The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)

Table of Contents
1.Introduction
1.1About CIPOLD:
2.Deploying recommendation 14:
2.1Current concerns:
2.2Current findings:
3. CIPOLD going forward: Feasibility of recommendation 14
3.1 Future strategy and outcomes:
4. Probable Outcomes of Recommendation 14:
5. Conclusion:

Abstract

The report will try to look at the criticality of containing the premature deaths for people living with learning disabilities. This will look into the demographics, practices followed in terms of diagnosis, treatments and reasons of the deaths. It will try to evaluate applying a recommendation to CIPOLD and test its readiness factor and efficacy in the current situation.

Key words: CIPOLD, learning disabilities, premature deaths

1. Introduction

People with learning disabilities have the ability to live as long as any individual without any learning disabilities. As per the guidelines of NHS, every individual is to be provided free medical treatment with dignity, efficacy and equal diligence as per health requirements (Bane, G. et al., 2012). Hence, it is expected that all patients whose care is to be provided by NHS must be attended with best of the facilities available. However, surveys have shown that there are some loopholes in the health-care system, responsible for deteriorating the standard of health care. For instance, the death rate of patients with learning difficulties is almost three times the actual estimated number. This particular research carried on by CIPOLD has therefore explored the various reasons behind such high death rates among patients with learning disabilities. Based on the findings of the study, CIPOLD has come up with eighteen recommendations. This report will try to investigate and critically assess fourteenth recommendation in order to identify the importance of implementing strategies based on the recommendation. The recommendation is therefore noted to ensure avoidance of causes that actually lead to high rate of death among patients with learning deficiencies. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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1.1About CIPOLD:

Before, the fourteenth recommendation is investigated, it is essential to at first get an idea of CIPOLD. The objectives behind CIPOLD and activities associated to it. The acronym CIPOLD stands for Confidential Inquiry into Deaths of People with Learning Disabilities (Heslop, P. et al., 2013). The CIPOLD tender is awarded to University of Bristol. CIPOLD’s aim is to review care patterns that are received by people causing deaths and identify omissions or errors that have contributed to deaths and also good practice evidence (Heslop, P. et al., 2013). Heslop et al. (2013) added that the intention of CIPOLD is to serve with improved evidence with respect to best possible professional practice for range of social care and health practitioners, local authorities and NHS organizations.

With respect to importance of the review, the CIPOLD team has closely worked with established LDO or Learning Disabilities Observatory in order to agree to suitable definition of “learning disabilities” (Garbutt, 2010). The team has developed the current report in the backdrop of high death rate among people with learning deficiencies. There are about eighteen recommendations that have been developed based on the report. The current report will take up one of the recommendations and analyze the efficacy of the CIPOLD readiness to execute and the strategy to meet one of the recommendations. In this report the fourteenth recommendation has been considered analysis and investigation. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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2.Deploying recommendation 14:

The fourteenth recommendation as provided by CIPOLD is that advanced health and care planning has to be prioritised. The commissioning processes have to take this particular measure into account and be also flexible and responsive to change (Elliott et al. 2003). This particular recommendation directly focuses on provision of special health attention to patients with learning difficulties. If proper medical attention is given to patients with learning difficulties, they would certainly be living as long as patients without any kind of any kind of learning difficulties (Hall, 2010). In fact, this particular recommendation shows that currently there is absence of proper medical treatment that can be exclusively provided to learning disability patients.

Recommendation 14 highlights certain aspects of patients with learning disabilities and the extent to which treatment should be modified to suit their physical conditions. Despite the fact that under proper medical treatment patients with learning disabilities can live as long as normal patients, there is difference between physical health conditions of learning deficiency patients and normal patients. Patients with learning deficiencies are certainly not the ones who can easily communicate their pain or discomfort. Sheehy & Nind (2005) argued that many of them cannot easily comprehend the presence of disorder and determine ways to react to disorder. Hence, these patients require special attention. There is no doubt that treatment procedure becomes easy and more effective when patients have the ability to communicate. Health care officials are able to understand the various difficulties and symptoms experienced by patients when the patients are able to properly communicate their discomfort (Tuffrey-Wijne et al. 2008). In other words, diagnosis becomes effective as communication process is well established between the patient and medical practitioner. When this communication is absent, it becomes quite difficult for the health care professional to diagnose and eventually proceed on for effective treatment. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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The treatment procedure becomes all the more complex when patients with learning deficiencies suffer from lifelong disease. Since, the procedure becomes complex as different medical departments have to work closely with one another, good coordination becomes of the major treatment requirements (Williams et al. 2010). In fact, recommendations for advanced form of treatment of patients with learning disabilities are recommended to be implemented.

