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Making screening more accessible for people with a severe mental illness

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Many people experience mental illness at some point in their lives. For some it becomes severe and enduring.

Evidence shows that people with severe mental illness on average die 15 to 20 years earlier. The commonest causes of death are long-term conditions such as diabetes, respiratory disease and cardiovascular disease. For most, outcomes for these conditions have been improving over the last 20 years, but for people with a serious and enduring mental illness (SMI) they have stayed the same.

A woman and a man face each other.

People with SMI are not always offered screening

Over half a million people are thought to have a SMI in England. Some are long-term residents in mental health hospitals, but many live in the community.

Equally Well UK is an initiative which aims to help all people with long terms mental health conditions to have the same level of physical health as those without. Public Health England (PHE) is a member and a signatory to the Equally Well charter. This forms part of PHE's commitments from the Five Year Forward View for Mental Health (FYFVMH).

Lily Makurah, PHE National Lead for Public Mental Health, said:

Everyone should have the same opportunity to lead a healthy long life, no matter who they are, what their circumstances, or where they live in England. PHE is committed to, and continues to support, system-wide action to reduce health and social inequalities and promote recovery and inclusion for people living with or recovering from mental illness so they are enabled to live well for longer in their local community.

SMI and screening

People living in the community with an SMI are less likely to take up screening, which means the health gap is only going to get bigger.

Screening services are commissioned according to requirements laid out in national service specifications which now includes an equality statement. These state that screening programmes should ‘help reduce health inequalities' and should be delivered in a way which 'addresses local health inequalities, tailoring and targeting interventions when necessary’People with a SMI are specifically identified as needing additional support to access screening.

IT systems invite people for screening from national lists of people registered with a GP. However long-term residents of mental health care providers are often not registered with a GP. Extra efforts are therefore needed to make sure screening is available to them.

See the grey box at the bottom of this blog for commonly known barriers to screening.

Progress so far

At present the needs of those in prison (who face similar barriers in relation to GP registration) are largely being met. But the provision of new systems and processes for people with an SMI are largely unaddressed.

As part of PHE's screening inequalities strategy, I would encourage providers and commissioners to think about how this group don't miss screening invitations. National initiatives include:

  • NHS England producing a list of mental health services by region, as some of these are small and may not be known by providers and commissioners
  • work with a screening commissioner in the West Midlands to put together tips for other areas to benefit from
  • piloting a change to the bowel cancer screening IT system to allow eligible people who are not registered with a GP to still be invited

We are aware an audit of access to cancer screening services is being planned to help areas monitor changes. We also want to help to identify and support people with SMI and diabetes to access diabetic eye screening more easily.

We’ll be blogging about all these developments in due course.

Commonly known barriers to screening


  1. People with SMI may not receive an invitation to screening if they are in hospital or not registered with a GP (which means they have no GP practice code).
  2. Having no NHS number.
  3. Problems due to need to bring equipment into secure environments.
  4. Lack of knowledge among mental health trust managers about national screening programmes and how to access local screening services.


  1. Patient specific support. Those in long-term care often have a combination of problems which may mean they need support to access the whole screening pathway.
  2. Cognition/literacy. The presentation of a screening process may need to be adapted for those with SMI, for example a simpler, patient-centred explanation.
  3. Increased anxiety experienced by patients and staff unsure of what screening entails. Anxiety can put patients off screening and staff off supporting them.
  4. Some people may have no permanent home and find it difficult to organise and manage their lives.


  1. Anxiety, as above.
  2. Stigma among staff delivering screening may result in service providers being unwilling or scared to enter mental health setting, especially secure sites.
  3. Clinical teams not knowing what screening their patients are eligible for.
  4. Lack of knowledge among mental health trust managers about screening and how to access local screening services.
  5. Screening leads not being aware their local mental health trusts have long-term residents eligible for screening.

PHE Screening blogs

PHE Screening blogs provide up to date news from all NHS screening programmes. You can register to receive updates direct to your inbox, so there’s no need to keep checking for new blogs.

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  1. Comment by Alain du Chemin posted on


    Thanks so much for this interesting article. You mention NHSE are producing a list of mental health services by region. Could you tell us how we can obtain this?

