New policy for dispensing glivec

That does sound unnecessarily difficult for you. We do things a little differently in Scotland - I've always collected my imatinib from the hospital dispensary when I go for my 3-monthly checkups, and that seems to work fine.
Olivia

Hi All
The distribution of high value prescription drugs such as Glivec is bedevilled by an historical anomoly arising from no dispensation being offered to the NHS and in particular hospital pharmacies for drugs dispensed to outpatients-inpatients are exempt as are those who take a prescription to their community or local pharmacy.You can google the topic and find the gobbledigook statement from HMRC on dispensations offered on prescription drugs if you wish, but it fails to offer any sound reasons for this anomaly.
Appeals to HMRC have failed and their response is that government offers some sort of cash back to Trusts to cover the VAT that is charged to Trusts and their paharmacies but the Trusts dispute this.Trusts are not permitted to reclaim the VAT back it seems.Private hospitals and their pharmacies would be able claim back it seems.
As a result many hospitals are outsourcing the work of hospital pharmacies and Boots, Lloyds and others have been tendering for contracts that they pay millions for for say a 5 year time span;Boots having an implant in a hospital are equivalent to a local or community pharmacy so are not charged VAT on any medicines offered to outpatients.
The other response to the issue is for hospital pharmacies to outsource the provision of high value drugs to home delivery or home care companies-mine is Alcura and it is a division of Boots based in Northampton. After my consultation I take the internal prescription to the hospital pharmacy and indicate that I am on home care and they contact Alcura who then phone me to arrange a delivery by courier for the full 3 months.I was persuaded to go over to home care by my hospital pharmacist who illustrated the problem by indicating that 3 months supply of Glivec at around £5000 dispensed directly to me by the hospital would be levied VAT of an additional £1000 which could not be claimed back-money down the drain in the words of my haematologist.
For a while I saw my specialist at a location outside the main hospital and was given what an external or normal prescription from a pad similar to those issued by a GP-I used a local branch of Boots and got 3 months and it worked well.However the Boots pharmacist had to copy my prescription to Novartis without my name showing who then supplied direct to the pharmacy.Novartis were trying to control distribution of drugs like Glivec because there had been cross border trading of Glivec by wholesaler pharmacies and some hospital Trusts even-Royal Surrey for instance.
There had been an electronic petition re the VAT anomaly to NO 10 a while back but it got only a handful of signatures-not a matter fully understood by many and not a hot political potato that would excite many to petition their MP.
There was a good article on Tuesday 30 December 2014in the Independent on this whole issue of VAT on outpatient prescription drugs-it suggested that many Trusts would contract out their pharmacy business and use an implant such as a UK based or European pharmacy group.
Title was"Revealed ;The VAT loophole driving NHS pharmacy services into hands of the private sector" I suggest Google" VAT on prescription drugs" to find out more

One comment on homecare or home delivery suggested that less reliable and smaller companies might source their Glivec in other EU countries especialy when the Euro is weak or just outside EU such as Turkey where counterfeiting of high value drugs is an issue.However on would hope that direct distribution from Novartis or drugs from Boots or thier associates would be the real thing
Re the dispensing of drugs one month at a time this is not new as my hospital pharmacy would only give 2 months then another month and yes 20 miles away.
I suspect that with the Northampton example the new incumbents Boots have paid a high price for the contract and the Trust are pinning down their costs and trying to control distribution so as to minimise waste
If you feel stongly write to your hospital or write to your MP but the reply would be the usual fob from Jeremy Hunts civil servants I guess
Trust this helps
John W

Hi chrissie, I will try to see if it can be delivered but it's the new policy of only giving 1 month at a time. I was told it's a national thing but if other people are getting 3 months at a time then it can't be.
I'm aware of the vat issues which is why I collect from local pharmacy. If the hospital continued to give 3 months at a time it wouldn't be a problem where they were collected from.
My problem is that I work a fair distance from home so would need to take the whole day off every month, this means I lose a lot of money which I can't afford to do.

My hospital doesn't have a dispensary, so I used to collect a three monthly prescription. It has now changed to a system whereby the meds are delivered direct to me via Alcura (Boots Homecare) and the system seems to work well. They are happy to deliver to a workplace too. In some ways it works better than taking the prescription to a local chemist which was only for one month at a time, whereas Alcura bring me 3 months.

Vickie

That's wholly and utterly unacceptable. I'm in total agreement. Wayyyyy too high a risk! All you need is something silly to happen and you could be stuffed!

It seems to me that this sort of decision is a bum decision. Aside from the risks of failure to deliver, it also means that having leukaemia means it's going into the realms of dictating how you live. It means every month you're having to hang around waiting for phone calls and waiting for a delivery.

