Advice needed! Have you ever been to a private orthotist?

[Amanita]

I am becoming increasingly frustrated with the local NHS offerings (off the shelf with minimal modifications, a long time to wait when you have problems with your orthoses, poor communication, etc) - and am wondering whether anyone has any advice about going private .

Is there anywhere really good? I am in Scotland,so please don't recommend anywhere in Dorset: I'd never get there!

I am worried that private firms might realise you are desperate, and string you along with glowing promises, which prove to be expensive failures. Am I being cynical, or sensibly cautious?

[John1945]

As far as I am concerned the best Company in Scotland to cater for your specialist needs is

BUCHANAN ORTHOTICS, HELEN STREET, GOVAN. GLASOW (details on google):

I am most confident that they wont let you down, as they also are supplier's to most health NHS boards in Scotland: They "tailor-make" make each individual orthoses to suit their particular patients needs, as well as offering "off-the-shelf" products: They also offer a telephone advisory service, so you can chat to someone who knows about Cmt, and its special needs:

Good Luck ! John,,,, Glasgow:

[REGreen]

Dear Amanita,

I haven't tried a private one but my sister has, in Norfolk. Cost a fortune and wasn't much better than the NHS offering, but service was more fancy. I have had brilliant help from Westmark clinic at Southern General and not too long to wait.

Good luck,

RE Green

[PhilC]

Before you do anything I would make a freedom of information request on your local health authority asking a simple question " What services exist for the treatment of patients suffering from neurological conditions such as CMT? send a copy to your local MP.

I did this and the initial response was to ask why I wanted to know and when I explained there appeared to be none as I could not get an assessment, podiatry, physiotherapy & orthotics all of a sudden these support services appeared. Previous orthotic insoles etc were useless but after making a fuss I was refered to a private company who did a good job.

You have paid for the NHS so demand what you are entitled to.

[Amanita]

Many thanks for your answers. I had found Buchanan on the internet, and was wondering whether they were any good. Then I discovered about Westmarc the other day from one of your (John1945) answers here about SAFOs, and looked them up. Thankyou, REGreen, for the info about their waiting list. Their website actually refers to Neurobiomechanics, so it sounds as though they'd actually understand about CMT gait and balance problems.

I am due to see my neurologist on Tuesday, and shall certainly ask him if it's possible for him to refer me to the Southern General /Westmarc in Glasgow,for Orthotics, as i'm really not at all happy with what they're doing for me here.

But if he can't/won't refer me there (different NHS region), I'll try Buchanan.

PhilC: well done being strong minded and determined and getting referred by the NHS to a private company. The thing is that I have actually been having good help and support from physio and occupational therapy (and loads of exercises to do at home, too), so can't possibly complain about them; it is only Orthotics that's a big problem, and I suspect they are underfunded and understaffed.

The neurologist here is no CMT boffin (he has to cover a huge range of neuro-probs including epilepsy), but he is helpful, seems genuinely interested in CMT and is willing to learn about it. (Might ask him if I can see a podiatrist though, as that has never been suggested.)

.

[Amanita]

A quick update

My neurologist accepts the fact that my orthoses do nothing for my ankle stability.

He has never heard of the neurobiomechanics centre at Westmarc, but is v. interested to know more. He is going to investigate what they do, and , crucially, whether he can get funding to refer me to them. If all turns out well, he would certainly consider sending his other patients to them! I get the impression that I am not the only neuro-patient in this large area of Scotland who is, er, less than ecstatic about the Orthotics Dept.

I am keeping fingers crossed.....