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DylansTrust
20th June 2007, 11:52 PM
Hi, my son Dylan aged 4 yrs 6 months, was diagnosed with Scoliosis, in Jan 2006, @40 degrees. Reviewed in Feb 2007 and had increased to 53 degrees, despite having Theratog flexible brace.

Dylan was diagnosed with Ullrich Congenital Muscular Dystrophy in October 2005. We attend the Robert Jones and Agnes Hunt Hospital in Oswestry. Dylans Muscle specialist is Ros Quinlivan and Spinal specialist is Mr Trevedi

We are waiting for spinal review in Aug 07 to discuss the next step.

Due to his UCMD the hospital is reluctant to fit him with a solid brace, because his muscles will waste away if not used. So they think the only way forward is with the bars, he has been told that he will need to put on weight, because at the moment he is just skin and bones.

Any help and advice gladly welcomed. :angel: :???:

michelle wessollek
21st June 2007, 01:12 AM
When you say bars are you talking about vepter?My son is 3 has congintal scoli he has vepter rods.Doc Smith at childrens in Saltlake city is his Doc.I would be happy to answer any ? you might have.Hope to here back take care Your Friend michelle

DylansTrust
21st June 2007, 01:42 AM
Hi Michelle

Thanks for the reply.
I think the bars are "Spinal Growth Bars" . They take about 12 hrs to fit into Dylans back, under his skin. Then every six months we return to hospital to have him "jacked" up.

They operate and turn/extend the bars every 6 months, to help correct the curve.

I'm not sure what Vepter bars are, i've not heard of them before in the UK. Are they the same thing ? :woe:

michelle wessollek
21st June 2007, 05:54 AM
Hi vepter stands for vertical expandable prostthetic titanium rib.James was unable to get juat the regular vepter because of hemmi vertabra ( they were unable to conect it to his spine)so they gave him two rods one on both sides of the spine they connect to the top of his ribs and hook onto his pelvic.They go in and adjust (lengthen them ) every 4 to 6 months.much like growing rods.James was diagnosed with thoracic insufficiency syndrome.he is also missing a rib and the rest are fused on his right side.he was born with a curv of 55 then suddenley progressed to 63 at the age of one and ahalf.well here Iam rambilng and not answering your ? sorry about that.Vepter is used for kids with all different kinds of spinal and chest deformanties.This device allows for the childs lungs and chest to grow and develope.Here is a web site that I go to daily its for parents with children with vepter if you want Iam sure the parents there will be able to explain with much more detail then I .I think they even have a forum for people in the U.K any way its Vepter forums.com.Sorry for the long post and if you have any more ? I will be glad to try to answer.Your Friend Michelle

titch
21st June 2007, 12:17 PM
Hi! I'm sorry for what's brought you here, but even so, :welcome2:

Dylan looks absolutely adorable :-) Here's a direct link to the UK veptr forum: http://veptr.com/megabbs/forums/forum-view.asp?fid=18 - it looks like the Nuffield in Oxford is offering VEPTR, I'm not sure about other sites.

Basically, VEPTR is another kind of growth rod system. In some respects it is more flexible in terms of how it can be located and fitted - as in the case of Michelle's son for example. It's particularly valuable in the case of children with thoracic insufficiency syndrome because they are able to support and expand the rib cage to a much greater degree than is possible with traditional growth rods - it also makes it possible in some cases to separate fused ribs and support the separation of them while they heal. I don't know much else about it though, so I'm really not sure if its any better than standard growth rods in the case of a child such as your son with a neuromuscular condition - if I find anything out, of course I'll let you know. Generally speaking though, any kind of growth rod is a good thing, because with either a stubborn curve, or one that is unable for some reason to be braced/cast adequately, it means that fusion can be put off for a good while allowing the child to develop as much lung capacity as possible - something I'm sure will be especially important for Dylan given the UCMD.

