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Who'd opt out of screening?

Posted by: , Posted on: - Categories: General information, UK National Screening Committee

We’ve often discussed on this blog why screening is always a choice. This means that while many people will want to be screened, some won’t. It is our job to make sure the choice someone makes is the right one for them and acted on appropriately.

This message is not always understood, though. We’ve had many comments through the blog, particularly about cervical screening, saying things like:

So many people don't know they have a choice and believe it is compulsory

Women have a legal right to know how they can stop the letters [and] opt out of the programme

Despite informing my practice in writing, verbally and signing a disclaimer I am still hassled every visit to submit to a smear test

Road signs pointing to opting in and opting out

The UK National Screening Committee (UK NSC) recommends screening when the science suggests that to offer screening to everyone will do more good than harm.

We provide lots of information to help people make the screening choice that is right for them. We have just produced new information for people considering opting out of an NHS population screening programme. We hope this will make it easier for everyone to find out how to opt out of each programme. It covers the “call-recall” programmes (bowel, cervical, breast and diabetic eye screening), where people get regular screening invitations. It also explains how to be removed from the abdominal aortic aneurysm screening national IT system.

We’ll be asking NHS Choices to link through to this information from their screening pages. We will also include links from our screening leaflets the next time they’re updated.

If you’re a GP or help people make decisions about screening then please remember no one should ever be pressured into screening. At the national population level, these screening programmes prevent illness and save lives. But screening is not always the right decision for an individual and that should always be respected.

Finally, if anyone follows the steps to opt out but still receives invitations then please let the helpdesk know. Please give as much information as possible so we can investigate what happened. Include details of who you contacted to opt out, such as your local screening programme or your GP, along with the name and address of the GP practice.

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  1. Comment by Margaret posted on

    I wish to opt out of cervical screening and have followed your links to the 'Cancer Screening - informed consent'. It appears from the information on these links that I need to write a letter to my GP informing them that I wish to opt out and that I understand what I am doing. All very well.

    However, if I look at my local guidance from the call/recall people (serco) it would appear that they are asking that women are then invited to sign a disclaimer and also should receive counselling. That it is good practice to send a letter every five years to ask them if they wish to go back on the list (and I am on 5 year recall so that would not change much!) It would appear that they are putting as many barriers in the way of people opting out as they can.

    Another locality says:
    • If a woman permanently refuses cervical screening and becomes upset and angry when she receives invitations of this nature, she may be removed permanently from the National Screening Programme.
    • She MUST be given one to one counselling explaining the benefits of cervical screening and the implications of not having them.
    and that does not sound like counselling to me!!!!
    Whilst I am in agreement with the above article and applaud the positivity it would appear that on the coal face, people's decisions are not being respected and they are being asked to justify themselves every step of the way.

    • Replies to Margaret>

      Comment by Ruth Stubbs posted on

      Thank you for your email. The NHS Cervical Screening Programme recognises there will be women who ask not to receive invitations for cervical screening and who therefore wish to be ‘ceased’ from the programme. However, there are also women who indicate that they do not wish to be screened at that time only and can therefore be encouraged to remain in the call/recall system and decline their individual regular invitations rather than withdraw permanently from the screening programme. This minimises the risks of error and of excluding women who might choose to accept a screening invitation at a later date.
      Women who are certain they want to withdraw from the NHS Cervical Screening Programme are entitled to do so, without argument. The requirements for informed dissent are:
      1. The woman must be provided with sufficient information to enable an informed decision to be made about withdrawing from the screening programme. This must be in a format which is accessible to her. It should include information on the condition being screened for, the screening process (including risks and benefits), and the consequences of attending or ceasing.
      2. The woman will be informed that withdrawing from the programme will prevent her from receiving any future invitations or reminders about screening.
      3. It will be made clear to the woman that she can return to the programme at any time at her own request.
      Women are asked to put their request to withdraw from the programme in writing to their GP to confirm that she has made an informed decision.
      We hope this information is helpful.

  2. Comment by katrehman posted on

    This advice also, I believe also holds true for all screening including bowel and cervical?

    • Replies to katrehman>

      Comment by Mike Harris posted on

      Yes indeed. This information covers all the “call-recall” programmes where people get regular screening invitations, including bowel and cervical.

  3. Comment by Jacquie Jenkins (National programme manager) posted on

    Just a comment to say that whilst anyone, anytime, can opt out of the breast screening programme so that you don't receive any further invitations, you also have the choice to return to the screening programme on request. Just phone your local screening unit and they will organise screening for you again if you are aged 50-70 years. Women aged over 70 can still have breast screening by contacting their local screening unit or GP.

  4. Comment by Irene Stratton posted on

    Having just looked at the diabetic eye screening leaflets it isn't made abundantly clear that
    a) normal eye tests at the high street optician aren't enough to detect diabetic retinopathy
    b) that retinopathy doesn't affect vision until it's well advanced.

    I know from work that I've done that many people don't come because
    a) they think the eye test at the high street is enough
    b) they say "Oh I don't have any problems with my eyes, I'll go when I do have a problem"

    So some people may withdraw from screening without fully understanding the implications.

    • Replies to Irene Stratton>

      Comment by Mike Harris posted on

      Thank you Irene. As you say, it is very important that people invited for diabetic eye screening understand that screening for diabetic retinopathy is not covered by the normal eye test with your optician. The national invitation leaflet includes the following sentence: ‘Remember, diabetic eye screening is not covered as part of your normal eye examination with an optician.’ We will take your comments into account when we next review the national leaflets.