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Equity in Access to Healthcare: Challenges in the Nursing Profession

1. Introduction


Access to healthcare is deliberated as a vital concern among populations, especially among minority populations. This places a stringent task on the healthcare sector to provide fair adequate and proper access to healthcare equally to all stakeholders. The nursing profession, as part of healthcare, has been in existence for many decades since the colonial and World War eras when nurses were required to offer first aid to the casualties of war. Nursing was then purely seen as a vocational career. Since then, things have changed, and the nursing profession has now grown to its prime. Despite the many achievements in the nursing profession, there exist some setbacks and barriers to efficient delivery of services in the health care facilities. These range from inadequate staffing, minimal resources, lack of motivation among other hiccups.

Individuals with intellectual disability have a higher risk of physical health complications and more often face disparities when accessing health assistance. In many countries like England, policies have been put into place to ensure that recommendations are implemented to improve the health care delivery for this population. The main objective of this paper is to conduct a literature review is to examine the level at which patients with intellectual disability and their caregivers face discrimination among other barriers when accessing health care services and determine whether these barriers have been eliminated or minimize over the past decade.


There have been several studies that have been carried out regarding the subject matter, and most of them have pointed to the fact that patients with intellectual disability receive substandard health services and denied adequate health care. Other studies showed that many health practitioners portray negative attitude towards patients with intellectual disability. More specifically, this paper utilised the journal article “Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers” by Ali et al. (2013) as the guiding framework towards the identification of themes in literature in understanding the problem stated above.

1.2.Search Results

Discrimination and Other Barriers to Accessing Health Care4

2. Summary

People with intellectual disability are always at a higher risk of physical illness due to their health conditions. For a long time, these individuals have faced discrimination when trying to access health care in many health care institutions. Though there have been efforts by some countries like England, where they have improved the health care delivery among patients with intellectual disability by coming up with legislative laws and policies, the issue of discrimination against the intellectually disabled remains an issue in many parts of the globe. In the reference qualitative research study utilised for this paper, twenty nine participants (14 carer dyads and patients with intellectual disability, and one carer) were interviewed on their viewpoints concerning discrimination and other barriers to accessing health care (Ali, et al., 2013). The interviews were recorded using tapes and transcribed and later analysed by the employment of thematic analysis. About Eight themes were identified in the research process. 50% of the individuals interviewed believed that patients with intellectual disability were discriminated in health care centres.

There were other barriers to efficient delivery of health care services to patients with intellectual disability which included communication, lack of support, and language problem especially among the ethnic communities (Ali, et al., 2013). On the other hand, majority of the interviewed individuals were able to give examples of efficient health practice among these patients. Suggestions were also mentioned in order to improve the health care services among people with intellectual disability. In conclusion, regardless of the recommendations and improvement in health care among intellectually disabled patients, a lot of effort and progress in required to make sure that reliable adjustments are made to minimize both indirect and direct discrimination of patients with intellectual challenge.

3. Themes

Through a review of the articles identified process, three different themes were observed to emerge from a majority of the studies. These include barriers in health access; discrimination from health service delivery; and the elements of good practice.

3.1.Multiple barriers hinder access to adequate healthcare

One of the themes that came out is the theme of barriers in health care facilities. One of the barriers is the issue of communication. In the reference article by Ali et al. (2013), 12 patients with intellectual disability and 12 carers mentioned the communication barrier issue. Many of the patients felt that they were being ignored by the medical practitioners during the consultation process and there was no direct involvement of the patients especially if their carer was available; it was just a talk over the consultation. The patients and the carers felt that the clinicians failed to modify their communication skills and techniques to suit the need of intellectually disabled patients. The patients were not given more time to respond to the questions asked by the physicians.

Similarly, Tuffrey-Wijne et al. (2014), in a study to identify the barriers and enablers to health services to people with intellectual disabilities in acute hospitals using a mixed method design, conducted a study using a sample composed of hospital staff, adults with intellectual disabilities and carers of patients with intellectual disabilities. They discovered that communication across organisational level was a major problem in serving the sample population. A number of patients with intellectual disability complained that they could not understand what was being said and the health practitioners could not understand them either. On the other hand, carers mentioned the problem of communication as a result of lack of confidence and power to express themselves (Tuffrey-Wijne, et al., 2014). Most of the patients preferred the presence of their carers during the consultation sessions. Through carers’ presence, they could act as advocates if the patient could not understand or answer the questions asked.

