Guide to Submitting a Claim for PIP

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Guide to Submitting a Claim for PIP

Postby longhoc » Tue 16 Apr 2013 8:12 am

(PIP is "Personal Independence Payments" which replaced DLA or "Disability Living Allowance" from April)

Benefits and Work have produced excellent resources to help with completing an application for PIP. It goes through why you would be entitled and what the criteria are for proving your entitlement. http://www.benefitsandwork.co.uk/person ... ayment-pip

This is a subject we'd like to start getting more directly involved in -- the "systems" for registering as being partially sighted, claiming benefits such as PIP (and ESA "Employment Support Allowance, another disability benefit) and accessing services for people with low vision don't always reflect the needs of people with Keratoconus.

This is because they are often geared to dealing with "steady state" conditions. If you've lost a limb, you've lost a limb. It's gone and it's not going to grow back. The "systems" can produce the right outcome for that sort of disability. But for us, sometimes we can see pretty well, sometimes we can't see our hand in front of our face.

What's a bit galling is, the same systems seem to be able to offer the correct sorts of outcomes for other disabled people with variable conditions -- Multiple Sclerosis is a good example.

Please add any thoughts you may have on this subject to this thread.

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Re: Guide to Submitting a Claim for PIP

Postby munster » Wed 24 Apr 2013 5:08 pm

I have always maintained that KC is a disability.

Yes, we can see when we have contacts that work. The problem is that the contacts are only a temporary aid. Without them, many of us would be on the partially sighted register.

We have to contend with random progression, making our current prescriptions useless. Glasses can't correct our vision. We generally suffer with eyestrain, visual fatigue and headaches. Frequent sore eyes forcing us to spend days partially sighted. Days off work spent on sick leave, due to vision. Repeated trips to and fro from the hospitals. Poor dark/night vision rendering some of us house bound. Not to mention the emotional and psychological problems caused from living with KC.

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Re: Guide to Submitting a Claim for PIP

Postby Loopy-Lou » Fri 26 Apr 2013 12:35 pm

Yes indeed I've raised some of these issues recently:
viewtopic.php?f=1&t=8311

There are a number of issues here to be addressed.

1] Visual registration - KC needs recognition because of the variability of the condition [and before and after surgical treatments], and ability to use correction [lenses and glasses]. Registration of 'variable impairment' needs to be added to include recognition of sight without correction given KC often means periods of this. It's not fair that partial sight without correction is simply not recognised, it would be like failing to recognise a disabled person who uses a wheelchair who would [obviously] be unable to go anywhere without their wheelchair!

2] There are problems with existing registration and who's doing it - it's not desired on the part of ophthalmologists because it represents the ultimate 'failure' for them. They are rarely aware of the social and emotional aspects of KC and how this impacts on patients.
It would be better if each optometry dept had one dedicated optom who did all assessments for visual registration for all conditions. This would include visual acuity without correction, ability to use correction and social and mental functioning. It would be good for everyone interested in this to be a part of drawing up guidance for this assessment.

3] The benefits system has changed beyond all recognition and since January changes to ESA now mean that claimants can only apply on strictly physical or mental health grounds with NO cross over i.e. no reference to physical problems causing mental health problems and vice versa.
Claims [and appeals] for PIP will not be successful unless you have proper support to fill in the forms [CAB's are overwhelmed now].
Medical evidence has to be submitted with the form, this presents a problem for KC - trying to obtain that evidence in the required timescale, ophthalmologists not even knowing the patients issues [because contact with them is not as regular as with optometrists], and they don't have a clue as to how best they can help their patients. They are a medical specialty least geared up to this process.

If the KC group is going to get more involved in these issues then I'd suggest the following;

*Work with anyone and any group prepared to seriously take forward visual registration issues and start a permanent thread where members can leave testimony specifically on what help they need to live, the impact of losing that help, the difference that their benefits make to their lives [and work] and what will happen if they lose their benefits or fail to secure them. Some people may prefer to send their testimony by PM, so it would be useful if a member of the committee could be identified to receive those.

*Set up morning or afternoon meetings in eye hospitals for members with staff [optoms/opthal/counsellors] including a clear statement from the KC group about these issues, and invite someone from CAB [or other accredited welfare advisor] to discuss the issues.

*Write a leaflet [single side of A4] which claimants could give/send to their practitioner which would clearly outline how they can best help their patient with a supporting letter. It's not enough to state corrected visual acuity, it needs to say more of the above, impact on living/working/emotional health.

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Re: Guide to Submitting a Claim for PIP

Postby GarethB » Fri 26 Apr 2013 2:49 pm

munster wrote:I have always maintained that KC is a disability.

Yes, we can see when we have contacts that work. The problem is that the contacts are only a temporary aid. Without them, many of us would be on the partially sighted register.