I don't know if you read my posting about the HC@H fiasco I had .... as it happened I had some tablets that I'd totally forgotten about in an overnight bag (I kept them there because I never wanted to go away forgetting my tablets). Just as well that was the case because Healthcare at Home failed to deliver to me. They didn't know I'd rummaged round and found a contingency and had also made arrangements to drive 200 miles to my hospital to collect some from there. As far as they were concerned I ran out and was totally without for 3 days!

Suffice it to say I flatly refused to continue with them and went back to collecting them myself from the hospital. Because I'm on the DESTINY trial I'm going monthly for check ups and I am only getting a month at a time. However until then I was getting more than that. I got 3 months at a time in summer and 6 months in winter. So I have a small buffer stock.

If I were you I'd be very clear in yur letter what the risks and consequences are and make sure that they properly understand that you hold them responsible and in the event of any failure negligent.

I know I'd not be happy withut a small buffer stock. The NHS isn't efficient when it comes to things like this. For sure HC@H are incompetent and grossly negligent.

Hi David

I, too, am a RD and E patient and have been using Healthcare at Home for my monthly supply for the past 9 months. (You can ask them to deliver either 8.00am-1.00pm or 1.00pm -6.00pm or evening time when they ring in advance).In my case it all works very well ( see my posting below). Only for the second or third month did I have to email my consultant to ask him to write a prescription for the pharmacy as the monthly script was out of sync with the 3 monthly clinic appts and that was all sorted within 24 hrs. There is also a marvellous gent called Peter at the hospital whose job it is to oversee the safe ordering/delivery of the meds.through H at Home. The hospital will give you his direct line or ask Sandy for my email address and I'll give it to you.
However, at my clinic visit last week I learned that the RD and E are not going to use Healthcare at Home for much longer as Boots is opening on the hospital site so patients will be collecting their meds from there. My consultant didn't know precisely when this is going to come into effect but wrote a script for 2 months' of Imatinib instead of the usual 3 months. I just hope this won't entail a trip to the hospital every month to collect the meds. although I have to go every 4 weeks for blood testing under the DESTINY trial so as long as it coincides it won't be too bad.(It's a 20 mile trip for me).

I think these channels for getting meds are saving the hospital VAT, which is quite a considerable saving just for Imatinib, and also help to prevent any wastage where patients stockpile drugs which maybe they don't use for various reasons eg change of drug . Therefore I'm all in favour.

Hope this is of some help,

best
Chrissie

It's absolutely ridiculous that there's cancer patients having to worry about shambolic and unreliable service and also having to have something as simple as just getting medication rule their lives.

In my case it's nearly a 200 mile trip to the centre of excellence I'm treated at. Right now I'm having to go for monthly check ups because I'm on the DESTINY trial and so I'm collecting my own medication every month.

Leeds have also installed a Boots. Twice I've had to hang around for more than 4 hours after I've finished at my check up and just waiting for them to get their act together to get my glyvec before I can set off for home!

I won't use the likes of Healthcare at Home having had a disaster with them. They're not to be trusted and frankly they really are inept and don't care if they don't get medication to you. In any case even if you do use them you have to hang around at home waiting for them to deliver.

I do really have faith in my consultant and the treatment I've had throughout the past 20 years but when it comes to stuff like this: procurement and management and organisation and logistics, the NHS is just dysfunctional and inept. It's worrying if you're reliant on important medication and don't / can't have a stock or a back up contingency.

I got my 3-month fill dispensed from the hospital pharmacy (outsourced to Lloyds) as per normal this week. No talk at all about a 30-day fill.

Just collected Ted's 90 day prescription from Boots.....no problems at all.

Hi David

I am in clinic there on Monday and will need a prescription. I had my last delivery of 30 days' Imatinib from Healthcare at Home last week so will be interested to see if any/ how many months' supply will be waiting for me in Boots Pharmacy at the hospital as I believe this is now the way forward. Think I'd better send my consultant an email reminding him. Despite my many misgivings when told a year ago that Healthcare at Home would be delivering the meds, it has worked faultlessly for me. I know it's been under new management for that time - and no wonder having read the earlier criticisms.

Hope the tabs come through in time and that you both have a good holiday,

best
Chrissie

I had the pleasure of sharing a taxi with Prof Steve O'Brien from Newcastle hospital this morning, and spoke to him about whether 30 day scripts are the new rule, and if it was a 'central' diktat. He assured me that it certainly was not, and he felt that it 30 days is a stupidly short period of time for a 'refill' and seemed quite surprised that hospitals would do this. In fact, he'd be in favour of having 6-month scripts and clinics for 'stable' patients (as a aside, we also spoke about whether Skype consults would be worthwhile in this 6 month period).

