First NHS appointment tomorrow

andylambs

As planned most of our family is now in the UK (moved from US). I managed to get 8 weeks supply of Enbrel out of the insurance company before we left the States.

P's first appointment with her new GP is tomorrow. I'm assuming that he'll refer her to a rheumatologist of some variety, although she's in medication controlled remission right now we want it to stay that way.

I'm feeling pretty apprehensive about it. I have most of the last year's worth of medical notes with us. Stupidly I left the optomatrist's notes in the US. They'll be here in early September. But even fully prepped, I'm worried that the NHS will object to giving Enbrel to a child with no active arthritis.

I'll post once tomorrow is over.

illihor

Good luck I hope everything goes ok. Surely if you've got medical notes showing what else has been tried then hopefully they will listen to that. Also hope the referal for paed rhuemy comes in soon. I don't see why they wouldn't continue her current course of treatment like you said it's only the meds that have drawn the remission they can't just stop things.

Michelle

dreamdaisy

Isn't the whole point of the enbrel to render the arthritis inactive? On that basis it's working so how could they refuse? Ah yes, I forgot, you're in England now. The NHS is one of the greatest blessings this country has, and sometimes one of its greatest irritations. I will keep my fingers crossed for you all. Good luck. Dreamdaisy

speedalong

Hi Andy, hope all goes well with the appointment and obtaining a script for the enbrel.

Speedy

illihor

How did it go today? Hope you got the answers you were looking for

Michelle xxx

andylambs

Thanks for the good wishes everyone. The appointment went well. I feel like we're just jumping through the NHS hoops at the moment.

Our new GP is very pleasant; I think I’ll get on well with him which is a huge bonus.

I basically talked through Philippa’s history: all the flares, all the joints, all the steroid injections, the different medications tried, the effects of the different meds, the few areas of permanent damage (she’s never going to be a hand model!) And then I explained that my major worry was that the NHS wouldn’t keep her on Enbrel because of the cost as she’s in remission at the moment. He was reassuring: “It would be a very brave person who tried to take her off Enbrel after all she’s been through when it obviously works for her”

He doesn’t have any other patients on Enbrel at all. So he’s reading up about it too. Is Enbrel that uncommon? I’m not surprised he doesn’t have any other JIA cases, but what about adults?

He’s referred her to the local hospital. He told me that our local hospital has two paediatricians on staff one of which deals with the rheumatology cases, but that that particular doctor was on a long leave at the moment. But he’d refer her and we’d see what they did.

He later phoned us to let us know she’ll be seeing a local rheumatologist who deals with adults as well as the children at the moment. We should be getting an appointment through within the month. I don’t know what to expect next. Will this local specialist refer her to a pediatric rheumatologist at a regional centre? If she has a flare and needs more joint injections I’d feel much happier knowing it was being done by someone who’s dealing with children’s joints all day.

I realize I’ve been spoilt in the USA with one of the biggest Children’s Hospital practically on our doorstep with a big pediatric rheumatology department which is doing a lot of research.

So it’s mostly good news, but I’ll feel happier after seeing the next level of the NHS

illihor

That's good to hear that you've been listened to and referred. I don't think it's that common for a child to be put on enbrel. Kayleigh's consultant has mentioned this drug to us and gone through all the pros cons etc but says that it's not widely used as they like to try other methods first. We've just had to have a blood test for her before being put on (if this goes ahead). Then it has to be delivered to us every 4 weeks direct from the manufacturers

I've had to sign a waver letter for her to go on the drug, so yeah my guessing is it's not commonly given to children. In the whole of Plymouth she'll be the 3rd child (from my understanding) on the drug or at least the 3rd child her community paed nurse will have to administer with it, there might be others out there on it but family are injecting.

Our local hospital has a rheumatology unit and there is one paed rheumy who is on mat leave so we are seeing a paed who has specialised in it but it's not her first job if you get me. We have been referre to Bristol Children's hospital who has a specialist paed rheumy unit this is where we have just gone for steroid injections. They are fantastic up there.

Hopefully you'll get seen soon. How much of the drug do you have left as only a consultant can prescribe it over here and you certainly don't want to be left without it.

Well done on getting over this first step and good luck with everything else.

Michelle

andylambs

Thanks Michelle, that’s very reassuring. From your experience I’m guessing she will be referred on to a regional pediatric rheumatologist.