We have to contend with random progression, making our current prescriptions useless. Glasses can't correct our vision. We generally suffer with eyestrain, visual fatigue and headaches. Frequent sore eyes forcing us to spend days partially sighted. Days off work spent on sick leave, due to vision. Repeated trips to and fro from the hospitals. Poor dark/night vision rendering some of us house bound. Not to mention the emotional and psychological problems caused from living with KC.


Without contacts I wold be on the partially sighted register but with the help from people on this site, RNIB, Action for the Blind I don't think I would class my slef as disabled because the techniques they have shown me I can feed and clothe myself like a sighted person with very minor adaptations.

I find that my eye sight is so poor during the day the fact that it is nighth or day makes no difference so poor night vision doesn't render me housbound.

My take on this may posible be very different to others because I have always socialised with people with low vision and they cope perfectly well and have never had the option on being able to see like I can with contact lenses. These popel alos have good carears and as far as I am aware don't receive state benefits on a regular basis. The only modifications I have seen are to the kitchen and controls in brail, a couple of friends have guide dogs and the rest white sticks but I have never asked how these are funded.

I do often thin that as Keratoconics we do forget how lucky we are compared to other visual impaired groups!
Gareth

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Re: Guide to Submitting a Claim for PIP

Postby Loopy-Lou » Fri 26 Apr 2013 4:22 pm

That’s great Gareth, but of course no two people are the same when it comes to any health issue or disability. People find exactly the same condition a challenge or disabling.
Everybody doesn’t share the same background in terms of life skills, education, partner or family support, housing and ability to earn an income at the time that KC hits at its worst. Life is partly what we make it, but also there is some degree of opportunities along the way that not everyone has experienced.
Not everyone has worked in jobs where variable sight, ability to use correction or time off sick would be tolerated. Poor night vision doesn’t render you personally housebound but imagine if you’re circumstances were different, it may have been harder.
You’ve only mixed with people who have few adaptions, have careers [I’m guessing higher education too] and cope perfectly well, but as you say you don’t know for certain how guide dogs/white sticks or ability to work is funded. There are blind people who are only able to work because of DLA, that was in fact a feature of a recent programme regarding these changes led by Paralympian gold medallists - who made it clear they had only been able to reach their high achievements because they were in receipt of DLA, and continuing to live and work as they are won’t be possible if they lose it. So even those who have careers and cope well still need assistance. This problem also featured a blind woman with a guide dog.
Then of course you might not be aware of other health issues a fellow KCer may have which when put together renders those issues or the KC harder to cope with. Sometimes it’s a case of how many different balls is a person juggling, and of course everyone copes differently under stress.
‘Luck’ is relative, of course we can always see people in far worse positions than ourselves but that doesn’t mean we don’t want the very best for our peers even if we don’t share their experiences however alien they might seem. None of us can know what it’s like to walk in another’s shoes so I think we also need to remember that too. Yours have been of one of enduring towering strength and any obstacle for you is a challenge and nothing holds you back which is positively inspiring, but even if you’ve not personally borne witness to it I’m sure you can imagine others whose lives have not been like yours and whose outlook and resilience is not as good as yours.
I do remember you being supportive of changing visual registration, would that still be the case, do you have any thoughts about that?

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Re: Guide to Submitting a Claim for PIP

Postby Lynn White » Sat 27 Apr 2013 6:36 am

Lousie makes some excellent points.

As a professional, who has been involved in Low Vision Committees, as well as managing patients with KC, my opinion is that our society has failed to keep up with the change in meaning of the term visual disablility over the decades.

The current definitions are over a 100 years old. The terms blind and paritally sighted refer the ability to "do work" or not. Work, in these terms, means manual work or crafts like needlework, joinery etc. At that time, a good proportion of the general population were illiterate or had basic reading and writing skills.

Work in the 21st century more than often than not means using computers, mobile phones, reading small print on documents.

This is why, when I was trying to raise awareness about the current state of vision registration, professionals were not that concerned about it because frankly, there were not many practical benefits to being registered. People managed with other benefits anyway. Until now.

The goal posts have now been moved. We are facing a situaiton where you will have to PROVE you have a visual disability and the assessors have no other guidelines to go from other than a system which is over a 100 years old.

So, you may NOT have a disability according to current blind and partially sighted registration criteria.

However, you may NOT be able to do your work sufficiently well with the current uncertainty that your vision engenders. If most of you are below the driving standard with glasses (if you even have them), then you cannot rely on your vision enough to take any job that involves driving. I know that many of you do and you are basically winging it, because if those lenses have to be left out, for whatever reason, then you can't drive.

Does that mean you have a visual disability?

I know many patients of mine consider croaa linking. The biggest single factor in their decision is not whether to have but WHEN to have it. They try to calculate how long they will have fluctuating vision and whether they can cram this into annual leave. Will they be able to get by in the following months.

