Integrated policy-making in England for adults with long-term neurological conditions

According to Cornwell J (2012), Rosengard et al (2007) and Good win et al (2014) and Kings Fund (2016), the number of people with complex needs is expected to double in the coming years, both worldwide and in the UK, which will put increasing demands and pressure on the system of care providers and case management of people with complex needs. Although the reports do not mention a specific time frame for the predicted increase in numbers, what is known for certain is that within the context of better support services combined with development and advances in medical care, people with complex needs due to profound and multiple disabilities are now living longer than before, putting an increased strain on care providers and the provision of health and social care services across the country. The latest official statistics available (Disability Prevalence Estimates 2011/2012, published on 16 January 2014) indicate a steady increase in the number of people with complex needs in the UK, from 10.4 million in 2002/2003 to 11.6 million in 2011/2012. The increase in numbers, combined with longer lifespans due to better medical care available, points to a significant impact on the existing healthcare provider services, which also affects the quality of services available for people with complex needs.


Statement of purpose

The purpose of this study is to explore the challenges of implementing quality of care into practice amongst care providers for people with complex needs. By understanding the challenges experienced by care providers, healthcare practitioners are better able to provide support, policy reforms, education and interventions aimed at enhancing the adaptation for care providers who care for people with complex needs, which may in turn have a positive impact on the adaptation and the quality of care of people with complex needs.

As an umbrella term, “complex needs” is generally used to refer to people whose level of disability (either physical or learning disability) or mental health condition requires constant input and monitoring from specialist care services (Rosengard et al 2007). The lack of a universally acceptable definition of the term is confirmed by Ranking and Regan (2004) who state that “there is no generic complex needs case. Each individual with complex needs has a unique interaction between their health and social care needs and requires a personalised response from services” (p. i). The authorities’ view on people with complex needs is probably best summarised in the Factsheet published in June 2014 by the All Party Parliamentary Group on Complex Needs and Dual Diagnosis (APPG), where a person with complex needs is defined as “someone with two or more needs affecting their physical, mental, social or financial wellbeing” (p. 1). This definition points once more to the fact that “complex needs” is a very broad term which can acquire different meanings in different contexts. For the present study,  persons with complex needs are defined as adults with moderate to severe learning and physical disabilities, various co-morbidities and long-term multiple conditions which require 24-hour nursing care and sustained regular input from a multi-disciplinary team (GP, physiotherapists, occupational therapists, consultants, dieticians, speech and language therapists).

While a number of studies have been conducted to assess the impact on healthcare quality, especially within hospitals and with regards to older people (Rantz et al. 2010, Fraser et al. 2013, among others), there is no conclusive or definite research  with regards to the provision of services for people with complex needs, nor how service providers are affected by the growing numbers of people with disabilities and increasing demands from healthcare regulators.

Much of the relevant research focuses on developing quality indicators to assess the quality of care and measure patient satisfaction with the service (Campbell 2007). One study (Stopper et al. 2011) mentions the “growing challenges” faced by national healthcare systems worldwide while trying to reconcile the interests of patients for high-quality medical care and those of payers for sustainable and affordable funding. The Care Quality Commission (CQC) State of Care report for 2011/2012 stipulates that “the increasing complexity of conditions and greater co-morbidities experienced by people are affecting the ability of providers to deliver quality person-centred care” (p. 6), while the State of Care report for 2014/2015 continues along the same lines: “The health and care system in England has come under increasing pressure in 2014/2015, driven by changing care needs and financial demands on all public services. Providers and staff are being asked to deliver significant efficiency savings, to meet the more complex needs of an older, changing population, while ensuring that the health and care system remains sustainable for the future.” (p. 5). More recent studies (Balding 2012) acknowledge that worldwide “the demand for quality has never been higher, and health care providers are struggling to meet the challenges of ever-increasing expectations and continuously-rising standards” (p. 1). In the UK, increasing numbers of people with complex needs, combined with a generally ageing population and stricter measures for quality control from healthcare regulators, have all contributed to ongoing pressure on care providers and the system of support services available for people with complex needs.

The current health and social care context has been marked by the recent investigations carried out at Mid Staffordshire NHS Trust, Winterbourne View Hospital and Orchid View, as well as the ensuing investigation reports (Francis 2013, Bubb 2014, Georgiou 2014). In each of the cases listed above, the  investigations were triggered by an increase in the number of unexplained fatalities and consequently focused on appalling  examples of poor care and neglect which constituted regular practice, especially in elderly care services. Serious concerns were raised with regards to nutrition and hydration, lack of dignity in care, as well as allegations of physical and psychological abuse.

The publication of the main investigation report (Francis 2013) marked a major turning point in the way in which health and social care services are reviewed in England. The report drew attention to a long list of factors which may be easily overlooked during a routine inspection , but which nevertheless can amount to serious incidents of neglect and abuse if no action is taken to correct what is not working well within the process of care provision. The Francis report also focused on the importance of documentation and it proffered zero tolerance towards any organisation providing services that do not comply with the fundamental standards of care. This triggered a much-needed revision of the Essential Standards of Quality and Care by the Care Quality Commission and a reconsideration of the role the regulator plays in supporting care providers with achieving these standards.

no need for author initials for in-text citations.

Consider a new paragraph here. This relates to your thesis. Is this definition different to that of others?

Is it one or the other? What do you mean “definite”?

Link this to the quality agenda (and your thesis).

Could replace with “These investigations”….

Suggest delete, use objective and academic language, don’t get too journalistic.

“routine CQC inspection” – be very precise in your language.