Does anybody know exactly what PCT's in UK offer AUTOLOGOUS SERUM? Really important.

[lulu]

Hello All
Well been turned down on NHS for Autologous Serum, despite my optholmology requesting it. The Drugs and Theraputics committee have turned me down flat, based on "its an expensive treatment with NO proven results".
So, now I must start the long and very hard process of appealing the decision. Firstly I have to ask the committee to actually put it before the PCT as of yet it has not gone that far. But I am sure that they will certainly say no. I am not actually allowed to submit an appeal as it has not gone before the actul PCT, what a bloody waste of time as they are probably going to say no and I then have to start to argue....... My consultant's secretary has told me that I have to write to my consultant telling him why I need the medication and he has to submit the new request letter asking the PCT to look at it! Despite him writing to me having told me that he has submitted as much evidence as he could. He is probably as annoyed as I am.
I have spent literally thousands of pounds out of my own pocket in the last few years on various doctors and tests so I do not feel guilty asking the NHS to help me out here as I have managed to drain most of my resources trying to help my other symptoms.
So does anybody in the UK have experience of AS on the NHS????? Or if they know of PCT's who have granted permission???? I will write to the Health Service to see if they can list the relevant PCT's whom have prescribed this. THe NHS do provide a leaflet and I know of at least one member on here who is in the UK and has had some luck. The blood service might be able to help I guess.
I need to get a breakdown of the cost which I had heard did not appear to be much more than the cost of some of the more expensive eye drops, when you take into account the cost of the personal delivery by courier to your door of the blood product. (a lot cheaper than some "unessesary" treatment currently provided on the NHS, sorry for rant)
I believe that this may provide me with a better quality of life as does my consultant, and it should at least be given a go to not only myself but to the scores of sufferer's who after years of trying so much, have little to lose.
Can anyone add anything else to this?
Much appreciation.
Lulu

[irish eyes]

Hi Lulu

I assume you saw my pm to you.

You could always try contacting the National Tissue Services Team in Liverpool. They process and despatch drops to patients. This is their phone number 0151 552 7078.

They might be able to give you a bit of guidance.

[kanon]

Wow, I am an American here learning a lot about what You guys in the Uk have to go through with your medical system. (And learning abou the Netherlands since I'm living here for a bit...having a hard time with the system here, guess I'm just a spoiled American who is used to good healthcare . Not to get political, but I for one, like the system we have in the States, and hope Obama doesn't lead us down the wrong road. I'd love to hear more about how analogous serum works since I suffering severe dry eye...I hope all works out for you!

[littlemermaid]

Lulu, Moorfields - autologous serum, BMJ 2001 Do you think to make a special case it would be based on the autoimmune condition?

NICE guidelines, BetterInformationOnUnlicensedDrugS 'Health Secretary Andrew Lansley said: “The NHS we want to create is one where doctors and patients at local level have the power to take the best clinical decisions together. Wherever possible we should apply common sense solutions - especially to longstanding problems such as this - to ensure that patients can access the treatment they and their doctor think best for them.”' NICE clinical guidelines Eye

Somewhere out there is a national ophthalmology advisory group on current NHS meds provision dictating policy - still trying to find out who's on it. Dept of Health better-access-to-drugs-for-rare-disease-patients Irish is right, autologous serum is a national issue. I'm still wondering if Cambridge University Hospitals eg Addenbrookes would do this for you and you could get progress through eg rheumatology/immunology/vascular or ocular immunology (eg listed as uveitis). Didn't you have kidney involvement? maybe David Jayne.

