Does anyone have a definitive list of counties in the UK that prescribe peg interferon on the NHS without having to aquire funding.
It's a lottery as to whether you can access this drug depending on where you live. Unfortunately I can't access it here in Merseyside, but if I lived down the road in Cheshire I could. I'd like to know how many areas can't and why ?
Hi Ian,
let’s avoid the elephant in the room for now.
I was supposed to start peg last year currently on hold due to covid. I am in north west London and in a different borough to my haematology dept which is Hammersmith hospital, though may surprise you is not in Hammersmith.
This week I was at Charing Cross to see a Podiatric surgeon and you’ve guessed it isn’t in Charing Cross either though is very near Hammersmith. Probably not much help in your survey but looks like i would be able to get it as will be prescribed by the hospital and not GP.
Hi mate, yes it's ludicrous that some areas just dole it out and others say they can't access it. Why not ? It's supposedly all the NHS. I just don't understand it. I've refused hydroxy as I've had it before and it wasn't a pleasurable experience for me. Plus I've also had skin cancer and I'm still being monitored by the hospital for this for life and as we all know a side affect of hydroxy is skin cancer . Why give someone who is prone to skin cancers a drug like that ! Madness ! They've said they would need to apply for funding for peg ? I just don't get it.
So I'm currently receiving no treatment.
What you chaps in the UK deal with in your system is not so different than what we deal with in the USA. For us, it is all about what insurance plan you are on. Each has its own formulary. Some are better than others.
Our closest NHS corollary is Medicare, which is the national health program for people age 65 +. For people with lower-tier insurance, Medicare improves access to care. For people with good insurance who are forced onto Medicare when they turn 65, access to care can become more difficult. It is a cumbersome, labyrinthine system of care.
What holds true across all of these systems is that assertive patients receive higher quality care. Passive patients do not. Accessing more expensive medications is often more difficult. It requires extra work to access the meds. Some systems and some providers are just not willing to do the work to access more expensive meds, even when they are actually available. Sometimes unremitting persistence is what is needed. Can't really speak to how things work in your specific system, but I think the great quote from W. Churchill applies - "Never Surrender."
Whatever your appeal process is, suggest you access it. Don't give up. Keep kicking your very legitimate grievance up the chain-of-command as high as it needs to go. Persistence can overcome resistance.
All the best to you and all of us who have to navigate systems of care issues.
Hi Conno61,
You would think your Specialist would be pushing for funding on your behalf, given your complex medical history. Surely, you’re the perfect case to fight for....unless there’s a restriction on funding?
I can’t say I know how the NHS system works. I’m on hydrea and it works for me, but I can remember enquiring about Pegasys, and the discussion being kind of closed down in a way that I felt at the time had to be related to cost; however, cost doesn’t appear to be an issue in all hospitals. I think you may have better treatment options in the larger hospitals such as, London, Birmingham, Leicester etc.
In comparison, my husband has RA and his Consultant Rheumatologist has applied to NICE so many times on his behalf for costly biological therapy and Jak inhibitor drugs, and has been successful each time. It’s truly baffling!
What about transferring to Cheshire if it’s not too complicated?
Hi. I’m South Lanarkshire. I had no idea that there were issues getting it. That’s crap!! x
My husband asked if he could try this medication he was told they don't use it because of the side effects.He said well I've had no side effects from other medication .
So it really wasn't an option for him to even try .
My husband has post PV MF .
Tracey
Sounds like they fobbed him off there. All the best to your hubby. 👍
I think with some hospitals it is a cost issue. My previous main Consultant at my old hospital wouldn't entertain you if you mentioned any other meds apart from Hydrea. I had constant battles with him especially when I found out from another more likeable Haematologist there it was down to cost. After one argument too many I asked to be referred to the Queen Elizabeth Hospital in Birmingham. There the Consultant had no qualms about trying me on Pegulated Interferon. After discussing the possible side effects I decided to wait. I don't think many Consultants at the moment would consider changing a patients medication at the moment because with all new medication you have to be closely monitered initially and Hospitals are still feeling the effects from Covid. Tina.🤗
As far as I’m aware you can elect to transfer your treatment to another hospital outside your home area if that helps you access Pegasys, or for other reasons.
I’m lucky that Leicester provides it with no problem but have heard of people in other areas transferring.
Would it work for you to be treated in Cheshire? If so it’s maybe worth a try?
Hello connon61, I have been prescribed Hydroxycarbamide for the last twenty years and have had some skin cancer issues. I attend Arrowe Park hospital and was wondering the hospital you attend. Thanks for reading
Dr Butt was at Arrowe Park for some time, before moving to the Royal. It is good to read about other MPN patients near by, I was prescribed interferon at Arrowe Park but afraid it sent me a bit loopy. Good luck to you in your quest for the right Meds for you.
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