Steve said patients should "voraciously complain" about this, that it was in no way an NHS or NICE policy and if it has been brought in, it's down to the individual hospital.

Perhaps we could collate a list of hospitals that are enforcing a 30 day rule?

You seem to be the lucky one. Healthcare at Home (HaH) have failed in their deliveries to me on several occasions, once allowing me to run out completely. This was because I had a new address, which was given to them on my prescription, and checked by me when they phoned to arrange delivery. I waited in all day, and no delivery. I telephoned them, and they assured me that it had been delivered. They arranged an emergency delivery, which again did not turn up. They also seemed to have a policy of delivering the day before I run out.

 In desperation, I phoned my hospital consultant, who authorised me to take the hospital's 7 day emergency supply, while I tried to get some sense out of HaH. I even spoke to their chief pharmacist, who said he would sort it out.

it seems that the side of HaH which accepts the scripts does not talk to their delivery team, as they had delivered my Glivec to my old house. Twice! 

I had none left, my hospital had none, but, as luck would have it, the lady at my old house, who had refused the first delivery, brought the second one round to me. I was very grateful. 

I do have another problem with HaH, and that is that they will not split boxes. So, when the haematologist orders 3 months supply, I get 3 boxes of 30 i.e. 90 tablets. Most 3 month periods are greater than 90 days, except non leap-year Feb, Mar, and Apr, so I tend to run out, except, once in a while, as I've been on Glivec for 11 years, I get a prescription for more than 3 months. My last prescription was for 5 months (as my next hospital appointment would have been on Boxing Day!)

I have also taken to telling them that I have fewer tablets than I actually have. I do not trust them further than I can throw a fit!

Hi David

Still getting my imatinib via H at H - in fact had 30 days' supply delivered here this morning - as usual one week before my supply runs out. My consultant decided to continue with H at H as I was/am happy with the service - until he is told otherwise.All good on that front - but not very active online now as managed to break the humerus in my upper arm on CML World Day - 22nd just as I got back from the gym. Not nice at all and my right one, too.  Hoping this doesn't have any effect on the disease!

Am also awaiting the results of my 3rd retest under DESTINY (for Month 11) as it looks as if I've lost MMR again.

So now I 'm under both haematology and fracture clinics at Exeter. I need a new body.

Hope this answers your questions - not thinking too clearly...

Best

Chrissie

I think inefficiency and incompetence is clearly rife throughout the world  ;)

Seriously though I don't think that sort of total mess up and lack of communication or sense of importance and urgency is anything at all to do with "a strategic decision" or "a new process or way of working".

That's incompetent people who are slaves to broken processes.

It's precisely what I experienced with Healthcare at Home.    I ultimately got an unmitigating apology from their CEO (who then got fired!) and also from the NHS Head of Procurement..... who I think continues on to negotiate yet more "amazing" deals with no regard for patient and with little management control.... but hey he's labouring under the illusion he's saving money!

I do sincerely hope you've got sufficient medication to last till they decide to get into work and call you.   

I strongly advise you to start directly contacting the most senior person responsible for the service:   both the delivery pharmacist AND the health care professional or senior manager who authorised your prescription in the first place.... so whoever is the head of the Novartis Health Care Programme.     Don't wait and hope someone will get efficient.    It's only because  I had more tablets than they thought and then managed to find an extra foil with 7 tablets in stuck down the back of my drawer that I had continuity !!   IF I'd waited I'd not have had any medication at all for 15 days!        Make sure you emphasise the need for a small contingency and that you need to be assured that this appalling situation doesn't happen again and you want things like "emergency direct line phone number" etc etc.   IF they don't get it then frankly I'm minded to suggest you tell them you've stupidy gone and lost a pack so could they please replace it.  

In my case I flatly refused to use an external delivery provider ever again and I go and collect my own direct from the hospital pharmacy and I do have a contingency supply.    All of which I hope will be irrelevant as I've just completed one year on the DESTINY trial.   Just waiting for the one year result and I might be off imatanib for the first time in over 15 years :)

Regrettably "fortunate" has nothing to do with it.   It's about good management and competence.  

Don't get me wrong, I can't fault the medical team or the medical care I've had.   First class!   Second to none.   That's all done by the specialist unit at Leeds.   I've total trust and confidence in their ability.  They've given me no cause to think otherwise and indeed they've turned me into a demanding patient by setting the standard for what to expect. 