Meanwhile I'm trying to
- lobby on coordinated provision for rare disease through King's Fund (they've just submitted a policy document on management of long term conditions)
- talk to Patients Association on failing provison in the NHS
- look at preventable blindness eye charities again for help with essential eyedrops not on the PCT lists - important to call it allergy because the NHS does not recognise chemical hypersensitivity despite what the top ophth tell them

JUst in case it's relevant - I've lodged LM's history for advice with Patient Liaison at one national hospital, one regional PCT (the GP referral committee is ignorant on rare conditions, esp paediatric - we've had 3 requests by national hospital consultants to GP practice for referral to local hospital consultants blocked - 2 essential, 1 investigative). If you find a kick-ass adviser in PALS, make sure it's clear they should not approach any docs without your permission. I am not happy about this - the GP practice have indicated that if I would care to go private, paediatric, to test the waters, they would then be more comfortable making a case to the NHS referral committee <raises eyebrow to GP while concealing all-consuming internal fuming incandescent rage (learned this technique from the docs)>

I'm not discounting NHS medico-legal departments for advice, they're more impartial than one would think ('here to effect change'). To get a successful appeal to a PCT, I think we'd have to go above their heads so it's easier for them to concede. I'd be taking experienced legal advice, but also looking for other patient advocates dealing with the same problems. Also hiring an expert 'name' from eg Moorfields to provide evidence on the success of autologous serum and damaging increasing allergy to other drops in autoimmune conditions.

If PCTs are not providing meds like autologous serum or the PF drops the consultants want to use, then the NHS will have to make arrangements for co-payment. I'm not sure who's lobbying well on this in the rare disease networks. I think we need to look wider for patient groups - I'm with a neuro one that has an Addenbrooke's prof as the chair. Powerful. Do you know what a useful rare disease patient group would be for you?

There must be many people out there with this unlisted meds problem. Please don't anyone blame the docs - the BMA and GPs are as desperately furious as we are, and most GPs don't want to be in Commissioning Groups and have to ration the service. Especially for specialisms they have no basic knowledge in - they're saying they don't have time to read any complicated letters they do actually have from the hospitals in the 5 min appointment slot available, let alone Google the conditions. So I think the PCT referrals and drugs committees can be similar. Certainly, there's doubt amongst medics round by us whether referrals are reviewed even by a doctor - that would need to be one qualified to assess rare disease all the specialisms, of course. The telling phrase is 'not much is known about this condition', ie they are not current.

Good luck Lulu - hopefully other PCTs will have a good protocol and yours will go along with it. http://www.specialisedservices.nhs.uk/ Specialised commissioning from specialised NHS services.

Here's an indication of the Moorfields' view http://www.dryeyesmedical.com/treatments.aspx

Autologous-serum-drops-versus-artificial-tears Rebecca's blog for a start with research abstracts (then a PubMed search).
The Cochrane Library would trump any contradictory research anyone digs up http://eyes.cochrane.org/
http://www.nih.gov/ US Dept of Health and Human Services, National Institutes of Health - guidance and further research

[irish eyes]

http://www.nhsbt.nhs.uk/tissueservic...es/autologous/

This link takes you to an explanation of protocol etc (serum)

[lulu]

Irish Eyes and Little Mermaid,
What would I do without you guys, sound advice as always!
Thankyou. Time to rewrite some appeal letters as I am seeing the optho on Monday.
I really appreciate the research.
Love Lulu x

[lulu]

Saw my othamologist yesterday whom was very kind and seemed to care about how I was suffering. He said that there was not much they could offer me now as the blood drops have now been refused but that he would help me appeal. I think that at the end of the day I will be researching for years on this one to throw reasons at them as to why I should be given this treatment. But I am going to do this as I have spent so much money on private care in the past. My optho said that if I lived in other parts of the country I would probably be granted the treatment and that the Norfolk PCT is very cash strapped! How frustrating as this means of course that i cannot get an out of area refferral because the PCT still have to fund.
He did say that my eyes did not look too great, no kidding, they just have not made the usual vaugue improvement that they can make in the summer. My rheumatologist when asked to take a more pro active role in my illness, decided to remove my sjogrens tag and say she did not really know what was wrong!!!!! Despite me having several well proven sytemic symptoms. Interesting that she turns to be the chairperson of the Drugs and Theraputics committee........ A really unpleasant doctor.
So I now have to start the long process.
Lulu x

