UK Keratoconus Self-Help and Support Association

http://johnnyvoid.wordpress.com/2013/03 ... -released/

Sadly people's health has become a political issue, as some of you will be aware for those unfortunate enough to be in receipt of JSA or ESA [in the Work Related Activity Group], they can be forced to undertake [unpaid] mandatory work activity/'placements' such as shelf filling in shops for 30 hrs a week for an unlimited period. People who are in the ESA WRAG category despite being found as not yet fit for work can be forced to do this or else lose their benefits through 'sanctions' which mean losing benefits for weeks, months and even up to 3 years, which of course leaves people destitute.

Now charities are not supposed to do anything "political" but any actions which by default result in a person's ability to feed themselves being compromised is "political" by anone's definition. Some of the awful experiences some blind people have experienced going through the Work Capability Assessment administered by Atos mean they could conceivably end up on the Work Programme. The fact that any charity takes part in this is risible, but I wanted to let members know here that the RNIB are sub-contractors to the Work Programme. You may wish to express your distaste [or to any other charity you support also involved i.e. YMCA, Salvation Army].

The small charities such as this fine one will never be in a position to do such a thing, and nor would we even if were handed a few million, but I think it's important in the age of forcing disabled people to work [or face food banks] with big charities participating with this that we are aware of this for our members who could end up in this position.

Hence my suggestion that a future event might consider a CAB presentation aimed at claimants and those who would be approached to write reports [ophthalmic practitioners], especially given there have been changes to ESA which mean you cannot go directly to an appeal after a negative decision you have to seek a 'reconsideration' first which has no time limit attached to it and comes with NO PAYMENT of money, and this is NOT backdated after a successful appeal tribunal [the reconsideration period is never repaid]. This effectively means that anyone contesting a decision will need to have friends/family who can give them money to live for weeks/months before an appeal tribunal hears their case.
Appeals are only successful with proper representation and CAB's are hard pressed after losing much of their funding and with the massive increase in caseload work.

Anyone in receipt of DLA [Disability Living Allowance] which is paid to people both in work and out of work will be changing to PIP [Personal Independence Allowance] and it's being estimated that many will not qualify under the stricter new eligibility and this will include people with visual impairment, and the problem with KC is that decision makers will have less understanding of a fluctuating condition as they deal with the black and white.

It would be useful for there to be some info here somewhere for claimants and eye professionals as there are specific sites with up to date info, as both groups need to know how to approach this, and some members [if in a position to with any time on their hands] might be up for volunteering to accompany a fellow KCer to an assessment or tribunal or read through papers with them.

Recent example from an Occupational Therapist friend regarding one of his blind clients undergoing a WCA - she was asked to do XYZ to which she replied, "Well I might be able to if I could see what you were asking me to do".

Hi Louise

Many thanks for posting this. As UK Keratoconus Self-Help and Support Association's Treasurer I can say that I, along with the other Trustees, take this subject very seriously. I can understand, up to a point, why some organisations believe it is necessary to secure funding and it's not unheard of to face a dilemma about whether or not to take that funding from a particular source. Perhaps the charities who take money for providing a service to the Work Programme genuinely do believe that it's for the benefit of the people who need that charity's services. Perhaps it's simply about boosting revenue. Possibly their motives are mixed, as can often happen when money comes into the equation.

We have some principles which we will not violate in this charity. We will never consider "selling" any information we might end up possessing such as email addresses or postal addresses or use it for any purpose other than communicating with members. That is one of the most valuable "assets" we have -- and I'd always urge caution to anyone considering offering to give their details, including that they have Keratoconus, without understanding who they are giving that data to and what that party might want to do with it. This in one of the trickiest ethical dilemmas for charities and groups who help people with a medical condition because you've got a ready-made mailing list for selling things (primarily medical products and services) to that group.

We will accept donations from grant givers who have a religious foundation. However, we'd never allow religion or politics into any of the charity's work. These sorts of questions have come up in our fundraising so I know what the answers are. There's a section in our constitution that prevents us from taking money from any source which has activities that are harmful to people's health and wellbeing.

The point in the post you circulated was about taking money from the government. We'd not, I don't think (we'd have to make a decision at the Trustee's Committee Meeting, I can't say for sure as we are democratic and it would be voted on !) be willing to accept a donation from the government "with strings attached" i.e. in return for providing them with a service of some sort or another. Certainly we'd have to look very carefully about what we were being asked to do. A donation or grant from the government or a QANGO or similar without asking anything in return, well, we'd probably seriously consider it. I won't go into a sob story, but suffice to say, like many a charity, we never have a financial position which we're really relaxed about. It's always a case of scraping enough money together to make sure we can keep going and doing the things we think are essential -- mainly newsletters, conferences and this website.