In the "old days" everything I had was funded by Leukaemia Research the Leukaemia Ward was like entering a different world.  I had to touch the NHS bits only for things like prescirptions.    They were never what I would call "efficient" but it was all checked and organised and put right by the Haematology specialists and so I got what I needed when it was required despite some silly mistakes.          THEN came the day that things changed and someone had a good idea to post out prescriptions and save money.    In the early days it was via Royal Mail and that kind of worked well.   Even when my farm was snowbound: one year just before Christmas my postman literally went the extra mile.  He knew it was my "chemo" and he phoned to say he couldn't get through the snow drifts at all and so we arranged that I'd drive out in my tractor to another location 8 miles away and where it was a little easier to reach and I took delivery there and long after the postman should have finished work!  

All was well and good and after that incidident the unit even agreed that it would be a good idea for me to have a "winter delivery" in October to cover 6 months.   Thank goodness!

Then it seemed someone realised that it wasn't "safe" for the postman to bring out our medication and there was further cost saving to be made so there was a compulsion to move away to another service provider and that's where Healthcare At Home came in.    Early signs of incomptence were there from the get go:   they'd phone and if I wasn't in they never left a message and wouldn't make arrangements with anyone else if someone else answered the phone so I'd have to chase them to ensure I got my supply.  Despite giving detailed directions and specific instruction NOT to rely on a sat nav in this rural location they couldn't find me and they took my medication back!     Seems the directions and my phone number were wrapped and sealed INSIDE the packet and the driver was very specifically instructed not to ask for directions or let anyone else know he was trying to find me for reasons of "confidentiality and data protection"   !!!

After a couple of months of silly stuff but with me always getting my prescription (and me being unconcerned because I had a buffer stock because of this winter arrangement) things settled and all was well.   I made sure that they had written authority to leave a message and even if they weren't answered to just tell me the date and approximate time and come here because there was always someone on the premises.  

Then came the fateful day that I got caught up with their restructuring and total failure to manage a load of business change!      I'd not a clue that anything was wrong until it was obvious I wasn't going to get my tablets on the due date!     We discovered that it wasn't just my drugs and that they'd actually run out of Glyvec stock.     They only had 21 tablets in stock!!   That's how come I ended up with a few tablets cut off their foil wraps and with no "end by dates" and no "batch number" on them.   All of course a breach of pharmaceutical regs.      
 

When I was first diagnosed my consultant told me very specifically that they'd help me to know about managing my disease and symptoms and with no immune system and what standards to expect from others.  They freely admitted they'd make me a difficult and demanding patient and that I wasn't to be persuaded by anyone that anything other than what Leeds specialist unit said was right or proper.      I'm eternally grateful that they helped me through that process and I'd rather err on the side of caution by thinking no-one has a right to be trusted with my health UNLESS and until they prove themselves as "competent". 

I would always urge someone with any significant and serious illness or condition to make sure that they have a great doctor who can be their advocate and also to ensure that other service providers are efficient and effective and doing their jobs and getting them what they need by due dates.   More important though is to ensure there's a contingency plan just in case something goes wrong.    When your health and life depends on something you do not want to be hearing "can't find you", "forgot about that", "we ran out",   "the M1 is closed, can't get there" when you're down to your last couple of tablets.

At the end of the day my view is that it's just too damned easy to put right by ensuring cancer patients have a small buffer stock or 24/7 access to getting replacement in an emergency.  

I presume you know that Alcura is a newly formed subsidiary of Boots Alliance.    I'm never convinced that it's a good thing to guinea pig a service on people who are totally and utterly reliant on it.  Especially when there's little room for error and no contingency.   They also have already had poor reviews because of failures to deliver.     And of course I understand that might be "excpetional". 

Indeed Healthcare at Home had an overall 1* review: only before it went wrong with me I didn't know and never even thought to look.  I thought it worked well, until it didn't!    I only found out that by accident when googling to try to find out how the heck I find out how to get my imatanib and who to contact that would actually answer the phone.   Turns out though  that the Procurement specialist responsible for the contract didn't even look at the NHS' own feedback site!   Also turned out that HCAH were being somewhat creative with their metrics around customer complaints and service level failures.     (Perhaps their CEO moved there from Volkwagon ;) )

How's about: 

Do a formal complaint to CE at the NHS trust.  If you can get your GP to support it.   Better still if you can get a medical negligence specialist lawyer to whizz off a letter on your behalf.

Also ensure you write to your MP and tell him to kick someone's backside.

Can Bloodwise (Ex leukaemia research)  help in any way.   They're pretty good at ensuring patients get what they need and put strong case to the NHS re the need to change. 

Chrissie and Darley

Thanks for your posts. We did have a good holiday, thanks (apart from US immigration and bureaucracy which seems to be designed to discourage tourism!).

As to what to do: we still await a reply from our MP (other than an acknowledgement). In any event, all that is likely to do is tell us whether or not this is a national policy for England - it doesn't seem to be from some of the posts here. I did ask for a copy of the "instruction" which, if it exists, may make it clear whether Trusts have a discretion (which I suspect is the case). I have written to our MP again today asking him to chase Jeremy Hunt for a reply.

