NHS trying to restrict prescribing for "minor conditions such as dry eye"....

[CharlieGreenEyes]

Not sure if just my local area - so apologies for panicking anyone needlessly. Although these sort of things often start as pilots in one area and then spread so perhaps still relevant.

Hard to read for too long so I'm sorry if this has already been mentioned here. Thought I should warn people that their CCG might try to limit eyedrop prescriptions. Not sure if it's just my local area.

My local CCG is currently consulting about restricting or ending NHS prescriptions for what they describe as minor conditions. I was so upset and pretty angry to see dry eye included amongst these. It's been such a draining fight - ongoing - to get taken seriously and obtain any form of effective treatment, and it just seems like a losing battle. The NHS (at least in my local area) is dismissing dry eye, and ignoring the fact that for some people (all of us here, for a start) it's a serious and sometimes disabling condition.

I given my response to the consultation but don't suppose my one voice will make much difference. The consultation front-page clearly wants to downplay things. They mention medicines for colds and coughs - so it seems they want the public to assume they only want to stop prescriptions for very mild (for most people) conditions that can very cheaply be treated OTC.

[PhoenixEyes]

If an ophthalmologist considers your dry eye to be "severe" and not "mild" then would that mitigate this?

It is sad though that they don't seem interested in funding preventative healthcare for milder cases, as mild cases can later progress into severe dry eye that is more costly to the NHS. Ikervis for example is at least £72 per month.

[CharlieGreenEyes]

Can't be certain but assume if a hospital consultant has diagnosed you - especially with severe dry eye - you'll still get eyedrops. So, yes, I'll be okay - but many other people won't be, including those who haven't yet been see for a diagnosis (there's a 6-month wait to see an NHS opthalmologist in my area - and I was referred urgently due to my complex ocular history!).

I just think it's a worrying indication of how they view dry eye (they're including it as what they call a "minor condition that you recover from" and putting it next to colds and coughs. I don't have much faith in getting any help from the NHS ophs round here now (I'm just grateful family helped pay for me to been seen privately).

They're being very sneaky actually - they don't mention dry eye on their large-print easy to notice adverts (in local newspapers) or the front page of the brochure in GP surgeries. They refer to colds and coughs. So I think they're trying to persuade the public to support their cost-cutting by tricking them into thinking it is just very cheap OTC medicines for usually mild, temporary illnesses.

I really feel for people in my area who haven't yet been seen at hospital, or who aren't quite severe but still struggling a lot with it. I'm convinvced had I been taken more seriously several years ago when things first got difficult, my eyes wouldn't have got as bad as they have.

So many of us here have been dismissed by doctors including opths. I'd already seen several NHS opths and one private one - all of whom hadn't really been that bothered (the last one who I saw privately but who works at my local eye department in the NHS even told me my MGD was under control.....2 months before the current opth told me my TBUT was 0-1 and I had several corneal abrasions in my worse eye).

If an ophthalmologist considers your dry eye to be "severe" and not "mild" then would that mitigate this?

It is sad though that they don't seem interested in funding preventative healthcare for milder cases, as mild cases can later progress into severe dry eye that is more costly to the NHS. Ikervis for example is at least £72 per month.

[littlemermaid]

[Withdrawn]

[Roderick]

Socialized medicine for you! Being rubbed at gunpoint by unaccountable bureaucrats every year to fund mediocrity across the board.

I long learned not to count on it and to only count on myself.

[littlemermaid]

Roderick, does your health insurance cover your eye condition?

[CharlieGreenEyes]

I've found both NHS and private consultants/opths who don't seem bothered/are dismissive of dry eye conditions. There are a few decent/experienced ones out there - but it's a stressful and draining battle finding them (especially with vision and eye issues, which make research harder, i.e. I can't come and read or comment on this forum everyday when things get bad for my eyes).

What I'm finding bad about the NHS is the postcode lottery we have. It seems ridiculous and unfair that there isn't a central system - so that treatments, prescriptions, etc are available to all regardless of where you live in the UK.

Hi littlemermaid. I'm sorry, I hope you don't mind me saying - I saw briefly some of your reply (now deleted). I wasn't logged-in because I've had a bad few weeks with my eyes so just browsed quickly - and just wanted to thank you for the info/detail/opinion. I can't remember much of what you said but remember thinking it was useful.

[Goldfinch]

This is really important.
consultation documents are at: https://www.engage.england.nhs.uk/co...ly-prescribed/
and recommend others in England to do as well and follow the links on this website to comment. At this stage they are consulting on the principles, so get your views in - before 21st October.

