In 2013, it was estimated that 1 068 000 people in England had a degree of a learning disability (Public Heath England, 2013), yet there are no accurate records of the numbers of parents with a learning disability accessing services and estimates vary (McGaw, 1997). A major barrier to offering adequate support is the identification of parents with a learning disability. This can lead to a high proportion of parents with a learning disability having their children taken into care once born: in 2010, this figure was reported to be 60% (MENCAP, 2010). Achieving better patient care is the goal of all health professionals (Department of Health (DH), 2010). However, if the needs of this group are unknown, it is difficult to achieve effective patient-centred care within any health care setting, not just maternity services.
All people are unique in their needs and therefore a model of individualised care should be adopted. The National Service Framework for Children, Young People and Maternity Services (DH, 2004) recognises this and promotes a pathway of care based on the Care Programme Approach (CPA). The CPA should incorporate the individual needs of parents and the care plan should be explained in a way that both parents can understand; however, in clinical practice this has not always been the case.
An important barrier to address in assessing care needs, is clearly defining what is meant by learning disability. The DH document, Valuing People: A New Strategy for Learning Disabilities for the 21st Century provides a clear definition for health professionals (DH, 2001). This definition states that in order to have a classified learning disability, the person needs to have an impaired intelligence, with an impaired social functioning, and this MUST have started before the age of 18 years.
Additional diagnoses that run the risk of being wrongly labelled as a learning disability because of the affect that they have on learning, such as autism and Asperger's syndrome, attention deficit hyperactivity disorder and other emotional disabilities, by their own definition do not come under the category for a learning disability.
Having a clearer understanding about what constitutes a learning disability can help midwives to tailor care at the point of booking. It is also important to have access to appropriate information, resources and expertise available within the multidisciplinary team.
Identification of parents with a learning disability
Training for midwives in the needs of parents with a learning disability appears to be sparse despite Gibson (2007) stating that policy and legislation should be indicative of this. One of the key factors impacting on provision is the lack of accurate records detailing how many parents with a learning disability are currently in the system. Therefore, to try to identify the nature and size of this group and to bring about a practice-to-theory approach to care, each GP practice within the Nottinghamshire County and Nottingham City Clinical Commissioning Groups (CCGs) was audited to identify numbers of prospective women with a learning disability on the maternity pathway. The audit was carried out by each primary care liaison nurse in each of the CCGs. The audit involved the identification of women with a learning disability by using the coding system on the databases for each practice. The acute learning disability nurses based within the three local hospitals were also approached and information was sought about the numbers of women with a learning disability identified at the point of admission for birth. The public health managers for midwifery were also consulted and their feedback also helped to inform recommendations for practice.
Audit of local GP practices
Findings from the local audit were limited and should be interpreted with caution, with only 10 GP practices responding out of 158 across Nottinghamshire County and Nottingham City CCGs, which was a response rate of 6.3%. The low response rate further highlighted the difficulties in obtaining information on the numbers of women with a learning disability. Other limitations of the audit included the inability to identify the fathers as this data is not collected ordinarily. The findings indicated that there were only three women with a learning disability.
The poor response rate is felt to be partly due to the time each practice has, even though clinical searches can be fairly quick. The following comment from a GP below highlights the complexities when gathering data:
‘We have 210 women coded since start of the year with ‘patient pregnant’. Using all codes to get on learning disabilities register none appear to be pregnant and have a learning disability. Complicated search so risky and can go wrong—happy to cross reference by hand if this would help. Practice list size 10 900.’
Another reason may be due to the reliance on colleagues to pursue the data needed for this research.
The numbers that were gathered, however, could still be distorted due to systems using outdated read codes such as ‘mental retardation’ and ‘educationally subnormal’ for some people with a learning disability, which are clearly not in line with current recommendations. This presents further limitations on the ability to retrieve accurate figures, further compounding the problem. In comparison to the figures presented on the Improving Health and Lives website (Public Heath England, 2013) the numbers identified in the audit are not likely to be representative and are likely to be too small to be a realistic interpretation of the actual number of women with a learning disability using maternity services. The number of prospective fathers with a learning disability is also unknown. This information is also important in ensuring adequate support is in place to facilitate appropriate care for the family. It is essential that further in-depth research is carried out to ensure equality and excellence within this service to meet both parents' needs.
‘A major barrier to offering adequate support is the identification of parents with a learning disability.
