Cross Linking in Wales

For the past few years our group has been working with health professionals in Wales where until now, apart from very exceptional cases, it has not been possible to have Cross Linking (CXL) performed by the National Health Service. However, at last we have some good news to report.

Health Technology Wales has just issued revised guidance for the use of CXL. Their original report on the topic in 2018 stated that there was insufficient evidence(!) for CXL to be used by the NHS in Wales. The revised guidance now states –

“The evidence supports the routine adoption of corneal cross-linking (CXL) for children and adults with progressive keratoconus. Compared to standard care, CXL slows disease progression and may improve visual acuity. It may also reduce or delay the need for corneal transplantation.
Economic modelling suggests that CXL is cost effective on the basis of an assumed sustained clinical benefit for at least 14 years.”

This now needs to translate into CXL being offered in Welsh hospitals (at the moment, only Singleton Hospital in Swansea does) and that is a decision for the Welsh government. Let’s hope that follows swiftly!
You can read the full guidance (which includes a submission from the Keratoconus Group) …Here

Update from Anne Klepacz-

I have now had some feedback from my contact at HTW –


“Thank you so much for your contributions to this appraisal – our appraisal panel were particularly moved by the testimony provided from the patient group and have asked me to pass on their thanks. I think this is such a great example of how important this work of engagement with patients and groups such as yourselves is for health technology assessments.”

So I in turn would like to thank all our members and forum users who have talked and posted about their KC experience and more recently their CXL experience. Without your voices, we couldn’t have contributed to the review (it’s just a shame that we weren’t consulted back in 2018!)
You’ll find our submission right at the end of the report, in Appendix 4.

Corneal cross-linking is effective in treating young keratoconus patients

clinical trial in 60 keratoconus patients aged 10-16 years old, most of which were based at the NIHR Clinical Research Facility at Moorfields Eye Hospital, found that a treatment for keratoconus, known as corneal cross linking, was effective at stopping its progression in young patients.

Keratoconus is an eye condition where the normally round, dome-shaped, clear front window of the eye (cornea) progressively thins, causing a bulge to develop. This eventually impairs the ability of the eye to focus properly, potentially causing progressively worsening vision.

It is known that corneal cross-linking treatment can halt keratoconus progression and stabilise vision in adults, but until now we didn’t know the effectiveness of this treatment in young patients. This is particularly important as keratoconus is known to progress faster when the onset is in childhood and early teen years. The results of this study show that treating these younger keratoconus patients with corneal crosslinking is effective in arresting the progression of their disease. The clinical trial results represent evidence previously unavailable which strengthens the cases for making cross-linking available throughout the UK, which at present it is not.

A patient, Anne Klepacz who was the lay representative on the study, through her role as trustee of the Keratoconus Group charity said: “It is very exciting to have the results of this study, giving hard evidence of the effectiveness of corneal crosslinking in young people, and providing reassurance and clarity for both parents and young people with keratoconus. We hope the findings will result in crosslinking becoming widely available throughout the UK.”

Frank Larkin, consultant ophthalmologist at Moorfields Eye Hospital, said: “Our findings suggest that corneal crosslinking should be considered as the first line treatment in progressive keratoconus in young patients. It will be interesting to see the longer term impact of this treatment for these patients and if it means the patients won’t need to wear contact lenses or have a corneal transplantation in later life.”

This post was copied from the Moorfields website

To read the technical details of the Keralink trial click – here

Sight Village – Exeter

At last we have our first post Covid live event in the diary.

It will take place on 14th September at Sandy Park Stadium, Exeter.  Doors open at 10am until 4pm and entrance is FREE!

Pre-registration will be required and can be done via the link below or by emailing the organisers at sv@qac.ac.uk or calling one of the team on 0121 803 5484. Click the link below for more details:

Sight Village Event Information
Tuesday 14th September 2021

We are keen to get to know our members in the South West so please come along and introduce yourself and perhaps talk to others enquiring about Keratoconus.

Genetic study uncovers hidden pieces of the keratoconus puzzle

Many of our members have been following this study. It has been carried out University College London (UCL), Moorfields, Kings College London and other national and international collaborators and is aimed to investigate the key unsolved questions surrounding keratoconus. Indeed quite a few of our members took part in the genetic study and Stephen Tuft of UCL has thanked the KC Group for its support. You may remember Dr Alison Hardcastle gave an excellent presentation of their findings at our 2019 AGM as reported in our Summer newsletter that year.

The good news is that the latest results from this project have now been published and these are summarised in the the Moorfields Press Release –here

For those with a scientific bent, you can read the full 13 page technical paper – here

Sight and Sound Technology

We would like to thank Sight and Sound for hosting the following webinar for us specifically tailored towards keratoconus. The webinar looks at four scenarios taking people at different stages of their lives and demonstrates how technology can support them. The webinar is a mix of real time demonstrations and presentations showing the technology in use.

You can get more information by visiting their website or contacting Glenn Tookey at: glenn.tookey@sightandsound.co.uk or by phone on 01604 798070 or 07776141516.

You can also discuss the recommended products with other members of the KC Group on our Forum.

Fight for Sight – Small Grant Award

This is an excellent arrangement whereby Small Grants of up to £15,000 are awarded for research. Fight for Sight forms partnerships with charities like ours, each providing 50% of the funding. The advantage for Fight for Sight is that the charity’s involvement helps direct the investment into projects that are likely to be cost effective and beneficial. From our point of view it enables the KC Group to put the donations we collect to good use in the secure knowledge that Fight for sight will handle all the financial and compliance controls. Fight for Sight also ask an independent panel of experts to assess the applications for funding.

The object of our latest partnership is to develop a lab-based laser tool that is compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

Here is the text of the full Press Release:

Researchers at Loughborough University will work together with experts in the ophthalmology field to develop a lab-based laser tool that is more compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

It is anticipated that the outcome of this project will mean that patients can receive treatment to maintain and restore their vision sooner. Ultimately, this will also have considerable impact on addressing the national and global cornea transplant shortage. 

Dr Samantha Wilson is leading the project at Loughborough University. She said: “The ability to understand, detect and diagnose corneal diseases, including keratoconus, at an earlier stage would mean that patients can receive treatment sooner. In the long-term, we expect that such devices will be routinely used by surgeons and ophthalmologists to detect, diagnose and treat corneal diseases before they have a significant effect on vision.”

Philip Jaycock is a Consultant Ophthalmic Surgeon and collaborator on this project at Loughborough University. He said: “The development of devices that can measure the strength of the cornea will help earlier diagnosis and allow further investigation of new treatments to maintain vision and potentially improve vision for patients with keratoconus.”

Chief Executive of Fight for Sight, Sherine Krause, said: “We’re delighted to be funding this valuable research project. We know that early detection is hugely important for sight-threatening eye conditions and this in turn will lead to better outcomes for people with keratoconus and other corneal diseases. Eye research is more important than ever in the age of the Covid-19 pandemic and we must continue to fund research for new, more efficient tests, treatments and cures for the leading causes of blindness and sight loss.”

Chairman of The Keratoconus Self-Help and Support Association, David Gable, said: “Late diagnosis is one of our greatest concerns. There is now an effective treatment known as collagen crosslinking that can stop the progression of the disease, thus avoiding the necessity of specialist contact lenses and transplant surgery. We are happy to fund this important research into the early detection of the condition.”

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