Charlie, it looks as if your local CCG is going ahead using the national guidance.
If you look at p25, S5 of the long document and p5-7 in the FAQs, NHS England is proposing a review of over 3,000 products which could be bought OTC in a pharmacy or supermarket instead of being prescribed. I was also disturbed to see "lubricating eye drops" included with other stuff that I would buy OTC for minor ailments anyway, eg cough and cold remedies and sunscreens. This downplays the significance of eye drops to dry eye sufferers.

The key point is on p6 of the FAQs "medicines which are used for longer term, chronic conditions but which are being prescribed at an est. cost of £545m yr." They give egs of paracetomol and antihistamines.
The other two categories are "clinically ineffective" and "short term conditions suitable for self care......" Personally I don't have a problem with these. My objections to the first category are:

• This downplays the significance of the condition of dry eye; it is common and not easy to manage, particularly for those with moderate to severe dry eye.
• The condition limits reading, driving, computer use and sufferers have problems with air conditioning, fans and heating.
• This therefore affects the ability to work, quality of life, social interactions.
• It pushes further costs to the patient; many dry eye sufferers supplement their prescribed medication with OTC meds as well as eye wear, humidifiers, sleep shields, heat masks etc, and pay for these. They already spend a considerable amount of money over a year, so the cost of eye drops would be a further cost which cannot always be afforded.
• Some sufferers use considerable quantities of eye drops to control or alleviate the symptoms and need more than one bottle per month.
• Some of the eye drops cost significantly more than prescription charges, eg Hylo-Forte is £18 for 10ml; thealoz £14 for10ml. (Rx per item £8.60)
• Who will monitor the OTC meds? and watch out for contra-indications?
• There will be an impact upon people who don't pay for their prescriptions.

Please everyone who reads this and thinks that they will be affected, send a comment to NHS England!

[CharlieGreenEyes]

Goldfich, I agree completely with you. It's so worrying that they are trying to downplay dry eye disease.

I've desperately tried to get everyone I know to complete the consultation and even wrote to my local paper (in response to an advert they had from the CCG about this) but they didn't publish the letter. I don't need to give up though. And don't think anyone else here (or elsewhere) should either. I plan to write again to the paper and hopefully more awareness will be raised - even after the consultation closes (I think this week or next).

[Jenn1]

Hi im so sorry to hear about this but this isnt something new sadly. In 2010 I was given Accutane by the NHS and had to fight to get eye drops and tablets to stop my eyes from burning like crazy... although my eyes are somewhat better now i still have days every week when my eyes sting or burn and need eye drops and to think that i'd be refused any help in obtaining them is criminal since at the time there was no mention of this as a side effect in taking the drug. I was at the start of my eye problems even made to leave my old GP for requesting my eye drops too often every month because they wanted to save their money and bonuses which infuriated me immensely when other patients were on 8+ medicines monthly!!! Even an NHS nurse had told me to tell that old GP to f...off since he knew how bad my eyes were at the time. Definitely one to petition MPs about since eye problems affect a persons ability to function day to day immensely and shouldnt be taken as a minor issue.

[CharlieGreenEyes]

HI Jenn1,

Terrible that you had such difficulty with your old GP - especially since you developed the eye problems from a drug you were prescribed! I don't know anything about accutane except that I've seen quite a few people on here got there eye problems after taking it. I hope you are now able to get your eyedrops without problems. It's ridiculous that access should be restricted - it's a false economy because when dry eye is more severe, people are at risk of corneal scarring and possible vision loss - which would cost the NHS a lot more to treat surely than providing some eyedrops.

[Jenn1]

HI Jenn1,

Terrible that you had such difficulty with your old GP - especially since you developed the eye problems from a drug you were prescribed! I don't know anything about accutane except that I've seen quite a few people on here got there eye problems after taking it. I hope you are now able to get your eyedrops without problems. It's ridiculous that access should be restricted - it's a false economy because when dry eye is more severe, people are at risk of corneal scarring and possible vision loss - which would cost the NHS a lot more to treat surely than providing some eyedrops.

Oh I agree completely! I'm 100% sure the drugs company and dermatologists know the risks of eye damage due to taking the drug and what's worse is the fact that when the damage is done no one including ophthalmologists want to help you. Eye issues I agree can lead to blindness and I get the burning and red veins growing into the cornea and pain and even visual migraines which I believe the drug also caused due to headaches when on the drugs. It's scary dealing with this all on our own when you have ever growing floaters and visual clouding and are refused help or told to not come back because the eye hospitals can't treat you unless you have a cataract or other eye condition.

If it wasn't for this website and Rebecca and others I'd have suffered in silence and not known how to help myself even. I had to teach myself how to care for my eyes and my routine was posted here a few years ago to help others.

I do hope you're getting the help you need and managing some.