Breast and cervical screening can be a daunting, traumatic and often confusing process for women with learning disabilities.
Ramessur-Marsden, H. et al (2008) Screening support for women with learning disabilities. This is an extended version of the article published in Nursing Times; 104: 34, 26-27.
In North Wales, Breast Test Wales and Cervical Screening Wales have worked with the North East Wales community learning disability teams to address this issue. This article describes an initiative to produce a health education package for community learning disability teams to guide and support service users through the screening process.
Heather Ramessur-Marsden, FBDO, PGCE, PGC Health Promotion, is screening promotion officer, Breast Test Wales; Linda Hughes, PGCE, RGN, is nurse coordinator, Cervical Screening Wales; both at Velindre NHS Trust; Penny Tomlinson, RNLD, is community learning disability nurse, Flintshire learning disability team; Alison Corfield, BSc, RNLD, specialist practitioner in community learning disability nursing, is community learning disability nurse, Wrexham learning disability team; both at North East Wales NHS Trust.
The National Service Framework for adult mental health services in Wales (Welsh Assembly Government, launched in 2002, revised 2005) aimed to set standards for services, improve equality and reduce unacceptable variations in service provision.
The Mental Capacity Act 2005 set out five core principles which addressed issues around consent. These principles are:
- Every adult has the right to make her or his own decisions and must be assumed to have capacity to do so unless it is proved otherwise;
- People must be supported as much as possible to make their own decisions before anyone concludes that they cannot make their own decisions;
- People have the right to make what others regard as unwise or eccentric decisions;
- Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests;
- Anything done for, or on behalf of, people without capacity should be the least restrictive of their basic rights and freedoms.
This means that screening services and learning disability teams have a duty to provide support to enable women to make decisions about screening tests. There should also be clear guidance for services concerning best-interest decisions regarding health screening.
Screening Services carried out work in 2002-2003 to assist learning disability teams and other agencies to understand the screening process, its purpose and what clients could expect. The outcome would be that local teams would be able to support women in the decision-making process surrounding screening issues.
As part of an ‘All Wales’ training initiative, all PCTs were issued with picture books and leaflets on breast and cervical screening. A resource pack was also developed to assist teams in delivering information to clients. Those agencies that attended the training were given a comprehensive resource pack as a reference guide.
Local procedures were adopted for breast screening. These included offering women with learning disabilities an extended appointment at their nearest breast screening static centre. Pre-visit appointments could also be organised on request. The advantage of this was that it enabled women to familiarise themselves with staff, equipment and surroundings before their potential screening appointment.
In 2005 an interim needs assessment was undertaken. A qualitative questionnaire was sent out to all those agencies that had initially attended training in 2002-2003. The purpose of this needs assessment was to identify how effective the initial training had been and what further requirements learning disability teams had. The evaluation was completed and an interim report was submitted to Screening Services, which highlighted recommendations for possible further service improvement. In particular, this process identified a need for more comprehensive resources.
The North Wales clinical interest group for sexuality and relationships consists of health professionals from three North Wales NHS trusts. This group, which mainly comprises learning disability nurses, had also identified a clear need for better information relating to breast and cervical screening for women with a learning disability. The aim would be to help clients in making informed decisions about screening.
As both organisations had clearly identified a need for additional resources, they decided to adopt a partnership approach. Therefore, the project was carried out as a joint exercise with Screening Services, Velindre NHS Trust and the community learning disability teams from North East Wales NHS Trust. Each organisation brought its own skills and expertise to the project.
The project’s structure was based on the ‘patient accelerating change’ (PAC) approach, developed by the Picker Institute Europe. The PAC programme was developed to ensure information gained through national patient surveys could be translated into real benefit for service users and professionals. The programme has shown that a creative partnership between clinicians, patients and managers can solve problems and transform services.
The ethical issues around involving people with learning disabilities in research have been much debated (Clegg, 2004; Kellett and Nind, 2001). Gilbert (2004) outlined two methods of involving this group in research: participatory research and emancipatory research. The former involves them in the research process with the support of sympathetic people without learning disabilities and is qualitative in approach. The latter is based on the social model of disability and aims to promote social change. In the emancipatory approach, people with learning disabilities control the research process and it can be both qualitative and quantitative. This project took a participatory approach by working with community learning disability nurses and their clients.
It is recognised that people with learning disability are more likely to have health difficulties than the general population but are less likely to access health support and preventative screening (Lennox et al, 2001; Powrie, 2001; Whittaker and McIntosh, 2000).
The Welsh Assembly Government (2004) referred to the difficulties faced by people with learning disabilities in accessing available health services, despite their right to the same level of service as any other individual.
