Public Consultation on Refractive Surgery, inc meeting 18 May 2016, RCOphth, London

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Refractive Surgery Standards: Engagement Session

Have your say and contribute to the consultation on raising standards for refractive surgery being developed by The Royal College of Ophthalmologists

When: 18 May 2016 1400-1700hrs

Where: Goodenough College, London House, Mecklenburgh Square, Bloomsbury, London, WC1N 2AB

The College has been working with some of the UK’s leading refractive surgeons, RCOphth Council members and patient and optometry representation to develop improved standards for the practice of refractive surgery in the UK.

From 27 April 2016, for a period of six weeks, the College will open the draft standards for consultation via the College website and we encourage you to have your say and comment.

The Public Engagement Session on 18 May is a chance for you and members of the public to provide direct feedback and raise high level questions to the panel that have authored or developed the draft standards, which cover:

Guidelines on standards for patient information and consent
Advertising and Marketing Standards
Procedure specific information for patients

The Royal College of Ophthalmologists looks forward to welcoming you to this important event.

To register your interest and receive further information please complete and return the attached Booking Form to Beth Barnes, Head of Professional Support beth.barnes@rcophth.ac.uk by 5 May 2016

There is a limited number of spaces available for this public session and you are advised to book early and reserve your seat.

https://www.rcophth.ac.uk/standards-...ement-session/

[Royal College of Ophthalmologists, Facebook, posted 7 May]

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Refractive Surgery Standards Consultation

28 April 2016

The College has been working with some of the UK’s leading refractive surgeons, RCOphth Council members and patient and optometry representation to develop improved standards for the practice of refractive surgery in the UK. This is in response to the Keogh Report.

From 27 April 2016 until 8 June 2016 the College is consulting on the first outputs of the Group and we encourage you to have your say and comment on the draft:

Standards for Patient Information and Consent
Advertising and Marketing Standards
Procedure specific information for patients; Patient Information Refractive Lens Exchange, Patient Information Phakic Intraocular Lens Implantation, Patient Information Laser Vision Correction, Patient Information References.

[see links to each section through RCOphth website, or direct link below]

The College is specifically interested in comments on

the comprehensiveness and applicability of the documents
the content and content and clarity of the documents and their suitability for different environment
whether the advice looks straightforward and is usable by service providers and service users
the interpretation of the evidence available to support its recommendations
the likely impact on patient groups affected by the standards
the likely impact / ability of service providers to implement the recommendations
do the standards achieve their intended aim(s)

Please send any comments to beth.barnes@rcophth.ac.uk by 8 June 2016.

Furthermore, you can provide direct feedback at an engagement session for members of the public being run on Wednesday 18 May in London. This is an opportunity to raise high level questions to the panel that have authored or developed the draft standards. There is a limited number of spaces available for this public session and you are advised to book early and reserve your seat.

https://www.rcophth.ac.uk/2016/04/ha...thalmologists/

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URGENT - problems with lasik or IOL? - speak up. Please reply by Wednesday 8 June 2016 to https://www.rcophth.ac.uk/2016/04/ha...thalmologists/ (Royal College of Ophthalmologists, Refractive Surgery Standards Consultation)

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Second phase of consultation on standards in refractive surgery - please respond before 5 October 2016.

Royal College of Ophthalmologists website https://www.rcophth.ac.uk/2016/08/rc...ctive-surgery/

This consultation seeks views on the document ‘Professional Standards in Refractive Surgery’ from health and care professionals, stakeholder organisations and the public. The document builds on the April 2016 guidance from the General Medical Council ‘Guidance for doctors who offer cosmetic interventions’, associated guidance issued simultaneously from the Royal College of Surgeons ‘Professional standards for cosmetic practice’ and the Keogh Report ‘Review of the Regulation of Cosmetic Surgery Interventions’ (Department of Health 2013). It incorporates elements from the responses to the Spring 2016 consultation on draft Standards for Patient Information and Consent and replaces that draft document.

We are seeking feedback on the further information for refractive surgeons outlined in the document.

Consultation period:

24 August 2016 to 5 October 2016

Consultation document:

Professional Standards for Refractive Surgery

How to respond:

• You must use the Comments Form, responses sent in other formats or document types will not be included Comments must be submitted by 5pm on Wednesday 5 October 2016, any comments received after this time will not be included

Send the completed Comments Form to beth.barnes@rcophth.ac.uk

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I received a nice email from RCOphth.

'Dear x

...Thank you for sending in your comments. I have sent them on to the document authors to be considered as part of the consultation...

Kind regards x'

I wasn't asked for permission to publish my submission in the first phase public Consultation Report, so I'll leave it here below (original) to show you I tried for you. (I can't take calls/personal contact any more.) I am not related to this website or forum.

...