We'd really like to hear views that anyone holds strongly about what we should -- and shouldn't consider as suitable sources of funding. By all means use this thread to let us know. And anyone who wants to get directly involved in the running of the charity, well, we never turn away help

Best wishes

Chris

Thanks Chris, the problem with any charity having anything to do with the Work Programme is that it's been clearly shown to be more of a hindrance than helpful to those forced into it. People in receipt of ESA are sick, disabled, have sensory impairments, and can also be forced onto the Work Programme [unlimited time]. Those so forced can be sanctioned by the Jobcentre for failure to comply which means total loss of income. How any of this is in any way compatible with any charity aims is beyond my comprehension. Those charities should be called to account for their actions because by colluding with forced labour that IS a political act.
I also think charities should stand up more to the cuts and how those cuts are administered i.e. simply changing eligibility to make it impossible to access and in many cases actually stopping people from working [and living], that's perverse.
So this is why I suggest information to claimants, potential claimants and professional supporters about how best to navigate this maze is something all charities can address in different ways.
Best wishes
L

I receive DLA at the moment (I won't go through the trials and tribulations of what it took to be deemed eligible for it) and am ready for my own personal PIP battle (and battle I'm sure it will be !) when the time comes.

We try our level best to offer support to anyone who needs it if they are seeking fair and just outcomes for DLA/PIP, ESA etc. decisions. I think personally that the best help comes from simply talking with people who can understand -- even if it's only virtually on a website like this -- and getting as much strength as you can muster to keep fighting your corner. If you're going through that sort of struggle, it's almost inevitable that you get moments of self-doubt and feel like giving up. That, I'm pretty convinced, is sometimes the response that these systems are designed to invoke. They only need to get you to give up on one day, then you're back to square one.

Finally, I can't speak for other charities, but as I alluded to above, certainly our constitution would cause us to think not just twice but many, many times before agreeing to participate in something which has become as controversial as the Work Programme. I'd like to hope that any organisation which aspires to help disabled people would have similar safeguards in its setup. And if they do, then they take a long hard look at those safeguards and are absolutely sure that they've not crossed a line somewhere they really don't want to be crossing...

Good luck, stay strong.

Chris

Chris, when you go through your PIP review you will need as many letters from health professionals as possible [this is where ophthalmic professionals need to be educated as to how to best help]. Help with form filling from a disability org or CAB, and some of the best advice is available from this site [some free downloads but also paid membership offers some very comprehensive downloads:
http://www.benefitsandwork.co.uk/
Also this book from Radar, the Disability Rights Handbook: http://www.radar-shop.org.uk/Detail.aspx?id=77
Lastly a friend to help you wade through it all.
Good luck Chris

and this one: http://www.mind.org.uk/shop/books/461_t ... _2012_2013

Lou/Chris

Excellent thread.

Visual issues are generally misunderstood by the "system", which likes the definition of disability to be cut and dried. For instance, while trying to determine what advice is given to professionals at DWP, the only real indication of vision problems in the list of medical conditions to be considered comes under the term "blindness".

Here is the advice:

Key medical criteria to assess functional restrictions

In looking at the question of disability in the visually impaired, we are assessing three main criteria:

Binocular visual acuity for distant vision, corrected with spectacles or lenses.
Binocular visual acuity for near vision, corrected with spectacles or lenses.
Visual fields.
We would regard for a mild visual impairment, a visual acuity for distant vision to be better than 6/18, for a moderate visual impairment, a visual acuity to be 6/18 or more, but better than 6/36, (or registered partially-sighted), and for a severe visual impairment, a visual acuity of 6/36, or worse (or registered blind).

For near vision, corrected binocular visual acuity for mild impairment would be up to, and including N24, for moderate, worse than N24, up to N36, and for severe, worse than N36.

With visual field loss, the different types of loss are considered:

Peripheral field loss in absolute value (or percentage loss) in full binocular visual field. That is, blindness on the edge of vision,
OR hemianopia (blindness in half the field of vision),
OR binocular central field loss, that is, blindness in the centre of vision.
Mild, moderate or severe impairment, and subsequent disability depends on the amount of visual field that is missing.

This information is most readily available from the Optician or Ophthalmologist.

The question of registration of blindness and partial sight will also be raised.

Disabling effects of visual acuity loss, or visual field loss, on the individual’s activities of daily living are assessed, bearing in mind the diagnosis, treatment, and likely prognosis.

-----------------------------
However, despite this lack of clarity (excuse the pun) it is possible for optometrists to help with clear reports that detail visual difficulty. Unfortunately, though, getting registered for visual impairment is still probably the most sure fire way of "proving" you have a problem.

