Stroke care

CARE AT HOME

If the stroke was very mild, it may be possible to look after someone at home. For example, people already in a nursing home will be able to get appropriate nursing care. General practitioners can arrange many tests from the sur­gery (for example, blood tests and an ECG), but other tests need a hospital visit.

Specialised stroke clinics have now been developed in many areas, and these often provide immediate access, so that people who have had a mild stroke and did not need urgent medical admission could be seen within a few days. One-stop clinics are currently being developed where all the tests, including a brain scan, are done on the same visit. The hospital doctor can then write a report to the GP, providing advice on how to manage the stroke. In many parts of the coun­try, specialists for elderly people are able to visit elderly frail patients at home and advise on stroke management.

In some situations, GPs may be able to look after people with a stroke without involving the hospital. This involves providing regular assessment and monitoring through community nurses and home visits. If the stroke is improving rapidly, some people may merely need increased help for a week or two, for example, a home help to do the shopping and cleaning for a while.

Outpatient stroke care is the subject of much debate and there will probably be many changes in the next few years. Doctors are not sure whether care at home is feasi­ble for more than a small number of people with strokes and further research will be needed to tell whether care at home is as good as care in a hospital stroke unit.

HOSPITAL CARE: THE STROKE TEAM

Most people having a stroke in the UK are admitted to hospital, and the first few days after admission are very busy. The patient is assigned a stroke team, a group of people who work together to ensure that the patient receives the relevant treatment and care. The doctors assess the severity of the stroke and organise tests. The nursing team make sure that the patient is comfortable and help with activities that are suddenly difficult. Physiotherapists, speech and language therapists and occupational therapists also start their assessments to see what help each patient needs.

The doctors

Stroke medicine is a fairly new hospital specialty. The stroke spe­cialist may be a geriatrician (a con­sultant for elderly people), a general physician or a neurologist (a consultant specialising in prob­lems affecting the brain and nervous system). The hospital consultant usually works in a team with other consultants and junior doctors. The doctor in charge will be the consultant or the general practitioner (for those at home or in a GP cottage hospital). The doctor’s role is to diagnose the stroke, organise the necessary tests and deal with medical complications. In addition, the doctor is usually the team leader.

The nurses

The nursing staff provide the 24­hour care needed during the hospi­tal stay. Nurses work in teams of fully qualified nurses (staff nurses), student nurses and care assistants (people who assist with patient care under the supervision of the staff nurses). The nurse in charge is now usually referred to as the Charge Nurse. In hospitals, there will always be nurses on the ward to help. The nursing staff not only help with everyday activities such as washing, dressing and eating, but are also a source of information, advice and support. In many stroke units, they continue the work of the therapists on the ward.

The physiotherapist

The physiotherapy team concen­trates on movement, posture and protection of vulnerable limbs, starting with basic abilities. Can the patient sit without support? If not, the therapist will advise the stroke team on the best position­ing of the paralysed arms and legs, to avoid injuries and shoulder problems. As the person recovers, and gets stronger with therapy, the physiotherapist will concentrate on more complicated movements. The work of physiotherapists is unique to every patient and is based on a thorough assessment and an individualised treatment regimen to restore normal movements. Great skill is needed to move people after a stroke and the physiotherapist works closely with the nursing staff to advise on the best method of moving people from beds to chairs and other ‘transfers’. Some simple pieces of equipment such as a plinth, paral­lel rails and walking aids are need­ed and many therapists work in a gym as well as on the ward.

The occupational therapist

The word ‘occupation’ refers to the ‘skill of doing’ many day-to­day tasks and activities that every­one takes for granted. These are often affected by a stroke and include managing to use the toilet, washing (and shaving), dressing, grooming (for example, combing hair), and making meals and drinks. These activities of daily liv­ing allow independence but per­haps not much quality of life. The extended activities of daily living allow a greater range of skills, and include using the telephone, shop­ping, leisure and hobbies, and using public transport and driving. Unfortunately, there is often little opportunity to work on these extended activities in the hospital system. In some areas, outpatient or domiciliary therapy can help people perform these more complicated tasks.

