thought of me when new medical advances come in, but has never ever pushed me to do somethinhg i'm not happy with,
Sadly he retired last year

My vocal chords are paralysed quite closely together, which means i have quite a good voice,but breathing is limited and i have a virtually zero excercise tolerance.

Thanks for all your advice, i will contact the consultant who arranged the CT scan and ask for a copy. If it's on computer could a copy be printed off???!!!

Thanks so much
D x

GlasweJen

I don't think the CT scan will make a jot of difference. With DLA they want to know the care and mobility needs caused by your illness/disability. They will write to your doctor to verify that you have the condition and the extent of it.

What you need to get is evidence of your care needs, you're best sending in statements from social workers, support workers etc. The people who make the decisions are not doctors so they probably wont even know what the scan is showing them.

MrsManda

Yes they could print off a scan - I think it'll cost you £50 but GlasweJen makes a good point, it's your care/mobility needs rather than physical medical evidence the decision makers are looking for.

It is probably worth saving your money and see if you can get letters/reports from the people who are involved with your care which state your care/mobility requirements and your prognosis. The form which the DM will send to your consultant will ask these questions if they need more information. But the more information you provide with the form then easier it'll be to make a decision.

jetta_wales

A CT will make no sense to anybody who is not trained to understand them what you would need is a copy of the report made of the results of the scan.

Then as stated you would also need somebody to help confirm for you how this affects your day to day life and what needs it leaves you with.

Molly41

Ive just recently renewed my DLA successfully at the same rates as before. It is a task in itself and does make you feel low about your condition but needs must!

I got a lot of supportive evidence including letters to send in with application from my GP, physio and consultant. I kept a diary for a couple of weeks noting down how my conditions affected me. For example I am very unbalanced so standing up to go to the loo puts me at risk of a fall, I cant walk anywhere without losing my balance. Its the specific details about how your condition(s) affect your everyday activities including your hobbys if you have any.

moose1982

For my first application, I scanned in every page and they are saved on my computer. Then, when I did my renewal, I used the previous answers as a 'guide'. Where things had got worse, I amended those bits and where it was better, I amended those. It also meant that I didn't miss much, if anything, out. Perhaps that could be a way forward for you? Making it a little easier on next renewal for you.

Richie-from-the-Boro

GlasweJen wrote: »

I don't think the CT scan will make a jot of difference. With DLA they want to know the care and mobility needs caused by your illness/disability. They will write to your doctor to verify that you have the condition and the extent of it.

What you need to get is evidence of your care needs, you're best sending in statements from social workers, support workers etc. The people who make the decisions are not doctors so they probably wont even know what the scan is showing them.

"" Not struggling at the mo but hubby is leaving the marital home and i was looking at the options available for help i might get. I am disabled, on DLA and Inc Ben and cannot work."

shopaholic2 .. .. already gets DLA [ #4 ], its renewal evidence the O/P is looking for.