Brown et al. (2016) also found out that patients and carers complained about lack of proper knowledge of the procedures, diagnosis and medication regimes. The doctors failed to inform the patients about the possible side effects of the prescribed medication, and what are the measures should be taken in case such side effects should be witnessed. The medical practitioners also did not give the required duration of taking the medication. Due to lack of adequate or information at all made the patients to be frightened and a feeling of being pressurized to undergo treatment.

The second barrier in this theme of barriers in health care access is the problem with accessing help. A number of eight patients with intellectual disability and twelve carers mentioned difficulties in accessing help from the health care centres (Ali, et al., 2013). Carers interviewed confessed that there was difficulties in accessing health care on time and their needs remained unmet and those of their patients. The health practitioners failed to perform GP home visits in case the patients failed to attend surgery; patients perceived GP as unnecessary especially on social issues. Carers confessed that these services were only offered in case of emergencies and that greatly angered the patients.

Other studies including one by Friedman et al. (2012) found out that carers reported complains of not being fully informed about the structural formation of the health facilities. They lacked the clarity about the referral directions and the procedures to be followed during service delivery. There were disputes that engulfed the delivery of services that included eligibility issues and the question of who would take responsibility of the patients. In the UK, service for the intellectually disabled patients is handled in a multi-disciplinary method where experts in social and health care provide adequate services (Dunkley & Sales, 2014). On the contrary, many carers do not have any knowledge of the existence of these services. There was no transition between childhoods to adulthood as it was noticed in one case of a patient who left the hospital at the age of 16 years and on their return, there was no change on how the patient was treated considering now that he was an adult (Ali, et al., 2013).

Communication barriers were also evident on the language used by both the patients and medical practitioners. In a study identifying the training needs for healthcare proffsionalas for their interaction with individuals with intellectual disabilities, Hemm et al. (2015) found the theme of poor communication especially mong the patients who did not have English as their first language, they found it hard to express themselves or even understand the doctor’s instructions. Such patients and carers confessed of being ignored at consultation level and their views were given little attention and the information about their patient was not shared with them (Hemm, et al., 2015). The language barrier acted as a hindrance to access health care and support such as help in completing benefit forms. Unfortunately, a lot of health providers failed to provide interpreters to such patients and carers and that led to the feeling of being marginalized.

In the category of barriers in accessing health care, there exists the problem of how health practitioners relate to carers. In an interview, 9 carers and one patient with intellectual disability reported difficulties when relating with health professionals (Friedman, et al., 2012). The knowledge the carers held about the progress of the patients was diminished and ignored by staff. Carers who showed a lot of concern towards their patients were regarded as over-protective. Carers were also denied access to clinical reports of their patients which made then to attend all appointments concerning critical decisions and sometimes that proved to be impractical. The staff members in some cases questioned the presence of carers and that made them to be embarrassed.

Carers also faced the problem of self-draining due to lack of support from family members and relatives. Ali et al. (2014) discovered that most of the families with patients who have intellectual disability, opted to stay away from them and leave them at the mercy of carers. Due to this condition, carers reported to suffer health complications like poor emotional wellbeing, stress, and exacerbation of health problems. Only a small percentage of carers who were able to access help from advocacy or voluntary groups.

Many carers reported not being able to air their complaints as there is no platform to do so. One carer talked of how she had aired her complaint for more than 4 years yet she received no help from the addressed institutions. That led to demoralization due to lack of moral support. When such cases were adhered to, the concerned solicitors required a lot of money to solve the issue and the carers did not have such money and that made their complaints not to be solved leaving them discouraged and demotivated.

From the above theme of barriers in accessing health care among patients with intellectual disability, there are numerous strategies that should be put into place by the carers, patients and the health practitioners. Each stakeholder has a role to play in ensuring that these barriers are eliminated or rather reduced. The issue of communication should be solved by using a language that both the carer and patient will understand. In case of foreign patients or carers, the health care centres should provide an interpreter to ensure that all parties understand the process of treatment. Carers should also be involved and not left out in the treatment of patients. That will help them gain knowledge concerning their patients as they spend a lot of time with them more than the medical practitioners.

Finally, the healthcare centres should clearly define the kind of services they offer to the patients and the carers. As seen in the theme of barriers, many carers’ and patients’ needs remained unmet due to lack of information concerning their rights and privileges. The health centres should have booklets and documentations explaining to their clients about their services and the protocols to follow when looking for such services.

