Setting up the project

The community learning disability nurse contacted all 53 GP practices in south west Hertfordshire to invite them to take part. Practices were approached via all possible routes, including through the local general practice nurses’ network and the community learning disability link nurses. Ten of the 53 practices agreed to take part. All four localities in south west Hertfordshire were represented among the ten participating practices.

The community learning disability nurse asked the ten participating practices to conduct a Read Code search of all people with a cervix on their GP’s learning disability register who were within the age range for cervical screening. The community learning disability nurse then met the nurse responsible for cervical screening in each practice to ascertain the local processes for contacting hard-to-reach patient groups and to determine what previous contact the practice had had with patients in this group who had not attended their latest screening appointment or had never been screened. Box 1 describes two examples of pre-project good practice by nurses to overcome barriers to cervical screening for people with learning disabilities.

In these initial conversations between the community learning disability nurse and practice nurses patients were discussed anonymously, as the practices had to determine which of their patients it was appropriate to share information about on the basis of relevance to their continued care, as set out in the Data Protection Act 2018 and in NHS England’s Information Sharing Policy (NHS England and NHS Improvement 2019).

Preparatory process

The Read Code searches by the ten practices identified 87 people with a cervix on their GP’s learning disability register within the age range for cervical screening. Of those 87 patients, 12 regularly attended their appointments for, and were up to date with, cervical screening. The remaining 75 had either not attended their latest screening appointment or had never been screened. These 75 patients were contacted by letter in easy-read format, introducing the community learning disability nurse and explaining why the practice thought the patient would benefit from talking to the nurse about cervical screening. The letter was followed up by a phone call to discuss and arrange a visit.

Once contact was established and patients had agreed to discuss cervical screening, the community learning disability nurse took each patient through a preparatory process aimed at:

When the patient agreed to undergo screening, the community learning disability nurse liaised with the practice nurse to plan and book the appointment. If the patient needed additional support during the appointment, the community learning disability nurse would attend with them. Box 2 lists the steps in the preparatory process.

All 75 unscreened patients had a mental capacity assessment in relation to cervical screening. Four of these patients successfully underwent cervical screening as part of the project and 71 remained unscreened by the end of the project. Of those 71 patients, some were deemed to have mental capacity and either made an informed decision not to undergo screening or had not completed the preparatory process by the end of the project; others were deemed not to have mental capacity, following which a best interests decision not to undergo screening was made on their behalf.

All patients with mental capacity and who had made an informed decision not to undergo screening were made aware of the signs and symptoms of cervical cancer and what to do if they experienced any of them. When appropriate, the option of future self-swabbing was discussed with them.

All interactions, discussions and outcomes were documented in each person’s patient record and communicated to the practices alongside recommendations for future management – for example, to consider self-swabbing if it became available in the future.

Tools and resources

As part of the project, existing tools and resources were researched and new ones were developed. An ad hoc reporting and decision-making tool, the Cervical Screening Decision Process (CSDP) tool, was developed and used with the 75 unscreened patients. The CSDP tool covers the assessment of the person’s mental capacity to make decisions about their care – in this instance, the decision to undergo or not to undergo cervical screening – as well as decision-making on behalf of the person, in their best interests, if they have been found to lack mental capacity to decide for themselves in line with the principles of the Mental Capacity Act 2005.

Used in conjunction with the preparatory process described in Box 2, the CSDP tool provides a clear and simple pathway for practice nurses to ensure that each person’s mental capacity has been assessed, that their best interests have been considered and that their reasonable adjustment needs have been determined.

The CSDP tool is detailed in Box 3.

A toolkit of accessible resources for preparing patients for cervical screening was developed, which included materials such as:

Barriers to cervical screening

There are several known barriers to cervical screening. In a population-wide survey, Waller et al (2009) found that the most common barrier to undergoing cervical screening was embarrassment, closely followed by intending to have screening but not getting round to doing it. This was reflected in the project, in which some patients invited for screening were not proactive in calling to arrange an appointment.

In their systematic review on attitudes towards cancer among people with learning disabilities, family carers and paid carers, Byrnes et al (2019) found that people with learning disabilities can be influenced in their decisions by their carers. In the project, it appeared that parents and carers sometimes neglected to inform the person with a learning disability of the invitation to attend cervical screening and/or declined the invitation on the person’s behalf.

In some cases, it appeared that the family had asked for the person to be removed from the cervical screening list, without this being discussed with the person or an assessment of the person’s mental capacity. The decision to take a person assessed as lacking mental capacity off the screening list can only be made by a medical professional, who will be accountable for the decision (Public Health England 2019) – this is likely to be the responsible clinician, for example the person’s GP. In a cohort study of access to cancer screening among people with learning disabilities, Osborn et al (2012) found that 25% of those in the studied cohort had been exempted from cervical screening and were no longer being recalled, versus 6% of the comparison cohort of people without learning disabilities.

In a literature review, Watts (2008) identified several factors preventing people with learning disabilities from undergoing cervical screening, including lack of accessible information. People with learning disabilities who have difficulty understanding the risks of not having cervical screening may be able to understand better those risks if they have accessible information and additional support. In the project, several types of accessible materials were used, including easy-read leaflets, a comic strip and a video.

Another barrier to cervical screening is the misconception that it is designed to diagnose cervical cancer rather than designed to detect cervical changes that could develop into cervical cancer if left untreated. Cancer Research UK (2022) identified that worry about what the investigation might reveal was a common barrier to cervical screening. This was reflected in the project, in which a significant number of patients avoided screening because they feared that they would be told they had cancer.

