One of the side effects of heart surgery and having a loud, mechanical valve thumping away in your chest, is having to become a long term user of rat poison/warfarin. As I’ve written before, it deprives me terribly of cranberry juice, and leaves me a ‘responsible’ drinker (with my reputation!). The medication is aimed at preventing nasty blood clots, thinning my blood to an INR range (no idea what it means) of 2-3. According to my dentist, they are now looking to replace warfarin but all alternative treatments are ‘too expensive’. It needs regular monitoring, which has meant frequent and inconvenient trips to the hospital. The Haematology Unit there is able to conduct a short fingerprick test, which is less painful and less complicated than a full blood test which becomes necessary if you opt to go anywhere else. I’ve had so many blood tests recently, my veins have become quite difficult to access and the warfarin itself means I bleed like a stuck pig. Dignity, always dignity.
So it seemed like a great idea when the haematology nurse suggested ‘investing’ in a home test fingerprint kit. No more hospital visits. No more needles. Much as I loathe the notion of an NHS becoming privatised – which is what a scheme such as thiscould become the start of – I am willing to invest in my own health. So the manufacturers, Roche, offer a home test machoine for the *bargain* price of £299 – at a reduction of £100 – which can be paid for in 24 interest free monthly installments. Now, that ends up being cheaper than having to pay parking fees or bus costs over the same period, so it is becomes appealing, particularly for a life-long ‘condition’. There is a catch – your GP has to agree to prescribe the testing strips on the NHS, otherwise you wind up having to pay 6o odd quid for those also.
That doesn’t sound a problem, right? Quick chat with GP, strips on prescription, I can order the machine and life becomes so much simpler. But, gentle reader, what a world of fantasy you inhabit! Initially, I was told by GP reception that I have to get the strips from the Haematology ward. After a call to them, I’m assured that isn’t the case and it’s the GP who prescribes them, but am urged to contact the maufacturer Roche for all the details. I speak to a helpful lady there who tells me it’s a clinical decision by the GP, but that most of them ‘see the benefits (which sounds a little Orwellian). She kindly sends me a fancy-pants glossy brochure and expensive dvd advertising the testing kit, delivered in a box far, far too big for its contents. So I go back to the GP, who’s very helpful with everything else (I went bcause my scar had started bleeding and I needed some magic antibiotics) but on this matter she’s been told by the Practice she ca’t prescribe them without ‘Something from the Haematology Department. It’s not, I’m told, just a problem with the surgery – perish the thought! – but a ‘Coventry wide problem’. ‘Is that noise your heart?’ she asks , drawing attention to my Thumping Mechanical Valve. ‘I thought it was a clock’. Tick. Tock.
Meanwhile, my erstwhile cousin makes enquiries at her hospital, and it’s clear this shouldn’t be a problem. I’ve now got my gander up (which you wouldn’t want to see. It’s like a camp Incredible Hulk) so decide I’ll take the fight straight to the Dark Tower itself and write to the newfangled NHS commisioning board/group/body, the Clinical Commissioning Group (CCG):
I am a long term warfarin patient and was recently given details by Walsgrave Haematology Unit of the option to buy a home testing kit. My GP has said coventry surgeries are ‘not allowed’ to prescribe XS test strips unless they have a letter from haematology instructing them to do so. I have contacted both the haematology dept and the manufacturer, Roche, who have said it is a clinical GP decision. In addition, I understand that you have allocated a budget to help facilitate this Both my GP and haematology nurse consider home testing useful, both because I am a long term warfarin patient, and because fingerprick testing is better for me than blood collection through a needle, which can be more problemmatic for my veins. I am frustrated that I am not being supported in an exciting and cost/time effective initiative which will bring me huge benefits, and which I am willing to self-fund through investment in the self-monitoring Meter. Additionally, I see benefits in this freeing up NHS testing resources.Can you clarify how I can access these test strips on prescription and what your guidelines on this are?
I’m convinced this will be lost in the bureaucracy of the NHS but lo! am pleasantly surprised a couple of days later to receive a helpful and clear reply:
I have been asked to respond to your query regarding coaguchek testing strips. Firstly apologies for any delay but this message has only just come through to the CCG.
Coaguchek XS strips are now allowed in Coventry on GP prescription but, with agreement with the haematologists, who wrote the protocols, only when the GP is supplied the guarantees that the patient has received the appropriate training and that the machine is going to be regularly maintained. We have to insist on this as we must ensure that testing is appropriate, as getting the dose wrong can result in significant patient harm, and that the test results are accurate at all times.
There should be no reason why your specialist should not have provided this and I will contact them to ensure this. In the meantime please ask your specialist again.
I apologise for any delays.
Which, aside from the odious ‘kind regards’ signature, settles things ONCE AND FOR ALL.
I have appointments with both my GP and the Haematology Unit on Thursday. So we’ll see how they respond in the light of my Flaming Torch of Knowledge…..but for the moment, I’m feeling heard and vindicated. And wondering what The Training they refer to might be. I hope it doesn’t involve role-playing, or Name Games. Or some sort of blood testing exam. With any luck, they’ll just give me another copy of that swanky brochure and expensive dvd…
ACSMA is the Anti-Coagulation Self-Monitoring Alliance and campaigns to support self-testing, and for home slef testing to be provided on he NHS. It lists the benefits for individuals and theNHS on its website, and suggests how you might help.