One other thought for a second opinion if you want to get one, would be Mr Cole in Sheffield, as he is able to prescribe SpineCor - I suspect that Dylan's curve is too large, especially in light of the UCMD, to respond to a SpineCor brace, and I'm sure one of the parents who has a child using this brace (we've got a couple of in-house experts, Sealy & Gerbo, who each have a daughter in a SpineCor brace) will chime in soon to give the benefit of their experience - I only mention it because it is a soft brace, so would be the only other possibility that springs to mind other than as has been suggested to have growth rods (whether traditional or VEPTR).

andrea
21st June 2007, 01:37 PM
Hello and welcome to SSO. I'm sorry to hear that your son has scoliosis and that the brace hasn't worked to stop the progression of the curve. We too will be looking at the growth rods in the future, although Erin is currently in a cast to buy us time and growth. I'm hoping we can postpone the surgery until she is 6, but we'll see.

The last time I made enquiries of spinecor, the curve had to be under 40 degrees, but this was a while ago and things may have changed.

Welcome again
Andrea

GillyG
21st June 2007, 07:38 PM
What a gorgeous little boy you have, he must be the light of your life. :D

I'm so sorry to hear of all his problems, but glad you found this site as there are loads of members with kids undergoing various forms of treatment who will be able to help support you through this.

Just wanted to say hi and :welcome:

Gilly xx

DylansTrust
1st July 2007, 12:45 PM
Thanx for all your lovely replies.

Sorry I haven't got back to you all sooner, been having problems with the computer..:badpc:

Dylan is the light of our lives, he's a little :angel:

Does anyone know of someone with both Scoliosis and Ullrich Congenital Muscular Dystrophy, or any othe type of Muscular Dystrophy ?


Also has anyone set up a Non charitable trust fund before, do you know what to do ?

thanks again :-) :wave:

Sealy
1st July 2007, 01:09 PM
Hi,

I have a son named Dylan too! :-D If the doctors are refusing to put Dylan in any kind of rigid brace due to his muscular dystrophy I would investigate the Spinecor brace as this brace will not cause muscle atrophy and would hold his curve a lot better than the Theratog brace.

DylansTrust
1st July 2007, 01:49 PM
Thanks Sealy,

Do you have any info on the Spinecor ?

:-)

DylansTrust
7th September 2007, 05:27 PM
Sorry Folks, been very busy as of late.

Just a quick note to bring you upto date.

We went to see Dylans Spinal Specialist, on 6the Aug, he advised that Dylans curve was originally 40 degrees in Nov 05 by Feb 07 it was actually 63 degrees, now Aug 07 its 76 degrees.
They only suggested way forward is "Plaster Jacket" now until we can get thru the waiting list for spinal growth bars. According to Mr Trevedi, Spinecor or plastic brace is not an option. Spinecor is only upto 50deg and plastic would not hold the spine !

He has appointment for the 17th October to have the Jacket fitted, we are really not looking forward to it and don't really know how to position it to Dylan.

Does anyone currently have a Plaster Jacket fitted ?
How heavy is it ?
Is it durable ?

Views of anyone with experience of a plaster jacket would be appreciated. :-?

Thanks for taking the time to look.

tonibunny
7th September 2007, 06:40 PM
Hi,

As you can see in the posts above, Andrea's daughter Erin is currently in plaster casts and I wore them myself as a child. They're not as heavy as you'd imagine because they are made of fibreglass as well as plaster of paris, and they're very durable - the only thing you need to be careful of is getting the cast wet.

I'm surprised that you have to wait over a month to get the plaster jacket fitted :( I really hope that Dylan isn't on the surgery waiting list for a long time. Will Mr Trivedi put him on the surgery list as an urgent case? Stanmore seem to get kids treated at once if they really need it; I believe Erin was put in plaster within a couple of weeks after she was first seen there, and back in 1986 they had me in for surgery within 8 weeks as soon as my curves began to deteriorate quickly (and they would have seen me sooner, but Christmas was in the way!).

Obviously, from what you said about the hospital not wanting him to have a solid brace because his muscles will waste away, the less time he spends in a plaster cast the better. At least with a brace you could take him out of it for an hour a day to exercise.

Toni xx

andrea
8th September 2007, 09:18 AM
Hello, and apologies for my late reply (been on holiday). I'm sorry to hear that Dylan's curve has progressed and you are now looking at a plaster jacket. As Toni said, my daughter has been in one for just over 3 years and it's really not as bad you think it will be. There's nothing she can't do except get wet and play with sand, but it hasn't held her back at all. I don't know how heavy it is, but most (if not al) of it is now fibreglass so it's much lighter than the POP ones and Dylan will soon get used to it.