[littlemermaid]

Are we sure the PCT fund if it's a national hospital like Moorfields or Addenbrookes or a specialist clinic in a London hospital? You are still undiagnosed then according to rheumatology so that justifies onward referral by the ophth for autoimmune investigation. Eg we are in 3 tertiary referral hospitals, 4 secondary sector, all in 3 PCTs plus 2 national - all necessary for different parts of the anatomy due to lack of service and to get 24/7 cover. The costs they fuss about are referral cost (set price apparently) + drugs.

These guys may be good? http://www.raredisease.org.uk/ Everyone must be in the same situation.

Love from both of us <hug>

[lulu]

LM
I have asked the Optho for help in a diagnoses, even though I know that I do have Sjogrens, its just something that I know as I have so many other clinical manifestations of it, sever IC being one of them, let alone tha APS.
He is great but says that it does not matter what the cause, he treats what he sees and that it what concerns him, and that he knows the PCT will not wear me being refferred on out of area when the locals should be able to deal with SJogrens. That is the problem I am having with my GP at the moment, she has said that recently the PCT is refusing to fund out of area if it could be dealt with locally , which in theory it can be. So on both sides I am getting the same response, I know in the end that I will have to pay a consultant to re diagnose. The choice was in theory in place prior to the coalition getting in. Now that door is being swiftly closed. We are told we have choice, on paper, the reality is different. I have spent the last few weeks talking to many different agencies and it comes down to the same thing, money............
So unfortunately like you I thought that being re refferred might be an option, it is'nt, not anymore anyway, not until something changes. I think I must have tried every angle now. The next option is bascially to stop being nice about it. I am going to involve my MP and see if it helps.
I have looked into the rare disease angle, although I have been told that mine is more of a neglected disease rather than rare, that is something I am writing about at the moment but all the feedback so far has been to stonewall me on that one. We are now dealiing with something slightly different in the form of this present governments response to health and its not a positive experience for those in chronic distress. It does annoy me that there is so much waste in the NHS, I had to take part in a paper survey whilst at my hopsital the other day, how much treatment would that have payed for?
Thanks for your help and suggestions. Always appreciate another angle.
Lulu x

[littlemermaid]

Hi Lulu, I'm just working up to a PM to you because we are similar but first I need to talk to our Patient Liaison adviser for the PCT - re our GP refusals, she's talking about dealing with the Practice Manager.

I'm thinking the NHS can't refuse a second opinion if the rheumatologist can't diagnose or treat - Patient Liaison could advise how to get this.

If you want to go this way, 38 degrees is an independent lobby group (38 degrees is the tipping point from vertical). They managed to prevent the very worst of the Health & Social Care bill, esp on obligation to treat, by hiring a team of lawyers and public petition:

'What's happening to the NHS near you? Around the country, we're seeing worrying signs - hospitals closed or privatised, treatment rationed, or waiting times getting longer. Are there problems where you are? If so, please can you share what you know to help prepare the next phase of the 38 Degrees NHS campaign? By working together we can build up a picture of what's happening to our NHS locally. That means we can sound the alarm to stop things going wrong. Maybe you've experienced problems first hand when being treated. Maybe you've read a report in a local paper. Maybe you work in the NHS yourself. Whatever you know, please share it - volunteers in the 38 Degrees office will read through all the info to help prepare the next wave of NHS campaigns. Take a couple of minutes to share what you know by clicking here: https://secure.38degrees.org.uk/nhs-local-information

We’ve already seen how powerful local campaigning on the NHS can be. When 38 Degrees members in South London found out their local hospitals were threatened with going bust, they moved fast to launch a petition to protect their local services. In a few days nearly 4000 people signed the petition, sending a powerful message to NHS bosses. So can you share what’s happening to the NHS in your area? Are there signs of cuts and privatisation? Have you had to wait longer for an appointment? What do your friends and neighbours think? Have they heard stories about what’s happening near you?

