Hi, just to advise for those who asked I had my application for self testing turned down by my local CCG as I didn't fit their criteria as being classed as an exceptional case. I can appeal but only on certain grounds very frustrating.
My choices therefore are fund myself for as long as I can afford it which is not very practical and possibly could be wasteful if I end up with a machine I can't buy strips for.
Continue attending local surgery for venous blood tests on a weekly basis and risk long term damage to my veins and have continual bruising/scarring.
Finally ignore rhematologists advice and attend tests less often risking my health further.
I can't consider moving to another area where it would be approved as my local council are very good in their support of me and I would lose this.
The irony is my last doctors practice got me into my current state of health due to their ignoring my requests for referrals to a specialist I once had insisting they were managing me on a low INR and that testing every 6-8 was satisfactory.
Needless to say I'm not too pleased.
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lloydyuk
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I think you need a good patient advocate and also to enlist your MP. They need to see the money that could be save here, not in just day to day stuff, but the avoiding the bigger crisis. MaryF
I don't know if there is an actual service as such, but I have acted as one for a friend. You need your most articulate and professional if possible friend/colleague to come with you and help you fight for what you need. I know this organization sometimes has ideas if you contact them, voiceability.org/ also your local council may have access to an advocacy service. I have only done it for others off my own back. You need when seeing you MP to state the facts clearly and give a brief history, and with whoever you choose to help you, plan carefully with what you wish to achieve, it is worth a shot. MaryF
Hi, you are not alone in being turned down, my husband has also been turned down. We were going to buy the machine and just wanted the strips on prescription. Very short sited of practises I feel as when INR low he has a stroke ( 3 to date) and that has massive cost implications including no longer being able to work. Keep this site posted on your on going fight as I'm sure many could benefit from knowing how or what to do. Is it something P A T can help with? Not had experience of them but I shall be looking into the service. Good luck
Thank you I will. I agree it's short sighted I've also offered to by the machine but it's the strips that make it unrealistic for most. First stop my MP I think, have seen him before when it took me over a year to be able to claim any benefit for help as I can't work either and had never been in the system prior.
We had to have bank loans and a credit card to pay for day to day things going we'd get back pay at some point. I'd been a tax payer since 16 and was lucky to have had a very good job until my illness. I often wonder why I bothered!! Lol
It seems crazy to me my rheumatologist says I need bloods weekly so if and when I can volunteer or work as well as accepting my disabilities they will also have to agree to me going off once a week!! I was in hospital for 6 months in total and with all the treatment I was lucky to get I worked out once it cost the NHS well over £200k!!! Lack of frequent testing I've been warned could mean a possibility of it happening again. Ridiculous situation people like us find ourselves in.
I do not know how lucky I am to live close to Stockholm where these Machines and strips are free after prescription since one year back. They have noticed it costs more to have a stroke and not be able to work.
Best wishes to you and good luck with everything you do!
Thank you very kind. Perhaps I will start raising the profile of these types of issues.....now where should I start??
"The irony is my last doctors practice got me into my current state of health due to their ignoring my requests for referrals to a specialist I once had insisting they were managing me on a low INR and that testing every 6-8 was satisfactory. "
Which referrals may I ask? It's always hard to get any referrals outside the area in my own experience. My last valid referral request took about 6 months to go through when I ended up at A & E..
I don't know enough about how this machine gets funded in UK. Are these usually prescribed by GP Surgery (hence subject to CCG approval) instead of by the Rheumatology dep where you are treated? I personally feel that these machines should be prescribed directly by the Rheumatology when a patient was diagnosed with APS instead of going through CCG/GP (where you end up with the geographical lottery). Is this something the APS foundation is working to improve for the patients with APS? Generally, it's a dreadful situation to be in x
Hi sorry re the referrals it's a long story....when I was 21 I started having all sorts of strange symptoms and was fobbed off by my then GP 3 times eventually they took my blood pressure and sent me off. I later received a call at work telling me to go to my nearest hospital. I was checked admitted and stayed there for weeks. This was in 1995. All manner of tests were done and eventually I was discharged under a cardiologist!
I was tested monthly and roughy 7 years later moved to another town in Wiltshire. My GP was fairly good referring me to a haematologist at nearby Swindon hospital. I remained monitored locally and about 3 years later moved back to my home city but diff area so diff GP. Here they had a surgery monitoring machine where they tested and adjusted warfarin as necessary. Appointments were reduced to monthly then 2 monthly as stable. I asked numerous times to be under the care of a specialist but always told no need as they were doing everything. I then moved again and because of past disappointment didn't say too much assuming the protocol was the same....for ward 5 years New Year's Eve and bang! Cerebellar haemorrhage and first symptom of what then quickly became CAPS....I'm very aware it could happen again if not monitored properly, great.
Thank you, much appreciated. I live in south Gloucestershire effectively north Bristol or the old north Avon.
I was thinking the same regarding my MP and as I've said before elsewhere he was very approachable and compassionate to my situation.
I'll give it a shot.
"asked numerous times to be under the care of a specialist but always told no need as they were doing everything. I then moved again and because of past disappointment didn't say too much assuming the protocol was the same....for ward 5 years New Year's Eve and bang! Cerebellar haemorrhage and first symptom of what then quickly became CAPS....I'm very aware it could happen again if not monitored properly, great."
Unbelievable..quite frankly..having said that I'm not somewhat surprised given my own experience. I know exactly what you mean. I hope you'll get the machine with the help of your MP very soon. APsnotFab, I didn't even know there was the NICE guidelines for this condition! Thank you xx
Our free INR self testing service is available to patients in Durham, Darlington, Hull, Ilkley, Wigan and Isle of Wight. Please help us to spread the word to enable this for all warfarin patients inhealthcare.co.uk/product/...
This is a site for APS (Hughes Syndrome) and as selftesting always need a Specialist of our illness who is responsible for our testings.
So automatic telephonecalls etc may be impossible and dangerous for us to use. Doublecheques with a bloodtest in the vein must also be done at a lab from time to time , as a fingerprick test with the machine and a vein-test at a lab may differ.
I lied to you one year ago. We do not have the machines for free in Stockholm only the strips but that is good enough. The Roche-machine is fantastic but I have to be supervised by my Hematologist who is in charge of my testing although I monitor myself etc.
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Thank you xx
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