We now get the cast changed as a day case so we don't have to stay over, but for the first one it's advisable to stay a day or two in hospital to make sure all is well.

If you have any questions, please don't hesitate to ask. I'll be more than happy to help.

Take care
Andrea xx

DylansTrust
9th September 2007, 01:14 PM
Thanx Toni, Thanx Anderea.

Andrea, where in the uk is Stanmore ?

The aneastetic consultant, said that they would carry out the Plaster Jacket at Oswestry, in on the 17th October for the "Plaster Jacket operation",(put Dylan to sleep, straighten him then fit the Plaster Jacket) on the 18th October.

So we were told on 6th Aug that jacket needed doing, MRI scan done on the 10th Aug, appointment for Aneastatist on 4th September, now appointment for Jacket on the 17th October.
We thought that it had happened quite quickly?
There was 2 spinal consultants in the review, Mr Trevedi and another, both were going to put him on the waiting lists, for Stoke and Oswestry.

However there is no childrens intensive care unit @ Oswestry, so the Growth bars can only be done @ Stoke, but there is quite a waiting list.
Any ideas how we can speed this up? Is it worth tyring to find a place somewhere else? may be private ?

regards
Warren :???:

Amazed Jean
9th September 2007, 01:31 PM
Hello and a belated welcome to SSO. I'm afraid I won't be much help with the particulars of your son's case but I can offer moral support and a couple ideas. I don't have any magic to get his cast sooner but I am a firm beleiver in complaining nicely at first and somewhat firmer as needed. Which leads me to something else I tell people. You are the most capable keeper of records and general patient advocate. Try to get copies or take pictures of xrays and scans - they get lost all the time and you need a complete set as your son gets older. It is a daunting task but I suggest getting a notebook and writing all your questions and concerns as they come up. Drag the book to the doctor visits etc. You might want to jot down answers as you get them - it slows the doctor a bit but it keeps him a bit more available to you and if you are like me you'll forget some of the stuff before you get home.
All that said, I wish you much luck. That's one adorable kid you got there. I'll send some hugs and good thoughts your way.

andrea
9th September 2007, 09:21 PM
Hi Warren

Stanmore is in Middlesex, so North West London. They have a website if you think it's worth checking out - www.rnoh.nhs.uk.

By normal NHS standards, your appointments have been quite quick. We were treated within about 2 weeks of seeing the consultant (in fact we weren't allowed to take our summer holiday) as he thought there was a high chance her curve would be very progressive. It was 62 degrees at diagnosis.

Have you been given a reason why you can't be casted sooner? I can't imagine there is a long list of children waiting for casts, but then maybe they aren't done on a set day like they are at Stanmore as there aren't enough to be done. It may be worth talking to the consultant's secretary just to stress your concerns and see if he can be fitted in earlier. It's wise to make friends with secretaries :D

As for seeking a private consult, I guess there's nothing to lose apart from the money, although by the time it's all arranged etc, you may find yourself in October anyway. I don't have much experience with seeking consults etc and how quickly you could be in front of someone, so i'll admit i'm not much help on that front. Certainly a call to any of the consultants' secs at Stanmore would answer some questions and would be free. Many of them have secs that only deal with their private patients, although once you have had the initial consult and xrays it's usual practice to be transferred to the NHS lists (I think). There's a list of consultants and specialisms on the RNOH site.

Sorry not to be of more help. I know how blooming hard this scoli journey is.
Hang in there.

Andrea

DylansTrust
9th October 2007, 12:07 PM
Thanx Andrea/Jean

Sorry for the delay in responding, you know how things are !

I have been designing and updating Dylans website, www.DylansTrust.org (http://www.dylanstrust.org).
Its a steep learning curve, Scolio, Ullrich, school, cast and web building !

We have been busy raising money for the Muscular Dystrophy Campaign, managed over 700. by completing a walk at Trentham Gardens in Stoke.

Dylans apptointment is 17th October, 2 days, cast being fitted on the 18th. I am a little bit anxious about the cast, but we willknow better on the 18th.

