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Nhs as capped my ms treatment and advice

I have epilepsy and i went to the g.p to get a refferal for a ms consultant who could treat my ms much better now it was progressing. I was horrified when the g.p explained that due to budget my local nhs was capping in other word’s because i have a neurologist already then they wil not pay another hospital neurologist ms to see me or treat. Today i got letter explaining my g.p appealed and they asked for a costing of medicines i take and which consultant’s i see and how many times i attend then they will decide if they will fund. I am furious i never asked for ms or epilepsy or raynhaurd’s and they are now trying to work out how exspensive i am. I have had to refuse a new eplepsy drug hoping the cost reduction will help in getting a appointment with a ms consultant. Until now my g.p as patched me up and got me this far but now i need the expertise of an ms consultant. As anyone else having this problem. Please reply i stumped i don’t now how to tackle this.

Hazexx

Hi Haze,

I too am a bit stumped by this… Have you ever seen a Neuro about your MS or ans MS nurse???

Char

xxx

Hello char i go ms keep fit classes and see a ms nurse there and at the g.p but were i live there is a routine

first you apply for referral to a ms consultant

then if successfull you get an appointment

then there ms nurse call’s you to also make a visit to how they can support and help with your care

Last i have hope hopsital for epilepsy and it’s rochdale i need for my ms and each one as there own budget

My problem is my epilepsy consultant won’t do the refferal as this would cost the hospiatl money as the ms consulatnt is at another hospital so my g.p as had to apply for funding to get the refferal as it is coming out of the g.p’s budget and i live in oldham which is again a different nhs budget sorry it’s complicated i will answer anything else

Hazexxxxxx

Hello char i go ms keep fit classes and see a ms nurse there and at the g.p but were i live there is a routine

first you apply for referral to a ms consultant

then if successfull you get an appointment

then there ms nurse call’s you to also make a visit to how they can support and help with your care

Last i have hope hopsital for epilepsy and it’s rochdale i need for my ms and each one as there own budget

My problem is my epilepsy consultant won’t do the refferal as this would cost the hospiatl money as the ms consulatnt is at another hospital so my g.p as had to apply for funding to get the refferal as it is coming out of the g.p’s budget and i live in oldham which is again a different nhs budget sorry it’s complicated i will answer anything else

Hazexxxxxx

Blimey Haze…

I’ve never heard of anything like this… It’s quite scary… Is this the start of things to come I wonder!!!

I’m so sorry I have no helpful advice I just assumed we all had similar experiences in that we get diagnosed with MS and we get to see a Neuro and MS nurse… I could kind of understand it if the Neuro you see for you epilepsy was able to talk to you about your MS at the same time but it’s almost like you’re having to choose which health condition is more important to you… Crazy…

Char

xxx

How awful for you but then ‘We’re all in it together’ don’t forget!

Really hope you get this sorted Hazel; you could try contacting PALS but then I’m not sure if they still exist?

Good luck

Love Wendy

x

Hi Hazel, This doesn’t make sense to me. Lots of people have more than one condition, or a complex condition, and are therefore in the care of more than one specialist. I’ve never heard of this business where if you already have one, you can’t have another one. If this is indeed the case, perhaps you need to get your MP or the local press involved? When I was diagnosed with MS, I automatically went on the books of an MS specialist (the same one who diagnosed me), and have an annual appointment with him. OK, it’s not much, but at least there’s a chance to review how I’ve been, and see if any new interventions are necessary. I don’t know why you haven’t had the same. I don’t see what difference having epilepsy should make! I know a lot of people have an MS nurse, but I’ve never had one, so I know that’s NOT automatic, everywhere. Tina

i had similar problems with getting the right drugs to treat stomach acid, I went to mmy local MP, after this I had no problems , so find out who your MP is?

If you have some of this in writing I would send a letter to your PCT and wait for reply then send another letter to PCT
saying your taking this to a bbc researcher.

My GP few years back said the PCT was cutting back on glucose strips and I’m only allowed 50 per month, so I said to GP
hmm I’m ment to test 4 times a day and before long car journys the numbers don’t add up, he said I have to have better control.