When we voted together to carry on campaigning to protect our NHS, we prioritised building up a national picture of how the cuts and privatisation are impacting on the NHS. We also voted to campaign at a local level when things go wrong. Working together now to get the facts about the changes is a crucial first step to making sure we can sound the alarm when our local services are in danger. Please fill in the survey to share what’s happening in your area.

Thanks for being involved, Becky, David, Hannah and the 38 Degrees team'

I have to mention the BMA and trawling GP opinion websites - no one wanted this. I'm finding the more we engage with patients and docs locally, the more it is a burden shared. One facet is that because docs don't know what they're doing on gatekeepering, it's been one month 'no' and the next month 'yes'. x

[lulu]

Hi LM
Thanks for the help.
Yes she has tested, serology negative but ambiguous lip biopsy result, they could not get enough of the glands they needed, most likely because they have atropied as suggested by the doctor performing the biospy who said "there's a sjogrens mouth if ever I saw one'. Rheumatologist had in fact labelled me as sjogrens for the year after I first started seeing her personally, I was involved with her registrars prior to this who also said I probably had sjogrens. It was this year when I said that I felt I needed more "treatment" that she U turned and said it was prob fibromylagia, which I know its not. She had agreed the sjogrens diagnoses in the light of sero negativity so not sure why she changed her mind, but I have my thoughts on this one.
My GP wrote to her to ask her if I should remain on anticoagulant! What on earth she was thinking of I do not know. I suspect that it was because I told her my last ASP test was negative, but it is often intermittantly so. The Rheumatologist never replied but my GP still wont re refer me out of area.
I am going through the worst phase with my eyes ever, and to be honest I am losing hope with my ability to cope at times. It makes me so short tempered and I am not really, I am usually nice enough.
I will look into the 38 degree group, sounds interesting and I will definately contact them. It sounds as though you have a plate full with arranging treatment for your daughter? This is a child for goodness sake, what are they thinking.
Thankyou as always LM.
Lulu x

[littlemermaid]

Lulu, Has he got your eyes under control? I wonder Moorfields are doing about this autologous serum problem. Or whether there's co-pay arrangements with the National Blood Transfusion Service. I'd forgotten that Sazy123 went to Vissum Eye Institute in Alicante, Spain, for autologous serum drops. Just a few random thoughts.

Do you think you might need to come off the computer for a while, though, and nurse your eyes back to bearable with this ophth. I've realised that the most important thing is to entirely prioritise on our immediate healing and maintenance, and leave the stressing for when we feel better. Is there anything else that would help meanwhile, Sjogrens drugs-wise?

This is a period of change for docs and things will shake up then settle down. Everyone, inc docs, is upset. They don't seem to know what's expected plus getting daft and confusing instructions from on high. Soon the consultants will put their feet down, sort their clinics out, and start communicating with each other. Also some new providers will spring up, hopefully communicating with the hospitals, so we will get used to more flexibility, esp on eyes, but a bit more confusion about who's paying for what for a while.

Just to clarify, we've got those referrals now from random other consultants and one of the GP partners has changed her mind... And they are across PCT. Eg the GPs originally said they only had one neuro they were allowed to refer to inside the PCT and he was a bit rubbish so they wouldn't bother. Now she is supposed to be in regional paediatric tertiary referral outside the PCT monitored for brain surgery for pressure in the head started when she was on low-dose oral tetracycline with the national but she'd been discharged. The national then refused internal neuro referral saying neuro should be local or regional.

I do wonder whether they always read and understand the notes... Now finally they're referring out of PCT but autoimmune/rheumatology referral was eventually from the neuro consultant in the regional tertiary hospital when we finally got to see him (also refused by the national). Shows how confused everyone is just now. If someone is not up to the job locally, there is an obligation to refer round them - call it 'centres of specialisation', if you will. If service is closed or not available, we're supposed to go there, ie out of PCT.

