Access to biologics in different CCG

Hi all!

It has been a stressful few months selling-up and looking for somewhere to live on the other side of the country. And it still is stressful! But it would seem that the end is in sight and we should be moving within 6 weeks.

At the moment I have a really good rheumy and he is based in a neighbouring county and therefore a different Clinical Commissioning Group. At the moment my county's CCG funds my Humira. And it all goes smoothly because, as my rheumy tells me, his hospital has established links with this CCG. Of course my GP is part of the jigsaw and blood test results etc. are relayed to my rheumy without problems too.

Seeing how hunky dory everything is, I initially assumed that I could simply stay with my current rheumy when I move and that he'd make a new application for Humira funding from the CCG I end up in. There would be a lot of travelling involved but I don't mind that.

However ..... I've been discussing this with the helpline nurse and my rheumy. They think that a new CCG which they don't have links with might refuse to fund Humira unless I see a more local rheumatologist. Okay .....

Reluctantly, very reluctantly, I'm resigned to the fact that as soon as I move I will have to ask my new GP to refer me to a new rheumatologist. BUT .... I've been speculating about timelines ..... I have 5 Humira shots in the fridge, that takes me up to early October (there's no way I can get any more, believe me). If I move in a month's time, see a new rheumy 2 months later, he or she applies for Humira funding and gets approval within 2 months, well that takes me up to Christmas!

I really fear what would happen to me without Humira, it doesn't bear thinking about. Perhaps when I explain the situation to a new GP I'll be referred to a new rheumy within weeks. Because presumably I'm not the first person on biologics to move to a different CCG so there must be some provision for continuity of treatment .... mustn't there?? Hmmm!

Anyone else been in this position? I could do with hearing your thoughts / suggestions. Thanks in advance.

[helixhelix]

Yikes! Have you spoken to NRAS helpline about this? They may have experience too. And if you know exactly where you'll be can you make first contact with new GP now to speed up the process?

I don't use biologics, but I admit to a touch of deception in my recent house move as I started process with new GP/rheumy way before I told old one I was moving.

No doubt the theory & guidelines are in place for this sort of thing, but I share your scepticism about whether this will work smoothly...good luck!

[Hidden in reply to helixhelix]

Thanks helixhelix! I'll try the NRAS helpline, good idea. We're 90% sure where we'll end up but this whole moving house thing has been so fraught with difficulty that I can't be certain. When contracts are safely exchanged I will perhaps try to contact a new GP. But it's miles away so of course I'd prefer to get there & try to at least get a local recommendation though I'd have to ask around straight away.

It seems to me that this could be a big loophole in the system but I hope not.

[cathie in reply to Hidden]

Is there any way your current rheumy could authorise you getting enough Humira to take you up to Christmas? I've been experiencing long gaps between biologics due to surgery and it aint funny. And I'm not convinced that they work as well after the gap either. Moving is hard enough without this kind of thing.

It must be possible - it was about 8 years ago now, but when I moved from England to Scotland my treatment was seamless, and NHS scotland is a separate organisation to NHS England. The only glitch came when a new rheumy queried my diagnosis and I should've demanded a second opinion immediately!

Hope you sort things out and that the move goes well.

[mirren]

Cathy is right your current rheum must make provision for you to continue treatment and should be referring you to another rheum to expire everything. You are already on the meds should be no break in treatment.

[Hidden]

Very interesting Cathie & Mirren. So far I've taken everything my current rheumy and the biologics' nurse have said as gospel. These people have earned my trust and then some.

However you are both suggesting that my current consultant should be able to ensure continuity. I will be on the phone to them on Monday morning!

There is the question of 'who pays?' I'd assumed that the CCG where I am now wouldn't fund treatment for someone living in a different CCG. And conversely that the new CCG wouldn't start processing an application for Humira until I actually live there .... but as you say Mirren, my rheumy could refer me to a rheumatologist in the new area.

Anyway, regardless of the detail I've taken on board that I need to pass this particular buck back to my current rheumy department. Awesome input, thanks so much both!

[Birthdaygirl in reply to Hidden]

Hi Postle 2

interesting timing for your post. Snap!

I too am waiting to exchange contracts and move away from my current area. I am on weekly enbrel injections.

At my last appointment with the consultant about eight weeks ago I asked for his advice as to whether I could move to another area without prejudicing my treatment because if there was a problem I would not be able to move. I also asked for his help with the medical part of the move to another area.

He said there would be no break in my treatment with enbrel and asked me to let him know when I had exchanged contracts and had a name of a new GP practice. I got the impression he was either going to recommend a hospital for my future care or write to the new GP or both.

He also confirmed there would be no sudden end to my deliveries of enbrel and this situation could go on for months until transfer to another hospital/ccg was in place. Apparently My current ccg would pay until things were sorted. He said the rheumy nurse would deal with the change of delivery address and paperwork for the delivery company. He emphasised to keep them informed as and when there was certainty.

