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How many times do you see your consultant.

Just wondering how many times you see our consultant, I’ve PPMS and only see mine yearly, last year twice as he was concerned but normally yearly. I ask aside recently been fillingin dla review forms with disability rights help, the lady assisting me said hatter DWP assume if your not seen by your consultant tht you don’t need much treatment, This worried me I’ve had my award 15 years and this review is causing me a lot of stress so to be told that I was a bit shell shocked. Shemsaid there now trying to give you all the aids you may need to reduce your money! Ivenever seen N ms nurse either, well I might of once but they didn’t do anything for me, other than put me on a list for people willing to try different things for pain.

Hi Deanne I was dx in Dec 2011 and my MS specialist just said that ‘there is nothing that I can do for you, so I don’t need to see you again but will see you if you want an appointment yourself’. Thus, I feel somewhat abandoned. I hope you sort everything out in your review! Teresa xx

Thank you Theresa, my consultant is very good, and he will see me more if needs be but as you so rightly say there isn’t much they can do. I think iWas just curious as this lady I don’t think had met anyone with PPMS, mostly RRMs she said. It just worried me when she went oh you only see him once a year, in other words you need to be seen more in the eyes of the DWP? I also wondered if the DWP take into consideration our previous awards? I had my awards indefinite, this lady said that she had had quite a few people with indefinite awards being reviewed.

I am sorry Deanne I cannot help about awards as yet as have not yet reached the point where I qualify. Unfortunately, that will probably come. Why don’t you try posting on Everday Living as lots more people who are on awards will be able to help. As you say, much less is known by people about PPMS than RRMS. Hth, Teresa xx

I only see mine once a year… well twice last year as he was concerned like yours… but now back to once a year.

They can’t do anything for ppms so there’s no point in going more often. Some people with ppms get dismissed from neuro altogether!

For now DLA is the same as it’s always been and if you’ve had award for 15 years you should be ok if you fill form in same way you have before. Everything changes next year when they change is to PIP and will be much harder to get.

Good luck with your application. Make sure you let your GP know that you’ve re-applied (they’ll contact him/her) and send any letters from neuro if you think they will help with application.

Pat x

Thank you Pat, as I thought, normal, I’ve just in may seen my neuro and I’ve got my appt for next year but as im sure yours will say he tells me to ring up if I need IIV steroids, or want earlier appoint,ent. Yes I’ve had an indefinite award for 15 years, as soon as I got the review papers I asked my gp if she would do me a letter which she did so that was included.

Deanne, if your application does by chance get refused or if they put you on lower money please come back on here. Will tell you where to get best advice for appeal (and make sure you do appeal !) but hopefully you won’t have a problem.

Pat x

I saw my neuro for the 1st time earlier this year and have recieved another appointment for next year so I am guessing it is gonna be a once a year thing

Why has my MS specialist completely abandoned me when everyone else gets at least one appointment a year? Teresa xx

Awww sorry to hear that Tree are there not enough speicilists where you live? there are only 2 MS nurses in the North West where I live hugs

Thanks Jon Teresa xx

Teresa I’ve heard of other PPMSers being completely dismissed by neuro. I mean really there is no point in seeing them as there’s fu*k all they can do… but letters are useful for benefits if on them.

If I wasn’t on benefits I wouldn’t bother.

You could always ask GP for referal to another neuro as really you should have access to an MS nurse.

Pat x

I’ve never seen an MS Nurse, don’t think I’ve been offered one , they do have them though but I think it’s more RRMS that see them from what others I know with ms have said.

hi deanne

i see my neuro every 6 months and nurse calls in now and again(also have her phone+email)

dx 2yr ago with ppms and told then that have to walk with sticks

well he was right

i live in south wales and have physio weekly and monthly ms group mettings so looked after very good by nhs

steve

Thanks Pat, I have been given 'phone numbers for an MS nurse. So, could contact one if needed. If I need to apply for benefits, then I may need to see him again but for now I’ll live with it I think. Teresa xx

[quote=“nathan”]

hi deanne

i see my neuro every 6 months and nurse calls in now and again(also have her phone+email)

dx 2yr ago with ppms and told then that have to walk with sticks

well he was right

i live in south wales and have physio weekly and monthly ms group mettings so looked after very good by nhs

steve

[/quote] When first dx I was seen every six months but that was some 15 years ago and it changed to yearly although last year saw him twice. He always says to ring if problems.

Crikey, I feel hard done by as well-dxd 11 years ago, saw neuro spec once a year for about 4 years then saw ms neuro once to be told not much he could do so better to see ms nurse (if I wanted to!!). I do at least see her yearly and she’s been far more helpful than all the rest. I can also call her any time if I need to. If seeing consultant regularly is a condition of getting pip then I’ve got no chance- bye bye my motability car

Carolyn

Hi Carolyn, Nobody yet knows if it will be a condition… but I think we need to know!

Also you could go to GP and ask to be refered to neuro. It is ridiculous situation when we are having to seeing consultants in order to get a benefit we are entitled to! What a waste of NHS money!

If I wasn’t on benefits I wouldn’t bother to see a neuro… there is surely something deeply wrong with this system?

Anyway Carolyn, don’t worry yet. As I say we don’t really know anything about PIP yet.

Hope you’re doing ok,

Pat x

I see my neuro once a year and my ms nurse once a year. She usually kind of follows up what the neuro says. I have her e mail to contact her at the Southern General in Glasgow and also my neuro said I could contact her if ever I needed advice. This has proven to be an imposible task and I never manage to get through. My MS nurse has been great on the practical side of things and has advised me of the benefits which I can claim for and general advice which was really good. I have been diagnosed for 4 years and can barely walk now. Has been a very fast progressing MS. I am 56 years of age and was 52 when diagnosed. It is very sole destroying to be told that “there is nothing we can do for you with the PPMS” but surely one day there will be something and I for one will be shouting from the rooftops when this happens. Is not good that we are dismissed in such a way and deserve and have a right to be helped in every way with this type of MS. Hopefully things will improve in the near future and we can find “hope” and a more positive outlook to finding things to help people like us.