Cost-cutting in the NHS

[Central79]

Hey

My clinic (Mortimer Market Centre) informed me at my last visit that I would only be having my VL done once a year from here on in, I assume that's until I start taking meds.

I'm not sure if I'm totally comfortable with that. I've also heard reports of doctors delaying the start of people going on meds until the new financial year, in order not to break the drugs budget any more than it is.

Clearly, the loss of ring-fencing for HIV money means its being diverted to pay for deficits elsewhere in the NHS system. I'm beginning to worry about drug rationing and the closure of clinics. I'm interested in what experiences other people based in the UK have had...

What say ye?

M.

[keyite]

I read about that somewhere (I think it's in the latest copy of Positive Nation), but I understood the cost-cutting measure would only apply to those stable on meds and those who, together with their doctor, agreed to the longer interval. I did not understand it to be compulsory.

Have you considered joining the Patient Network at your clinic? There's also a part-time patient representative attached to the Mortimer Market who might be able to help you:
http://www.camdenpct.nhs.uk/PAGES/go.asp?PageID=680&Path=8&Parent=664.0695&Instance=711
http://www.positivenation.co.uk/issue123/features/feature1/feature1.htm

Personally I think we need to be vocal about preserving service standards!

[newone]

I was asked to have my pills delivered at home instead of picking them up at the clinic s pharmacy, apparently using this method the NHS saves money (??). (gladly accepted the offer)
I have been stable for a while with the combo I have been talking and the relevant cd count, even though I (really) hate visiting the clinic every 4 months and prefer a phone consultation they have insisted for me to attend and chit/chat with a different doc. every four months, finally today they have agreed with my wish to have a phone consultation for my next check up in four months time.

[Central79]

That's right - if you get med delivered to you at home you save the NHS the 17.5% VAT.

I read the article today in Positive Nation. I don't think it's limited to people on meds now. I think it's going to affect the management of people who aren't on meds, like in my case, and also affect the meds I might be offered as first-line therapy. The article gives an interesting example in combivir, which contains AZT and which is not recommended by the British HIV Association (BHIVA) as first line treatment because of lipo. In practice in continues to be commonly prescribed, largely because AZT is off-patent (and cheap) now.

I also think it's affecting things around the edges of treatment, but central to their provision: counselling, psychological support, nurse availability and opening times.

Keyite - thanks for the link. I'll have to do that.

[newt]

This (1 x year viral load) is not so good.... the three months' thing is a bit random but 4 or 6 months seems better than once a year, eh? It does depend.  Me, I'd be happy (well, do) to have viral load every 6 months.  If you are in a difficult situation then may be closer monitoring is important.  But truthfully, before treatment, lot of VL tests don't tell you too much, CD4 is more useful.  On treatment, since success is judged by undetectable viral load, 4/6 months/before every prescription once stable seems workable.  Viral load is cheapo now anyhow, it's not a big expense, it's doc's time which is expensive.   Hence "At Home" which is run by nurses on the telephone.

Mortimer needs to sort out it's At Home clinic.  Either you can do it (yes) or not... bit disorganised are they.... me, ain't seen a doc for ages, and don't mind, but wish the nurses wold get on top of the bloods/review/prescribe thing.

No-one should be offered AZT as first line therapy on the basis of cost. Plus, after switches, side effects etc, it is nearly cost neutral compared to Truvada (all that anaemia & transfusions, see) + Mortimer has a distinct preference for Truvada as firstline nuke pairing.  The phrase "I do not consent to treatment with that drug" is powerful and useful. They can't make you take AZT and they can't refuse to treat you if you need the tabs.

I am organising a meeting on testing (diagnostic and monitoring) for the UKCAB in July.  The "community" will no doubt formulate some sort of position on frequency of VL under various circumstances, and get the British HIV Association to endorse it (hopefully) in due course. 

Matt, why not ask ask someone at Mortimer for a copy of the bloods/monitoring tests protocol? It's written down somewhere. I got an old one, time to update perhaps....

Problems with drug choice in the UK are usefully reported to Simon Collins at i-Base who sits on various  committees that look at these things.

- matt

[carousel]

I've read stuff about cuts in HIV services, but having a VL test every year would worry me.  What was their reasoning behind this? 

I'm not on medication, but my check ups are one way that reassures me that I'm doing ok.  Last year, they moved to every four months and I presumed that was for medical reasons.  I'm going next week, but it does feel too far apart for me and it only occured to me a few weeks ago, that this might be to do with cuts.

