NHS IN THE UK AND KERATOCONUS

We get asked a lot of questions by people with keratoconus or their family members with regards to the NHS- how to use it, when to ask questions, how to get the right treatment so here is a guide put together to help you.

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GETTING AN NHS REFERRAL IN ENGLAND

What is it?  Getting an appointment with a corneal specialist optometrist or ophthalmologist

The NHS in England is very fragmented so the system for referrals will vary. Some areas now insist that all eye referrals must be seen by an optometrist who will either refer direct to hospital or via GP depending on local protocols.

See your GP. If you think you may need to be referred to a specialist tell your doctor early on in the appointment and explain why you think that’s the case. Perhaps an optician picked something up at a routine eye test and thinks you need specialist care. GPs have a duty to listen to their patients and consider their requests but also to avoid over-exploiting valuable NHS resources.

Generally, you cannot self-refer to a specialist within the NHS. A specialist will only see you with a letter of referral from your GP. The letter will give the specialist essential background information, such as your medical history, and it will also contain details that the specialist needs to pay particular attention to.

Your GP will be aware of local protocols and guidelines. If you simply demand to be referred your GP may do so but chances are, if the referral is inappropriate, it will bounce back and you’ll simply get a letter at a later date saying the hospital will not see you. If you feel very strongly that you need a referral ask your GP what the local policies are and if there is anything you can try first which, if that fails, means you may be considered for a referral at a later date. If you understand the process you can work with your GP to access the service you would like.

This makes sure that you end up in the right clinic at your first visit as most optometrists can make a better diagnosis than a GP where eyes are concerned. So it may be a pain at the beginning of the process but helps later on.

You are entitled to ask for a referral for specialist treatment on the NHS. However, whether you will get the referral depends on what your GP feels is clinically necessary in your case. So it is important to give them all the facts.  It is unbelievably frustrating to GP and patient alike to have referrals send back with notes saying “insufficient clinical information”, “full blood count result needed”, “please follow guidelines on optometry referral and then resend”.

The conscientious GP will do their utmost to follow guidelines and supply all the necessary information with the initial referral. And if it gets bounced back with a request for more information, will supply it promptly. But GPs vary in quality and efficiency and some referrals that get bounced back languish in in-trays while the patient waits for an appointment, unaware that it is yet to be processed. Keep on top of this. call the surgery for an update.

If you wish to be referred to a specialist in a particular field, such as a surgeon, or an opthamologist, you should see the GP you are registered with. This is because all your medical records are held by that practice. Your GP also generally understands your health history and treatments better than anyone and will base any decision for a specialist referral on this knowledge.

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Learn more about Can I demand a specific treatment?

For more information, read this leaflet about what happens when you are referred (PDF, 596kb). The leaflet is also available as a black-and-white version (PDF, 316kb).

Choosing a hospital or consultant

If you are referred to a specialist by your GP or other health professional, such as dentist or ophthalmologist, you may have the right to choose which hospital in England to go to for your first outpatient appointment. So if you have been recommended an optom who knows about KC then do mention this to your GP so that they can send a letter directly to that person.

You can also choose which consultant-led team will be in charge of your treatment. This means that if you choose a particular consultant for a procedure, you can choose to have your first outpatient appointment at the hospital where the consultant works and be treated by that consultant’s team. Learn more about consultant choice.

Once you have decided on a hospital, you could book your first outpatient appointment through the NHS e-Referral Service. This can happen in the following ways:

  • your GP can book it while you’re at the surgery
  • you can book it online using the Appointment Request letter your GP gives you
  • you can phone the NHS e-Referral Service line on 0345 6088888 (open Monday to Friday, 8am to 8pm and on weekends and bank holidays 8am to 4pm)

Learn more about patient choice of hospitals.

Under the NHS Constitution, if your GP refers you for a condition that isn’t urgent, you have the right to start treatment led by a consultant within 18 weeks from when you are referred, unless you want to wait longer or waiting longer is clinically right for you. For more information, read our guide to waiting times. if you feel this is too long ask the GP to be explicit in their letter to expediate the appointment- you cannot work becasue you can’t see, impact on daily life etc.

Getting a Second Opinion

The same applies as above, you have to go through the procedure as above, or choose to get a second opinion privately, in which case you can pay to see your chosen specialist quicker.

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Seeing a Consultant in Wales

Your GP OR your normal optician can refer to you to see a specialist consultant if they think you need to.

If you want to see a particular doctor or consultant, you can ask for this. However you don’t have a right to see the person you ask for, and your GP can’t insist that you see a particular doctor or consultant.

But you do have the right to see a doctor who is capable of dealing with your situation.

If you have special reasons for wanting to see a particular consultant, for example, if your child is the consultant’s patient, you could ask for an appointment, explaining your reasons for wanting to see them. If you still have difficulty in seeing the consultant, you could write to the hospital administrator asking for their help.

If you want to get a second opinion you will need to ask the consultant, who may arrange for you to see someone else. If the consultant doesn’t agree, you could ask your GP to help.

Many of us with keratoconus in Wales are finding treatment on the NHS hard to come by and that CXL is not available and so on. You can ask to be referred into the NHS in England to get proper KC options including collagen cross linking on the NHS. In England, patients have the right to choose which hospital they’re referred to by their GP. This also applies to Welsh residents who are registered with an English GP.

This legal right lets patients choose from any English hospital offering a suitable treatment that meets NHS standards and costs. The Welsh NHS does not operate a system of patient choice but looks to provide services close to a patient’s home where possible. Patients registered with a GP in Wales do not have a statutory right to choose which hospital they’re referred to. This extends to English residents with a Welsh GP.

What to Do if Your Local Welsh hospital does not offer treatments for Keratoconus?

  • Explain to the GP or your hospital contact or your optician that cxl collagen cross linking is NICE approved https://www.nice.org.uk/guidance/ipg466/ifp/chapter/What-has-NICE-said
  • Ask to be referred into England to have cxl if this has been suggested as a sensible route for you. Try Bristol, Liverpool, Manchester, or Plymouth NHS hospitals
  •  Research, online and make calls to the big NHS Wales hospitals eye clinics and find out what’s on offer.

KCGB member experiences in Wales:

I’m in Wales (Pembs). I saw my optician who referred me to the GP who referred to the eye specialist (about 2 years ago). I was referred to a local hospital for topography but they didn’t have the higher level specialist. Initially any cxl had to go to Bristol as we didn’t have the right corneal specialists in Wales. However, they’ve now just got one in Swansea so cxl should be available there. 
Essentially the majority of treatment would likely be done by the local contact lens clinic with the higher level treatment done in Swansea. (This is for South Wales, if you’re in North then probably different).
Unlike the other poster I’m under 6 monthly review at the contact lens clinic and similar(ish) at the higher specialist as I’m early stages but currently stable with instructions to contact them if any deterioration.”

My optician first referred me to hospital but North wales only has 1 eye hospital (Abergele) but do not offer any treatment only lens fitting my doctor at Abergele hospital referred me to Liverpool as I knew I needed cross linking”

“‘I’m in Wales and if I needed cxl I’d have to have it in Bristol but would be NHS funded. I see my consultant there about once a year.”

More information – https://gov.wales/topics/health/nhswales/plans/eye_plan/?lang=en&fbclid=IwAR0wQ7I0kLuzNl3-6kwiyLDZ807gAOHo5_Si2iiMuglr0beX9K2ndR7WuGY

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