A 27-year-old woman from Cawston is urging health authorities to change their funding criteria after fears she may have to pay thousands of pounds to save her sight.

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"Knowing at the age of 27 I could be partially blind is frustrating."

Vicky Smith

Vicky Smith, of Gayford Road, first noticed she was losing vision in her right eye in December 2009, and has been told because of her age she may have to get urgent treatment privately, which could cost in excess of £6,000.

“After under-going tests at the Norfolk and Norwich University Hospital I was diagnosed with punctate inner choroidopathy (PIC),” she explained.

“I was told it was something I had to live with and to come back if it got worse.”

As her condition deteriorated she returned to the N&N in August last year complaining of worsening sight loss and headaches but was told it was natural progress of the condition.

“By March I couldn’t see a lot and had increased blind spots so I went back for more tests,” she said.

“My consultant then came and explained to me that I could lose my sight completely in one eye.”

The condition causes blood vessels to burst near the retina and predominantly occurs in short-sighted females, between 18 and 40-years-old.

It can be treated with a series of avastin injections - the drug used to fight against age related wet-macular degeneration disease, usually found in people over 50-years-old.

But because the conditions are similar Miss Smith, a behaviour support assistant working in Norwich, has been offered treatment, but does not meet the criteria to receive it freely on the NHS.

Her consultant Andy Glenn, ophthalmologist at the N&N, met with the Primary Care Trust (PCT) on Tuesday to discuss funding but an application was rejected on the grounds that Miss Smith is “not an exceptional case.”

She added: “If I don’t receive my treatment within the next month the condition will be too far gone to treat with the avastin injections.

“I could need at least six injections, which cost up to £800 each, and that’s not including the £200 per-time aftercare cost.

“Knowing at the age of 27 I could be partially blind is frustrating but I hope by me speaking out about it that other young suffers in this situation won’t get themselves into debt trying to fund it. I hope the PCT will see there is a need for this drug at this age.”

A spokesman from NHS Norfolk and Waveney said there are a number of treatments which the NHS does not routinely fund to ensure resources are used equitably.

“NHS Norfolk and Waveney prioritises resource allocation based on evidence of the clinical effectiveness and safety of treatments, their cost effectiveness and affordability, and on which interventions provide the best health outcomes,” they added.

A spokesman from the RNIB said: “If there’s an approved treatment available which will save a person’s sight then we’d strongly urge it is given to the patient. It’s vitally important that people diagnosed with sight threatening conditions have the opportunity to receive proven and timely treatments.”

The decision is currently being appealed by a team from the N&N.

24 comments

  • I really feel for Vicky. I cannot understand in which "exceptional circumstances" are there other than losing your sight. The PCT should re assess their decision, Vicky is a young woman with a life time ahead of her!

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    Sunny

    Friday, March 30, 2012

  • Eyes? I didn't notice.

    Report this comment

    cnb

    Friday, March 30, 2012

  • merrydancer you are a Muppet this is an injection that is available to anyone over 50 years old on the NHS why should Vicky have to miss out just because she is under that age. I thought the reason we all pay our taxes towards the NHS is so we receive free NHS treatment if this is not the case then give us back our taxes and by all means we will pay for our own treatment.

    Report this comment

    icehockeyhoppy

    Friday, March 30, 2012

  • i know how you feel i had exactly the same at west suffolk told very matter of factly there is no funding . went back for several follow up appointments no treatment but mine cleared up but still have the black patches that are scars this started in 2009 same as you i was 43 older i know but still far to young .i hope they come to a better decision for you soon

    Report this comment

    ang.woods

    Saturday, March 31, 2012

  • Two sad idiots have added their unfunny comments. Grow some you wasters. The Health and Safety Executive Committee at Parliament commented over the PIP breast implant saga that "A founding principal of the NHS is that patients should receive free treatment". Where has NHS Norfolk and Waveney discarded it's principals? How much does the PCT spend on ridiculous projects? how can they say that the potential loss of a young persons eyesight is "not an exceptional case". Whose decision was that?