Darley, as to your idea of writing to the Trust's Chief Executive, for which many thanks, we are considering whether to do that straightaway or to await the outcome of my wife's Consultant raising 30 day prescriptions internally at the Trust. It is simply a balance between trying to deal with the stress the hospital is creating and not treading on the Consultant's toes in whatever he is planning to do. Just now we are inclined to write straightaway because the situation is intolerable. I'll keep you posted here.

David

David and Chrissie

I cannot understand why the hospital is not using the same system for all CML patients. The doctor I saw last time didn't appear to know about usnig Boots, and insisted they are still using Healthcare at Home! 

I feel that, thanks to tki's, CML is quite low on the list of priorities! I was diagnosed in May last year. I changed consultants last October, but have only seen my 'new' consultant once since then! I have had to turn to the internet (this site, the charities and Facebook) for information and help with side-effects - it's a lonely journey - I haven't met anyone else with CML 'face to face'. I sometimes wonder if older CML patients (I am 69) get treated differently, as obviously diagnosis must be much more traumatic for younger people!

I am aware of the problems within the NHS, and that the Haematology Dept. must be dealing with patients with much more complex blood disorders. I feel very humble and grateful to be receiving the expensive medication, and have responded well to Imatinib, but a little more advice and information at the outset would have made a considerable difference. 

David, does your wife have 'shared care' with Hammersmith? Perhaps you could give H at Home another go - they have improved! My last delivery arrived within the two hour slot I was given online in the morning, and, for the first time, that slot was within the five hours I agreed when they phoned a couple of weeks previously!

I am in unexpected remission from another cancer and have had, and continue to have, wonderful help and support from the oncology department at the hospital for that, so am a regular visitor! It's a 45 mile round trip!

MRB (Margaret)

Dear Chrissie

Thank you for your reply.

I had read your post about your arm. I believe it is a nasty bone to break, and must have been very painful. I hope you are on the road to recovery.

I have three monthly haematology appointments (I wasn't very clear on this!), but at the last two visits I saw a doctor from the department. He was lovely, and tried to be helpful, but couldn't give me any advice on side effects, or information as to which pain killers are OK to take! I last saw my consultant in March. My results have been good, and were 0.11 at nine months, but the next ones (at a year) were lost - or it seems the sample was lost! These things happen, and I am not particularly worried, and my most recent bloods were fast tracked. I am told they are lower, but I don't have the figures (I assume the detailed results take longer and I will get them at my next visit in December).

During the early days last year, I felt that I did't get much support. I had an appointment with the consultant two weeks after starting Imatinib, and the next one (with a department doctor) after a further month. The next appointment was after another three months, meaning that I wasn't going to get my first PCR until four and a half months after starting meds. I queried this, and the appointment was brought forward by ten days, which still meant my first test was more than four months from stàrting! I changed consultants, and caught up a couple of weeks, so my second blood test was at just over six months.

I like to have as much information as possible, and have read up on recommendations for checks and tests, which didn't seem to happen in my case! I didn't have a bone marrow test either (not that II particularly wanted one, as I believe it is not a pleasant experience!). I don't know if it is the policy of the hospital, or of the individual consultant.

I am very lucky to be responding so well to Imatinib, but feel I missed out on support during the early days. I also like to know all the details - but do not have figures for the 'landmark' tests at three months and a year!

Thank you again. Perhaps our paths may cross sometime, or I can get to meet you when you are mobile again.

Best wishes

Margaret

Darley, Chrissie and Margaret

Val's treatment is controlled by the Hammersmith but Glivec is dispensed by the Royal Devon and Exeter Hospital. She decided not to continue to use Healthcare at Home when the RD&E instituted monthly prescriptions when the Pharmacist suggested that the new Boots within the Hospital would be more convenient. It has turned out to be a disaster because the Consultant cannot issue a prescription without seeing the result of a liver function test. That test is done from blood taken on 3 monthly clinic appointments. The problem is that the test results take several hours to come back so the Consultant cannot issue a prescription while she is at the clinic. So another visit to the hospital is needed to collect the prescription.

This new regime is ludicrous and potentially dangerous. It causes anxiety and distress because she never knows whether or not a prescription is ready at Boots - nobody tells her. The next one is due on a Saturday when Boots is shut. What happens when the date is over Christmas or a long Bank Holiday weekend? The stress created by all this is ridiculous on top of having CML in the first place.