We have another 7 injections with us. I managed to get 8 weeks supply when we left. Flying with a medication filled coolbox is always entertaining. We inject the Enbrel ourselves. Saturday is injection day and I'm always glad when it's over. We learnt to do injections when she was on Methotrexate. The process is slightly different as we mix the Enbrel ourselves, but it's not really complicated - and they certainly give you enough documentation about it!

For us Enbrel has been the "magic bullet". All the NSAIDs and methotrexate we went through for 3.5 years did not completely suppress the arthritis so she continued to have flares, but it also affected her liver function. Being told your 6 year old has the liver of a 40 year alcoholic is never a good thing. I hope it works just as well for you. Let us know how you get on.

The rheumatologist in the States once told me that they had 1% of their patients on Enbrel. So three children being on Enbrel in your area is probably not that different from the numbers in the USA.

Cheers,
Andy

agslegs

andylambs wrote:

Thanks for the good wishes everyone. The appointment went well. I feel like we're just jumping through the NHS hoops at the moment.

Our new GP is very pleasant; I think I’ll get on well with him which is a huge bonus.

I basically talked through Philippa’s history: all the flares, all the joints, all the steroid injections, the different medications tried, the effects of the different meds, the few areas of permanent damage (she’s never going to be a hand model!) And then I explained that my major worry was that the NHS wouldn’t keep her on Enbrel because of the cost as she’s in remission at the moment. He was reassuring: “It would be a very brave person who tried to take her off Enbrel after all she’s been through when it obviously works for her”

He doesn’t have any other patients on Enbrel at all. So he’s reading up about it too. Is Enbrel that uncommon? I’m not surprised he doesn’t have any other JIA cases, but what about adults?

He’s referred her to the local hospital. He told me that our local hospital has two paediatricians on staff one of which deals with the rheumatology cases, but that that particular doctor was on a long leave at the moment. But he’d refer her and we’d see what they did.

He later phoned us to let us know she’ll be seeing a local rheumatologist who deals with adults as well as the children at the moment. We should be getting an appointment through within the month. I don’t know what to expect next. Will this local specialist refer her to a pediatric rheumatologist at a regional centre? If she has a flare and needs more joint injections I’d feel much happier knowing it was being done by someone who’s dealing with children’s joints all day.

I realize I’ve been spoilt in the USA with one of the biggest Children’s Hospital practically on our doorstep with a big pediatric rheumatology department which is doing a lot of research.

So it’s mostly good news, but I’ll feel happier after seeing the next level of the NHS

Hi Andy

Welcome to the UK. Sorry to hear about your daughter's health issues. I know you are new to the NHS so you are just finding your way through. We do have something called NHS choices. This means you can ask your doctor to refer you to any NHS specialist/hospital you want to go to in the country. I am sure you will be happy with the rheummy that your GP has referred you to but should also feel free to do your own research if you want to and find a rheummy who also specialises in children. http://www.nhs.uk/Pages/HomePage.aspx

Good luck

Ags

andylambs

Thanks Ags, that's really good to know. Especially as right after posting my last update i spoke to the consultant's secretary and she tells me Philippa won't be seen until September at the earliest. So I'm now worried that we'll run out of Enbrel before the appointment.

They only have one pediatric rheumatology clinic a month. Really?!

illihor

andylambs wrote:

Thanks Ags, that's really good to know. Especially as right after posting my last update i spoke to the consultant's secretary and she tells me Philippa won't be seen until September at the earliest. So I'm now worried that we'll run out of Enbrel before the appointment.

They only have one pediatric rheumatology clinic a month. Really?!

I can well believe that it's the same at our local hossie one clinic a month, hence why she was referred to Bristol (plus the covering consultant couldn't deal with how bad she was )

Yes I've had the speal about enbrel being made up and stored in fridge etc, been given lots of info and have to collect a pack from our rheumy nurse once she gets some more in. I can't give her the injections myself, she doesn't like it at all and I need to hold her down so we have a paed nurse coming out to give it. They have said they will keep her on methatrexate as well as enbrel.

I think I would go back to your gp and explain you've had a phone call from cons secretary to say she won't get seen till September and this isn't acceptable as you will run out of enbrel by then and can't take that risk of her having a flare up/getting ill again, especially as she'll be starting a new school in a new country you don't want a flare on top of that stressful situation. Ask if you can see the specialist unit in your area, or perhaps do some research as to where the best/nearest one is for you and ask for a referral there.

