Roflumilast

[Alice70]

Hi ,just wondering if anyone has been offered this med or is using this medicines

[pasquino]

27 JUNE, 2017 BY JO STEPHENSON

Thousands of patients with chronic obstructive pulmonary disease look set to benefit from a drug that is expected to be available for routine use in the NHS by the end of the year, following official approval.

The drug – roflumilast – was previously only sanctioned for use in clinical trials but has now been given the seal of approval by the National Institute for Health and Care Excellence to tackle severe COPD in adults whose symptoms have failed to respond to other treatments.

nursingtimes.net/news/resea...

[Alice70 in reply to pasquino]

Thank you so much for this pasquino ,looks like this was published five years ago ,if I have read it correctly it looks like it has been passed to use ,so still wondering why we haven't been offered it ,as I have severe copd and my meds aren't doing much for me ,I googled is there anything on the arison in new meds ,I came across this ,still wondering why it is not offered to someone like myself

[pasquino in reply to Alice70]

Very simple ....visit a private doctor 100/150 pounds and have it prescribed.NHS doctors are often reluctant to spend govt money...

[Hidden in reply to pasquino]

It doesn’t work that way, Pasquino. It’s also worth saying that most private appointments in the UK cost around £250 to start with. Many private medics work within the nhs as a ‘day job’, but can only prescribe in line with existing licensing recommendations in any event, so only to those who would be eligible via the nhs. Even if it’s possible to appropriately prescribe a drug to someone, prescriptions provided privately also have to be paid for privately unless a patient can get transferred onto an nhs list. The majority of people would not be in a position to pay for scripts at significant cost on an ongoing basis.

[pasquino in reply to Hidden]

To me in London it worked...private visit £ 180, given private prescription , bought medicine from private pharmacy...used money from various disability benefit for private care and medicines instead of going on cruises , that is the use of benefits.Taking care of our health is more important than bingo, holidays, pubs, specially if recourse to private can be done only occasionally in cases of particularly long waiting time or essential medicines .

Every disabled person should keep a buffer account for emergencies , now that we all know how long could be NHS waiting times .

I know, is not fair or right, but this is the actual situation; we will try to correct the situation with next elections but this will take years...in the meantime...

[Alice70 in reply to pasquino]

I haven't seen my consultant for going on 3 half years so I've enquired about private oppiontment today ,will be making one tomorrow

[pasquino in reply to Alice70]

same for me , I must also say that a private visit is far more detailed and longer....after my stent I visited a private SENIOR cardiologist for a 40 minutes visit including an ultrasound scan for 230 pounds...after a week I received a phone call from him who wanted to know if everything was fine, same again when he knew from my wife that I was in hospital where I received his reassuring call.I use NHS only for blood tests and exams that can be done in two/three weeks or for non urgent surgery (cataract , hernia, and similar)..tomorrow I will bring my wife for an urgent shoulder MRI scan....booked two days ago done tomorrow (£ 250) to follow private visit with a professor on Tuesday the 7th at 200 pounds, all sorted in ONE week.

Shop around and you will find the better prices ...

[Hidden in reply to pasquino]

I was going to just leave it, but I’m afraid I really can’t. I do have to very strongly disagree with you on the basic premise of your reply.

My 14 year old daughter and I are both in receipt of PIP/DLA. In spite of fairly extensive medical issues of my own, probably partly brought on by the stress of her complex needs, I’m a full-time carer to her, and a single dad. Her medical needs are such that I haven’t been able to work since I got custody when the marriage broke down 8 years ago. As the ex essentially did a bunk, unable to cope, and is now a rabid, uninvolved alcoholic, I had to give up my career to care for the child, and ultimately moved us 250 miles away from friends and family to ensure proper medical treatment for her lung condition: as much as I love her to death, the child has quite literally cost me everything from my professional identity and social support, to my entire meaning and purpose beyond being a parent.

I don’t drink at all, or go out. I don’t have any expensive hobbies or tastes, or do anything that could be remotely considered exotic, other than pay for a cleaner to come in once a fortnight for some specific jobs that I physically can’t do anymore. It costs me £40. The last holiday we had anywhere was in 2018, and other than spending money, was paid for entirely by a medical charity. Unless you count 8 to 10+ weeks a year on the children’s ward (minimum) there’s not even been a tent pitch on the coast since. No nights out, no bingo, no gym memberships, hell, I even got rid of our tv licence at the start of the year, and yet we still don’t have the extra financial resources available to pay for private medical care. So, whilst I’m genuinely glad you’re in a position whereby you and your wife can, the assumption that the rest of us should also be able to afford it, and that if we’re not it can only be because we’re not prioritising our health over what you consider to be frivolous activities and pleasures, is more than a little short-sighted. For me, personally, I actually find it offensive.

I’m not looking to have a conversation with you on the subject and won’t be responding to any further replies on this thread as a result, but would just gently ask that you take a few moments to really reflect on what you’ve written, sir. You have no idea of other members’ personal and financial circumstances, so regardless of your underlying intent, to say everyone in receipt of disability benefits should be able to afford ongoing, private medical care comes across as extremely judgemental and somewhat arrogant. Particularly when the basis of your argument would appear to purely be that you’re privileged enough to be able to do so.

[Hidden]

It’s considered an add-on to bronchodilator therapy (even by the manufacturer) and criteria for access to it are quite strict, Alice. Firstly, it’s only recommended for people with chronic bronchitis. If someone has CB, then they also have to have an fev1 of less than 50% AFTER taking a bronchodilator, and a history of at least two exacerbations in the last 12 months in spite of being on triple therapy. Triple therapy means the person has to be on a LAMA, LABA, and inhaled steroid. If you meet all of those, then roflumilast can be prescribed by a respiratory specialist.

[Alice70 in reply to Hidden]

Thanks you Charlie for this info ,I understand it better now