So we are sending a letter tomorrow to the Chief Executive, copied to the Consultant and the Chief Cancer Pharmacist  requiring a change back to the pre-existing 3 monthly prescriptions delivered by Healthcare at Home, rather than Boots. We have made it clear that if the old system is not reinstated, we will appeal, ie we are not going to go away. The letter refers to the 3 monthly prescription practise at the Hammersmith, Newcastle (and now Northampton).

Thanks for all your posts - they have been very helpful.

If anyone needs a copy of the letter we have sent to use as a template, please let me know.

I will post in due course as to the outcome of the letter.

In the meantime, no reply (again) from our MP who no doubt has not yet heard from Jeremy Hunt.

Margaret - keep your chin up. Any support you need about CML is available from the lovely people who run this web site and from the people who post in the Forum!

David

We are given both the blood form and envelope for the next appointment as we book it, before leaving the hospital. 

Appointments for the bloodlettings are given about 1hr 20 mins before the main appointment and you are free to go and get coffee, lunch or whatever in between. The standard tests are done in that period and will be with the Docs by the time you see them.

There is a big black hole somewhere between our GP surgery and the hospital, and would not trust the system especially when the PCR bloods need to be couriered to Hammersmith the same day (at 1.00pm in our case).

Dear All

We had a very helpful letter from our MP today. Off his own bat, he is writing to the Chief Executive of RD&E about 1 month prescriptions rather than 3 months. He encloses a copy of a letter to him from Alastair Burt, Minister of State for Community and Social Care at the Department of Health. He says:

"...Whilst it is often common practice for prescriptions to be issued for one month (or 28 days) at a time, there is no Government directive to specify the length of time for which prescriptions should be issued. The Department recognises that prescriptions for longer periods of time may be more appropriate and more convenient for some patients..."

So clearly the 1 month prescription idea is a local Trust matter, not a government diktat.

we now await a reply from the Chief Executive of RD&E to our letter to her and also a reply from her to our MP. We live in hope of a change back to 3 month prescriptions and a return to a more normal life of 5 hospital visits a year instead of 13 or more visits.

David

Darley
Our MP has already written to the Chief Executive of the Trust off his own bat with no pressure from us. Good on him!
With luck that letter would have arrived the same day as my wife's letter to the Chief Executive. That could not have been better timing had we organised it, which we did not!
I'll post when we hear the outcome.
David

From reading the posts over the last four months and with some additional research, it seems clear that the awarding of contracts to private sector companies to take over the management of hospital pharmacy services is likely to continue. 

Although there is no logical reason why a hospital Trust could not contract out hospital pharmacy and home care medicines services to separate companies; the administrative and logistical costs involved would probably act as a strong deterrent. 

It could also be that some part of the experiences described on this forum cover transition arrangements as Trusts either move to outsourcing their in house pharmacy services or move contracts from one private provider to another.  

Setting this aside, it is also evident the service delivery from one company, Healthcare at Home, is often well below standard and that this is not limited to CML patients. 

As to the shift from 3 month to 30 day prescriptions at some hospitals, it does not seem that the awarding of a contract to a private company necessarily leads to a shift in prescribing frequency, although there is a remorseless budgetary driver that is probably in play in doing so.

Even before factoring in the issue of the absence of 20% VAT, imagine the difference in cash flow of a thousand patients receiving 3 month as opposed to 30 day prescriptions for high cost drugs, like those for CML. 

With every part of the NHS currently under extreme financial pressure (for example, the hospital Trusts, Foundation or otherwise, are expected to end the current financial year with a deficit of over £2Bn), I expect measures such as these will become increasingly commonplace.

I would link these local changes to those occurring at a national level and would particularly highlight the removal of future access, via the Cancer Drugs Fund (CDF), to bosutinib for chronic phase CML patients experiencing resistance to dasatinib or nilotinib as an example of an entirely cost driven measure and a short term one at that. 

The same short term cost cutting approach applies to the decision to refuse to consider an application for ponatinib to be accessible to CML patients via the CDF other than for the tiny number of patients with a T315i mutation. This is despite ponatinib being available to patients within the all the terms of its license in both Wales and Scotland (and most of Europe).  

Some of the contributors to this discussion thread have joined the ‘DESTINY’ clinical trial whose objective, as most will know, is to discover if reducing doses of targeted therapies for CML, and even stopping treatment, is possible without a patient losing their molecular response to treatment. 

We already aware this is possible for some people, but the trial will attempt to elucidate further what is already strongly suspected. One by-product of this dose reduction/stopping approach is that cost per patient of treatment will fall as doses are reduced, just as they will do when the Glivec (imatinib) patent expires next year. 

We had hoped that this would be sufficient to persuade NHS England that the savings achieved, including the savings made from those recruited onto the trial receiving their drugs at zero cost, would permit a more enlightened attitude towards bosutinib and ponatinib. 