If anyone says 'it's political', it's straight to the PCT Patient Liaison Service. This is what I did and they were keen to address the practicalities. Martial arts training might've been useful here for patience and focus...

This is why the forums of the national rare disorder networks are so invaluable - are the British Sjogrens Foundation campaigning on this? I just got some publicity 'stress brains' from the Intracranial Hypertension Network UK to give to ours, including some of the neuros. Amusing yet a pertinent reminder to google before the patient comes in.

Hope you can get more comfortable - do you have any local support groups that you like for networking? Can't be the only one in the county. We need to all keep safe while they're faffing about with the NHS funding until things settle down again and we all know what's what.

The above nonsense is what Lulu is dealing with needing autologous serum on the NHS for Sjogrens, or eg paying in western Europe, Netherlands, Germany - does anyone have experience to help her?

Maybe one question we're now asking the docs is - if there isn't enough money NHS, how do we co-pay approved suppliers like the National Blood Transfusion laboratories for our specialist drugs? I think there might be precedents in heart and cancer meds.

[lulu]

Hi LM
I shall have to come off the screen for a while as things are very very bad. But I thank you for your input.
Dont know why this has kicked off to the level it has, all I do know is that life is becomming totally unbearable at this present time. Even got deperate enough to make my own combination of drops with some castor oil again, bad idea this afternoon!
Sjogrens assoc in UK pratically useless and newsletter not that helpfull, never address the nitty gritty, thats basically all I can say after 5 years of dealing with them. (sorry if thats a little churlish of me).
Feeling pretty low at present so need to think on this on.
Thanks for your support anyhow.
Lulu x

[littlemermaid]

So sorry, Lulu. Thinking about you. It's important to see the ophth again as an emergency when needed. He needs to see how bad it is so he can refer round this rheumatologist for oral meds and more current treatments http://www.dryeyezone.com/talk/showt...light=sjogrens. Surely he could maybe try bandage lenses, or refer on if he's not confident.

If you're at the point where you need them, maybe consider Moorfields Private to get current advice with a possibility to transfer into Moorfields NHS. Train would be easy into Liverpool Street, taxi from there. So sorry x

[littlemermaid]

If anyone else is dealing with this, I've just been to Local Involvement Network (LINk). He confirms that the NHS budget for specialised treatments is separate to the PCT drug budget www.specialisedservices.nhs.uk/. He says once a consultant has prescribed it is illegal for the PCT to refuse meds. And he repeated that. He says the PCT must provide a refusal in writing with reasons so the patient and patient's representative can contest it, so don't accept 'I already know they won't do it'.

He agrees Moorfields or a specialised service hospital clinic trumps the PCT. So with eg autoimmune disease we need to be in the specialised service clinics, although he agrees getting referred past the local non-starters in secondary sector is a challenge.

And that GPs can be useless and therefore obstructive about anything they don't recognise from the Ladybird book of immunology in GP school years ago, which is a problem when they're supposed to be gatekeepering, but that we should keep seeing new GPs until we find one comfortable with Google or admitting they don't know (we've seen 7 but gone back to educate no.3 who enjoys a scrap - so education may be more the key if you can find a reasonable one). But they should be referring out of PCT into specialist clinics.

I said I'd done this by going private to specialists and got into NHS national hospital clinics that way. He said, yep, but watch the PCT don't subsequently refuse drugs when you've been on a course of private treatment as happens with some of his cancer patients when they say the treatment is unproven (as Lulu's get-out above). Ahem. Autologous serum is proven for severe dry eye of whatever cause. Especially Sjogrens. It's in the NHS Clinical Guidelines. We need big-name docs to champion this in the policy committees.

So, Local Involvement Network - LINks. Pretty darn good for mostly volunteers. I'm also liking the PCT Patient Liaison Service so far, if you get the right adviser.