As regards delays, we thought it was quite quick by NHS standards, they said that 17th was the first available date.

For the growth bars, we are being put on the waiting list, but the specialist nurse thinks that they want o go with the cast, so that he can grow abit more and put a bit of weight on..

We are going to compile a question list and we do try to keep all of the correspondence from all of the specialists and hospitals.

Feel Free to go and have a peek @ Dylans website, there are some photos of the MDC Walk in the news and events page.Dylans Photos (http://www.dylanstrust.org/Gallery.html)

Thanx for you support, I will keep you updated with everything

kind regards

Warren :spin:

GillyG
9th October 2007, 12:17 PM
Good luck with the casting appointment and thanks so much for sharing those photos - Dylan is absolutely adorable and very lucky to have such wonderful parents. :D

Sending hugs for Dylan ... :squeeze: :squeeze: :squeeze:

Gilly xx

andrea
9th October 2007, 02:17 PM
Hi Warren

I'm glad that you have your dates through for the cast. If you have any questions regarding them, myself and others will be more than happy to answer them for you.

Well done on raising a wonderful amount for muscular dystrophy. You must be thrilled.

The older the child is before rods are fitted, the better it would seem, which is why they probably want to try the cast first.

Good luck with the fitting. Look forward to hearing an update, and don't forget to post your questions if you have any.

Take care
Andrea xx

DylansTrust
9th March 2010, 07:05 PM
Hi Folks

We been away for do long !! You were so supportive of us that we've come back . ;) LOL

Since last speaking to you all on OCT 2007, Dylan has had 3 Plaster casts, 3 Plastic casts and is now onto his 4th.
His spine was 78 degrees 12 months ago (out of cast) it is now 80 degress out of cast. Which sounds like a very small increase, but according to our consultant puts us into the teritory of lung and heart problems.

We expected that in 2-3 years time ( aged 10) Dylan would have a definitive operation and have his spine fused. Correcting his curve as much as possible..
They are saying that teh spine is not flexible and his rib hump is more pronounced now.
I personally can t see that it is, but Dylan is really skin and bone.. So that may be why it looks so bad ?

If they Fuse his spin now at 7yrs and 6 months , how much of a stunted torso is Dylan going to have ?
I worry about the Op going wrong, words I daren't even say paralysed and not making out the otherside .
What benefit will it be to Dylan ? He is happy enough at the minute, wearing his cast. Is all the pain going to be worth it?
Consultant says that Dylan can stop wearing his cast now as he does'nt think it is helping him. If he doesn 't wear it he gets back ache though. Do we take it off and see if his spine becomes more flexible ? (Possibly making the curve worse) or do we leave it on ?

Dylan has been told that he needs to put on 4 kilos to make the operaton possible, I don't know how though. We've been trying for the last 2 years and he's only put 1 kilo on.
They have mentiioned a tube to feed direct into his stomach or possibly steriods .

So many questions my mind is spinning .. and all over the place
Thanx for your support :)

tonibunny
9th March 2010, 07:25 PM
They shouldn't even consider fusing his spine at 7 unless growth rod surgery isn't viable for him because of his other health problems. If he's not been considered for growth rods simply because Oswestry don't do them, please seek a second opinion elsewhere! You can get to see Mr Tucker (top UK consultant who does a lot of these surgeries) in London for 250, just to get his opinion. That would help you get the right treatment on the NHS.

I would be very wary of Dylan going uncast or unbraced between now and the age of 10 - even if his scoliosis is progressing slightly, the casts are surely preventing it from progressing rapidly.

A final fusion surgery will prevent growth in the fused part of the spine, so most experienced surgeons will try to hold off a fusion for as long as possible. Years ago, before growth rods were available, they used to hope a child would reach at least 10 before doing the surgery. I had my entire thoracic spine fused at 10 and don't look noticeably shorter in the body than I should do.

Amazed Jean
9th March 2010, 11:03 PM
Toni's advice is worded much better than mine woud have been but I absolutely agree. You need to have another look at Dylan. Tucker sounds like the man to do it . You may well have to pay privately but it will be worth it. I have to say it many times over. YOU are Dylan's best health advocate. If you have to raise hell to have Tucker look at him then start raising whatever. I wanted to also say hang in there. It isn't easy being a parent under these circumstances!