    Report this comment

    timbo

    Friday, March 30, 2012

  • Not even the cost of an overated expensive Ford Mondeo clock stopping Ambulance Response Car.

    Report this comment

    Rolf

    Friday, March 30, 2012

  • How on earth can we say this girl cannot have this treatment to save her sight at 27. People are given gastric band ops when what they should really do is change their eating habits, and exercise. I think there should be a special tax on fast food, and it should go straight to NHS, as it causes so much obesity which is such a drain on the NHS. It is our responsibility to look after our own health, not smoke, eat sensibly, exercise, drink moderately, not expect the health service to constantly pick up bill. Miss Smith has this illness through no fault of her own, she should get funding. Also if we stopped funding foreign wars we cannot win, there might be more money for NHS. but of course our politicans will never learn that will they.

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    june muskett

    Saturday, March 31, 2012

  • merrydancer, you are so insensative,

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    jan

    Friday, March 30, 2012

  • I think it is appauling that the PCTNHS can refuse funding to save a young persons sight, isn't this what we pay National Insurance for. Miss Smith has the rest of her working life (possibly 30+ yrs) in front of her, to add to her existing contributions, i am sure she feels let down by this present situation. Hopefully the people responsible for this decision will see sence and give her the treatment required.

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    jan

    Friday, March 30, 2012

  • Merrydancer where is your sympathy here?! Where is the sense in the NHS not funding this treatment? This lady should not be expected to pay to save her eyesight at a cost of £6000. We are not talking cosmetic surgery here, but the gift of seeing, which no doubt you take for granted. The PCT should be ashamed!

    Report this comment

    Voice of reason

    Friday, March 30, 2012

  • how can anyone (company) justify an injection costing £800 each, that is so wrong, wouldn't cost that if it was pure gold!

    Report this comment

    catalonia13

    Friday, March 30, 2012

  • How on earth can we say this girl cannot have this treatment to save her sight at 27. People are given gastric band ops when what they should really do is change their eating habits, and exercise. I think there should be a special tax on fast food, and it should go straight to NHS, as it causes so much obesity which is such a drain on the NHS. It is our responsibility to look after our own health, not smoke, eat sensibly, exercise, drink moderately, not expect the health service to constantly pick up bill. Miss Smith has this illness through no fault of her own, she should get funding. Also if we stopped funding foreign wars we cannot win, there might be more money for NHS. but of course our politicans will never learn that will they.

    Report this comment

    june muskett

    Saturday, March 31, 2012

  • Everybody is having a go at "merrydancer" but I see no comments from him (or her) on this board. The trouble with Censorship is it harms Society as a whole, not just the vilified ones. If only the reporting was trustworthy, there might be fewer unsympathetic postings. But this is the EDP. Of course losing sight is an awful prospect. I wish her well. Remember, God`s most enduring gift is that of Mortality.

    Report this comment

    Mad Brewer

    Friday, March 30, 2012

  • Voice of reason

    Friday, March 30, 2012

  • sup sis, you is on the newspaper on the computer damn the NHS, save the empire, love Rex Manning!

    Report this comment

    supercooldevondude_1924

    Tuesday, April 3, 2012

  • How on earth can we say this girl cannot have this treatment to save her sight at 27. People are given gastric band ops when what they should really do is change their eating habits, and exercise. I think there should be a special tax on fast food, and it should go straight to NHS, as it causes so much obesity which is such a drain on the NHS. It is our responsibility to look after our own health, not smoke, eat sensibly, exercise, drink moderately, not expect the health service to constantly pick up bill. Miss Smith has this illness through no fault of her own, she should get funding. Also if we stopped funding foreign wars we cannot win, there might be more money for NHS. but of course our politicans will never learn that will they.

