DLA doctor visiting tomorrow

[SparkleRainbow]

Hi all, well I got a letter this morning in the post giving me an appointment for a Work and Pensions appointed doctor to come and visit my ds regarding my application for dla.

I would be grateful of any experience anyone can offer. A little background, my ds has a condition called ehlers danlos syndrome hypermobile type, which causes severe joint pain and frequent dislocations and subluxations, poor coordination leading to frequent falls, poor muscle tone. As part of his condtion he has unstable neck vertebrae which can and do dislocate easily, causing pain, urinary and fecal incontinence, paralysis and even can cause death. He needs twice daily physio, regular pain medication and is restricted in his physical movement. This is a fairly unusual condition, there are no other documented cases on the internet of children surviving the dislocations he has had, none of his consultants can offer much support and his rheumatologists are struggling to find and orthopaedic surgeon anywhere in the country who will take my ds on as a patient. My ds is very emotionally fragile at the moment, as he sees the differences between himself and his peers, he is obviously not aware of the possible consquences of his condition, so I am nervous about some inexperienced or unknowledgeable doctor coming in and saying inappropriate things to him, and generally not knowing what he is talking about.

Sorry not a short message, can anyone offer any advice, or experience, thanks you in advance.

[SparkleRainbow]

Sorry perhaps should have said my ds is 7.

[intothewest]

Poor you and ds- Perhaps you should have quiet word with dr. when he arrives to fill him in on condition etc BEFORE he examines ds.It seems really stupid that if the experts can't help or do not have the answers,they are sending some random dr to assess ds.- Have all your dr reports,medical history to hand- good luck

[shaz298]

Agree with intothewest. Is a bit of a daft system. Def speak to doc 1st and explain to hi how best to talk with/approach your little boy too in addition to getting him to ask his questions etc before seeing LO.

Good Luck xxx

[deepbreath]

Good luck, we applied for DLA for dd when she was 4 and got it after a bit of a barney with them! She gets HR mobility and MR care.

We didn't ask for their dr to come out, just filled in the form.

[SparkleRainbow]

I didn't ask for the doctor either, I just filled in all the form and provided supplementary evidence, but I guess they want a doctor to see him for themselves, although what on earth he is actually going to do is worrying me. He won't have access to xrays, scan reports, which I obviously don't have copies of. Ds's class teacher is going to come for the appointment, so she can explain the adaptations they have had to make in school, and how his pain affects him in school, and generally hold my hand, which is lovely. I am just so worried, we could really do with this support, but my experience of 90% of the nedical professsion is that they just either don't understand the condition, or don't have any knowledge of it at all.

Has anyone else had a doctor come to their house to "examine" someone for dla? It would be good to know what to expect.

I will talk to the doctor before I let him see ds, to be honest if he is not prepared to listen to me about ds's needs I shall not let him see ds. I have enough problems getting ds into consultant appointments when he knows the consultants well, he won't talk, he either cries hysterically or shuts down completely and will not answer, acknowledge, sometimes even falls asleep, anything to escape the situation.

[SparkleRainbow]

Sorry, very bad manners, I should have said thank you so much for answering me, and your moral support, much appreciated.

[anonandlikeit]

Be brave sparkle, take control of the situation (in a calm smiley way).
So lay out your "rules" what he can & can't ask your ds etc, before you allow them in the same room.
Explain that your ds may find questions upsetting & that it is becuase of his many, many appnts & that eh feels so very different to his peers.
If you feel your ds is getting too distressed, call a halt to the questions.

You may well find it is just a formality & he speaks mainly to you.

The only person I know in RL who's child was visited by a DR was awarded HR care & mobility.

[SparkleRainbow]

I can hope then...... thank you anon. I am not feeling terribly brave at the moment, thought it would be nice to have a slow run into the medical fight again ater christmas, but not to be [sighing and resigned emoticon needed]

General feeling is I should print out whatever I can find about the extent of his condition for information purposes, and have my copy of ds's records which is not fully comprehensive, but will at least show some of the details, and refer to my information given in the application form. God this feels like preparing for a job interview, for which I am not qualified.

[SparkleRainbow]

Sparkles walks off muttering new personal mantra "Calm smiley way calm smiley way"




Thank you anon

[anonandlikeit]

Sparkle I can talk the talk but in your situation I would be a quivering mess good luck

[starfishmummy]

Try and have someone there with you. Just a friend or neighbour will do, they can take notes and will be useful if you are dealing with your ds

THere are some good hints in the Cerebra guide which I think is on line (may not be your childs dx but still useful) Theres a bit on preparing for a medical and a record sheet (I think they suggest asking the doctor to sign it iirc)

it's here, you can download a copy
www.cerebra.org.uk/parent_support/DLA_guide

[SparkleRainbow]

thank you star fish, I will print that out now.

[SparkleRainbow]

I have got ds's class teacher coming to be with me, so that is covered. She is very knowledgeable about how ds's condition affects him, how school has had to make adaptations for him, plus she has been through the dla process with her husband, so it shouldn't be too daunting for her. A disability support worker is a good idea, but I guess it is too last minute, as the appointment arrived today, for tomorrow! Still I could try ringing them in the morning.

[SparkleRainbow]

This guy is coming from Birmingham, from an organisation called "Medical services, working for the DWP". Could just be an organisational thing and they send the doctors from anywhere, rather than a specific company with their own doctors. I guess I will find out.

[goingroundthebend4]

Not had for ds but had formysekf lots of questions about what can and can't do pain levels what aids are needed etc

good you have teacher coming to help and fill him in .Know when ds had his they wrote to the nursery to fill in

[deepbreath]

Hi again Sparkle, and sorry if I seemed a bit abrupt earlier. Having an arthritic bad pain week and typing is a bit tricky, but wanted you to know that my dd did get DLA in the end with a similar condition. Dd's nursery filled in parts of the form, and there was plenty of supporting medical info.

I know a couple of other dc's with CTD'S that get the same rate as dd, so you should hopefully at least get that. I'll keep my fingers crossed for you

[SparkleRainbow]

Thank you deepbreath I hope the pain eases a bit today. DS had a bad pain night, and is in a ot of pain today, having to wear his collar and having had a double dose of pain medication to get him to school. I would lay odds he won't get to the end of the school day so maybe the doctor will get a better idea of what life is like for him. Mind you it all depends on how closed minded he is, and how much he knows about eds, or thinks he knows about eds (which can be more difficult to manage!) I am ging to spend the day cleaning the house, so I am not too ashamed of the state of it, and preparing all the paper work and evidence I have. Fingers crossed, but I am not hopeful really, don't think anybody really cares.

[SparkleRainbow]

Thank you for asking. It was not a resounding success. The dr was pleasant he clearly didn't know which type of EDS ds has, or any information about how it affects ds, his knowledge was limited to that which you would expect to find on wikki. He was there for an hour, and I spent the whole time answering questions which I had already answered more eloquently on the form, which he did not have a copy of, or had not read his copy of. I let him examine ds, but ds was hysterical and would not cooperate anyway. I was left feeling like I was a sponger on society to have even filled in the form, and that I should have made all the adaptations needed for our home myself already, that I was failing as a parent. I have no hope for a successful award, and am rallying myself for an appeal, although i don't even know if I can do that? Sorry to sound so negative, but it was.

[intothewest]

so sorry it was such a bad experience- hope he goes and reads the form and sees your written answers-it really is a barmy system!

[SparkleRainbow]

I am probably being too negative, but everything is just such a battle. I hope he does read it, I am a bit concerned that he doesn't get to see it, so it is all out of context.