Experience

I have been taking suicide calls for an eye patient forum for 4y. The patient group networks internationally to help find treatment. Problems arise years after the original surgery, as well as soon after.

They ask ‘Is there any hope’ and ‘Are there any treatments available’. What happens to these patients who ‘accepted the risk’ on what they thought was medical advice? They are shocked that the surgeon/clinic they paid does not look after them. Guidance on care pathways or treatments with other providers for subsequent problems is not given. All eye surgery patients are vulnerable. They believe a doctor has a duty of care and that there must be procedures. They have been dumped.

Quote: ‘only after I attempted suicide would they refer me to Moorfields’ (NHS Intensive Care nurse).

Patients do not seem to get a copy of the Contract, or Medical Record of the procedure, equipment, or implant, even refraction before and after. Neither does the GP, despite GMC Regulation on passing Medical Record to subsequent providers.

They re-present to the NHS, confused. They trail round Private eye doctors and optometrists who sell them high-cost procedures, like Lipiflow or Intense Pulsed Light, which do not solve eye surface, scarring, or neuropathic problems.

International standard treatments for ocular surface disorders, chronic pain, and surgery damage, like custom-fitted scleral lenses, autologous serum products, sealed-chamber glasses, compounded eyedrops, even meibomian gland expression, are not available from refractive surgery providers. You would expect them to be. Patients cannot access confocal microscopy to examine nerve regrowth and anterior segment OCT outside NHS specialist centres. By the time NHS access to blood products is granted, problems have escalated and Quality of Life is poor.

No psychiatric support can obtain eye treatment for bad outcomes.

There is a problem with the medical standards of Optometrist advice versus sales.

Patients cannot make an informed decision without complete audited data on procedure, equipment, implant, and surgeon, and longer-term tracking. Small samples from other businesses are not enough. Data can be drawn from the NHS Medical Record. Outcomes data can never be ‘commercially confidential’, especially when patients are dumped on other providers.

Patients have been reluctant to use medical negligence firms to pay for future treatment, although this is changing. It makes sense to enable insurance for adverse outcomes for these patients who took the risk and lost.

Documents

• the comprehensiveness and applicability of the documents

None of these documents read as if they are by an independent legal regulator.

‘Standards for Patient Information and Consent’ is good and the most impartial.

2 Limitations of the service should be clear.

3 Clarity needed on ‘essential connected treatments not available at that provider’.

4 Written consent forms should always be available, dated, on the company website, or there must be an intention to deceive.

Patients expect the medical professional to guide them and assess pre-existing conditions. This includes psychological and vulnerable adult screening, particularly if sales literature appeals to body dysmorphia.

7 On discharge, the patient’s Medical Record should be passed to the NHS through the GP, and a detailed copy supplied to the patient suitable for other treatment providers. Data is required to be kept by the provider for outcomes tracking. The provider should be available for guidance and information on accessing further treatment arising from the procedure.

‘Patient Information’ documents read as if they are designed to create loopholes - variable contracts, unclear indemnity for bad outcomes, expiring duty of care. Limitations of the contract are obscured, for example emergency help or essential related treatments not provided in that clinic for which patients would have to seek other providers. There is no intention to coordinate this or reimburse.

• the content and clarity of the documents and their suitability for different environments

The Patient Information documents contain no data. They read like poor-quality sales literature (eg contact lenses may give you keratitis, sport is a problem with glasses, dry eye from contact lenses is misdiagnosed but you can have lasik). Odd to see contact lenses and glasses maligned in an optometrist environment.

• whether the advice looks straightforward and is usable by service providers and service users

Patient Information reads like sales literature, rather than medical documents. There is insufficient medical information (ectasia, complications, vision problems). ‘May experience’ and ‘will improve’ is not the full truth (see Journal of Refractive & Cataract Surgery). Chronic dry-eye inflammation can make someone housebound, and neuropathic pain is very difficult to live with and treat. The advice is incomplete.

• the interpretation of the evidence available to support its recommendations

A literature search is not an evidence base. The samples are small and mostly biased if funded by medical equipment or pharmaceutical companies. A centralised database would be more accurate, and should include Quality of Life indicators, and long-term follow-up. It looks selective to the last 5y because of poor outcomes from procedures used previously.

• the likely impact on patient groups affected by the standards

There will be improvement if providers take responsibility for helping damaged patients.

• the likely impact / ability of service providers to implement the recommendations

Can’t say.

• do the standards achieve their intended aim(s)

No. Much of the Keogh Report on centralised outcomes data and duty of care is not addressed. There is a focus on the patient accepting risk and limitations of one-off treatment on trust, without full information, rather than on providing ongoing responsible medical care. Without intervention from professional bodies on standards, there is a danger of surgery passing into disrepute. Patient groups have a keen interest in reputation and know what procedures are available. There is no good reason to hide outcomes data, because how patients are treated if there are complications is fundamental to choice of provider.