The recommendation also reflects a certain undertone of the casualness exhibited by health care professionals. Since the patients have certain disabilities often health professionals prioritise their tasks by focusing more on normal patients than the patients with disabilities. Thus, if the recommendation is considered, then this loophole that is current present in the health care system can be effectively rectified. By introducing measures based on the recommendation, it is expected that the medical practitioners will start considering their task of treating patients with severe or acute disabilities with seriousness and honesty. Bell et al. (2010) concluded that, it is expected that patients with learning disabilities suffering from long term disease are expected to receive enhanced treatment facilities. So basically, by prioritising advanced format of treatment the patients with learning disabilities with life term diseases are expected to receive advanced treatment provisions. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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The recommendation is therefore targeted at enhanced standard of treatment facilities of patients with learning disabilities. Bond. & Hurst (2010) opined that medical commission should consider the issue with importance as under NHS, every individual who is entitled for health care under health care should receive treatment as per the set standards.

2.1Current concerns:

The recommendation is also based on the very factors that are responsible for causing death, especially among individuals with learning deficiencies. In order to go deep into the issue, there are some terminologies that are to be cleared at first. From the report, it is identified that there are certain definite problems that exclusively cause death to patients with learning disabilities. Usually, there is no problem in identifying the fact that the patients with learning disabilities are suffering from certain discomfort. However, Brown et al. (2010) argued that it becomes quite challenging for medical practitioners during the process of investigation, diagnosing the disease and ultimately treating the diseases. Hence, there are mainly three major associated risks, mainly in the form of enhanced vulnerability of the patients with respect to absence of reasonable adjustments for easing their physical discomfort, lack of coordination during the process of treatment and lastly lack of advocacy of effective care. Here, in fact a critical aspect of current health care system comes to light.

Patients with learning disabilities are entitled to receive treatment facilities equal to common patients (Emerson & Baines, 2011). In the light of recommendation 14, it gets identified that patients with learning disabilities are supposed to receive equal standard of treatment, but to attain the standard the format of treatment should not necessarily be similar to that of normal patients. So, it is while providing equal treatments instead of not focusing on the concept of “same treatment”, the learning disability patients are often found to be not receiving reasonable adjustments and hence proper medical treatment facilities turn out to be inaccessible for them (House et al. 2007). “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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Presence of issues associated to reasonable adjustments further lead to premature deaths. In most cases, the premature deaths are avoidable deaths. That is with the provision of proper medical care and treatment facilities at the right time such deaths could have easily been avoided. In fact, as per the statistics goes in the report, in majority of cases the deaths of patients with learning disabilities are mostly caused due to premature deaths that in most cases can be categorized as premature deaths. McClimens et al. (2012) acknowledged that moreover, such deaths have been caused due to inadequate provision of medical attendance during critical health conditions. So, it is expected that by implementing measures with respect to the recommendations, the health care system will be able to come up with advanced system of medical facilities that will especially ensure adequate scope for reasonable adjustments in order to serve patients with learning disabilities health care during critical conditions. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

2.2Current findings:

The recommendations basically seek for a proactive plan which is identified to be missing currently in the health care sector. Watts (2010) mentioned that there is no denial that the general standards of medical treatment are as per the norms and conditions of NHS. However the level of pro-activeness has to be enhanced for ensuring effective treatment for patients with learning disabilities. A need for strong proactive treatment becomes all the more essential for such patients when they are diagnosed to be suffering from long term diseases. Hence, these patients are required to be provided with strong proactive medical treatment procedure. Moreover, in case of incidence of terminal diseases, special referral systems are to be established in order to identify the risks and effective management of crisis plan (Woodward & Halls, 2009).