DylansTrust
10th March 2010, 07:31 AM
They shouldn't even consider fusing his spine at 7 unless growth rod surgery isn't viable for him because of his other health problems. If he's not been considered for growth rods simply because Oswestry don't do them, please seek a second opinion elsewhere! You can get to see Mr Tucker (top UK consultant who does a lot of these surgeries) in London for 250, just to get his opinion. That would help you get the right treatment on the NHS.


Thanx Toni

Oswestry do install growth bars but they say because of the "Rotation" they the bars would just "twist". Is that the case ?
Also because of the underlying Muscular Dystrophy and possible future respiratory problems they can only operate from the back not through the front



I would be very wary of Dylan going uncast or unbraced between now and the age of 10 - even if his scoliosis is progressing slightly, the casts are surely preventing it from progressing rapidly.


Mr Trevedi thinks that the spine is holding its own and that the brace is doing nothing ?
We do understand his concerns and he has asked for Dylans Muscle consultant to get her opinion and to "fatten" Dylan up, so that the screws dont protrude thru his back

tonibunny
10th March 2010, 09:51 AM
I don't know how Mr Trivedi can tell that Dylan's curve is holding on its own. If that were the case then large stiff curves in young children would never progress. My own curve was extremely stiff at about 80 degrees when I was ten, and had a scoliometer reading of 29 degrees (the scoliometer goes up to 30 so that was very severe), and although it stayed stable for a couple of years when I was about 8 it suddenly took off when I was 10, despite me wearing Milwaukee braces and casts. I dread to think what it would have done if I had gone unbraced. Because of the stiffness of the curve I needed weeks of halo traction to try to pull it out, and had an thoracic anterior release. Since that option is not available for Dylan, you need to make sure that his curve does not stand a chance of getting much worse.

There is another type of rod that I think is available in Oxford here in the UK. It is called the VEPTR, also known as the titanium rib, and it attaches to the back of the ribcage rather than the spine so spinal rotation should not be a problem. The VEPTR is a growth rod so Dylan would be able to continue to grow. I strongly recommend that you see if this option would be viable for Dylan even if ordinary growth rods are not - it is used for complex congenital cases with a lot of deformity so his case should not be a problem.

According to the VEPTR (http://www.veptr.com/megabbs/forums/thread-view.asp?tid=3763&posts=5) forum, Mr Marks in Birmingham and Mr Wilson-Macdonald in Oxford are both highly experienced in this surgery. Or, you could get Mr Tucker's opinion about everything - I am sure he would make sure Dylan got referred to the appropriate place for the best possible treatment. It is probably well worth joining that forum to learn more.

Good luck, and lots of love,
Toni xx

Ffion
10th March 2010, 10:37 AM
Hi

I wore a spinal jacket until 12 months ago and my mum says my curve has gone alot worse since been told not to wear it. I am also very thin & petite for my age and whatever I eat I don't seem to be able to put weight on. I use to be under Mr Trevedi in Gobowen, (but had to go in Stoke for surgery due to the intensive care) but was referred on and strangely enough, my mum eventually found my new consultant who is Mr Wilson- Mcdonald in Oxford and he is really nice. I am waiting for surgery with him now.

Good luck

Ffion

DylansTrust
10th March 2010, 03:58 PM
Thanx Ffion

Do you have a contact number for Mr Wilson-mcdonald ?
I 'm not sure how i would get Dylan refered to him. Does anyone on here know how ?


Toni
I thought that the Vepters were only suitable for curves of less than 50 degrees ?
I will have to look into it. I'm going to go and join the veptr forum.

thanx to every one.. ;)

tonibunny
10th March 2010, 04:05 PM
I'm not sure, I don't know too much about them. Vertebral Body Stapling is only indicated for curves below 50 degrees I think, so maybe you're thinking of those? As the VEPTR doesn't attach to the spine itself, I wouldn't have thought Cobb Angle mattered. Fingers crossed that I'm right and that it may be an option for Dylan.