Responses from acute learning disability nurses
The data from the acute learning disability nurses in the two Trusts clearly indicates that the CPA does not adequately highlight women with learning disability needs at the point of booking. Responses from acute learning disability nurses indicate that 13 people of the 16 identified through this audit had only been highlighted to them at point of hospital admission, five of whom came via safeguarding referrals. Information from the acute learning disability nurses also indicated that 11 people were not identified as needing extra support, based on their learning disability, until the point of labour. This emphasises a lack of knowledge and education in this area. Identifying parents with a learning disability and their support needs at the point of booking would help to avoid this problem and would avoid unnecessary additional complications at the point of labour. According to one acute learning disability nurse, all but one of the cases she supported within the hospital were able to go home as a complete family unit, thus providing evidence that removing the child from its parents is not always a necessity (Rubio-Mayer, 2012). Although safeguarding for some is an essential assessment of the child's needs, having a learning disability should not automatically mean that a parent should be put forward for this.
Other resources currently used, such as the maternity hand-held notes, which may highlight some of this information, are limited in their effectiveness. However, the visual and literacy levels of some parents with a learning disability may have a significant impact on the usefulness of these tools. There is a need to provide extra training for midwives in supporting parents with a learning disability at the first point of booking. Training should strive to achieve equity in service provision and should include supporting parents with a learning disability in their communication and the use of hand-held records if this is appropriate.
‘Although safeguarding for some is an essential assessment of the child's needs, having a learning disability should not automatically mean that a parent should be put forward for this.’
Following discussions with the acute learning disability nurses, it is clear there is a need to carry out an in-depth evaluation of services. Despite the prevalence of people with a learning disability residing within Nottinghamshire County and Nottingham City, it appears that no specific care pathway is in place. There is also a lack of clear guidelines on what to do if a person is identified as having additional needs such as a learning disability.
Discussion
Despite the limited response from local services, it appears that the same problems arise nationally, with a distinct lack of accurate information on the true numbers of parents with a learning disability. Thurtle et al (2007) estimate a range of 23 000 to 250 000 nationally; while Bernard (2007) presents a range of 250 000–4 million people. Therefore it is impossible to say accurately how many people could have benefited from proactive support in the early stages of pregnancy, and without a figure from local safeguarding boards it is not known how many parents with a learning disability still have parental rights over their children. Interpretation of the figures in the research literature can be problematic due to differences in the definition used to describe a person with a learning disability, for example Bernard uses a definition derived by the DH in 1992 which has since been updated (DH, 2001).
Despite inconsistencies in information about numbers, one key factor highlighted in the literature, is the need to provide timely information and improved multidisciplinary team working to reduce the likelihood of failings for parents with a learning disability (Blackford et al, 2000; Bernard, 2007; Thurtle et al, 2007; Ward and Tarleton, 2007; James, 2010).
James (2010) describes the importance of all members of the multidisciplinary team understanding each professional's role and responsibilities in order to meet the needs of those parents with a learning disability. The multidisciplinary team process should provide the midwives with a specific pathway to follow in order to get the right support at the right time (James, 2010). Ward and Tarleton's (2007) research also identified the need to provide support from members of the multidisciplinary team to parents with a learning disability much earlier. It is clear that there are still difficulties providing an effective multidisciplinary approach some 8 years later. It is important to communicate messages to key professionals such as midwives in the appropriate forums and publications. Midwives are always the first point of contact for any person within maternity services and should have access to the full support of the multidisciplinary team as soon as possible, with adequate referral systems in place. There are currently no local guidelines for supporting parents with a learning disability within midwifery and the current care pathway does not take into account what to do if someone is identified. However, Nottingham University Hospitals are currently reviewing their provision and it is hoped further local services will follow suit (Porter, 2013).
Thurtle et al (2007) indicated that health visitors are often the only health professionals known to those individuals who fall into the mild learning disability category—or to those that have lived thus far without a diagnosis being given. Many of these individuals are identified as living within the realms of the social determinants of health and these findings are also reiterated in several policy documents (DH, 2001; Department for Education and Skills, 2003; DH, 2004) and within local practice (Ovington, 2013). With a limited number of health visitors available to provide ongoing support, it is unsurprising that 60% of parents with a learning disability already have had their children removed from their care (MENCAP, 2010). After reviewing the common assessment framework (CAF) (Nottinghamshire Children's Trust, 2010) that is used at the point of safeguarding notification, the expectation of parents with a learning disability being ‘good enough’ when compared to how the general population are perceived to be is an important factor for consideration, which often provides a further barrier in offering effective support. However, there is little consideration given to what ‘good enough’ actually means, and warrants, further debate.