We are very disappointed this economic factor appears to have had no effect and, as a consequence, we are moving further away rather than towards the treatment guidelines for which there is a consensus amongst leading European CML specialists.     

This has produced a bizarre scenario with the health minister saying repeatedly that he wants the UK to become the best in Europe, or as good as the best amongst its equivalent EU member states, in ensuring survival from cancer whilst simultaneously, as least for CML patients, engineering a situation where the present has been displaced by the past and the future looks no different. 

In short we are going backwards when we should be moving forwards.            

I live in Scotland and was asked by consultant if I could get glivec from a local pharmacy to save vat.

I went ahead with this and before I got 3 months prescription from hospital and get 1 month at a time from the pharmacy, so not as good as before.

I'm not sure what happens if I'm away for a month regarding my prescription, I guess the hospital would need to provide it.

Just an update on the Royal Devon and Exeter Hospital. We have a reply from the Chief Executive saying that the contents of my wife's letter to her will be reviewed by the Chief Pharmacist, the Lead Cancer Pharmacist and the Medical Director. That was 9 November and nothing has come through yet.

Another disastrous day today: the latest  monthly prescription should have been with Boots at the RD&E last Saturday but on ringing Boots this morning, Monday, to check that it was ready, they said they had no prescription from RD&E! Virtually the whole day has been spent on the telephone over and over again trying to sort it out. Now we are awaiting a call from the pharmacy department to tell us the prescription is ready. That call has not come yet!

My wife is deeply upset again. As she says, it is bad enough being ill without having hospital hassle adding to it. So all of this plus our letter in early November setting out the problems has been referred to the Chief Executive as a formal complaint. We were loath to do that because it costs the Trust money to deal with complaints but we felt we had no alternative given the ludicrous nature of what is going on.

I'll post again when we have something useful from the RD&E.

David 

I really feel for both of you.   I've always had the philosophy that I don't mind having cancer but I seriously mind it having me.  

I've always wanted to do my utmost to just live my life and for me it absolutely necessitated time in hospital and frequent consultant visits etc (because of the fact I was diagnosed long before TKI's).   That simply meant I wanted silly easy things like someone "just" writing a prescription and getting tablets for the due date to just happen!

It irritates the heck out of me when some "job's worth" in the NHS can't just get that right.     It's a simple process.  Doesn't require any skill or critical thinking and should not require putting your wife through so much distress, upset and concern.   It's indefensible!

It's shameful that the NHS Chief Executive and Management Team are wasting money and indulging you and your wife in their incompetence and it's woefully inadrquate that they've failed you and forced you to this course of action.    DO NOT feel guilty for pushing this matter.    Write to her and copy everyone who has any influence whatsoever and tell her straight that not only did he not even bother to respond to your letter of the 9th but he's totally failed in her duty of care and your wife has now run out of critical medication.

Her direct email address is:     angela.pedder@nhs.net

They also have a twitter account... try that too

https://twitter.com/RDEhospital

Head of procurement is:   Hélène Waterhouse.    Her email will likely be hélène.waterhouse@NHS.net

Peter Bainbridge, is Director of Pharmacy at Boots UK - he's overall responsible for the new contract there.
Boots store manager at the hospital is Pauline Magee:  her contact details are here:

http://www.boots.com/en/Store-Locator/Boots-Royal-Devon-and-Exeter-Wonfo...

Good luck

Hi John

You ask for updates from RD and E patients. I can confirm that although my Imatinib script has changed back to 400mgs as I am no longer on DESTINY trial, H at Home is still providing an excellent service and I had a delivery last week spot on the arranged time. (Thankfully my PCRs have gone down since Nov so am heading in the right direction although I don;t know at what point MMR is reached in the Exeter lab which is not on IS. I've been on trials since dx over 6 years ago and have always had results from HH so am into new territory now).

I also have a blood form and need to make an appt at my local GP's for bloods one month before my next clinic appt so the results will be through in time for that.

No problems whatsoever with getting the meds so far,

Thank you for your interest and  very constructive posting,

best

Chrissie

Dear All

Thank you for all the posts. This is an update about my wife's problems with prescriptions at the Royal Devon and Exeter Hospital.

To summarise: our MP is involved (Hugo Swire, East Devon). He has asked the Chief Executive for an explanation about the change from 3 months supply to one month. No response yet. He also ascertained for us from the Secretary of State for Health that the one month prescription is not a national NHS policy - rather the Department of Health recognise that three months at a time can be appropriate.