I once met a young lad at Stanmore who had traditional growth rods despite having a 155 degree kyphoscoliotic curve with a huge amount of rotation so please don't give up, even if VEPTR doesn't look viable.


ETA I just found a VEPTR study in which "the mean pre-operative Cobb Angle was 64.7 degrees" so they would have treated patients with Cobb angles larger than 65 degrees at least.

andrea
11th March 2010, 02:41 PM
Thanks for coming back to tell us how Dylan is getting on. Erin has growth rods and has a lot of rotation, so I'm interested as to why you've been told they would twist. They can't fix the rotation as they don't attach to each vertebrae, but I have never heard that they can't be used. How much does Dylan weigh? Erin is also very skinny for her age, but it's never been a problem as far as I know.

DylansTrust
11th March 2010, 07:32 PM
Hi Andrea
Dylan weighs 18.4kg but in old money 2 stone 11lbs.
I think that we really need to get a 2nd opinion, so I need to find out the contact number for Mr Wilson-Macdonald and how to get Dylan referred to him.. :(
.

Simon
11th March 2010, 07:49 PM
Mr Wilson-MacDonald MB ChB FRCS MCh

c/o Mrs Chris Bosley

Practice Manager

St Lukes Hospital

Latimer Road

Headington

Oxford OX3 7PF



Tel: 01865 228886

Fax: 01865 744520



Email: j.wilsonmacdonald@btinternet.com

Website: Oxford Clinic for Specialist Surgery

tonibunny
11th March 2010, 07:57 PM
It would probably be much more straightforward for you to see Mr Wilson-MacDonald privately just for an initial consultation. As you don't live near Oxford, it could be a hassle persuading your GP to refer you to him for a second opinion on the NHS. However it is your right to ask for a second opinion, and as you are wanting to know about the VEPTR technique Mr Wilson-MacDonald is the guy you need to see - so hopefully they won't kick up too much of a fuss!

The standard procedure for getting a referral to a private consultant or an NHS consultant is the same - you see your GP and give him the details of the person you want to see, and he'll make the referral for you. You can sometimes self-refer but many consultants don't allow this.

Here is some info about him, including who to contact if you want to try to self-refer: Mr James Wilson-Macdonald (http://www.privatehealth.co.uk/privatespecialists/find-a-doctor/spinal-surgeons/james-wilson-macdonaldcp/)

Good luck! :)

andrea
11th March 2010, 10:33 PM
Hi Warren

I'm going to put Erin on the scales tomorrow as I don't think she weighs much more than Dylan and certainly wouldn't have done when she had the rods put in aged 5.

Good luck in whatever you decide to do
Andrea x

PS If you can make the meet in the summer it would be good to meet you and Dylan and compare notes :)

Ffion
12th March 2010, 10:36 AM
Hi

My mum went to my GP with Mr Wilson Macdonalds address and asked him to write a referral letter to him, initially we went private and Mr Wilson Macdonald said we should be on the NHS and to get our GP to write another letter to his NHS address. This was in November and I saw him on the NHS in January, had scans done in February and are just waiting now for my operation date. We live over 150 miles from Oxford.

Ffion



Thanx Ffion

Do you have a contact number for Mr Wilson-mcdonald ?
I 'm not sure how i would get Dylan refered to him. Does anyone on here know how ?


Toni
I thought that the Vepters were only suitable for curves of less than 50 degrees ?
I will have to look into it. I'm going to go and join the veptr forum.

thanx to every one.. ;)

DylansTrust
12th March 2010, 10:55 PM
Thanx Ffion

Would it be possible for you to get Mr Wilson-Macdonald's NHS address for me please ?

Thank you for taking the time to reply

tonibunny
12th March 2010, 10:58 PM
His NHS bases are at the Nuffield Orthopaedic Hospital and the Radcliffe Hospital, both in Oxford. All you need to do is give his name to your GP; you don't need any other info, he'll be able to make the referral for you just with that.

