Learning Problems: Make appropriate adjustments in the hospital - care times

Appropriate adaptation of care for people with learning difficulties treated in hospital is not only easy, but benefits all stak...

Appropriate adaptation of care for people with learning difficulties treated in hospital is not only easy, but benefits all stakeholders. Two case studies are used in this article to demonstrate the benefits.

Summary

It can be difficult for anyone to be in the hospital, but it is especially difficult for people with learning difficulties. Compared to the general population, this group of patients is more likely to need and use health services, but also has worse health experiences and poorer health outcomes (including preventable deaths)). Adequate (and not necessarily expensive) adjustments to hospital care for people with learning difficulties are not only feasible and a legal obligation under the Equality Act 2010, but also benefit all those affected. and especially for people with learning difficulties. This article provides best practice examples of reasonable accommodation that can be provided at the hospital, as well as two case studies demonstrating the benefits of reasonable accommodation.

Date: Phillips L (2019) Learning Problems: Make the necessary adjustments in the hospital. Nursing time [online]; 115: 10, 38? 42nd

Author: Linda Phillips is a Disability Nurse at the Hywel Dda University Health Council.

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introduction

People with learning difficulties are entitled to the same medical and nursing care as the general population. However, they often face barriers to medical care, which can have worse consequences, including avoidable death.

The hospital can be a difficult time for all people, but even more difficult for people with learning difficulties. A person with little knowledge may not have understood the letter of appointment, so they do not know where, on what day and what time they should go. You may not be able to read the signs and land in the hospital. If the person has difficulty understanding the information, they may not know what is expected of them or why they need treatment, which may lead to a lack of compliance. If they also have communication problems, they may not be able to say that they are hurt. Some people with autism also have sensory processing disorders, which means that light, sounds, smells and textures can put a lot of strain on them.

Nurses must be aware of their responsibility to provide adequate care for people with learning disabilities to ensure that their health needs are adequately met. This article analyzes the appropriate adjustments that can be made in the hospital and presents two real case studies.

Difficulties in learning

The most commonly used definition of learning disabilities in the UK comes from Valuing People , the government's official 2001 document on health and social services for people with learning disabilities (Department of Health). 2001). Explain that the learning disability is defined as follows:

• The presence of a significantly limited ability to understand new or complex information and acquire new skills (impaired intelligence);
• Limited ability to self-employment (changed social functioning);
• It began before adulthood and had a lasting effect on the development.

In the United Kingdom there are 1.4 million people with learning difficulties, which is about 2% of the population in general (Mencap, 2018). The nature of their learning difficulties varies greatly and affects the type of support they may need. Learning disabilities can vary from easy (the person can live independently with a minimum of support) to significant (the person can not handle it autonomously and is completely dependent on the caregiver). Many people will fall into these two categories and need support in some areas of their lives, for example to gain access to health services.

People with learning difficulties are more likely than the general population to be confronted with multiple comorbidities and chronic illnesses. Kinnear et al. (2018) found that 98.7% of people with learning difficulties have two or more diagnoses in addition to their learning difficulties. This means that they are more likely to visit and be admitted to general acute care hospitals.

It is expected that the number of people with learning difficulties in the UK will continue to increase and learning difficulties become more complex (Michael, 2008). This is because people with learning difficulties live longer and more young people with complex disabilities survive into adulthood. The demand for general and specialized health services for people with learning difficulties, their families and their caregivers is expected to increase significantly in the future (Gates, 2011).

Worst health outcomes

Reports have consistently highlighted bad experiences and poor health outcomes, including premature and preventable deaths, persons with learning disabilities who come into contact with the general hospital Learning Disability Mortality (LeDeR), 2018, Heslop et al., 2013, Mencap, 2012, Michael , 2008, Mencap, 2007). It has recently been estimated that 1,200 people with learning difficulties die each year from preventable death in the NHS (Mencap, 2018), and the LeDeR program (2018) found that men and women on average had learning disabilities in the general population 20 years and 27 years younger than men and women. Many of these deaths are considered preventable and / or premature.

Heslop et al. (2013) identified the central problem as delays in care, especially in the context of research, diagnosis and treatment. However, other factors make people with learning difficulties more susceptible to access to hospital care, including:

• Lack of coordination between roads and health care providers;
• Lack of effective defense;
• Reasonable adjustments are missing.