All it will take is a consultant to write the script up and inform the company as they then deliver a months supply at a time direct to your house (at least that's how it's done down here). I've been told that once it's been decided then a nurse from the company will come out and give a discussion/show n tell type thing about the drug how to make it up and inject it but as we have a nurse do hers she'll have to be there too. Hopefully you won't have to go through that bit but it might be protocol and they will do it regardless as to them you will be a new patient even though used it for a long time.

Good luck and I really hope you get somewhere.

Michelle

andylambs

Thanks again Michelle. I've spoken to the GP, he tells me not to panic and if he needs to speak to the consultant he will to make sure we have enough medication.

We also have one more month approved in the USA, so I'm considerign getting that shipped to us. A friend is hopefully coming over at about the right time. So at least I have some options

Sorry to hear that injections are such an ordeal for you, that just makes it all so much more traumatic. This is probably a daft question, but have you tried the local numbing cream 20-30 minutes before a poke? It works better for blood draws than injections but it certainly helps a bit; it's better than nothing. We use a lidocaine/prilocaine cream and wrap it with cling film before a jab.

illihor

andylambs wrote:

Thanks again Michelle. I've spoken to the GP, he tells me not to panic and if he needs to speak to the consultant he will to make sure we have enough medication.

We also have one more month approved in the USA, so I'm considerign getting that shipped to us. A friend is hopefully coming over at about the right time. So at least I have some options

Sorry to hear that injections are such an ordeal for you, that just makes it all so much more traumatic. This is probably a daft question, but have you tried the local numbing cream 20-30 minutes before a poke? It works better for blood draws than injections but it certainly helps a bit; it's better than nothing. We use a lidocaine/prilocaine cream and wrap it with cling film before a jab.

Yeah she has "magic cream" before bloods but she spends that whole half hour working herself up to it. I've asked about the cold spray for injections but our nurse doesn't think it's a good idea and after seeing how she reacted to cold spray for bloods once I would rather not lol. She gets upset as she sits on my lap ready cries soemtimes screams at it being done then within 5 mins calms down but yes she gets mega upset over it all. I don't think it helps that the last few injections have stung her too and before that the nurse was doing it so quick to try and help it was scratching her on the way out 3 times this happened so I've told her to go slowly now.

It's good you have a back up plan if push comes to shove, well done on being so thoughtful and fighting for you daughter

Good luck

dreamdaisy

Hi andylambs, I spotted your name and that prompted my memory about you and your daughter. If you have another month of enbrel due from USA then go ahead and get it. You know it works for her and these things in this country are not guaranteed. I'm on my third anti TNF, having failed on infliximab and enbrel, and I know that I am very fortunate in having a consultant who really pushes things to the limit to get me these drugs. (The usual rule at my hospital is one go and one go only.) I hope you are all OK apart from the on-going battle to subdue this god-awful disease. DD

bluelobster

andylambs wrote:

Thanks Ags, that's really good to know. Especially as right after posting my last update i spoke to the consultant's secretary and she tells me Philippa won't be seen until September at the earliest. So I'm now worried that we'll run out of Enbrel before the appointment.

They only have one pediatric rheumatology clinic a month. Really?!

Hello Andy,

Just thinking this hospital they have referred her to, is it some sort of community hospital? i'm thinking it is given the fact there are only two clinics a month? Just to reassure you, if they are seeing kids then they will be peadiatric trained. However, over here it is more the type of disease which determines a consultants specialist area rather than age if that makes sense? The other thing is, if it is a community/district hospital you may get a better deal. usually these operate as satellite clinics from the nearest large specialst centre. Therefore, you are more likely to see an actual consultant. Whereby, if you were referred directly to the specialist centre you run the risk of not seeing the consultant but maybe seeing his registrar!! Even though this is necessary from a teaching point of view, it can slow things down a little as they aren't always comfortable with making certain decisions.

There is no way your GP will let her run out of meds don't worry. He will just hold off until the last minute as there is a chance you may get seen before it runs out and then he might not need to pay for it!

Welcome to the NHS!

andylambs

Thanks bluelobster. I will wrap my head around the intracacies of the NHS. I will. I will.

How you to work out what sort of hospital they are? We're going to Basingstoke. I don't think it's a community hosital as their website says the community hospitals at Alton are covered by Basingstoke?

According to www.printo.it the 3 closest pediatric rheumatology centres would be London, Oxford or Portsmouth. It's all very confusing, but I'll get it eventually :-)

bluelobster

Hi Andy,

i'm sorry i have not been on for a bit. i have had knee surgery so am recovering.