3.2.Discrimination from health services is still a pervasive concern in the UK healthcare system

Discrimination is one of the barriers to accessing healthcare services for people living with intellectual disability. The word discrimination itself and labelling (inclusive of diagnostic labelling) commonly associated with patients with intellectual disability is unfair and in turn results in stereotyping of the patients whereby the patient is classified subject to the other person’s knowledge capacity in that area (Ali, et al., 2013). Prejudice and stigma which may lead to discrimination in the short-run occurs when exposure from previous experiences to other patients with intellectual disabilities has been negative or unpleasant. Dunkley (2014) implied that stigma is acquired and expressed when individuals engage with people of undesirable differences and with such encounters the mind-set is different and thus changing the social identity and consequently creating negative attitudes to the extent that the person who has the differences is not socially acceptable.

These individuals also face more health problems physically that are not faced by other healthy people. In the reference study conducted by Ali et al. (2013), 29 participants participated in an interview to determine whether the rate of discrimination had gone up or down in the last decade. The study was set up on the basis of allegations of neglect and discrimination in the UK, where 6 adults who were intellectually disabled had passed on due to neglect and discrimination. Using thematic analysis, the audios that were recorded were analysed. 50% of the participants were of the opinion that the patients had been treated unfairly by the healthcare workers and sited cases of negative behaviour and attitudes towards the patients (Ali, et al., 2013). These negative behaviour and attitudes included the following; the staff hold poor or no communication with the patients, they are subjected to long waiting hours in the waiting room for no reason i.e. other patients are attended before them thereby experiencing delays in their treatments, the staff are also unable to adjust their conversations, so as to suit the patient’s needs. Patients with intellectual disability need to be addressed with a lot of patience so as to understand them. Their level of understanding is lower and therefore they require the staff to adjust their communication as he speaks to them. Discrimination is also witnessed when the patients are denied diagnostic procedures and also treatment.

Perry et al. (2014) also conducted a study investigating the experiences of individuals with intellectual disability using focus groups as the main instruments of collecting data from the participants. The experiences of the patients were recorded and transcribed where emerging themes were identified. Although the general consensus of the patients pointed towards positive experiences in healthcare access, there was the element of discrimination by healthcare services in several settings. Moreover, there was consistent and enough evidence of health needs of the patients. These are; they receive minimal attention and care by caregivers, access inadequate health promotion and finally have poor access to high quality health services (Perry, et al., 2014). It is the effects of these factors that have resulted to poor health in patients with intellectual disabilities. Studies by Hemm et al. (2015) further added that the absence of proper legislation and distinct policies overseeing the treatment and care of patients with intellectual disabilities using generic services together with the evidence readily available of the lack of proper knowledge by NHS staff may result to the charge that the Government is not implementing its duty of care towards this vulnerable patient group.

Staffs are providing proper care to a wide and diversified group of people with whom they have experienced little or minimal previous contact. In a study by the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) in the UK, Heslop et al. (2012) within the UK healthcare system. The study was a follow up of an independent investigation carried out by the Department of Health with reference to the reports of death due to discrimination and the recommendations were that intellectual disabilities education should be a mandatory factor in all undergraduate health courses and an element of continuing professional advancement in addition to proper care and inspection methods on how the NHS cares and treats patients suffering from intellectual disabilities (House of Lords, 2017). Calls for pursuing education in intellectual disability of health professionals have been emphasized over the past years as an outcome of research findings.

Heslop et al. (2012) argued that it was very difficult to ascertain whether any of the health professionals in the cases reported were knowingly discriminated against the individuals whose experiences were reported. Most of the families affected admitted to the words of the various health staff which were discriminatory in nature. However, they were not recorded in case notes. This however, does not imply that discrimination of patients with intellectual disabilities did not happen (House of Lords, 2017).Existence of ignorance may lead to institutional discrimination due to policies, procedures and practice lacking a ground in evidence and knowledge base. Flynn et al. (2016) showed that, by condoning the high standards of ignorance among health professionals to continue, health service providers are guilty of encouraging institutional discrimination. The idea of creating discrimination and bias towards patients with intellectual disabilities follows a path that is often supported by fear and assumptions.