I do wonder if getting a few "test cases" relating to keratoconus through the system may help. If that was done, then perhaps the group may be able to construct a form that professionals could complete that would speak to the specific situation of keratoconus.

What do you think? I am happy to help in any way I can.

Lynn

I think that is a brilliant idea Lynn and I for one would be prepared to help [email or meet up].
This would in addition also assist with shifting thinking on variable impairment.
I think other things need to be added to your comprehensive list such as ability to use correction and emotional impact, although ophthalmologists are not mental health professionals they can still make a simple valid statement on this issue as the problem is some people fall between the gaps if ophthalmology/optometry don't state it and if the patient has no mental health input. Nurse counsellors may also be able to help here.
If we could develop a specific KC form for eye professionals this would be a really helpful aid and given the current climate it's of some urgency for anyone who is a claimant or will be.

Hi Lou

I know we are now talking offline but I think we should also keep this going here.

As you say, mental health aspects are very important, simply because this is a huge part of the assessments.

Optometrists and reporting

Unfortunately, optometrists are not used to this sort of interaction. Their role in Eyecare has been increasingly marginalised over the years and the normal High Street optometrist has also little experience of severe vision impairment. Most patients are dealt with in hospitals and those optometrists are under a lot of pressure just to see patients. I feel it will be difficult to get them to fill in comprehensive forms. If anyone has had experience of this can you please contact me.

Registration

Currently, and perhaps understandably, a big part of the evidence to help you get benefits is whether you are registered blind or partially sighted. To the uninitiated, if you can't work, you must be registered. If you are not registered, you can work. In the words of the meercat- "simples!"

We all know its not that simple and because of this, some of you may remember I tried, through official Optical Bodies, to introduce the concept of Variable Vision Registration. I'd like to say I predicted this DWP situation but even in my worst dreams I didn't think it would come to this. However, I did understand back then that unless we made KC issues visible, patients would not get proper benefits.

I remember that many people, professionals AND people with KC, questioned why I was suggesting this registration, as there really didn't seem much reason for it. Indeed, normal registration was dropping off, as it didn't give that much benefit to the registrant, and there was even talk of scrapping registration altogether.

Well, now registration is back on the agenda. If you have registration, it is a solid piece of evidence that you have a visual problem.

But now we hit the next hurdle. People with KC are unique, I would say, amongst people with visual disabilities, they are the ones who simply do not give in. Don't take my word for it, read the Dundee University Scottish Keratoconus Study (DUSKS). They looked at 200 patients with KC and 98% of them were in work and 80% had driving licences.

This is why KC is off professionals' radar. Patients manage. If asked do they have problems, the stiff upper lip comes into play and patients say no. Thus whenever someone DOES try to explain their issues, it is thought they are "over sensitive". I know this for a fact, having sat in innumerable committees talking about KC with other professionals in the context of Low Vision.

CXL

Several people on this board have asked about benefits while undergoing CXL. This is a very pertinent point. As usual, it's a complex situation

Some people have little trouble and get back to "normal" within a couple of weeks. That's best case scenario and usually their KC is not that bad or is relatively newly diagnosed. From experience with patients who have had KC for several years and heavily reliant on RGPs, it can take 18 months to get through the CXL process on both eyes.

If you leave your CL out, you get corneal shape changes due to the moulding effect of the lenses. This needs to wash out before CXL treatment and you also need around 2 months with no lens wear post op before getting back into rigid lenses. It can be done sooner but the recorded incidences of post CXL scarring has mostly been related to going back to RGPs too soon.

CXL Epi off also causes a lot of corneal shape changes while it is settling. CXL kills off the corneal cells which don't fully regenerate for 6 months and fluctuation is likely during all this time.

Both these issues cause vision and prescription changes that cannot be fixed with glasses or lenses as you may change day to day. Therefore, you need to do one eye at a time, so you always have an eye you can rely on.

You will need an extra 3 months for demoulding, refitting in CLs and other settling issues.

Therefore 9 months per eye.

This does not mean 18 months off work. It means 18 months of coping. Most people get back to work within a couple of weeks with the help of soft lenses (either temporary normal disposables or more dedicated specialty ones). However, anyone undergoing CXL has to assess how much their vision is essential for work and how they could manage if one eye is really not seeing well.

As NHS provision for CXL is patchy, recognition of these issues is likely to be below the DWP radar. As it is not widely accepted as a standard treatment for KC, it is unlikely DWP would easily accept it as a genuine reason for time off work. Claims would be very much on a case by case basis I would think.

Resources

Here is a very comprehensive list of documents on the Action for Blind People website. Despite the name, they really do have a lot of experience in "non blind" situations. This document list contains everything you need to know about DLA etc

http://www.actionforblindpeople.org.uk/resources/resources-downloads/

Lets keep this exchange of info going.....

Lynn