So I phoned PCT and asked for head pharmacist and she was nice and understanding but I also emailed PALS (attack from both sides)
and said in a long polite way that this stinks and if I hypo while driving then they would be liable.

I got a phone call a day later saying there is no restrictions for a type 1 and your GP has got it wrong and they would ring him,
I asked to put this in writing which the PCT did.

I would just kick (Y) everyone is enitled to a specialized consultant.

Good luck

hi, I think my b***y gp surgery is penny pinching as well with certain medications,

it happened a few months ago, I take treatments for my restless legs I take 2 x 3 times a day, ordered them with couple other things paracetamol being one of them asked chemist to deliver as I run out that very afternoon, took delivery of paracetamol nothing else, I thought OH NO what am I going to do, I phoned the gp surgery was told you have enough left I said no I take 2 x 3 times a day she asked me who told me that I told her neurologist at hospital,

she its on here 1 x 3, I said to her I’ve got non left so I need a script asap, so after a few days went to see gp to give me more on script as I’m always running out, in time I want to come off them buyt now is not the time I will have to wean myself off them and not suddenly stop them.

so I think its happening all over the country, we can all thank for this coalition gov for this happening benefits being cut and name changed dla being changed we have enough to contend with this is just another thing to deal with.

Al s

Hi Haze, can I ask why the neurologist who treats your epilepsy can’t treat your ms too? Do you mean that you want to see a neuro who specialises in ms and he doesnt work in your area. When I was diagnosed I just saw a neuro and he diagnosed ms , no idea what if anything he specialised in so I am struggling to unerstand why yours can’t deal with both conditions. Cheryl:)

Hi again, you say hope hospital treats your epilepsy and you need rochdale for ms, why can’t the same hospital treat both, are you saying that hope hospital doesn’t treat ms and rochdale doesn’t treat epilepsy but this doest explain things either since you already have a diagnosis and an ms nurse, I wonder who the nurse works for then and where you were diagnosed. Cheryl:)

I’ve not heard of this before, it beggars belief…

As others have said I would contact PALS, my MP, anybody that might be able to help

It might be also be worth giving the MS Society a ring 0808 800 8000 to see if they can help or know a way to get this sorted

Good Luck!

Hi ladies

i contacted my local ms group for advice and they confirmed due to budgets some areas in the uk are capping treatment in other word’s not allowing the more moderen treatment and make you put with what you have. I also found other’s in the oldham area having the same problem. The reason why my epilepsy consultant wont refer is the hospital makes no money so if the g.p does it then it’s the doctor’s budget that’s effected not hope’s. My epilepsy consulatnt is allowed to refuse to treat both ms and epilepsy if he feel’s that the ms is treated and managed better by a speacilised ms consultant and again my g.ps budget is hit for doing a referral if i can upload the letter’s i will do i think this is a outrage i would go further but ill get into trouble bloody england david cameron is true plonker in all sense even now he’s hitting the disabled benifit why not just give us a gun and pull the trigger are such a pain in the arsh to your budget. ARGGGGGG money bloody money

Hazexx

Hope (or Salford Royal, being proper) covers my area as well, but fortunate not to have started any treatment as yet. I blame the merging of facilities through the Greater Manchester Area, reducing services in Oldham, Rochdale, Bolton and Bury (West Pennine) so each area is trying to ring fence their own budget!

Hi Haze, really not much else I can suggest, what does the ms nurse say? Cheryl:)

hi guy’s i thought i would explain more clearer under the government cut back’s this is what is happening

Hope hospital dont make money for referals internal and pay for external and would have to pay for my ms treatment

then im sent back to my g.p who as to pay rochdale for the ms referral and treatment at hope which is funded by oldham not hope.

next headache oldham wont fund even though they run rochdale there is one big pot split between three sites bury rochdale and oldham

unfortunatley cut back’s mean’s im powerless ive just got to keep shouting and here is what is crazy all ms treatment med’s is done by salford royal but funded by oldham if lucky.

hazexx