The only other thing that I've noticed is that if I need to change an appointment that it can be impossible to get a new appointment within 6 weeks, and that includes just having bloods.  I make my appointments directly with my doctor.

I go to King's and apart from the above, I'm happy.  My Doctor has helped me with getting NHS dental treatment and CBT at Guy's and referred me quickly to the dermatologist in the last year.

This is worrying, though.

[blondbeauty]

I am not in the UK. But, since starting meds, I am having my VL monitored every time and cd4 once every other bloodwrok. I am supposed to have my blood drawn every 3 months but I delayed my next blood work 5 month. I am not a human pin cushion.

[newt]

Okay, chapter and verse from the lead nurse.

From 1 April...

People on treatment will get CD4 1 x year, and viral load as and when.  As and when will be every 4 months, unless doc/patient decide otherwise.

People not on treatment will get viral load 1 x year, and CD4 as and when.  As and when will be every 4 months, unless doc/patient decide otherwise. 

Doc/patient may decide otherwise (for example) when approaching a decision point for/about treatment, to monitor health more closely etc eg CD4 dodgy/falling, viral load on treatment odd, person is ill etc.  This will be a clinical decision. No test a doc orders will be denied.

The reasoning behind this is, I am told, that (at the clinic) doctors do not use viral load to decide about starting treatment (use CD4/other factors) and do not use CD4 to decide about effectiveness of treatment (use viral load), an extensive review shows this to be so, therefore these tests are beside the point.

Not chapter & verse, but UK guidelines...

People starting treatment should expect to have a (extra?) viral load about 4 weeks after starting to check it's working, and a resistance test on diagnosis/before starting.

- matt

[keyite]

Matt/newt,

That's really interesting and I would have to admit that their reasoning seems to make sense in a general sense. I am not sure, though, that I'd accept they don't make reference to VL when not on treatment - the reason my tests keep being repeated every two months is that my doc has concern about the rising VL - presumably because she fears CD4 might start to crash. If I had only had my VL measured at diagnosis and then again a year later then this issue would never have come to light, or just too late in the day. On the other hand, that might have saved me a lot of potentially unnecessary worry...

[Central79]

Thanks for that newt. It's what I turned up also.

It actually makes sense from a scientific point of view. I read a paper quite recently that said that VL on its own is a very poor predictor of disease progression, as measured by CD4 decline. They figured it accounted for only 5% of CD4 decline directly.

I guess there are other mechanisms by which HIV triggers cell death, and that mechanism is not directly related to the amount of virus in the blood. It's more of an interaction between any amount of present virus and your particular immune system - the type of interaction determining progression.

Anecdotally, I had a massive VL when I was diagnosed, but it didn't seem to do much to my CD4 count. The Body is still putting out that VL is the biggest determinant of disease progression - I wrote to them and cited the paper, but they didn't comment. If you're interested it's:

Rodríguez B et al. Predictive value of plasma HIV RNA level on rate of CD4 T-cell decline in untreated HIV infection. JAMA 2006 Sep 27; 296:1498-506.

The real costs in HIV medicine are 1. Medication and 2. Inpatient stays. Everything else is peripheral (cost-wise). I think it's important we work hard at making sure stuff that costs very little but has a big impact on the service we receive stays around - because once you dismantle that kind of network and expertise it's tough to put it back together.

Carousel - you mean you can't just walk in off the street and get bloods done? MMC is very good about that - then I just have to make an appointment to see the doctor 3 weeks after the bloods, which I do about 6 weeks ahead.

Matt.

[manchesteruk]

People not on treatment will get viral load 1 x year, and CD4 as and when.  As and when will be every 4 months, unless doc/patient decide otherwise. 

I have to say I'm a little uncomfortable with this I don't really understand the thinking behind it.  Why have a CD4 count without a viral load as well?  I've had drops in my CD4 count of 400 I wasn't bothered by this because I had received a undetectable viral load at the same time.  Maybe it's just me but I don't understand how you can monitor disease progression without both of those tests?

Chris

[DingoBoi]

nevermind.

I was confuzzled again.

[newt]

As far as I can see, docs at Bloomsbury will be able to order any test they think is justified, but stable people on/off treatment will routinely get less tests.

CD4 is a relatively expensive test, £70-80 a throw. The new protocol will save money (but not much, maybe £100k), which will be be spent on on other tests, mainly safety tests like kidney function (2 types, 1 routine, 1 more complex) for people on tenofovir, and universal HLA testing pre-treatment (for abacavir sensitivity). The diagnostic protocol will be decided on a doctor-patient basis and fine-tuned by nurses every time you visit. So 3,4 or 6 month's it's up to you.  The aim is to avoid unnecessary tests.  The change is based on a review of decision-making for 5,000 patients.

