Optimmune in Scotland - how to get access?

[SharonS]

I have recently been prescribed optimmune (ciclosporine 0.2%) from a private doctor in London. My GP in Edinburgh has told me that due to it being from a private doctor I will need to pay for this. She has checked the cost of one tube of optimmune with a pharmacist who would need to order it in specially - even if I got it as an NHS item, it would be £137, and as I'm having to pay privately I will need to pay a bit more. Can anyone offer me any advice on this at all? I have seen the vet version online for £23 but I don't know if it's the same, and also you need a pet prescription for it which I don't have.

Thank you xx

[littlemermaid]

http://www.ljf.scot.nhs.uk/Pages/default.aspx I would speak to Medicines Management in the NHS hospital, Ophthalmology Lead on formulary committee, and http://www.patientadvicescotland.org.uk/ about getting it NHS. Contact info http://www.nhslothian.scot.nhs.uk/Yo.../2011/2720.pdf. We've had best advice by informal chat or email to hospital Pharmacy. It's normally a standard on NHS formularies. I would definitely ask Moorfields Pharmaceuticals for a price and shop around.

There's also this new stuff http://www.medicines.org.uk/emc/medicine/30584 which is in review with NICE https://www.nice.org.uk/guidance/ind...ent/gid-tag466 but it is 2% compared to Restasis 0.05%.

"Not all medicines suit all patients and there will be times when doctors will need to use medicines that are not in the Lothian Joint Formulary" http://www.ljf.scot.nhs.uk/PatientZo...une%202005.pdf. We need NSAIDs.

[SharonS]

Thank you Littlemermaid, that is excellent advice, I really appreciate it. I will update on how I get on. Xx

[littlemermaid]

Wish you the best of care. Only other thought, our GP was able to pay for NHS prescriptions on the tertiary consultant's private clinical diagnosis and treatment letter, but not on the private prescription only. As General Practitioners (a GP told me as an aside to help us) it's very difficult for them to prescribe meds they don't understand, so it's good to demonstrate that it's in the local Ophthalmology Committee tertiary hospital formulary as a standard.

[SharonS]

Thanks again. I've spent so long trying to get a diagnosis and a treatment plan. The only reason I went private was beause the NHS couldn't help me. Now finally I am on my way to something resembling a diagnosis and have been given a treatment plan - I felt hopeful and relieved. I didn't really expect these obstacles with the medication. This battle has taken such a toll on me, both mentally and physically. I am so stressed and tonight I just feel exhausted and that none of it is worth it.

Hopefully next week I will make an attempt. My GP practice is just the worst. I spoke to my pharmacist today who said that if I could speak to an NHS opthalmologist who would agree with my doctor in London then I should be able to get it prescribed on the NHS - that's £137. Currently privately it's close to £200 he said. I just can't cope I don't understand why this is the case! If it worked for me, it was going to be something that I used indefinitely. It's just so unfair.

[littlemermaid]

This paper shows how doctors battle to get the medicines they need to help us https://www.rcophth.ac.uk/wp-content...-June-2015.pdf. Confirms it's the vet stuff relabelled. Also that Restasis (0.05%) can be imported in some health trusts. I would still ask the tertiary eye hospital pharmacy, head of ophthalmology, and medicines management, and use PASS for support because they will have experience what to do. Maybe also ask for a list of Prescribing Optometrists to see if there's an interested specialist for advice.

It is unfair. Pharmaceutical suppliers are price fixing. An independent pharmacy may have more ideas. High street chain pharmacies are tied to suppliers or often think it's not worth their while. I spoke to head office of one and they said 'negotiate an individual deal for bulk with the franchise holder'. This was just branded lubricant eyedrops so we bought off the internet.

Many of us have learned the hard way that mental health is a priority, so it's good to work out a personal strategy for keeping well when we think about what's happened and what we have to do. Some people here do well with cognitive behavioural therapy and mindfulness techniques http://www.nhs.uk/conditions/stress-...s-anxiety.aspx. There's great strength in being able to share the burden here and be with everyone else working on these problems.