    Many thanks

    • Replies to Alain du Chemin>

      Comment by Andrew Anderson posted on

      Dear Al
      Thanks for your comment.
      PHE is soon to publish guidance about access to screening for people with severe mental illness that will include a list of mental healthcare providers. Please keep an eye on our blog as we will use it to let people know when the new guidance has been published.

  2. Comment by Sally Reynolds posted on

    “They kept inundating me with letters and that really made me paranoid” (P11, F, L) and “They wouldn’t leave me alone…they kept texting me and I’ve chosen not to have it and I’ve told my GP I don’t want to have it but they still send the letters…I just feel like they’re really trying to pressure you into it” (P112, F, D).

    This appeared in the article in the above post, and yet the authors do not see anything wrong in continuing to pester these people. If their choice is to not participate in screening this choice must be respected, and if the participant has requested to no longer receive these text messages it is against the law to continue to pester her with them. Or don't people with mental health problems have any legal rights?

    • Replies to Sally Reynolds>

      Comment by Linda Syson-Nibbs posted on

      Thank you for taking time to feedback on this blog. We fully agree with your comments.
      The comments you have cited from the research paper ‘Influences on uptake of cancer screening 2016 Clifton et al’ are very profound and illustrate the need for everyone involved in delivering screening to be sensitive to the needs of individuals.
      Our aim is to remove any barriers to participation and where we can provide additional support to meet individual needs. However, where individuals have made an informed choice to opt out this should be respected and individuals should not be put under pressure to change their mind.
      We have blogged about this in the past (for example at, and have also put specific guidance on GOV.UK about this(
      If people feel they are being pestered inappropriately they should make a complaint to the service provider involved.

  3. Comment by Elizabeth Barley posted on

    Great to see this here. Our (PHE funded) paper sets out barriers to screening uptake in this population:
    We are currently developing an informed choice leaflet to help people with severe mental illness access cervical screening. We will happily share this once developed.

  4. Comment by Irene Stratton posted on

    How will you know whether people with a serious mental illness (I think we're talking about bipolar disorder and schizophrenia) are accessing screening or not?

    In the diabetic eye screening data set the information that someone has a serious mental illness is not part of the mandated data set and the information is not transferred from primary care with GP2DRS.

    There are about 18,000 mental health beds in England - that's one for every 28 people with a SMI.
    So almost all those with a SMI are living "in the community". It's not "many are living 'in the community'" it's "almost all of them are living alongside everyone else, they could be living next door to you".

    • Replies to Irene Stratton>

      Comment by Linda Syson-Nibbs posted on

      Dear Irene
      Thank you for your interest and comments on this blog article.
      There is evidence from published literature that people with serious mental illness are not accessing screening. This includes:
      • Clifton et al. Influences on uptake of cancer screening in mental health service users: a qualitative study. BMC Health Services Research (2016) 16:257 DOI 10.1186/s12913-016-1505-4.
      • Mitchell, A. J., Espirito Santo Pereira, I., Yadegarfar, M., Pepereke, S., Mugadza, V., & Stubbs, B. (2014). Breast cancer screening in women with mental illness: Comparative meta-analysis of mammography uptake. British Journal of Psychiatry, 205(6), 428–435.
      • Werneke, U., Horn, O., Maryon-Davis, A., Wessely, S., Donnan, S., & McPherson, K. (2006). Uptake of screening for breast cancer in patients with mental health problems. Journal of Epidemiology and Community Health.
      • Woodhead, C., Cunningham, R., Ashworth, M., Barley, E., Stewart, R. J., & Henderson, M. J. (2016). Cervical and breast cancer screening uptake among women with serious mental illness: a data linkage study. BMC Cancer, 16(1).
      PHE's public mental health team has started work on a survey of cancer screening uptake among people with a SMI diagnosis. This follows the publication of SMI and physical health needs (
      The new survey will use the same THIN data base as described in the above link. The project started two weeks ago and is currently in the methodology design stage, with estimated time for analysis and first draft to be completed by end of March 2019. The results will form a baseline from which change can be measured.
      I have a longer term, pressing aim to see non-cancer screening programmes, particularly diabetic eye screening, included in such a survey, especially given the prevalence of diabetes and the associated poorer health outcomes.