    Report this comment

    june muskett

    Saturday, March 31, 2012

  • I'm lucky enough to know this wonderful young woman and i am saddened and disgusted with the NHS, Vicky is a hard working and dedicated to her job looking after children with behaviour problems she has studied is still studying to reach her goals in life and this Great country of ours cant save her sight !!! If she was out of work with numerous tattoo's she wanted removing NHS would have done it or perhaps a boob job or boob reduction i know people who have had both done on the NHS also if she'd had been obese she would have got a tummy tuck or stomach stapled..and as for MERRYDANCERS comments, what sort of moron are you ..if you think its so easy to come by £6000 why dont you lend it to her with no interest

    Report this comment

    Gabby-ann

    Friday, March 30, 2012

  • Hear Hear, well put.

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    jan

    Friday, March 30, 2012

  • I find this a particular sad story as there appears to very little joined up thinking in the decision that has been made. If this young ladies condition continues to deteriorate she will need increased support from the NHS and other statutory bodies costing much more than the £6000 stated and if she wishes to claim them disability benefits. The above does not get away from the fact eyesight is a very precious gift and if there is any chance we can save Vicky’s sight it is surely the duty of the NHS to do so. The cost is very small considering the billions the NHS spends each year and a more pragmatic approach to these issues should be taken.

    Report this comment

    Flyinggeordie

    Friday, March 30, 2012

  • Do we take the NHS for granted?? Most of us pay into the system that grants the NHS to work the way it does, however, when in times of need,some are denied the treatment their illness and contributions deserve.Unlike the many thousands of NHS tourists from all corners of the world, who drain the system to the tune of £300,000 a week. I don't have any easy answers to solve these problems, however, I do take out medical insurance whilst travelling or working abroad. The point of entry into this country must surely change or Britain and it's NHS will be bankrupt and beyond repair in the very near future.

    Report this comment

    nrg

    Saturday, March 31, 2012

  • Mad Brewer. Bless you and your sentiments. God's greatest gift is life. Who can deny that? Merry dancer wrote stupid and condescending comments. The point of this issue is that the PCT have made it abundantly clear that it is comfortable sitting by while a 27 year old loses the sight in one eye. We have to ignore the comedians and focus on the issue. The issue is simply that a multi million pound heath authority sits back and tries to justify denying a sight saving treatment to a girl because she is "not exceptional". Tell me that is right. Someone tell me that is right.

    Report this comment

    timbo

    Friday, March 30, 2012

  • I'm lucky enough to know this wonderful young woman and i am saddened and disgusted with the NHS, Vicky is a hard working and dedicated to her job looking after children with behaviour problems she has studied is still studying to reach her goals in life and this Great country of ours cant save her sight !!! If she was out of work with numerous tattoo's she wanted removing NHS would have done it or perhaps a boob job or boob reduction i know people who have had both done on the NHS also if she'd had been obese she would have got a tummy tuck or stomach stapled..and as for MERRYDANCERS comments, what sort of moron are you ..if you think its so easy to come by £6000 why dont you lend it to her with no interest

    Report this comment

    Gabby-ann

    Friday, March 30, 2012

  • I think she really deserves this treatment and quickly before her sight deteriorates further. I know a woman who has had approx £24,000 worth of surgery on the NHS to reduce the size of her stomach and then to have the excess skin removed from her thighs, stomach and arms and vitamin injections for the rest of her life. This was self-inflicted through over-eating and Vicky Smith has no control over her illness and deserves the injections.

    Report this comment

    samphirelover

    Friday, March 30, 2012

  • This is an absolute disgrace. I am 43 years, also have PIC and have had the Avastin treatment mentioned. It restored my sight by stopping all the vessels leaking. A week after my first injection I was able to read again and I cannot even begin to explain how that felt. Without it I would have had to give up my job and rely on incapacity benefits - which work out a heck of a lot more expensive than the injections. The treatment has to be done quickly as the more your eye bleeds the more danger of scarring there is. I agree with others who point out that we have an NHS who will fund weight loss surgery (lifestyle choice) and cosmetic surgery for those whose appearance is making them miserable, but they'll quite happily let a young young go blind. Shame on you PCT.

    Report this comment

    glitterglitter

    Monday, April 2, 2012

The views expressed in the above comments do not necessarily reflect the views of this site

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