3.3.Not all Experiences are bad, Good practice still exist in providing healthcare

Good practice is directed to two areas the service given to patients and the internal relationships in the hospital such as between doctors and carers or other health workers in the hospital. In a study by Perry et al (2015), 102 patients with intellectual disability were interviewed to discuss examples of good practice from health services. It was noted that in some situations, the staff that had gone out of their way to cater to the needs of their patients ‘beyond the call of duty’ experienced higher levels of satisfaction. In one case a patient had gone for an overnight stay and was feeling distressed because she had forgotten her injection, she went to see the ward who was so kind enough to see to her needs and show her where she would be staying.

In situations where the carer and the patient felt respected; there were favourable communication skills, helpful and friendly staff (Flynn, et al., 2016). There were also a couple of examples of the health care system being accommodating and adaptable towards the needs of individuals with intellectual disability, like giving longer appointments. A carer reported to having felt nice when a doctor had spoken to her directly respectfully which was a rare occurrence. This is because most doctors looked down upon carers and did not care to ask them for their help in something (Ali, et al., 2013). There were instances of good care being given, among which community services provided health promotion strategies and GP health checks. In spite of the fact that some areas of health care were improving, some carers felt there was still some way to go. As reported by Ali et al. (2013), a carer was reported saying “I think that inpatient care got better because they give you a care plan and you answer a load of questions, and I think that has got better, saying that we had the menu thing so that means one can looks at the care plan.” This was indicative of good practice within the field of healthcare provision for the mentioned community.

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Additionally, when Ali et al. (2013) discovered that when participants were asked whether they felt that health care had become better in recent years, their responses varied with some saying that their experience had gotten worse or remained unchanged. Others viewed that the Mental Capacity Act and Disability Discrimination Act did not make things clear and were confusing. In the research, nine carers and eight patients with an intellectual disability provided ideas for improvement. It was suggested by some participants that if the information was given in an easy to read format and was accessible health services could be improved. Records stored in computers need to be highlighted so as to notify intellectually disabled to the staff, and they should be taken to see the ward before undergoing any surgical procedure. A patient was complaining that just like when a person with diabetes goes to the doctor it comes up on the doctor’s notice, persons with disabilities should get the same treatment when they go to visit the doctor and should be allowed in first if they are in stressful situations.

In the study by Brown et al. (2016), a couple of participants felt it was important for staff to have good knowledge individual needs. Other suggested that employees had to have training in communication skills and conditions that are relevant for people with intellectual disability. One participant said that it is not sensible to know a person with special need if the staffs are not aware of special need. This training would be best effected by involving carers and patients. The proposition was made about having connections to nurse with knowledge in intellectual disability. One participant suggested that the carers should take courses on how to treat people with disabilities well, also they should have to contact the hospital through their hospital contacts. There should be an expert in dealing with intellectually disabled people in all hospitals to assess the situation for when mentally disabled persons are admitted.

In conclusion, people with learning disabilities should be treated with the same urgency and respect as other patients in the hospital this is because they have needs to that needs to be taken care of. Doctors need to also treat carers with respect, so since they are also professionals, this will translate into a better working relationship between the physician, carers, and patients.


Discrimination and barriers to healthcare access are very evident in the healthcare facilities as discussed in the various articles and studies. With the reforms in the policies and numerous recommendations, change in the society’s perception of people with intellectual disabilities will change. However, this will be a process as all the stakeholders must be involved and actively participate in eliminating bias and discrimination of these patients. Very few of these policies have been implemented or absorbed fully into the system and this poses a challenge on how fast these changes can be implemented. It is clear that, to fight this menace, all the stakeholders will be required to put extra effort, otherwise the changes are as good as not being implemented altogether.

4.1.Suggestions for improving care

Patients with intellectual disability as seen in the about qualitative research, many of these patients reported of being discriminated against during service delivery in health care centres. After further investigations, there are a number of recommendations that could be put into place to ensure that there is a smooth and efficient delivery of services to such patients. One of which is the improvement of the communication systems. Communication is a major factor of concern especially due to the language barrier to patients whose first language is not English. Interpreters should be availed to such individuals and that would enhance understanding of the hospital procedures and doctors’ prescriptions.

Finally, the carers should be involved in the treatment process rather than being left out in the whole process as seen in the previous research. Carers have direct contact with patients with intellectual disability and have a deeper understanding about them. Allowing them in the treatment process will also create a friendly environment and help patients to open up and be helped. Overall, the well-being of patients with intellectual disability should be spearheaded by many stakeholders from their family members, carers, community and the health care centres. One of the best ways to help such patients is by showing them love and compassion. Taking them as members of the community and involving them in the normal activities. That will bring about a sense of belonging and security and thus increasing cohesiveness among people.


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