Blog Posts

Coronavirus and working from home

Reflections from lockdown by Caroline Condillac

Contemplating the new working environment from a Keratoconus perspective has been interesting

Positives

We are good at washing our hands and being resilient 

For many of us we have to adapt to situations at both home and work and know the importance of trying to protect ourselves from infection

If we are able to work at home, we don’t have to contend with variable vision and lighting affecting our ability to travel to and from the workplac

A corneal graft does not mean that we needed to shield “Fit, healthy recipients who are not immune suppressed are not included in the vulnerable list, it is only if they have other conditions

Challenges

Eye drops and lenses require us to touch our faces more often

Social distancing makes it harder to see things, I usually like to get closer to see people’s expressions, read signs and find information (saying that I haven’t been out much but as lockdown starts to ease this is likely to change)

Familiar environments have changed to allow for social distancing and so familiar places are different to navigate

Adaptations to a different way of working

I’m fortunate that mostly my job can be done remotely from home. I have found that while everything is done in a virtual way, screen time has increased and I didn’t expect to spend my working day sitting at the dining table. 

Things to consider if not already in place

Are you able to bring screens and office equipment home? I’ve got my larger screen at home which has made a huge difference

Have you picked the best spot at home for lighting? Is there a better place n the kitchen or bedroom that you haven’t considered or is it worth changing location part way through the day

Different ways of meeting

In my working world we are using Teams as our virtual meeting space

Socially and as part of the Keratoconus Committee group we have used Zoom. This has enabled us to keep in to contact and plan to for the future. Although the conference has been postponed, we discussed the importance of having places to meet and share our keratoconus experiences. With people at home the website and forum has seen an increase in visits. Zoom coffee mornings are proving popular and a successful platform to share with others

Time in lockdown has been a rollercoaster of emotions for most people, but it has given time to think, read and consider our lifestyles. This includes a working environment that has changed, certainly in the short to medium term and maybe forever. 

Changes to home working set up

When the news of the late Summer was that I would be working from home until at least Christmas and maybe now Eater and beyond, we were encouraged to take more time to look at working conditions. As both myself and my husband were now co-working from home, we needed to create spaces that would work for longer.

So I am fortunate in that the local authority that I wok for allocated a budget of up to £100 to purchase equipment to enable home working. Speaking to friends, it did seem that many larger companies and organisations had set up a covid fund for this purpose.

I did some online research and purchased a desk and proper office chair as we both had achy backs from months on a static dining room chair! (should have sorted this sooner but didn’t realise we would be at home for so long)

This enabled me to choose a better spot to work in the back bedroom, where lighting is better and my monitor is in a much better position. We have now been asked to complete a DSE (Display screen equipment) assessment and we are then able to apply for funding in addition to the £100 should further equipment be required

Notes to self

  • Undoubtedly you are spending more time staring at a screen so remember to take regular breaks (this was an outcome from an occupational health assessment that I had prior to covid)
  • Be strict on start and end times, just because your desk is now 12 paces from your bed, you shouldn’t be working longer hours!
  • Let your line manager know if you are struggling and ask if there is support for further equipment and/or more flexible working hours
  • Take a proper lunch break away for your screen, spend some time outside or maybe go for a walk
  • Remember that you employer has a duty of care to offer the support that you need

Cross Linking Podcast

Keratoconus and cross-linking with Dr Vijay Anand MCOptom

A good friend and supporter of our group Dr Vijay Anand was recently interviewed on the College of Optometrists’ podcast, about the approach to treating Keracotonus Moorfields are taking .

It was good to hear that referrals to Moorfields are increasing and that patients are younger having been identified at an earlier stage. It is so important that the newly diagnosed get the chance to consider Cross Linking before the disease progresses too much.

Most of the monitoring will be nurse led.

You can listen to the podcast – Here

Cross-linking crosslinking CXL

Sight Loss Needn’t Mean Job Loss

Free 1 Hour Webinar Sept 30th at 10am Every 6 minutes, someone in the UK starts to lose their sight. Visual Impairment is indiscriminate and can happen to anyone at any stage in their life so some of your employees or colleagues could be struggling with sight loss without you knowing. They do their best to conceal the fact that they can’t see as well as they used to which often leads to anxiety, sickness absence, frustration and reduced performance. With adjustments, assistive technology and the right support, employees with visual impairment can, and do, continue to work successfully. This free webinar will cover the challenges and solutions available to overcome them and is suitable for everyone working in Occupational Health, Health and Safety, Wellbeing at Work, HR and Management. Join us on Sep 30, 2020 at 10:00 AM by registering in advance at:https://us02web.zoom.us/meeting/register/tZMkdeiurjopHNeUxw7CVuLCAXtD4mix1xvL

I am a parent of a Keratoconus sufferer

So I am a parent of a Keratoconus sufferer. Since she was diagnosed at 16 I have struggled to understand what my daughter goes through on a daily basis.
I have wanted to post Brooke‘s experiences so often but it never felt right.
Now I want to tell her story and hopefully it can resonate with other sufferers.

Continue reading “I am a parent of a Keratoconus sufferer”

Well Done Ashley

Many of our members will know of Ashley Winter from the talk he gave at the West Midlands branch meeting and his fund raising efforts for our cause. He was due to speak at our June conference which regrettably had to be postponed. Never one to sit back and take it easy, he has been active again and here is a report recently published on the Fight for Sight website.

Hereford man Ashley Winter has set the Guinness World Record for the fastest male blind-folded mile at 10’ 11”, in aid of Fight for Sight.