Does having to have treatment to halt a progressive eye condition and plan time off work for it and then having to cope at work becasue you can't see a monitor properly sound like a medical visual issue?

I think the answer to these questions is yes.

I recently contacted the current UK Low Vision Committee (I have stepped down now) recently about all these issues and the first thing they said to me is that any push has to come from patient groups. If "patients" dont recognise an issue, then no-one else will and nothing will be done.

I therefore welcome Chris' thread and I urge all of you to contribute. The best way to do this is imagine an optometrist has taken away your lenses for 2 months due to corneal health issues. How would your home and work life be affected?

Could you drive. cook, work like that?

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Re: Guide to Submitting a Claim for PIP

Postby GarethB » Sat 27 Apr 2013 8:31 pm

I appologise if my response caused offense. However I always thought the idea of any support group forum was to share expereinces and where we have received help and support to overcome any difficulties we have expereinced. Lou, your expereinces are completely different and I respect that of you and everyone else that posts on this forum.

When I socialise friend's who also have visual imparements (or what others would refer to as a disibility) or what benefits they may be on, we don't spend our time discussing these, we talk about things like friends and familly. Some have been to university, others I have no idea what their educational background is. We are friends because we have other common interests that brought us together.

Loopy-Lou wrote:I do remember you being supportive of changing visual registration, would that still be the case, do you have any thoughts about that?


I still support changing visual registration but while other groups dealing with visual impairment refusing to work with other charities I am afraid there are still very few of us trying to raise this profile.

Lynn White wrote:I therefore welcome Chris' thread and I urge all of you to contribute. The best way to do this is imagine an optometrist has taken away your lenses for 2 months due to corneal health issues. How would your home and work life be affected?

Could you drive. cook, work like that?


Having been in this situation on more than one occassion and I managed OK and I am sure with the support network that is the KC Group that I would manage again.
Gareth

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Re: Guide to Submitting a Claim for PIP

Postby Loopy-Lou » Sat 27 Apr 2013 8:51 pm

Gareth, I don’t know that all my experiences are completely different, and when most people socialise they too talk about friends and family.
Yes you would probably manage with anything life threw at you but not everybody can [I’m sure you can conceive of that], everybody has limits [even you!]and anyone’s ability to function and cope can be compromised.
If you didn’t have a computer and couldn’t afford a broadband connection for example then you wouldn’t be able to so easily access the support of the group if your visual acuity were different.
I do agree with you regarding changing visual registration, it needs all the visual charities to work together on this with strong patient backing.
If that doesn’t happen, things won’t change.

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Re: Guide to Submitting a Claim for PIP

Postby munster » Sat 27 Apr 2013 9:18 pm

GarethB wrote:I appologise if my response caused offense.


I didn't think you caused offence. You was just putting your opinions forward.

Anyways, I'm seriously considering quitting my job because of my light streaks in dark environments.

This is not a cop out. I drive heavy armoured cash vans. Sometime when it gets dark, my visual distance can drop to 5-10 meters, due bright light streaks from all sources crossing the road, hiding signs, buildings and other traffic. The other day I didn't see the traffic island until 5 meters away. I also have less chance of seeing the people who want to attack and rob me. The bright light streaks cause me to get eye strain and headaches :(

So for me, my visual problems brought on by KC affect my road and personal safety directly. So for it to affect my employment in that way is a disability to me.

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Re: Guide to Submitting a Claim for PIP

Postby Lynn White » Sat 27 Apr 2013 10:24 pm

Just to clarify, my post was a general question to everyone in order to see whether they thought they felt they had a visual disability. This is actually a different question as to whether one copes with that disability.

To be very clear, and this is directed purely at the forum, not to any individual: Visual ability or disability has to be defined in scientific terms in order to relate to PIP.

Munster's post, for example, shows that he feels his KC renders his vision unsuitable for his job in certain lighting conditions. Night driving is a particular problem for most people with KC. The higher order aberrations, such as coma, cause this issue and result in strong secondary images of lights that get in the way of what you are trying to look at.

There is a scientific reason for this: in low light, pupils dilate (get larger) and in these conditions, the higher order aberrations are massive compared to seeing through small pupils. The resultant effect is a sharp increase in ghosting and shadowing directly proportional to the pupil size.

This does not happen with normal corneas.

Therefore Munster, this is in no way a cop out. It is a real, measurable effect that can be recorded with instrumentation. However, there is no provision in current legislation to recognise this kind of distortion as a visual disability.

Another, measurable, effect is frequent changes in spectacle prescription. Just lying face down one night while sleeping or a particularly firm rubbing if the eye can change your vision. Changing glasses is not cheap and if you are eligible for NHS vouchers, you may well end up needing PCT permission to keep changing your glasses.

I have had several of my patients who made life changing decision to quit their job and do something else due to KC. The fact that in all these cases, the job change eventually made them happier is besides the point in the context of talking about PIP.

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