The DRC (2005) analysed data from GP practices on uptake of screening in Wales. It identified an uptake rate of only 13% for cervical smear tests among people with learning disabilities compared with 84% in the practices as a whole. The uptake rate for breast screening was 26% in this group compared with 71% in the practices overall.
The Department of Health’s (2001) white paper Valuing People stated that: ‘Few people with learning disabilities access health screening services with uptake rates for breast and cervical screening being especially poor.’
This is evidenced by Djuretic et al (1999), who reported an uptake rate of less than 20% for cervical screening. Davies and Duff (2001) highlighted that only 52% of eligible women were screened following their invitation for breast screening.
Several studies have highlighted that this low uptake may be partly due to the misconception that screening is not necessary for women with a learning disability (Smith, 2003, cited in Reynolds et al, 2008). Reynolds et al (2008) supported this, as they found that women with learning disabilities were more likely to be ceased from the screening programme. They also highlighted a need for improved communication to enable this group to understand the screening process. They suggested developing specific letters or processes tailored towards the needs of people with learning disabilities.
One of the most significant barriers to women with learning disabilities accessing screening is communication. Alborz et al (2003) identified a need for communication to be in an appropriate format. They argued that a person’s ability to read appointment letters, information leaflets and consent forms cannot be relied on.
An unpublished report from South East Essex PCT in 2003 also identified a need for appropriate resources to help women with learning disabilities understand the concept of screening as a preventative health measure. This requirement for materials in an appropriate and understandable format was highlighted by Broughton and Thomson (2000).
The Welsh Assembly Government (2004) stated that authorities are responsible for ensuring their information is available in a range of comprehensive, clear and appropriate formats for people with learning disabilities. Therefore, there was a requirement for Screening Services, as an organisation, to provide appropriate information to ensure equity of service provision.
Breast Test Wales and Cervical Screening Wales carried out a joint health promotion initiative in North Wales. A workshop held with women with varying degrees of learning disability demonstrated a wide range of comprehension levels about breast and cervical screening. Terms and topics that healthcare professionals assume are understood by most women - such as ‘scan’ or ‘test’ - are often poorly understood by those with a learning disability. Unsure of what to expect, patients can then feel vulnerable, uncertain or scared during their screening process. This was evident from the workshop.
This initiative produced some useful points for improving communication with service users with learning disabilities. Some of these include:
- Keep it simple;
- Take nothing for granted - do not overestimate the level of understanding that patients may have;
- Provide supplementary information to ensure that those with greater levels of comprehension are not left feeling patronised or dissatisfied;
- Good communication is an essential requirement for any patient, with special needs or otherwise;
- Information and understanding is a key element in ensuring patients’ experiences of screening are positive and supportive;
- Good communication involves tailoring both content and language to fit and to make it accessible for the recipient to understand;
- Best practice - this involves sharing experiences with colleagues, considering alternative approaches and ways of working.
Developing the resource
The project team developed a health promotion/education resource for learning disability teams to use to support women through the screening process before attending for appointments. This consists of a professional pack to enhance practitioners’ knowledge and a health education package that contains two teaching packs, a toolkit, checklist and care pathway.
The team designed the teaching packs to be used as a guide, rather than verbatim, as some service users may have needed the text to be simplified further. The delivery of the information also depended on the expertise and experience of learning disability health professionals to further clarify and explain. The amount of time taken to work through the packs would vary considerably and they were designed to be flexible.
The two teaching packs are entitled Having a Breast Test and Having a Smear Test. The team prepared both in simple pictorial format with very little text. The language was simplified and the pictures used are real images, not animated cartoons.
Both packs were developed in PowerPoint format so they could be used in a group setting or on a one-to-one basis.
The packs allow the screening process to be broken down into small, manageable sections, covering all aspects of the journey from invitation through to pre-visits, appointments and the results process.
The packs can be worked through on an extended timescale before the woman attends her appointment. This will enable a better understanding of screening and the processes involved.
In addition, each participating learning disability team was issued with a cervical screening toolkit, which allowed nurses to demonstrate the cervical screening process or smear test in a more visual way, thus reinforcing learning. Items such as a demonstration cervix, speculum, samplers and smear test request form were included in the kit.
These were developed to assist teams in supporting women through the process of learning about screening tests and making decisions. They also offer guidance on best practice for teams if the woman is unable to consent.
These enable nurses to see at a glance if they have covered those key aspects needed for an informed decision, and to check how much information the woman is able to retain. If it is felt that further explanation is necessary then the relevant section of the pack can be looked at again. The completed checklist can then be documented in clients’ file if desired.