Reasonable adjustments

The nurses are responsible for making appropriate adjustments to care for people with learning disabilities. Equal treatment for people with learning difficulties does not necessarily mean that they should receive exactly the same service as any other person (some therefore prefer the term "equal treatment"). In order to obtain a positive result, the person may need additional and / or alternative support methods agreed with her and / or her family / caregivers (Ministry of Health, Human Services and Public Safety, 2010). These additional and alternative support methods are referred to as "reasonable adjustments."

Adequate adjustments are a legal requirement under the Equality Act 2010 that "medical and social care providers must make reasonable adjustments to eliminate any physical or other obstacles that may make the task more difficult." "Persons with disabilities who fully use their services Encourage or Prevent Scope ... Accommodation should, where possible, provide access to services for people with disabilities as it would to other members of the public. "Under this law, public sector organizations, including the NHS, need to understand their approach or delivery of services to ensure fair supply.

Appropriate adjustments can be made at the service level or at the individual level. Service level customizations not only include physically changing the environment to improve access (eg, ramps, wider doors, or accessible signage), but also changing policies and procedures. to consider the needs of users. People with learning difficulties

Adjustments at an individual level are the changes that are required for a particular person at a particular time. Nurses play an important role in determining the nature of these adjustments. They need to be proactive, responsive and flexible, so that each intervention takes full account of the needs of the individual and can deliver the best possible health outcomes for that person.

Identify the needs of the people.

It is important that hospital nurses determine as soon as possible whether a patient has a learning disability and needs adequate accommodation. If a nurse suspects that she has a learning disability, she should:

• Evaluation of the communication and / or support needs of the person;
• Make sure they understand the information and remember.

Some people with learning difficulties, such as those with Down syndrome, are easy to identify. People with severe learning disabilities may be accompanied by caregivers or the information in the reference notes, or the patient may alert the staff that a patient has a learning disability. In general, it is harder to identify people with mild learning disabilities.

In order to determine what appropriate adjustments are needed, all possible sources of information should be examined. This includes:

• The patient: We can ask them what their needs are and what has helped them in the past.
• Patient's caregiver: These individuals have a long history of patient care and are experts in their care. Family members and caregivers must make an important and unique contribution that must be appreciated, recognized, heard and supported. Nurses should clarify with the patient whether it is permissible to speak with their caregivers.
• Association nurse for learning disabled hospitals: This function is available in many hospitals.

hospital pass

The hospital passport the patient may already have is another useful source of information. It contains important information that helps healthcare professionals to learn about their communication, diagnosis and treatment. All healthcare professionals in contact with the patient can access the hospital passport (Public Health Wales, 2014). Generally based on a traffic light system, he will have:

• Red area: information that the service should know about the person, including personal data, contact details and health profile;
• Orange area: information that the person wants to communicate to the service, eg. B. communication, personal care, mobility, vision and hearing needs;
• Green area: Information about what the person would like to have during their stay in the hospital to make sure that they are more comfortable, including their likes, likes and dislikes.

The green information can also be used to hold conversations, build rapport and build trust.

A special management plan can be attached to the hospital passport. For example, people with complex needs are given clues about what can trigger a particular behavior and strategies to control that behavior and ensure everyone's safety.

Finally, the hospital passport may also include a special pain assessment, such as the Disability Assessment Tool for Disability (DisDAT). Caregivers have completed the Patient DisDAT tool before shooting and explain what the person looks and feels like when they are not in pain, and what it looks like and how it behaves when it hurts.

Examples of meaningful adjustments.

Reasonable adjustments should focus on the individual and meet his specific needs. The goal is to overcome barriers to medical care by handling things differently (Public Health England, 2016). Adjustments do not have to be expensive and can be done by anyone who is involved in personal hygiene.

Appropriate adjustments may include:

• Use a simpler language and avoid abbreviations and jargon.
• Use communication aids such as symbols Makaton , Widgit symbols or speeches Mats . Talking Mats is an interactive resource that uses symbols to help people with communication difficulties understand and discuss topics they discuss, effectively express their opinions, and clarify what should be involved in decision-making. This is especially useful to get approval for the treatment.
• Plan additional time for appointments.
• Provide written information in an accessible and easy-to-read format and use symbols to reinforce the written word (as shown in the Accessible Summary of this article in Figure 1).
• Provide a quiet waiting area
• Use a pager so that patients can wait at the place of their choice until they are ready to be seen.
• Invite patients to make a pre-visit to familiarize themselves with the environment and know what to expect.
• Make appointments at the beginning or end of clinics when the environment is less busy.
• Make sure that patients come first to reduce waiting times.
• Provide meals or accommodation for the caregivers
• Organization of several procedures under general anesthesia.