As we all know there is no certainty until the key is in our hands! But I will let the rheumy and nurse know as soon as contracts are exchanged.

I have to confess to a little anxiety over it all but hopefully we will both get there in the end!

All the best for your move and all the best with the chats with your hospital team on Monday.

Best wishes

BG

[Hidden in reply to Birthdaygirl]

Thanks for replying Birthdaygirl, that is so helpful!

I'm quite cross with my rheumy team right now as you can probably imagine. But hearing how your rheumy has outlined the process means I can get back to mine and ask for his dept. to instigate similar arrangements. Gotta dash now but I may be back to ask a question or two perhaps .... but thanks so much.

And good luck with the move and the Enbrel continuity! Just surviving buying / selling / moving with inflammatory arthritis has to be cause for celebration I reckon!

[Ali_H]

All I can add is good luck with the move and change of practitioners... Hopefully it will go smoothly but I suspect you'll have to do some phone calls to ensure that it does!

All the best

Ali

[Hidden in reply to Ali_H]

Thanks Ali! The phone will get good use, your are right there!

[moomie]

Good luck with your move Postie. Sorry I have no experience with biologics.

The only thing I can think of is so you know which hospital trust you will be using. If so maybe ring their PALS to see if they can offer advice, or at least they should be able to look in to it.

Good luck, I hope things go smoothly for you. Added stress is not needed.

[Hidden in reply to moomie]

PALS might be a useful lead, thanks moomie.

Like Cathie I don't think a stop, start approach to biologics is a good idea at all. I'll do everything I can to prevent that.

[helenlw7]

I would love to know the answer to this too as we are planning to move next year and I was hoping to keep the same rheum you.

[Hidden in reply to helenlw7]

I'll let you know what I find out next week. This must be something many people go through.

[helenlw7 in reply to Hidden]

Thanks

[Hidden]

Hello, a bit of feedback ....

It's not great news. I managed to get hold of the rheumy nurse this morning. She says that the CCG I'm in will NOT fund my Humira to tide me over between moving and seeing a new rheumatologist etc.

However she did say that the GP I sign on with when I move should make an urgent referral for a rheumy appointment, in order to ensure continuity of care. And also that when a patient is already on treatment and needs funding for a biologic from the same CCG in which their new rheumatologist is based then a new application should not be required.

There are a lot of 'shoulds' in this rather than the certainty I'd prefer. A lot of things should happen but a lot of things could go wrong. I'm really not impressed. I'm going to phone my current CCG to confirm with them that they won't fund my Humira till another CCG takes over. if I get the same information from the horse's mouth I will doubtless express my displeasure.

[mirren]

I am so surprised to hear this and disappointed. I work in HIV care as you know and the drugs are hugely expensive but our patients can travel around the counrry for work, forget their meds, leave them on buses and we would NEVER leave them to do without, even scottish or welsh or overseas patients can access emergency treatment across uk. We try to confirm they are on the meds but never risk anyone having an interruption in treatment

[Hidden in reply to mirren]

I'm surprised too. The rheumatology team I'm with at the moment have always been efficient, skilful & caring. They've willingly gone the extra mile to give the best care, for example when I had a psoriasis flare up my rheumy communicated regularly with the dermatologists in a different CCG and it was he who eventually came up with a theory as to why it was happening that proved to be the answer. So therefore I can't imagine that they're wrong on this.

I guess it'll all come good. But meanwhile I really appreciate your response, it helps somewhat. This seems like a loophole that makes a bit of a mockery of the 'National' bit of NHS.

[mirren]

I hope something sorts out but its definitely one to kick up a fuss about. I would be calling my MP and demanding to know why your CCG wont do what others do. This should not be happening nowadays. If your disease wasnt controlled you wouldnt have the strength for this! X

[Hidden in reply to mirren]

Well yes, your last response made me think I should be doing something more & you've underscored that. Thanks!

The whole selling / buying / working out how the hell to relocate milarkey has demanded a lot of phone calls and also a lot of thinking - ouch! And I guess that's my excuse for not having followed up beyond the rheumy dept. as yet.

But now I'm thinking I'll start this afternoon by contacting a GP and see what they say. And depending on what they do say, probably CCG then MP.

It is bad isn't it? I'm struggling to imagine my own worse case scenario with this because obviously I don't really want to go there. But someone whose disease was flaring / more disabling / poorly controlled could be very seriously affected by a gap in treatment.

[mirren]

Please let us know how it goes, it will be useful cor others later no doubt. Good luck witn move and hope your new home and hospital are fantastic xx

[Hidden]

Thanks mirren, will do! I've fallen into a wormhole I didn't know existed so I'll either be shouting about how to get out of it or how bad it is being stuck!

After months of getting nowhere fast, suddenly it's all systems go. So I'm wide awake at 2a.m. pondering life's great questions such as where to put the toaster in my new kitchen. And still haven't started the phoning. But at least now I'll be able to state exactly how long my supply of Humira will last .... or to put it another way, when it will run out.