The professional pack was devised in CD-ROM format for learning disability teams to enhance their knowledge on breast and cervical screening issues.
Screening Services carried out a pilot study to determine the effectiveness of the teaching package. The organisation held a training event in summer 2006 to launch the smear test and breast test packs. A representative from each community learning disability team across North Wales was invited to attend this session to launch the pilot.
The session included explanations of:
- The project and the background to its development;
- How the pack was to be used;
- The intended evaluation process which was to follow.
After distributing the packs to participating teams, it was agreed that the pilot should be conducted over six months in the North Wales area. During the pilot, learning disability nurses were to use the packs in individual and group work settings with their clients. All aspects of the package were to be used during the pilot.
During the pilot phase the project team designed comprehensive questionnaires in order to collect qualitative data at evaluation stage.
Two questionnaires were developed, one for learning disability healthcare professionals and one for service users to complete. This enabled us to collect feedback from two different perspectives.
In December 2006 we distributed questionnaires for the teams involved to consider. Following this, the project team made appointments to interview those who had agreed to take part. The aim was to gain as much qualitative evidence as possible to support this project. It also allowed us to identify the pack’s shortfalls and address any modifications that may be needed.
As a result of the interviews we were able to:
- Identify common themes from learning disability teams’ perspectives;
- Assess the design and sequencing of the packs;
- Highlight areas needing modification for the future;
- Broaden areas that required additional information.
The questionnaire asked those participating to score each section of the package. The scoring system involved a linear scale that asked participants to rate the pack from 1 to 5, with 1 being poor and 5 being excellent. Fig 1 shows that overall the package scored very well.
Recommendations from pilot
The pilot led to the following recommendations:
- Develop the teaching packs further so they are available in a variety of formats. It was proposed that the package is made available as a web-based resource, and linked to the Screening Services website. This would make it easier for Screening Services to update information, while allowing users freedom to choose their preferred format and method of delivery;
- Improve picture quality with the use of professional photographs;
- Develop improved carer and patient information leaflets to enable reinforcement of learning;
- Consider developing a visual ‘hands-on’ toolkit for the breast screening package;
- Plan a structured training initiative for learning disability teams across Wales;
- Hold service-user events to promote the packs in a community setting.
Other areas have also been identified where the work could be extended. For example, those patients whose initial screening results require follow-up assessment at a symptomatic breast assessment clinic or a colposcopy clinic could benefit from similar resources.
The Having a Breast Test and Having a Smear Test health education resource packs have now been made available to local teams and members of the public on the Screening Services websites at www.screeningservices.org/csw/prof and www.screeningservices.org/btw.
These packs are available for download in PowerPoint or PDF format. This will allow community learning disability teams to use the packs in a group setting or on an individual basis. Cervical toolkits are available on request to all learning disability teams in Wales.
A training plan is now in place for all learning disability teams in Wales. This involves recruiting members from community learning disability teams to become a screening link person. The learning disability teams’ senior managers fully supported this. The aim for the learning disability screening link person is to develop and nurture a link between their teams and Screening Services to establish a pathway for communication. Training has been completed in North Wales and is now being implemented in other divisions.
Service users’ event
The health minister for Wales, Edwina Hart, launched the teaching packs at a service-user conference held in North Wales in May 2008. The conference was a one-day event specifically for women with a learning disability. It gave them a chance to attend a fun, informal day providing information on a range of health-related topics.
Finding ways to represent concepts that for many people are straightforward is a challenging process and one which requires staff to think more creatively and with more empathy.
All staff groups need to appreciate the communication and cognitive difficulties involved when supporting people with learning disabilities and view solutions directly from service users’ perspectives.
The health education package allows greater understanding and awareness of breast and cervical issues from a patient-centred approach. It is a model that can be adapted to fit alternative screening programmes and can be used specifically with people with learning disabilities or other groups with special needs. The model could be applied to any service provision, making the communication of specific information more readily available.
This project has been a huge learning experience for all project leads, in that it has allowed teams involved to reassess their ways of working and to ensure they are more service user-centred. It is hoped the pack will make a real difference to women with learning disabilities undergoing breast and cervical screening.
Alborz, A. et al (2003) From the Cradle to the Grave: A Literature Review of Access to Healthcare for People with Learning Disabilities Across the Lifespan. www.sdo.nihr.ac.uk
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Clegg, J. (2004) Practice in focus: A hermeneutic approach to research ethics. British Journal of Learning Disabilities; 32: 186-190.
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Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. www.archive.official-documents.co.uk
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