These are examples of meaningful adjustments in practice. The list is not complete.

case studies

Table 1 describes the case of a patient with a developmental disorder who has been admitted for a planned operation. The appropriate adjustments to the care of this person were as follows:

• Visit before entry;
• Hospital Pass;
• Communication book;
• Be the first on the theater list;
• Have a nurse in the anesthesia and recovery room ready.

Box 1. Case study 1

Margaret Davies * is 40 years old. He has Down syndrome and mild to moderate mental retardation. She lives with three other women in Carmarthenshire and has a supportive housing plan that provides 24-hour assistance to caregivers. She works five days a week in a café run by people with learning difficulties.

Miss Davies has had ear problems for many years and her hearing is severely affected by earwax. Several visits to the family doctor could not eliminate him because Mrs. Davies could not tolerate the procedure. To reduce his hearing loss, he was consulted by a speech pathologist and developed other communication methods. It was recommended to remove ear wax under general anesthesia in the hospital.

The hospitalized nurse first noticed Ms. Davies on a phone call from the director, explaining that Ms. Davies had no experience with the clinic. Hospital and was very worried. The nurse arranged a visit to the operating room at a convenient time for the staff to show Miss Davies.

There were key persons involved in the care of Miss Davies, as well as her speech therapist, who took pictures of the room, the staff, the patient bed, and procedures such as blood pressure and temperature. These images were collected in a communications booklet used by their caregivers to reassure Miss Davies in the days before she was shot.

During the visit, Ms. Davies received a passport at the hospital. She got to know the staff who would be present on the day of the operation, who underwent some interventions and even tried to wear a dress. Margaret and her supervisor were able to ask questions, including practical questions that could be clarified in advance.

On the day of her intervention, the learning disability nurse met with Ms. Davies and her caregiver at the ward. The staff came back and the communication book was used to explain what would happen. She seemed happy and excited to be in the hospital, which was a surprise to those who knew her. She was the first on the list who did not have to wait. She had a bit of tears and fear when she went to the theater, but she was accompanied by her caregiver and the learning disability nurse, who calmed her until she was drugged. Her caregiver waited in the recovery room from the beginning to support her. Back in the living room, she was happy and relaxed listening to her favorite music on her CD player. She was released from her home the same day.

The surgery removed earwax and subsequent hearing tests showed that Miss Davies' hearing was back to normal. The community nurse with learning difficulties regularly helps her to go to the nursing assistant to avoid extra income.

In general, the inclusion of Miss Davies was a success and the potential difficulties were avoided by appropriate adjustments to her care. Everyone benefited: Miss Davies returned to her hearing, her supervisors were prepared for the practice of admission, and the staff in the room understood their needs and could adjust the procedures to meet them.

* Margaret Davies agreed that her story be shared so that everyone understands how sound precautions can improve hospital care. Your name was used with your consent.

Box 2 describes the appropriate adjustments to care for my daughter Nia, who suffers from severe learning difficulties and complex health problems (Down syndrome, attention deficit hyperactivity disorder, autism, heart problems). and respiratory tract). Show how small changes can make a big difference. The appropriate adjustments made to your care were:

• Hospital Pass;
• Utility room;
• Allow both parents to stay;
• Provide a low bed;
• Several procedures under anesthesia.

Box 2. Case study 2

My daughter Nia * had her heart first operated on at 19 months in 2005. It was extremely difficult and emotional to be in the hospital with a very poor baby. My husband and I stayed home because only one of us had the right to be by his bedside at night. Anyone sleeping in the hospital has taken a pager to be contacted in the worst case, which would lead to greater anxiety. There was a clear lack of awareness of the learning disability in the neighborhood. A well-meaning nurse told us not to worry because "they do not feel pain like other children."

In 2013, Nia underwent another heart surgery in the same hospital, but this time the experience was completely different. Before the admission, we receive an online evaluation of the hospital traffic light. It contains detailed information relevant to the hospital staff, including a brief history of how Nia communicates, what she needs to eat and drink, how she sleeps, how she takes her medication, what she likes and what she does not like, her favorite toy etc.