GillyG
13th March 2010, 01:13 AM
Mr James Wilson MacDonald

Qualifications: MBChB,FRCS,MCH
Where qualified: Bristol
Year of first qualification: 1978
Special Interests: Spinal surgery

NHS Practice:

Nuffield Orthopaedic Centre (http://www.specialistinfo.com/thget.php?t=t_chst&r=NUFOH1)
Windmill Road, Headington, Oxford OX3 7LD
Tel: 01865 741155
Secretary Tel: 01865 738051

John Radcliffe Hospital (http://www.specialistinfo.com/thget.php?t=t_chst&r=OXFRH2)
Headley Way, Headington, Oxford OX3 9DU
Tel: 01865 741166


Hope this helps :)

DylansTrust
25th March 2010, 01:36 PM
.Hi

I'm banging my head against a brick wall. !

Our GP says that he cannot refer us to just anyone. I have asked him to refer Dylan to Mr Wilson Macdonald. GP says that he has to refer us to some where local.

I thought under the nhs "Options" that as a patient we had the option to be treated by someone of our choice..
GP says that he wants to speak to Mr Trevedi to ask if a second opinion is required. ( Is he really going to say yes ! )


Please can anyone find the information or policy document I can present to our GP.

You help as always is appreciated..

GillyG
25th March 2010, 01:59 PM
I've worked in the NHS most of my working life and I still can't figure out how the bloomin' system works (if at all :p) There seems to be a lot of information about choosing a hospiatl and treatments, but it's harder to find anything specifically about choosing a consultant. The documents seem to suggest contacting PALS if you are having trouble getting your choice accepted by your GP. Have a read through this and see if you can relate any of it to your particular set of circumstances ...

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

DylansTrust
25th March 2010, 06:27 PM
Thanx Gilly

I've taken alook and it doesn't read well..

"If your GP refers you to see a consultant you may have a choice of a number of hospitals."

The statement above reads as a possible choice of local hospitals..

Is it just our Gp ?

GillyG
26th March 2010, 04:42 PM
I'm really not sure ... if I were you, I'd contact PALS and ask for advice, that's what they're there for ;)

Simon
27th March 2010, 04:13 PM
If you need to go to hospital to see a specialist, you have the right to choose which hospital you're referred to by your GP. This legal right, which was introduced in April 2009, lets you choose from any hospital offering a suitable treatment that meets NHS standards and costs.

You can choose a hospital according to what matters most to you, whether it's location, waiting times, reputation, clinical performance, visiting policies, parking facilities or patients’ comments.

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx

I got sent from cheshire to birmingham without any problem so either phone your local PCT or go to your gp with this link and sit there and tell him to referr you . you have EVERY right to go to hospital of your choice .. !!

DylansTrust
28th March 2010, 11:28 PM
If you need to go to hospital to see a specialist, you have the right to choose which hospital you're referred to by your GP. This legal right, which was introduced in April 2009, lets you choose from any hospital offering a suitable treatment that meets NHS standards and costs.

You can choose a hospital according to what matters most to you, whether it's location, waiting times, reputation, clinical performance, visiting policies, parking facilities or patients’ comments.

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx

I got sent from cheshire to birmingham without any problem so either phone your local PCT or go to your gp with this link and sit there and tell him to referr you . you have EVERY right to go to hospital of your choice .. !!
Thanx Simon

Excellent find.
It looks like The Legal Right was only announced in April 2009. So our GP may not be aware of it..

DylansTrust
29th April 2010, 10:15 AM
Visit to Mr T.

Well we've been to see Mr Tucker today and he says growth bars are the way forward.
The only stumbling block that we envisage is getting our GP to REFER Dylan to Mr Tucker at Great Ormond Street Hospital. As we've said before he has said that he will refer us for a 2nd opinion but that would be from a choice "local" hospitals within our PCT.

MR T was great, he says that keeping Dylan’s spine mobile for another 3 years will massive positive benefit n Dylan’s lung capacity. It is about 0.52 Litre at the minute but by correcting with growth bars, normally a 50% reduction in curve, results in an increased chest cavity. This has got to be good!

I've got an ali at our local hospital who may be able to refer us. BUt i won't know about her opinion until friday. (shes on leave at the minute). If we get no joy then it looks like a trip to our GP armed with the legal right that changed in April 2009. (not sure what the legal right is called) and wait there until or GP refers Dylan.

Warren

GillyG
30th April 2010, 12:14 AM
Good news - and good luck :D