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The recommendation 14 speaks about the priority in treating for people who could have been saved. The profile of the study has the above demographic segments in terms of segregating the condition of the patient (learning disabilities). This is a fulcrum for next discussion as the report also indicated that there are 92% adults (learning disabilities) who are registered with GPs. The recommendations are also made based on age of the patients with learning disabilities. Patients who are old and also suffer from learning disabilities often are common victims of dementia. So, it becomes important to implement strategies as per recommendation 14 in order to treat dementia affected patients. Dementia or terminal health conditions of patients with learning disabilities are to be addressed with the aid of on proper “end-of-life” planning. Expert patients programs as reasonable adjustment can be ensured for learning disability patients suffering from long term disorders. On considering the recommendation, it also becomes evident that strategies are to be developed for introducing training sessions for health care professionals. Owens et al. (2010) added that the concerned patients are not normal individuals as these patients have a deficiency in the form of learning disabilities. So, these patients with identified deficiencies are to be treated in a way that would exclusively suit the patients and the degree of the severity of the medical condition. The health care professionals must therefore be specially trained in order to ensure that they are able to provide right treatment to the patients. The categorisation of the patients in severe, acute, moderate will also help the health care workers to align their internal service delivery process in such a manner which will meet service benchmarks in the industry (Mizen & Cooper, 2012). These professionals have to depend on a more proactive form of treatment as this process of treatment will be as per diagnosis and requirements of the patients instead of simply reviewing health conditions of the patients based on current point of time. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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Recommendation 14 also addresses appropriate measures to be taken by commission authorities. The recommendation stresses on the to the fact that commissioners should ideally be able to additionally pay attention to various needs and requirements that are gradually changing for the purpose of supporting living environments. These measures are to be taken based on the recommendation as this will enable living providers to be able to move into extensive care for people who are living with multiple co-morbidities, increased needs of care and provision of required support for dying at home.
On investigating into recommendation 14, one aspect of treatment gets focused considerably. The end-of-life care is the concept that seems to attain prominence during the course of investigation of recommendation 14. Elliott et al. (2011) added that the “end-of-life care” concept comes into prominence when it is identified that majority of the deaths of patients with learning disabilities is due to emergence of problems or issues related to treatment procedures associated to end-of-life care. It is identified that when a comparison is made between patients with learning disabilities and patients without it, it becomes evident that access required treatments like palliative care or receiving of opioid analgesia were identified to be must less for patients with learning disabilities. In majority of cases, such deaths occur due to unplanned treatment procedure or existence of poorly managed or uncoordinated procedures (Bell et al. 2010). However, steps are now being taken as initiatives to bring improvements in end of life care for people having learning disabilities. For instance, the programme called ‘Help the Hospices’ has been conducted. The program is focused on widening the scope of accessibility to palliative care for patients with learning deficiencies. The existence of ‘National End of Life Care Program’ shows that some positive steps are being taken in context of provision of better standard of treatment for patients with learning difficulties (Heslop et al. 2013). In other words, the recommendation is directing towards dissemination of tasks of health care professionals at a broader level and best possible health care practices. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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3. CIPOLD going forward: Feasibility of recommendation 14

The recommended suggestions that have been provided by CIPOLD, especially recommendation 14 has been found to be developed based on the findings of the report. The report specifically stresses on to the fact that patients with learning difficulties are to be provided with advanced treatment facilities as these individuals have deficiencies that required reasonable adjustment procedures for the purpose of providing these patients with treatment of standard equal to those for patients with learning deficiencies. The report has indeed focused on the cause of deaths and analysed regarding why these deaths can be considered to be avoidable. The table below in the report indicates cancer that can be contained, while avoidable diseases are heart/circulatory and respiratory disorders.