We then received a call from the liaison secretary for people with learning difficulties. We talked a lot about Nia's needs and how we can best support her while she was in the hospital. Nia was much older now and her behavior was much harder to handle due to ADHD and autism. He had sleep problems and was unaware of the danger. At home, I had a single bed with Wiegeseiten, so it does not go out. This could not be provided by the hospital; However, Nia would have a room next door so as not to disturb other children in the room. My husband and I could stay with her all night, and a bed matching the floor height would be taken from another hospital. During the discussion, I also explained that Nia needed more anesthetics for a dental exam and a hearing test. The Learning Disability Liaison Nurse organizes for the dentist and the audiologist that Nia is being treated in the same anesthesia as for cardiac surgery.

These reasonable adjustments made a big difference. The staff were aware of Nia's needs and could plan the best way to help her. I did not have to repeat Nia's medical history for all healthcare professionals (and revive the traumatic memories she usually caused). Having a room next door saved us some stress, as we did not have to explain to other children and parents why Nia was making strange noises or behaving like this and did not stop them from sleeping the first few hours.

If we can both be with Nia, we can share responsibility for care and provide emotional support. It also made it easier for nurses to help Nia with personal care, which could be difficult not only for Nia (who has trouble keeping people in her personal environment, especially people she does not know well). ), but also for nurses. (after receiving her behavior).

The bed was not exactly what Nia needed, but it was a good compromise.

Another useful adaptation was to perform the dental examination and the hearing test simultaneously with the heart surgery. The cardiac surgeon successfully repaired lung stenosis by balloon dilatation and stent insertion. The dentist then examined Nia's teeth and applied a coat of varnish, and the audiologist performed the hearing test. This avoids two more hospitalizations and the risk of additional general anesthesia due to Nia.

* The name was used with the consent of the patient's parents.

Continuous monitoring

As with all care plans, appropriate arrangements must be monitored and evaluated. People's needs change over time, and the type of adaptation required will change as well. It is important to reassess the needs of individuals each time they are taken and to adjust the appropriate adjustments accordingly. The LeDeR Program Report (2018) states: "Suppliers must clearly identify those who need appropriate adjustments, record the necessary adjustments, and regularly review their availability."

At Hywel Dda University's Health Board, nurses with learning disabilities capture the appropriate adjustments and monitor their use. These data are submitted biannually to the Welsh Government to inform a national review of appropriate adjustments.

recommendations

It has been shown that appropriate adjustments can not only be made but also highly valued and can support safe and effective personal care (MacArthur et al., 2015). To prevent avoidable deaths among people with learning difficulties, the LeDeR program (2018) recommends:

• The use, registration and verification of reasonable accommodation;
• Compulsory training on learning difficulties for all employees.

graduation

Adequate adaptations can benefit others and have a positive impact on the community in general. It is a good practice and an added value to the service for everyone.

Important points

• In hospital, people with learning difficulties are more likely to have poor results compared to the general population, including avoidable deaths.
• Appropriate adjustments are additional and / or alternative methods to help people with learning difficulties achieve good results.
• Appropriate adjustments are allowed under the Equality Act 2010
• The hospital passport is an example of reasonable accommodation.
• Through appropriate adjustments, the service is upgraded for all involved

references

Department of Health (2001) Appreciating People: A New Learning Strategy for Learning Disabilities in the 21st Century.

Ministry of Health, Social Services and Public Safety (2010) Guidelines for caring for people with learning disabilities in hospitals .

Gates B (2011) The Valued People Project: User Opinions on Disabilities in Nursing Learning. British Journal of Nursing ; 20: 1, 15? 21st

Heslop P et al. (2013) Confidential investigation on premature death of people with learning difficulties (CIPOLD). final report

Kinnear D et al. (2018) Prevalence of physical ailments and multimorbidity in a cohort of adults with and without mental disability with and without Down syndrome: a cross-sectional study. BMJ open ; 8: e018292.

Program for the Review of Mortality from Learning Disabilities (LeDeR) (2018), Annual Report, December 2017 .

MacArthur J et al. (2015) Make appropriate and achievable adjustments: Contributions of learning disability liaisons in Doing It Right for people with learning disabilities receiving general hospital care. Journal of Advanced Nursing ; 71: 7, 1552? 1,563th

Mencap (2018) Treat me well: Simple adjustments make the difference .

Mencap (2012) Death by indifference: 74 deaths and count: a progress report 5 years later .

Mencap (2007) Death by indifference: According to the motto "Treat me well!" report

Michael J (2008) Medical Care for All: An Independent Research Report on Access to Medical Care for People with Learning Disabilities .

Public Health England (2016) Reasonable adjustments: a legal obligation .

Public Health Wales (2014) Improving general hospital care for patients with learning difficulties .