This competency includes almost all neurological and neuromuscular diseases because anyone who has long-term problems after an acute illness will inevitably join this group of patients. This competency shares some general neurological knowledge and skills associated with the previous competency in acute neurological conditions for the same reason, but the emphasis is quite different. This competency shares much with other competencies where the patient caseload is mainly people with long-term conditions; the focus should be on social integration, improving self-directed management, and, for some patients, ensuring advanced care planning. Many patients with a chronic neurological condition will die early from it. Rehabilitation services need palliative care expertise, which may require a shared responsibility for the patient. Further, rehabilitation services are the lead speciality for anyone with a prolonged disorder of consciousness, which has its own ethical, legal, and clinical challenges.
F-29 Chronic neurological conditions
Table of Contents
The competency - chronic neurological conditions
The competency of the rehabilitation expert is “Able to assess rehabilitation needs of, give rehabilitation advice about, and take rehabilitation responsibility for a patient with a long-term neurological condition from its onset or when it became long-term.” A description of the indicators and a list of some relevant references can be downloaded.
Introduction
Most patients with a significant degree of disability requiring higher levels of care, often in care homes, have a neurological or psychiatric disorder. The evidence shows that people with long-standing disability can benefit from rehabilitation input, both when in a stable state after an acute-onset disability and when they have a progressive disease. Unfortunately, many patients cannot access expert rehabilitation and even worse, many healthcare professionals are unaware that rehabilitation can help some patients. The rehabilitation fraternity must identify patients who might benefit and, in so doing, educate both patients and colleagues about the potential.
The challenges associated with the rehabilitation of people with chronic neurological conditions are enormous:
- The number of patients greatly exceeds the capacity of services,
- The needs cover a considerable range, and each patient’s needs are different, so specific programmes and pathways are an inappropriate way to manage the group;
- Most patients have some impairment of cognition and drive, increasing the need for a more proactive management style;
- The resources needed, such as care, equipment, and specialised treatments, exceed what is available. The seventh competency, obtaining rehabilitation funding, is essential.
Another known but unresolved challenge concerns the handover of responsibility for patients leaving paediatric services; NICE have a quality standard, but the practice has yet to achieve the standard.
Neurological knowledge.
It is dangerous to assume the diagnosis given on referral or by the patient is correct. It is unnecessary to investigate every patient’s disease diagnosis. Instead, a rehabilitation expert should learn to recognise clinical features atypical for the patient’s diagnosis. The best way to achieve this is to take a history of the disease onset and course from each new patient. One will rapidly acquire insight into the most common neurological disorders.
Becoming familiar with the more unusual neurological phenomena such as unilateral visuospatial neglect, anosognosia, or confabulation requires two things. First, an innate curiosity about patient experiences, constantly asking them to describe them and exploring the details. Second, read about each new phenomenon you meet, and then look for it in suitable patients. Reading without clinical exposure will be like learning statistics from a book, easily forgotten within a week.
A better understanding of the anatomical, physiological, and psychological aspects of neurology is also best achieved by reading about and researching problems encountered in a patient. Moreover, patients and other team members will ask pertinent questions that one can investigate.
Rare diseases are a particular challenge; there are thousands. There are two valuable resources:
Adaptation
Adaptation is central to rehabilitation. Patients with long-standing disabilities often discover ways to overcome their problems that their professional advisors may not know. This is particularly the case for people with slowly progressive disorders. Again, curiosity may increase your expertise – and help others.
Adaptation to chronic neurological conditions
People with a right visual field loss often are unaware of it. However, a few notice grave difficulties in reading because, when reading, one looks ahead along the sentence to the right. The brain cannot direct the saccadic eye movement to the following phrase if the field is absent.
A patient I saw once mentioned this problem, saying he had overcome it. I asked how. He looked at the letter I had in front of me (he was sitting opposite) and read it out quickly and correctly. He now reads books or other documents by turning the text upside down to look into the sound left visual field when seeking the following phrase.
Patients with muscular dystrophy are traditionally seen in neurology. This is appropriate because, in many dystrophies, the genetic basis also causes cognitive and other brain problems.
Muscular dystrophies are progressive disorders, often relatively slow. Consequently, the patient slowly and unconsciously adapts. Sometimes, the person may first present long after the first symptoms appear. Frequently, the way they undertake functional activities is characteristically different; the Gower’s sign in children with Duchenne’s muscular dystrophy is one example.
Advance care planning
Many people with a chronic neurological condition will die from it, and often, the underlying disease is progressive, and one can reasonably anticipate some of the medical problems that will arise. For example, many people with Huntington’s disease will eventually develop difficulties in feeding and eating, and the option of having a gastrostomy tube will have to be considered.
Under these circumstances, it is vital to raise the issue well before the need arises and while the person has the mental capacity to decide. Increasingly, information leaflets from voluntary organisations supporting people with neurological disorders mention problems that may occur, and these can be used to raise the issue. Furthermore, clinical specialists in the disease, funded by the charity or the NHS, are usually well aware of the problems and trained to raise them.
If raised early, the patient and their family and friends can consider and discuss what the patient would want if the problem arises. If they decide, this should be documented with the understanding that any decision can be reconsidered and revised.
Further information on advance care planning is widely available. For example, NHS England has published Universal Principles for Advance Care Planning, which many national organisations support. For an alternative viewpoint, Daniel Sulmasy suggests reading “The Love Song of J Alfred Prufrock”; he commends humanity and empathy and that they must accompany any more formal bureaucratic, form-based approach.
Legal and ethical issues.
Many people with a chronic neurological condition will have impaired cognition, often sufficient to cause loss of the mental capacity to make decisions; many people will have significant emotional problems; and many will be vulnerable because of their physical, emotional, or cognitive difficulties. Added to these three patient-related issues, many patients will experience financial difficulties, problems with housing, and difficulties obtaining the care they need.
Consequently, anyone whose practice includes patients with chronic neurological conditions must be an expert at managing complex, multifactorial, challenging situations, knowing the law, mainly the Mental Capacity Act 2005, being familiar with safeguarding policies for vulnerable adults or children and analysing ethical issues.
Rehabilitation services are now usually responsible for patients with a prolonged disorder of consciousness. The main requirement of clinical experts is to be familiar with the guidance on assessing best interests, especially concerning the withdrawal of clinically assisted nutrition and hydration (CANH). I have written about the approach to this group of patients and the related issue of deemed unavailable treatments.
A second area of difficulty arises in people who take risks, such as eating food against advice or attempting to walk when deemed unsafe. Sometimes, these matters are approached through the best interests process, but usually, one must approach them as risks that need management. If the person is conscious and able to take food or get up to walk, the Mental Capacity Act does not allow forcible restriction, so capacity is irrelevant.
Conclusion
Providing rehabilitation to patients with chronic neurological conditions draws on every area of rehabilitation expertise. It additionally requires a good understanding of normal neurological functioning and how it is disturbed by neurological disorders. Rehabilitation services will see many more people with rare neurological diseases or with unusual and rare neurological phenomena than most general neurology services; this means that rehabilitation staff must be able to recognise clinical presentations and then look up further details. It also means that one is always learning. I have been seeing patients with neurological conditions since 1978, and I am still seeing diseases and neurological phenomena that I have not seen before.