The fact that the current health care system is indifferent to the sufferings of patients with learning disabilities comes up when it is identified that majority of deaths occur due to lack of proper treatment facilities that would exclusively help individuals with learning difficulties to cope up with the physical ailment. Especially, it has been noticed that there is gross negligence when it comes to the context of providing proactive treatment for patients with learning difficulties suffering from long term terminal disease (Heslop et al. 2013). CIPOLD in order to justify and implement recommendation 14, needs to be sure about the appropriate and up to date health care interventions that are available for patients with learning disabilities. This is a critical factor that goes a long way in improving the health care services provided. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

3.1 Future strategy and outcomes:

Looking at it criticality, the recommendation focuses mainly on development of health care professionals as experts in dealing with the patients rather than recommending for technological advancements. In other words, the need for enhanced standard of treatment is to be ensured with respect to the standard of care provided by the health care professionals (Mizen & Cooper, 2012). Often, it becomes quite tough to provide due standard of treatment when despite having technologically advanced clinical machines, treatment process the patients are not able to receive proper treatment due to lack of coordination among health care professionals.

So, the recommendation stresses more on providing training to professionals who would then learn to properly communicate with patients and other fellow professionals. However, in order to ensure staff treatment it becomes very essential to ensure that such facilities are commissioned at the right time with the right amount. So, the recommendations also touch on to the fact that improvements are also required to be brought about within the operational system of health care. The improvements are required for sanctioning of funds at the right time followed by ensuring a highly efficient management staff that would be responsible for implementing the recommended strategy with great efficacy. A subsequent report on developing the recommendations provided in this report can be carried forward for the next issue. CIPOLD on the other hand, also needs to develop codes for aligning health care systems and procedures to meet the service delivery process for the graded patients (mild, moderate, severe, profound) as per severity of the medical condition. McClimens et al. (2012) suggested that it needs to study the best practices across world and learn to address the gaps in their current system of health care which has several shortcomings. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

4. Probable Outcomes of Recommendation 14:

Although the health care service has been able to serve standard health care for majority of the population, it is yet to offer quality service to patients with deficiencies like learning difficulties. So, as a professional defining service quality in terms of treatment procedures, tests, diagnosis level, CIPOLD needs to keep in place appropriate systems to tackle the issue. Prioritising at all levels of the treatment process means redesigning the service delivery process with lesser TAT (turn around time) and developing a failsafe model. The report seemed good for classifying the patient profiles while much of for the recommendation 14 remains unaddressed. The need to create a process driven health care intervention, treatment process directly resolves CIPOLD’s aim and objectives. This can be done by simulating the ‘as is’ health care process in CIPOLD and reengineering to plug in gaps in service delivery process in terms of time and approach to treatment process. Emerson. & Baines (2011) concluded that the challenge for the recommendation however, given the existing systems of treatment process, is for the patients with learning disabilities itself. However, the aim to reduce the error percentage in health care services in CIPOLD, specifically for patients with learning disabilities can be mapped and a standardised option with time based solution can be done.

Prioritising in treatment, testing and resorting to special support activities which require repetition can be automated while for communication with the actors engaged to aid a patient therefore is a critical challenge. Quality in health is a challenging domain and to prioritise the severity of diseases, and attending the process of care giving will need the synergy of systems, IT, support of CIPOLD GPs and health care workers. Tuffrey-Wijne et al. (2008) suggested that the health care interventions need to be applied on case to case basis approach will enable to increase the quality of service. So emphasis on patients with heart and circulatory disorders, along with cancer is mandatory for COPOLD to design a prioritised patient treatment care process. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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5. Conclusion:

There should be conscious efforts of the existing flagging system of indication of severity after the diagnosis is done. Woodward & Halls (2009) added that this can be made more effective as during treatment process for avoidable deaths is a communicative factor between teams of GPs, nurses, paramedical staff holds prime importance. Enabling the good quality health care system towards foolproof communication to aid appropriate health interventions and treatment process the use of centralised hospital management IT software is the only key towards managing and prioritising the tasks (Williams et al. 2010). It will reduce the TAT in many ways that will increase the qualitative index of health care service drastically. This will enable better decisions at those critical moment for patients in CIPOLD where emergency and severity will be a default service process. Going forward benchmarking the process will enable to standardise and replicate in other departments in CIPOLD. These agendas therefore will help to sharpen the skills and output of CIPOLD, meeting its objectives to reduce errors in health care service process. “The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)”.

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