In early November, my wife wrote to Angela Pedder, OBE, Chief Executive about this. She replied on 9 November to say she had referred the letter to the Chief Pharmacist, the Cancer Lead Pharmacist and the Medical Director for review. When the prescription went wrong again last month, my wife made a formal complaint to the Chief Executive. That complaint will be dealt with by mid-January. In the meantime, she has heard nothing of the review referred to by the Chief Executive over a month ago, so she has written to her again today asking for the result of that review.

Yet again today, my wife had to phone the hospital to ask when the next prescription will be ready and to point out that the next one in January will be on her birthday when we are away for a few days. This necessitated the Consultant (Dr Hamilton) having to return her call to sort it all out. What a terrible waste of Consultant's time and how shocking for a patient to be in this situation.

I will keep you posted.

David

Update re RD&E Exeter. The one month/three month review is still continuing. The Chief Executive has just replied saying that the result of the review will be imminent but today we have been told by phone that the next meeting of the relevant committee is not until the end of January! Which of those is right we do not know.

In the meantime, there has been authorisation for a 3 month supply prescription of Glivec for my wife at the next hospital appointment for bloods in the third week in January. This is just a one off pending the review decision. So no real progress with the main issue yet.

It would be really helpful to us in dealing with the hospital to know from anyone reading this whether they have monthly or three monthly prescriptions for their CML medication and which hospital. We know that it is 3 monthly at the Hammersmith, Newcastle-upon-Tyne and Northampton. We would like to inform the powers that be at RD&E if they are alone or in a massive minority in doing one month scripts for CML medication for patients who are stable. We would like to be able to write to the RD&E before their January meeting with information of that kind

Many thanks in advance.

David

Olivia

Many thanks.

David

Darley

Thanks.

More letters sent today to RD&E dealing with phone calls from them and a letter from them. It is intolerable that all this hassle should have been created by a change in prescription policy, not medical need. We now just have to wait until the end of this month (6 months after all this started) to get the result of the promised review of the policy.

A Happy New Year to everyone.

David

Dennis, thanks.

David

Update on RD&E. At her clinic appointment last week, my wife saw the Consultant (Dr Hamilton) who had been authorised as a on-off to prescribe three months Glivec. Whether or not that will continue at the next clinic will depend on the RD&E review at the end of January. I will post again when we know. The prescription was ready at the Boots in the hospital about 2 hours after the clinic - so only one hospital visit this month and no hassle at all! Quite a relief and good on the hospital staff for making it all run smoothly this time.

Incidentally, the Consultant, Dr Hamilton, is taking early retirement so we will not see him again, The Hospital is advertising externally for a new Consultant and we understand there is also an internal candidate for the post.

Regards to all

David

Good news, David. Hope it stays that way for you. I'm still using H at H and it's still running like clockwork. Not looking forward to changing over to Boots - if it ever happens, but hopefully by that time things will be ironed out, thanks to your hard work.

Best

Chrissie

Great news, David. At last common sense prevails! I shall be raising the 3 month prescription issue with my consultant at my next appt at the RD and E now I'm back in MMR after losing it on Destiny. Just had another delivery from H at H and it still runs like clockwork. Just hope this can continue and I don't have to change to the hospital pharmacy.

best wishes

Chrissie

Well done! No doubt your persistence will help other patients with similar problems at the RD&E, not just those with CML!

Personally, I am finding that Healthcare at Home appears to be making more improvements! For the past two months I have been given a delivery day (rather than the five hour slot, which was rarely adhered to!) , then accessed the HaH website early in the morning (or late the previous evening) to be given a two hour slot, and my meds have arrived on time!!!  When I got my last call to arrange delivery I was told, "We do not expect you to wait in all day. You can phone in the morning for your two hour slot".

Sorry to add something not relevant to this thread, but other RD&E patients may be able to answer this query. I have been told that my latest PCR was less than 0.1, and that there are no more detailed results except undetectable! I know that patients at other centres get results starting 0.00..... ! I feel I am doing fine, so I am not particularly concerned about this - just puzzled (I like to know numbers!)! I will ask for clarification at my appointment next month as perhaps I 'got it wrong'! Meanwhile I would appreciate any comments from fellow RD&E patients!

Margaret

Thank you Chrissie for replying to my query. I will ask for the information on 'page two' at my next appointment! It seems strange that the consultants do not willingly supply the more detailed results! From the start I have been interested in log reductions - but now they have come to a stand still through lack of the necessary figures!

My next haematology appointment is Monday 14th March (afternoon). I have an appointment with the oncologist for my other cancer on 22nd February. ( I am in unexpected remission. Four years ago I was having 'palliative!' chemo, with a poor prognosis! - I am awaiting my regular six-monthly CT scan results at the moment, so feeling rather anxcious!!)

I hope you are getting back to normal after your shoulder injury. Thank you again for the information.

Margaret