It is possible, that the way the local CAF is written could have an impact on outcomes for parents with a learning disability and their children. The framework advocates an early assessment (Nottinghamshire Children's Trust 2010); however, this does not entirely avoid getting it wrong as indicated in a case publicised by the BBC (2013) involving a high court ruling allowing a woman with severe learning difficulties to be allowed to make her own choice about whether to continue with her pregnancy. The midwives felt that due to the level of the learning disability for this woman, she should not raise her unborn child. However, this was over-ruled by the courts and she was given the right to attempt parenting after birth. With proper support and assessment, rather than assumption, there is scope to ensure parents receive the right learning disability input and support at an early stage to enable them to be parents.
Assessments that meet the needs and understanding of parents with a learning disability need to be considered if a collaboration is to be had between child and adult services, Thurtle et al (2007) and James (2010) suggest a difference in approach between the two teams, and their backgrounds in learning disabilities add weight to their argument. Scotland and the east of England have specific guidelines in place which support parents with a learning disabilities and their needs and offer separate assessment packages to address the child's needs. These guidelines are written by professionals without an expertise in learning disabilities (NHS Greater Glasgow and Clyde, 2010; McGaw, 2000), which reinforces the need for better collaboration and a wider team approach to the campaign for this cause. The east of England currently has guidance in place for practice and the East Midlands can learn from this, given that it has more people with learning disabilities (Public Health England, 2013). Other developments in the south of England include a specific research centre that has provided guidelines to support people with learning disabilities (Fry, 2013). Such developments can inform local services in the East Midlands, ensuring parents with a learning disability in this area have access to innovative patient-centred care.
Training and implications for practice
There are several areas that can be improved to promote equality for parents with a learning disability and midwives are in a good position to enable this. A staged approach to training should be adopted, which involves providing access for the midwives to the GP data systems once a woman who have a learning disability is referred to their team. Training will allow midwives to identify parents with a learning disability and as a consequence will require further support. Learning disability awareness training, which is inclusive of the various codes and flagging systems in the GP practices, is important for all community midwives. This is alongside training and awareness in mental capacity, learning difficulties, support pathways, and the teams that are there to support any identified parent with a learning disability.
Since the development of this study, training workshops have been delivered to midwives in the local hospitals and following this, they have now introduced a yearly update which is set to be mandatory. There has also been an increase in referrals for parents with a learning disability to the learning disability services by midwives, which shows a greater understanding in light of the training provided.
Following the training workshops, the midwives are more aware of supporting the additional needs of parents with a learning disability, including the referral process for the learning disability teams. Information can now be provided to parents with a learning disability using improved methods of communication, thus preparing them throughout the pregnancy continuum, during labour and birth, and also in preparation for parenthood. A clearer transition can now be made to the acute learning disability nurses and all parties are more aware of mechanisms to support parents with a learning disability to communicate their needs, thus supporting the CPA process also.
Future developments include the potential for a joint support plan with safeguarding under the CAF as this would benefit the process significantly. Communications with the safeguarding team are continuing and it is envisaged the benefits of including this plan within the CAF will be realised in the near future.
Signposting to accessible and appropriate information is also an important aspect of the service development. Should a person feel they do not need any learning disability input, but the midwives still feel that there is a barrier in terms of communication, there is a wealth of information in easy-read format on the internet that can be accessed by everyone who is able to use a computer. However, guided access is required and there are plans to provide Nottingham City and Nottinghamshire County with accessible, easy-read information within the learning disability section on the Nottinghamshire Information Prescription website.
It is clear that this is only the start of the project and there is a need to carry out a further in-depth evaluation of the project as it is rolled out across other areas in the local vicinity.
Conclusions
It is often felt that people with a learning disability will not make ‘good enough’ parents and it is important to understand the impact of professionals' attitudes towards people with learning disabilities. There is further work to be done locally in identifying parents with a learning disability to provide individualised care that is appropriate to meet the needs of the parents and child. There is hope, however, in the form of the pivotal role of the midwives within the multidisciplinary team. Midwives should not work in isolation and are best placed to identify additional needs of parents at the point of booking. To do this, midwives should be given the additional skills and support by other professionals in the team.
This article has identified areas of need and the barriers that people with learning disabilities face in trying to reach equality. Recommendations for practice are made, including the need for specific care pathways for midwifery and within safeguarding policy. However, evaluation of recommended changes in practice is needed. If midwives are able to follow through on these changes, the idea that people with learning disabilities can be ‘good enough’ parents can become a reality.