For people with learning disabilities, attending healthcare appointments relies partly on them and/or their family and carers knowing what reasonable adjustments they need, but many people do not know what adjustments to ask for and how to ask for them. Discussing reasonable adjustments is part of the role of the learning disability nurse, but the person with a learning disability and their family and carers may not be aware of the learning disability nurse role (Lloyd and Coulson 2014).

The project took place during the coronavirus disease 2019 (COVID-19) pandemic which created additional barriers, including:

The measures put in place to prevent the spread of infection may have exacerbated pre-existing inequities in accessing cervical screening (Castanon et al 2021), since many people with learning disabilities were classed as high risk and were required to shield, which is likely to have caused further anxiety about attending healthcare appointments.

Positive outcomes for patients

The number of patients who underwent cervical screening during the project time frame was small (n=4). However, the project had other positive outcomes for patients.

The preparatory process gave patients access to information about cervical screening in formats that they could understand as well as the opportunity to consider the benefits and risks involved. The process was beneficial for all, including patients who remained unscreened by the end of the project, since they and their family and carers gained knowledge about the signs and symptoms of early precancerous changes and of cervical cancer, the benefits of screening and the risks of not undergoing screening.

The process also enabled patients to discuss their fears about cervical screening, which may have arisen from past negative experiences or from hearing ‘horror stories’ about it. Explaining that cervical screening is about detecting and treating early precancerous changes, not diagnosing cancer once it has developed, appeared to change some people’s perceptions. Although many patients chose not to undergo screening, many also indicated that they would continue to weigh up their fears against the benefits of screening and potentially reconsider their decision in the future.

More than 95% of cervical cancers are attributed to human papillomavirus (HPV) infection, which is mainly transmitted through sexual contact (World Health Organization 2022). People who have never been sexually active are at low risk of infection with HPV and are therefore considered to be at low risk of developing cervical cancer (Public Health England 2020). In the project, patients were educated about the different levels of risk linked to different levels of sexual activity.

Going through the preparatory process enabled some patients to decide not to undergo screening because they had never been sexually active, but also helped them understand that if they became sexually active, having screening would be important.

A best interests decision not to screen was made for all patients who did not have mental capacity to make a decision about cervical screening. Families and carers believed that the stress and anxiety of having cervical screening without understanding why it was needed would put the person at high risk of psychological trauma and that they might then refuse other healthcare investigations.

Examples of positive outcomes for patients are provided in the case studies of Joan, Susan, Michelle, Freda, Charlotte and Judy (all names are pseudonyms) (Case studies 1-6).

Implications for practice

The pilot project has demonstrated that it is possible to identify, in primary care, people with learning disabilities who do not undergo cervical screening but could do so provided their mental capacity is assessed and reasonable adjustments are made.

It became evident during the project that primary care clinicians do not always question the decisions made by parents and carers and sometimes make best interests decisions without having assessed the person’s mental capacity. One of the five statutory principles underpinning the Mental Capacity Act 2005 is that a person must be assumed to have capacity unless it is established that they lack capacity (Department for Constitutional Affairs 2007). This means that no best interests decision should be made on behalf of the person until a mental capacity assessment has shown that they do not have capacity to decide for themselves. Likewise, no patient should be recorded as having declined an invitation to attend cervical screening or be taken off the screening list without having their mental capacity assessed.

There is a need for more education so that primary care clinicians looking after patients with learning disabilities – and the patients’ families and carers – understand that a mental capacity assessment is a legal requirement before a best interests decision can be made, before the person can be exempted from cervical screening or before the preference of the family or carer can be accepted.

Another statutory principle of the Mental Capacity Act 2005 is that a person must not to be treated as unable to make a decision unless all practicable steps to help them do so have been taken without success (Department for Constitutional Affairs 2007). It is therefore essential that the person with a learning disability receives information about cervical screening in an accessible format and that they are supported to understand and weigh up the benefits of the procedure against the risks of not having it.

Furthermore, the Mental Capacity Act 2005 specifies that a person who lacks capacity to make a decision at a certain time may be able to make that decision at a later date, and that a person may learn new skills that enable them to gain capacity to make decisions for themselves (Department for Constitutional Affairs 2007). It is therefore important to re-assess mental capacity regularly, which is something practice nurses can do during the person’s annual health check, for example.

The authors believe that the preparatory process, the CSDP tool and the accessible resources used in the project can support primary care clinicians who undertake cervical screening with people with learning disabilities to fulfil the requirements of the Mental Capacity Act 2005, use appropriate communication tools and take measures to reduce the risk of diagnostic delays.

The authors believe that collaborating with the community learning disability nurse has helped the practice nurses involved in the project to develop their confidence and skills in assessing mental capacity and making reasonable adjustments in the context of cervical screening. The CSDP tool can be used during annual health checks for people with learning disabilities and will be shared with practices across Hertfordshire and more widely in the area covered by the East of England Cancer Alliances.

The HPV vaccine is given to people of all genders from the age of 12 years to 13 years up to the age of 25 years (NHS 2023). It is therefore important that, between the ages of 12 years and 25 years, the HPV vaccine status of people with learning disabilities, including those who do not have a cervix, is ascertained during their annual health check and that they are supported to be vaccinated as required.

Conclusion

In this pilot project a community learning disability nurse worked with nurses in ten GP practices in south west Hertfordshire to educate patients with learning disabilities about cervical screening and support them to undergo the procedure if they chose to do so.

The process ensured that patients’ mental capacity was assessed, reasonable adjustments tailored to their needs were made and a best interests decision was reached for patients found to lack capacity. Only a small number of patients were screened during the time frame of the project but there were other positive outcomes, including demonstrating that people with learning disabilities can be supported to make an informed decision about whether or not to undergo cervical screening.

The reporting and decision-making tool developed for the project could be used more widely to ensure all people with learning disabilities eligible for cervical screening are given the opportunity to talk to primary care clinicians about it.