I have just had a look and it looks like Basingstoke and North Hampshire NHS Foundation Trust has quite a well established MDT Rheumy team and has a specialist peadiatric rheumy - Peter Prouse - his he the one on leave i wonder? Anyways it looks like this is the place you need to be but i still don't quite understand the non-frequency of clinics. Maybe its the frequency of his clinics that is the thing? The reason i say this is it looks like he is the top man and as a result has alot of private clinics and other commitments (such as chairing various groups/comittees). He may also do alot of teaching. If he is off at the moment it may be putting pressure on.

The other thing is this is what we call "silly season" in the nhs whereby everyone buggers off on holiday at the same time (july,august) so the whole place grinds to a halt.

I know it must be hard for you, we have friends in NY and we are always joking. I can't imagine havinng to pay for treatment but i can imagine relishing in the peace of mind that you know what you are getting!

Anyway let me know how you get on.

andylambs

Thanks again Bluelobster. It's great having someone here who can explain the NHS shenanigans.

It is Dr Peter Prouse that we're seeing. I spoke to his secretary this morning about the Enbrel situation and possibly running out of it. She assures me it will be fine. He has already spoken to the hospital pharmacy; I'm assuming that means they'll have Enbrel available for us at the appointment.

Just to add to the fun and games we had a dodgy needle in the last injection pack so I had to start again with a new one; so we're an extra week short. I reported it to the US Enbrel help line and they've supplied a replacement but it's in the USA. Just as well I've got someone coming over who can bring it with them!

dreamdaisy

Hi andylambs, 'tis I, DD. It has just occurred to me that this info might be useful for you. When I was on enbrel it was delivered to me, at home, by a company called Healthcare at Home. My rheumatology department use this organisation to deliver such meds to patients who are in charge of their injections. I now have humira delivered by the same group. I hope all is as well with your daughter as it can be. DD

andylambs

Hi DD. That's worth knowing. As we do the injections ourselves I guess it will be the same for us. I'll find out on the 22nd Sept.

How's the Humira working out for you?

illihor

Ours will be delivered not sure on the company yet. We have a district nurse do Kayleigh's injections but still her enbrel will be delivered to our house every 4 weeks.

dreamdaisy

Hi andy. It's working inasmuch as my inflammatory markers are at 5 and 1, and have been for over a year. The pain has not altered however and the arthritis continues to both flare and spread. DD

andylambs

Eeek, DD, that's not good at all. Do they expect it to start doing something better than that, or is that what's expected? It sounds horrible to me.

Michelle, does yours have to be kept in the fridge? I presume it does as ours does. If you're anything like me you'll be sanitizing the fridge before the first delivery. My husband kept insisting that if the fridge was clean enough for food it was clean enough for sterile packed medication - but that didn't stop me!

dreamdaisy

I kept my enbrel in the fridge, as with the humira - both are kept at between 2-6 degrees (I think!). They sit/sat on the middle shelf, towards the door side of the shelf as they could get too cold if pushed to the back. I keep it all together, in the packaging, with a fridge thermometer on top (which I occasionally check). You won't need to worry too much about the cleanliness fo your fridge: I'm sure it's fine!

The humira has done what it is meant to do: reduce inflammation levels. This is the best antiTNF for me so far, in that my figures have been so good for so long. DD

illihor

andylambs wrote:

Eeek, DD, that's not good at all. Do they expect it to start doing something better than that, or is that what's expected? It sounds horrible to me.

Michelle, does yours have to be kept in the fridge? I presume it does as ours does. If you're anything like me you'll be sanitizing the fridge before the first delivery. My husband kept insisting that if the fridge was clean enough for food it was clean enough for sterile packed medication - but that didn't stop me!

Yes it has to be kept in Fridge. Just had Bupa call me today to arrange delivery (on wednesday) for first lot then on a Friday every 4 weeks. We will be sent two viles a month each one has enough for two doses (that's all her weight recommends is one injection a week not ttwo) In the first pack to be sent we'll also be sent an additional backup vile if for any reason it needs to be used to we'll have an additional two weeks supply all the time. I'm now waiting for Bupa to call our community nurse to arrange the first injection and demonstration etc.

I'm going to have to keep it on the top shelf in ours as I have a very young family and can't take the risk of any of them especially the baby getting a hold of it.

Michelle xxx