Being passed around

[ScienceGeek]

My GP referred me back in November to an OT at the local hospital. At my appointment this morning I found out that they only take people with psychiatric illnesses, so was then referred on to learning disabilities. As you can imagine the response was, AS/Dyspraxia = not LD, nobody knows where to send me Meantime I've been told that I need to see an OT urgently because of my toe walking and other various problems because of AS/Dyspraxia.. Fun. Why am I supposed to know this stuff and not the so called "experts".

[Tally]

If the way you walk is causing you pain, they need to help train you to find a more comfortable way of walking. I can't see why it matters whether you have a psychiatric illness or what. That's really frustrating.

[something_different]

seems very silly and very annoying

 

 

[Karen A]

seems very silly and very annoying

Hi.It will be about money....who has a budget to see which patients.Ben has AS and dyspraxia.I could write a book about our experiences.The OT did her best to discharge Ben because she sees children with dyspraxia and he also has AS.CAMHS did not want to write on a DLA form that he has dyspraxia because they don't support us for that bit and know next to nothing about it ......

If I find an answer I will let you know.Karen.

 

[ScienceGeek]

Ok. I went into the drs to find out what was happening about my referral as I hadn't heard anything. Still no progress and LD team have said they can't take me and the local hospital won't because I don't have a "psychiatric illness" so I yet again I don't fit anywhere and nothing is happening. My foot is healing up enough to walk, but I still have to take frequent breaks. It seems pretty much like the situation hasn't changed having read back at the first post I made.

Edited February 17, 2009 by ScienceGeek

[madme]

I'm not sure if this will help and If not sorry. In many areas you can self refer to podiatry- who also deal with gait abnormailities as I did this for my son as he was walking very badly and has now got inserts in his shoes. Its just a thought. Good luck

[ScienceGeek]

Well it has got even more interesting. I found a private OT that did work for the NHS, and told my GP about them. GP enquired and told PCT, PCT put pressure on Learning disabilities and now all of a sudden the OT there will see me after all! Apparently they are supposed to be ringing me at some point to arrange an appointment. Why they couldn't have sorted this out in say, erm... November?! ARGH! I hate this whole being stuck inbetween and therefore not getting the help I need. Every little bit of help I do get is a freaking fight to get.

Edited March 19, 2009 by ScienceGeek

[NobbyNobbs]

also, bear in mind we're about to enter a new financial year, when suddenly they have the budget to actually give the care they're meant to give all year round! my ASD team are delaying my finance request for a support worker until april so that it can go in the new financial year and is less likely to be refused

[ScienceGeek]

Ok they have decided they can't do it afterall, back in the same position again

[ScienceGeek]

I am however paying to see a podiatrist tomorrow as the foot pain couldn't wait anymore (been waiting for a referral for that for about as long!)

[pearl]

<'>

[ScienceGeek]

What should I do next? I can't afford to see a private OT

Edited April 28, 2009 by ScienceGeek

[Mum of 3]

Do you know what, SG, it sounds to me like each person you've dealt with thinks that by referring you on to other people, each person you've seen thinks they've dealt with the problem.

 

If I were you, I'd write down everything that's happened, with dates, and go back to the GP with this. Explain how you feel you've fallen between two different departments, and that you're not getting anywhere. Also, if you can, tell him how upsetting this is for you, and how frustrated you are. Your GP has a duty to care for your entire wellbeing, so he should respond to this.

 

If you feel he is still just referring you on, and not bothering about how long that will take, or what happens next, then you could say something like...'So, I'll make another appointment to see you in a week, just to let you know everythings moving allong as it should be,'...that way, he knows you're not going to just fade away, and you know that you'll be keeping on top of chasing up the appointments.

 

If you feel your GP is really not sympathetic, is there another GP you could go to in the practice?

 

In our surgery, there are 5 or 6 different GPs, and you can make an appt with any of them. Sometimes, I'll see the first one free, for a simple thing like an infection, but if it's ongoing, I always go back to the same one. I found the one I liuked the best, and always see him for anything important. We've built up a really good relationship, and I don't have to keep going over my family history every time!

 

<'> Good Luck!