Full blood count, urea and electrolytes, liver function and HIV-1 STS DNA are standard (<<<what's this - second template switch, see this abstract) will be standard for every visit.

For people starting/changing treatment the protocol is as follows:

Pre-treatment - HIV resistance, abacavir sensitivity
Baseline  - Full blood count, CD4, viral load,  urine and electrolytes, liver function, lipids, bone profile, glucose, urine protein/creatine ratio
2 weeks   - FBC, VL, U+E, LFT
4 weeks   -  FBC, U+E, LFT, lipids, glucose
3 months and 6 months - FBC, CD4, VL, U+E, LFT, lipids, bone profile, glucose, urine p/c ratio

Manc, this is the reasoning: off treatment viral load is not indicative of disease progression/when to start combo.  CD4 count/decline is.   On treatment, undetectable viral load is the measure of treatment effectiveness, CD4 count isn't.

Matty, thanks for starting this thread which has provoked a useful and fast discussion on the UKCAB list (cos I mentioned the new protocol there) with a response from the top. If you (others) want Dr Ian Williams' (UCL's lead doctor) comment to the UKCAB on this PM me your email address and I will forward the info.  I also have the blood monitoring form/protocol (Word document).

I hope someone from UCL will come to the July UKCAB meeting to discuss their diagnostics protocol, it is likely to be trendsetting, and there are pros and cons. If people want details of this meet, which is in London, let me know (maybe some money for non-Londoners to cover travel/accommodation).

- matt

[keyite]

provoked a useful and fast discussion on the UKCAB list

Is this a closed list or can anyone join? If so, how?

[newt]

Do join

UK CAB website

- matt

[manchesteruk]

Thanks for the info Matt.  I'm onto 6 month intervals in between labs at the moment so I'm hoping Ill still be able to have the cd4 and viral load at the same time.  I do realise in my situation it's probably not necessary but it is for my own piece of mind! Certainly something to bring up with my doctor at my appointment next month anyway.  I might try and make it down to the UKCAB meeting as well or at least take part in the e-mail discussion group.  It's about time I took more interest in the upcoming changes in the NHS and how it might affect HIV+ people  in the future.

[Cliff]

I think the changes are fine.  In a perfect world, 3-6 months testing (of all labs), would be done.  But unfortunately there is a limit to how much society can afford to pay for treatment.  I don't think these decisions have compromised treatment quality; however, they do result in more responsibility being placed on patients, (particularly in terms of monitoring how we feel in-between tests). 

But I have to wonder why are they bothering with doing a viral load test at all.  Once a year, (for a result that can swing very wildly), seems a bit random.  Plus if they aren't looking at vl's for diagnositic purposes, why bother testing it?

My only complaint (it's a bit minor) is that the communication process is being done backwards.  I found out about the change (officially), when I called to get my results.  Apparently the nurse who drew my blood, excluded the tests that are no longer being done.  He shouldn't have done that (especially if patients are being allowed to opt-out of the protocol).  The nurse should have verified that I had the discussion with my consultant first, before deciding on what to test me for.

But I am curious about the claim that people are being delayed treatment until the new fiscal year...

[stillsane]

This is a really interesting and informative thread.
I go to Barts which seems to work a bit differently. You dont make appointments for blood tests, you just go in a couple of weeks prior to your next doctors appointment and they will do the tests.   Doctors appointments are increasingly difficult to book any less than 3 months in advance and this situation is likely to deteriorate significantly with the temporary closure of the unit at the Royal London in Whitechapel.
My major criticism is that, left to the doctors, patients who should be monitored more closely simply arent. Luckily I decided to ignore my doctors advice and go in for tests more frequently than they wanted because I knew I wasnt doing well (cd4 had declined by over 350 in a year, pretty obvious I would have thought). That way I picked up a drop in CD4 from 280 to 100 in under a month, meaning I had to start meds right away. This would not have been picked up for another two months if I had followed their advice/guidelines. God knows what my cd4 would have been by then. 
I think that the key thing is to consider your doctors advice but listen to your body. If you dont feel well and your trend is a steady decline in cd4 go in and get a blood test (particularly if you are in the sub 300 zone) and dont be dictated to by someone who appears to be watching the bottom line more closely than your wellbeing.

[RobT]

Looking more into the NHS since I am hopeing to immigrate to the UK when school gets out to join my parter.

Rob