Ashley, who has the rare eye disease keratoconus, took on the challenge in February to raise money for eye research. After months of waiting for Guinness World Records to confirm the evidence, the 37-year-old received his official certificate last week.

Ashley is a welfare officer for the Defence Medical Welfare Service and served for 14 years. His eye condition means that the normally round dome-shaped clear window of the eye (cornea) progressively thins, causing a cone-like bulge to develop. This results in poor vision, and currently there is no cure.

The event was organised in the run up to Rare Disease Day on 29 February to raise money for vital eye research that could lead to the next breakthrough for sight loss conditions like keratoconus. 

Ashley was diagnosed with keratoconus in 2010 but he is determined not to let his sight impairment get in the way of his passion for adventure and regularly takes part in challenge events to test his endurance levels and physical strength in the face of his condition. 

Ashley said: “I’m delighted that my Guinness World Record attempt had been approved. By doing these challenges I want to prove to myself and to others with an eye condition what can be done if you put your mind to it. By raising money for Fight for Sight I hope to help find the next breakthrough in treating sight loss conditions like keratoconus.”

Director of Fundraising at Fight for Sight Ikram Dahman said: “A huge congratulations and well done to Ashley for his achievement of setting a Guinness World Record. Ashley is a fantastic ambassador for Fight for Sight and we are very grateful for all his work in fundraising and raising awareness for the charity. Eye research was already a hugely underfunded area and this has only been made worse during the Covid-19 pandemic, which is why the support of people like Ashely is more important than ever. We know that researchers are on the cusp of breakthroughs and we can’t let Covid-19 affect out long-term mission – to create a world everyone can see.”

Ashley is now listed on Guinness World Record’s website as the record holder for the fastest mile blindfolded (male).

This has been copied from the Fight for Sight website
which you can visit – Here

VI Talk Podcast

Our very own Mike Oliver was interviewed today by VI Talk for their podcast.

Mike spoke for 17 minutes and hit all the necessary points to inform listeners about Keratoconus. If you need to inform anyone about keratoconus such as teachers or employers, then it would be worthwhile pointing them to this podcast episode. Listen here:

VI Talk is aimed at anyone with a visual impairment, anyone who knows someone who is visually impaired or anyone who has connections with an organisation or group that offers services or support to visually impaired people.

You can find them in the following places.

Facebook, search VI Talk for their Group and Page

Twitter @VITalkPodcast

Website www.vitalk.co.uk

Email info@vitalk.co.uk

Voicemail number 0161 298 8255 Skype name is vitalkpodcast

NHS COVID Advice

In light of the current COVID-19 pandemic, we would like to provide some general information for recipients of cornea / tissue transplants and advice around whether you should consider yourself in a vulnerable group.

“Fit, healthy recipients who are not immune suppressed are not included in the vulnerable list, it is only if they have other conditions”

Read the letter – Here

Statement for people who think they have inaccurately been sent communication about being on the shielded list for Coronavirus.
NHS Digital have recently sent texts and letters to patients who are to be shielded from Coronavirus, to give them the information and advice they need.
Read the Statement – Here

Engineers to develop spectacle lenses for keratoconus patients

University of Liverpool biomedical engineer, Dr Ahmed Abass, has been awarded funding from Fight for Sight and Keratoconus Group UK to develop a new type of spectacle lens that can correct irregular astigmatism for keratoconus patients.

The £15k funding award will support clinical validation of the technology with a view to developing it as a new clinical product.

Keratoconus is a disorder of the eye which results in progressive thinning of the cornea. This may result in blurry vision, double vision, near-sightedness, astigmatism, and light sensitivity. It is estimated to affect between one in 500 to 2,000 people worldwide with most cases of keratoconus become apparent during a person’s teens or early 20’s.

The condition causes distorted vision that cannot be corrected using current spectacle lens manufacturing techniques meaning that patients are entirely dependent on contact lenses or in serious cases, corneal transplants.

Dr Ahmed’s project will address the distorted vision with the development of spectacle lenses that can correct non-orthogonal astigmatism.

Dr Abass said: “We have already developed a proof of concept spectacle lens which can be used by kerataconic patients. This funding will be used to take forward the technology and to trial it in a clinical setting. This is an important next step and we hope the outcome of this project will be to take the technology forward as a clinical product, potentially leading to a major step forward in the current prescription system for patients.”

Chief Executive of Fight for Sight, Sherine Krause said: “We’re delighted to be funding this valuable research project, which could help bring forward the development of a new type of corrective spectacle for those living with keratoconus. We know that people with advanced keratoconus find difficulty in their daily life during the times when they cannot wear their contact lenses, so we look forward to seeing the results from Dr Ahmed’s clinical trial.”

The project also involves Dr Vito Romano, Consultant Ophthalmic Surgeon and Mr Andrew Tompkin, Head of Optometry who are with St. Paul’s Eye Unit, Royal Liverpool University Hospital.

Dr Ahmed has a track record of developing innovative solutions that can help keratoconus patients including a recent Knowledge Transfer Partnership with UltraVision which led to the development of a new generation of Kerasoft contact lenses for advanced keratoconus cases.

Knowledge Transfer Partnerships (KTPs) are a UK-wide Government funded programme which enables Higher Education Institutions to work with businesses to improve their competitiveness and productivity.

The University KTP Office offers a full range of services to support academics and companies from the initial enquiries through to the end of the partnership. For more information about KTP and case studies please visit https://www.liverpool.ac.uk/ktp