[ScienceGeek]

Saw the podiatrist this morning and my left leg is shorter than my right, feet are rolling inwards, awkward gait, hammer toes. Multiple trigger points in the muscles in my legs, and are out of synch with my walking My left leg is nearly an inch shorter than the right

[ScienceGeek]

Seen my GP and still no news about seeing an OT He showed me the log of all the calls and letters that he has done trying to chase this up and it is a heck of a lot! I'm so fed up of having to chase it with absolutely no progress. I'm still chasing it, but am also trying to find out some alternatives just in case. He has referred me to get physio and see an ortho for the excrutiating pain in my feet (seriously not joking). Painkillers don't touch on the pain much anymore I saw on the computer it said chronic achilles tendonitis Currently I use ibuprofen gel on it plus naproxen, codeine and ibuprofen, paracetamol max doses a day and it still incredibly painful

[Wenders]

Seen my GP and still no news about seeing an OT He showed me the log of all the calls and letters that he has done trying to chase this up and it is a heck of a lot! I'm so fed up of having to chase it with absolutely no progress. I'm still chasing it, but am also trying to find out some alternatives just in case. He has referred me to get physio and see an ortho for the excrutiating pain in my feet (seriously not joking). Painkillers don't touch on the pain much anymore I saw on the computer it said chronic achilles tendonitis Currently I use ibuprofen gel on it plus naproxen, codeine and ibuprofen, paracetamol max doses a day and it still incredibly painful

 

 

Hi there,

I have no experience of your particularly situation. However I had to arrange nursing home care for an elderly relative and kept getting passed around. Eventually after many frustrating weeks I contact our MP who was fantastic. Although they can't make anyone doing anything having your MP help fight your corner is a bonus and it defintely got things moving.

 

It is just a thought as the more people you have on side the better and it will get your MP working for his moat cleaning!

[Diane]

If I find an answer I will let you know.Karen.

 

when you have the answer can you let me know it as well.

 

Yes I expect it is funding and which por it comes out of and you will need to tick all the boxes in one of the pots.

 

Don't know what i can say that will help except I understand your frustration!!!

Edited May 12, 2009 by Diane

[flyingladybird]

I followed the thread with interest - mainly because I got the same thing, undiagnosed adult AS with all the characteristics "geek scientist" mentions about DCD/dispraxia.

 

did wonder what OT can do to help. you always get asked if you had seen OT etc but I wonder if that would be worth it?

any experience/insight on this?

someone else did say Orthotics. that didn't work for me.

there won't be any definitive solutions to these physical disabilities. it's hidden & you/I got legs however it has to be recognised as "disability". I use a disabled buggy when I am particularly tired.

otherwise, I use my car and that's how I manage.

 

what exactly are you looking for with OT? I'm quite intrigued.

 

[ScienceGeek]

I'm still awaiting an OT appointment so I'm not sure how this is going to work really.

[flyingladybird]

One would think a referral to OT would be so straightforward?

 

Very odd that. maybe you look competent physically?

 

when I was younger, I sort of had taken issues in my youthful stride.

 

 

[ScienceGeek]

It's because of where the pot of money is coming from. I had to have a social services assessment first and now just waiting for the referral to be done, but they still don't know if they have anyone qualified.. Who knew trying to get to see an OT would be so much freaking hassle?

[flyingladybird]

hmmmm...I wonder..

 

As for Social Services, wonder AS is rather unheard of.

In my area, I know the Council won't consider someone with AS as Registered Disabled.

It's largely a hidden disability and maybe if you are seen as a high-functioning and AS is known as "milder form of Autism" etc, maybe they think you don't need OT?

have you specified as to in what ways or how OT assessment will help you?

 

My gp knows I have DCD/dyspraxia looking at my physical conditions over the years whilst they wouldn't give me DCD etc but doubt if they would point that out as disability whilst growing up/living with DCD are to me and I do struggle quite a lot. it seems they expect us to just get on with it, which is really wrong I know..

 

 

 

 

[ScienceGeek]

Well I'm being referred for a sensory profile and also stuff to do with my walking. I saw a physio recently but was fobbed off and they blamed it on the way I walk, as if I did it on purpose. I already knew that!

[flyingladybird]

I appreciate your frustration.

 

if you have a sympathetic GP, that usually helps.

at the moment, mine seem to be too busy dealing with "numbers" rather than individuals with these conditions, at least in my perception.

we all got to think and act on that, which often takes time and unnecessary energy!

 

you are not alone, hang in there.