It seems cheaper for the NHS to supply a med than deal with the consequences, but that doesn't appear in the NICE equation or national plan currently. Same with private providers offering medical devices and procedures.

[SharonS]

Hi Littlemermaid, thanks again for your advice. Felt like it was all too much last night, but feeling more myself today.

Do you know why, even if I got it prescribed on the NHS, that I would still need to pay £137? I don't understand it.

My plan is to contact NHS patient advice first thing Monday then make an appointment to see my GP Monday as well to discuss my options. When she called me yesterday, she asked if I could contact the doctor in London to see if there's anything cheaper he could prescribe. She had never heard of it and asked me how it worked.

I will also contact Moorfields for a price.

Aside from that, I don't know how to go about anything else. I am trying to find a dog with dry eyes lol xx

[SharonS]

I emailed moorfields pharmacy and got this reply:

The costs paid for medicines such as ciclosporin eye drops are commercially confidential, therefore I am unable to provide this information.



If you require further information, you should send the request to the Freedom of Information team http://www.nhslothian.scot.nhs.uk/Yo...s/default.aspx

or the Comments/Complaints team http://www.nhslothian.scot.nhs.uk/Yo...s/default.aspx

[littlemermaid]

Moorfields Pharmacy don't sell on private prescription? http://www.moorfields.nhs.uk/service/pharmacy. Sounds like we have to shop around pharmacies.

[SharonS]

I don't know Waiting to hear back from NHS lothian patient advice. I emailed veterinary sites online about selling optimmune with a human prescription - they said NO haha i was worried I would be arrested for even asking them. My doctor in London said he would contact pharmacies also and get back to me. Finally, I am waiting on my diagnosis letter to see if that will make any difference. Feel like I am limbo! xx

[littlemermaid]

Maybe ask about Restasis too.

I think Buckinghamshire Formulary is often used as a standard in eg NHS England, and here is Ciclosporin 0.2% listed http://www.bucksformulary.nhs.uk/cha...rySectionID=11 (either use search on exact spelling or see Miscellaneous, Immunosuppressants in 11.99.99.99)

NHS Trusts have pharmacy businesses now 'supplying all healthcare providers' http://oxfordpharmacystore.co.uk/products/#product_list and here's 0.2% and 0.05%, as an example. Some GP practices have pharmacists to order meds, which is great idea.

NHS Scotland 21 Aug 2015, Pharmaceutical Services Amendments to Drug Tariff in Respect of Special Preparations and Important Unlicensed Medicines http://www.communitypharmacyscotland...ugust-2015.pdf

Eg Optimmune 2x3.5g for £118.30 in London NHS http://www.towerhamletsccg.nhs.uk/Pu...0ointments.pdf

[littlemermaid]

Suggest anyone UK saves this .pdf fact sheet - handy to show GPs and Pharmacists. 'Ciclosporin 0.2% eye ointment can be obtained by Community Pharmacies from vetinary wholesalers or Moorfields Pharmaceuticals.' http://ncl-jfc.org.uk/uploads/3/2/0/...fact_sheet.pdf

'Approved indications. Ciclosporin 0.2% eye ointment is recommended as a treatment option after first-line agents (e.g. ocular lubricants / steroids) have failed or are not tolerated for: Atopic Keratoconjunctivitis (AKC) & Vernal Keratoconjunctivitis (VKC), Dry Eye Disease (DED)/ Keratoconjunctivitis Sicca (KCS), Ocular Rosacea, Thygeson’s keratitis & Chronic graft versus host disease'

UCL and NCLJFC, we love you. 'Many patients encounter difficulty upon trying to obtain topical ophthalmic ciclosporin in primary care due to a reluctance of GP’s to prescribe. Such decisions may be based on a lack of information regarding choice of product, indication for use, safety, treatment duration, licensing status, cost, availability and place in therapy. This protocol aims to provide information to accompany informed prescribing.'

[SharonS]

Very handy little mermaid, I am going to show that to my GP xx