PN Surgery at Bristol halted due to funding.

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: PN Surgery at Bristol halted due to funding.

Post by helenlegs 11 »

Thanks for this info Lex,
I'm sure they will be successful with the 'new procedures panel'. From what you have written it's not as if there could be a negative response anyway :)
I think that there are a few people looking into going to France at the moment. If you contact Judy Birch http://www.pelvicpain.org.uk she will be able to advise you. Maybe we should get a bus up? :D
Section 2a of the NHS constitution gives this info
“ You have the right, in certain circumstances, to go to other European Economic Area countries or Switzerland for treatment which would be available to you through your NHS commissioner.”
Which means

Section 2a of the NHS Constitution)
What this right means for patients
UK patients may be able to travel to another country in the European Economic Area (EEA) or to Switzerland to receive medical treatment and either have this funded upfront or subsequently receive reimbursement from their PCT of some or all of the costs of that treatment.The EEA consists of Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia,Liechtenstein, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia,Spain, Sweden and the United Kingdom.Under EC Regulation 1408/71(from May 2010 EC Regulation 883/2004) where your local commissioner (usually your local PCT) agrees that you should be offered a particular treatment on the NHS and that treatment is available under an EEA country’s or Switzerland’s health system, you can ask your commissioner to recommend to
the Department of Health that your health costs be met under an E112 form.
There's more but you can find the rest here http://www.dh.gov.uk/en/Publicationsand ... /DH_132960 where you can download The Handbook to the NHS Constitution (2012 edition) (PDF, 613K)
AND
Further information can be found at the Department
of Health (http://www.dh.gov.uk) and the NHS Choices
website (http://www.nhs.uk).
(Refer to page 120 in the Appendix for the source of the right)
BON VOYAGE ;)
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
peaches
Posts: 53
Joined: Mon Sep 27, 2010 8:58 am
Location: West Yorkshire, UK

Re: PN Surgery at Bristol halted due to funding.

Post by peaches »

Hello everyone

Back again.

Sorry to hear that Lex, looks like Andrew got in in good time!

Doesn't it just make you spit that not only do we have a lack of medics able and willing to carry out treatment in the UK, but now we can't get past the red tape!!! I think this is just another fancy was of saying that it's a lack of funding and they are just jazzing it up in fancy works. Think were daft!!

Six weeks ago I started a new job as a care assistant in a local residential home, but I've started to have flare ups at the end of the day. The job is very physical (more so than I imagined) lots of bending, making beds, turning mattresses, bathing and lifting and it's not stop. Struggling also with the heat in the place - sweating buckets and dehydration is a bit of an issue of us PN'ers. I'm almost certain that I will have to give this up, but I do love doing it. It's so unfair. Anyway, job hunting continues and I think it will be back into an office for me.

I did manage to get my height adjustable desk and special chair as part of my redundancy package from my last employer when I left and they are now in my spare bedroom, so I'm hoping that that will count in my favor when I go for an interview. I've a dilemma that someone could perhaps help me with in the UK. Do I tell them about my problem when I go for interview. I feel that I may be discriminated again if I do?

Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: PN Surgery at Bristol halted due to funding.

Post by helenlegs 11 »

That's a tough one Peaches,
In a buoyant market I would say it wouldn't be a problem BUT. . . . . it's not. I would ask the citizens advice what they would advise.
Sorry I'm not any more help.
Take care,
Helen x
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: PN Surgery at Bristol halted due to funding.

Post by calluna »

I think it would be sensible to mention any physical limitations at an appropriate point in the interview, however I'd expect this to be on the initial application form. Reason - depending on the size of the workforce, both public and private sector employers are required to have a certain percentage of disabled workers on their payroll, if they don't meet this target then they are fined. Have a look here, in the section entitled Employment on the open labour market.
Painful Man
Posts: 59
Joined: Sat Dec 31, 2011 1:07 pm
Location: UK

Re: PN Surgery at Bristol halted due to funding.

Post by Painful Man »

Last month I had my first injections at Bristol. I think I understood that they will still do surgery if necessary. I was listened to and well treated. I felt like I'd got to the right place.
peaches
Posts: 53
Joined: Mon Sep 27, 2010 8:58 am
Location: West Yorkshire, UK

Re: PN Surgery at Bristol halted due to funding.

Post by peaches »

Thanks Calluna and Helenlegs

I'll take a look and try and see if I can find out a bit more before I go for interview. That's if I get an interview in the first place.

Cheers
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: PN Surgery at Bristol halted due to funding.

Post by helenlegs 11 »

I think the surgery will resume Painfulman, they just need to get all of the boxes ticked for what is a new procedure for the NHS (if I have read the predicament correctly) I know that birdlife was also offered surgery and that was just after we had heard there was any issue . Seems that Dr G doesn't see it as a problem for the future just a time consuming exercise.
We will just have to wait and see how it pans out.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: PN Surgery at Bristol halted due to funding.

Post by helenlegs 11 »

duplicated sorry
Last edited by helenlegs 11 on Fri Jun 22, 2012 12:58 am, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Poppy
Posts: 66
Joined: Sat Mar 24, 2012 3:19 pm

Re: PN Surgery at Bristol halted due to funding.

Post by Poppy »

Re going to France for treatment; you MUST have the backing of your GP and I was told when I tried that you must have exhausted all possible treatments in this country before they will consider it. I tried to get my GP to back me for treatment for Maigne syndrome in 2005. Got a total refusal because I didn't have a specialist diagnosis ( I knew what it was); and because my GP had never heard of it. He started me back on all teh treatments I'd tried like facet injections (useless), acupuncture, physio, nerve abalation etc with months of waiting between each thing. 2 years later a neuro surgeon suggested that's what I had and GP still refused to back me. A few months ago I got a definite diagnosis of Maigne syndrome and PN from Dr de Mello and my GP still refuses to back me because DR de MNello says the nerve damage is now to severe for any treatment. In 2005 it could have been totally cured by physio and/or simple surgery.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: PN Surgery at Bristol halted due to funding.

Post by helenlegs 11 »

Dr.De Mellow's opinion is only one Dr's opinion tho' Polly and you can ask for a second one. I know that you agree with his diagnosis but I do wonder how he can say that it is too long???. . . . Have you also pointed out the fact that you could have been helped with properly targeted conservative treatments if the Dr had taken your suggestion of Maigne syndrome all that time ago. Referring you now would at least give them the opportunity of righting some of that wrong.
I don't know a great deal about Maigne sydrome, in fact I'd never heard of it until you. . . .but it does keep cropping up now. Not sure if you saw the Glasgow conference downloads but it is definitely mentioned there. Here I think.
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Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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