18 months of ops and rehab - how to get help/support?

[Sway]

Wonder if you can help point me in the right direction.

Other half has Ehlers Danloss Syndrome (hypermobility type), and has for the past few years been sent pillar to post for various treatments/pain management/etc., none of which have made any real difference.

A month or two ago, for some reason she was sent to the local Nuffield, to see a 'youth mobility specialist', who checked out her hips (ct scans, x rays, etc.) and has found a long list of issues.

Simplified, it seems her femur is rotated nearly 45 degrees from where it should be, muscles need detaching and resetting, there's issues with the sockets, and growths on the balls.

He's rushing through to surgery, as he's never had a person her age where this hasn't been picked up and dealt with years before (she's 32, the next oldest he's ever operated on with similar issues was nearly a decade younger.

We're going to the pre-op meeting tonight (diagnosis was late last week), but it's strongly looking like the first op will be in the next couple of weeks, with a 9 month rehab. The rinse and repeat the other side.

Main worry is family life - I'm the sole worker, as a consultant, and cannot get time off (the odd day, yes, but not anything extended without serious financial problems) and am often away from home for a few days at a time.

We have two kids, aged 8 & 10.

Ideally, we'd need some form of home care for when Kat's at home recuperating, plus some help around the house, and assistance with school runs/psychological support for the kids.

I'm assuming all this can be provided by the NHS/State, but how do I go about getting it sorted? OH is in a state of mild shock at the moment, so isn't able to focus on anything other than the immediate.

Any tips or advice greatly appreciated,

Sam

[Nick Grant]

A collegue's wife has EDS and runs a support group here in Scotland. There may be a similar group near you that may be able to offer help and advice.

[Nick Grant]

The group she runs is part of this..

http://www.ehlers-danlos.org/

Helpline here:

http://www.ehlers-danlos.org/patient-support/eds-u...

0800 907 8518

open Monday, Tuesday, Wednesday and Friday (09:30 – 17:30),

[Sway]

anonymous said:

[redacted]

Unfortunately not. Her mum is in her late seventies, my family are over 60 miles away...

Other half is classed as disabled in terms of mobility, and she'd certainly qualify (if only temporarily) for higher rate care component of DSA - surely there's some consideration for the aspects of life that this impacts?

If only some form of support and councilling for the kids, for whom life is tough enough watching their mum struggle through life - this is going to be an order of magnitude worse...

Separate issue, but this should have been picked up on when she was a teenager - instead she was told she was a hypochondriac. Then she's seen multiple physios who've either accused her of not trying, or that she's doing it wrong - specialist is very clear that they should have picked up a near 45 degree rotated femur each side, and that their actions will have caused more damage which he will have to attempt to correct.

[battered]

Sway said:

If only some form of support and councilling for the kids, for whom life is tough enough watching their mum struggle through life - this is going to be an order of magnitude worse...

Have a word with the school. They are very good at pulling in other agencies, a smart teacher will suggest that difficulties in home life are getting in the way of education, they need extra help, etc. Good luck sorting it out.

[Sway]

Thanks Nick - I'm pretty sure she's already aware of them (she's a member of multiple support groups etc., and they've been very useful in the past in preventing doctors causing real harm through ignorance) but I'll double check and make sure.

Much appreciated.

[Nick Grant]

Sway said:

Thanks Nick - I'm pretty sure she's already aware of them (she's a member of multiple support groups etc., and they've been very useful in the past in preventing doctors causing real harm through ignorance) but I'll double check and make sure.

Much appreciated.

No problem, your wife's situation sounds very similar to my collegue's wife, years of misdiagnosis before getting to the root of the problem. They have two kids too. Stay strong things will hopefully get better.

[battered]

Sway said:

...and growths on the balls.

Yes, it happened to me when I was about 14, too. It's nothing to worry about, it's something that all boys go through. You'll probably note a few more changes, as long as you feel OK there's no need to be concerned.

Having made a helpful comment, I am now free to make an inane joke. :-P

[Sway]

I typed that, and knew exactly what was coming... Which won't be me for 18 months, other than in a kleenex!

[IanA2]

You could try your local social services, it's certainly the sort of situation they used to be able to help with, but cuts cuts cuts.....At any rate, they should do an assessment.

You should be able to access home care through local agencies, I guess it's just a question of who pays for it.

Also make a PiP application.

[Sway]

IanA2 said:

You could try your local social services, it's certainly the sort of situation they used to be able to help with, but cuts cuts cuts.....At any rate, they should do an assessment.

You should be able to access home care through local agencies, I guess it's just a question of who pays for it.

Also make a PiP application.

Will do - she already receives lower rate mobility (and was about to apply to be re-assessed as her condition had deteriorated), however I'm not sure that Pip applies to short/medium term scenarios? Also concerned about the lead time - the initial process took over six months.

[condor]

Have you considered getting an au pair to help out with light cleaning and looking after the children?

[Sway]

condor said:

Have you considered getting an au pair to help out with light cleaning and looking after the children?

Considered, and dismissed as simply cannot come close to affording it.

For the last year, I have paid for a cleaner to come round for a few hours a week to help with the bigger jobs, was already planning to extend that by 50%, but that's pretty much the limit.

[IanA2]

Sway said:

IanA2 said:

You could try your local social services, it's certainly the sort of situation they used to be able to help with, but cuts cuts cuts.....At any rate, they should do an assessment.

You should be able to access home care through local agencies, I guess it's just a question of who pays for it.

Also make a PiP application.

Will do - she already receives lower rate mobility (and was about to apply to be re-assessed as her condition had deteriorated), however I'm not sure that Pip applies to short/medium term scenarios? Also concerned about the lead time - the initial process took over six months.

I think eligibility shouldn't be a problem. Lead time will of course.

[Richjam]

IanA2 said:

Sway said:

IanA2 said:

You could try your local social services, it's certainly the sort of situation they used to be able to help with, but cuts cuts cuts.....At any rate, they should do an assessment.

You should be able to access home care through local agencies, I guess it's just a question of who pays for it.

Also make a PiP application.

Will do - she already receives lower rate mobility (and was about to apply to be re-assessed as her condition had deteriorated), however I'm not sure that Pip applies to short/medium term scenarios? Also concerned about the lead time - the initial process took over six months.

I think eligibility shouldn't be a problem. Lead time will of course.

Unfortunately lead time is very much a problem my wife is severely limited in mobilty after back surgery that made her problems worse. We recently won an appeal at tribunal but now the DWP are appealing against (which they are entitled to do) I doubt we will have a resolution in the next 6 months. I hope you have better success it's the last thing you need in these stressful times.