The speech and language therapist

The speech therapist will assess communication and swallowing problems. This assessment can be very useful in adding to the neuro­logical assessment of the stroke. Speech therapists have expanded their role in stroke care by becom­ing experts in the assessment of the swallowing mechanism. If swallowing is abnormal, they can try different types of foods to check the safest type of food for the patient. It is useful for them to continue to assess patients after a stroke, so that their diet can be modified as the stroke improves.
The more traditional role of the speech therapist is helping people to communicate if their speech and language have been affected by medical problems. People can be taught to say words more care­fully so that they can be under­stood. This is often useful if the speech is very slurred (a problem called dysarthria). If the speech is very muddled after a stroke, this may mean that the person has lost the meaning of words or phrases, or cannot understand them. This is called dysphasia. An example of dysphasic speech is ‘My cup is very thratch’; some words are cor­rect but are not the right ones, other words appear to be non­sense. In this example, the person was trying to tell a doctor about his sore throat. Speech therapists can help patients to cope with these problems. Various charts and pictures can help with every­day communication with nursing staff and carers.

Social worker

A stroke can affect all aspects of life, and there are many services and financial resources available. The social worker is the expert in the resources available locally and the types of financial benefits that you might be able to claim. He or she is therefore a vital part of the stroke team when the time is right to plan a discharge back home, or when alternatives have to be considered. Some people may manage with a home help twice a week, whereas others may need a complex package of care, including community nurses, carers visiting four times a day and day care in stroke clubs. Many services are now means tested (the cost depends on the patient’s financial situation). If the patient has sufficient resources, he or she may need to contribute financially to the care; if not, the local council social services department will be responsible. This can be a very complicated area indeed, and the social worker’s role is crucial in planning a successful discharge from the hospital.

Team work

Rehabilitation is focused on individual patients. The team will get to know an individual’s needs, aspirations and family circumstances. It usually meets each week and every team member reports to the group. The team considers whether people are achieving their goals and the likely outcome is predicted. Most rehabilitation teams continue to work with patients until they are fit to return home.
Unfortunately, some people do not recover enough to get back home, even with maximum care in the community. When this looks likely, it is important for the hospi­tal team to discuss this with the patient and their family (or main carers). Complicated or difficult situations sometimes need to be discussed at meetings attended by the patient, their family and the stroke team (these are sometimes called family conferences). The team can hear the detailed wishes of the family, and the family can be updated on any progress.

THE FIRST FEW DAYS

Getting comfortable and protecting your body

It is very easy for patients to hurt themselves shortly after a stroke. Their muscles are often weak and their muscles and tendons are easily damaged through lying awk­wardly, trying to move about or accidents such as a fall. Shoulder problems cause the greatest trou­ble. The stroke team will teach the patient the best way to sit in a chair and lie in bed. Correct positioning will also protect the arms, shoulders and legs of someone with a recent stroke from pressure that may lead to a strain or bed sores.

Walking

If the patient cannot walk after a stroke, they will be confined to a bed or chair while the physiother­apists advise on the best way to manage their movement. During the early stages of a stroke, many patients are allowed to walk only if they are supervised by the physiotherapist. This is to avoid practising walking methods that may be bad for some patients. For some, it can be better to delay walking until they are strong enough to walk with a normal pat­tern of movement.
The increased spasticity of the stroke-affected limbs needs to be controlled, and this is often the main focus of early rehabilitation (see ‘Types of strokes’). Physiotherapists may spend a great deal of time getting the patient to relax and to reduce the disabling stiffness of the affected limbs. Some patients try to walk at too early a stage in their rehabilita­tion. It is important to realise that practising ‘undesirable’ move­ments may delay or complicate the best recovery after a stroke. Great patience is needed by every­one at this stage.

Eating

Swallowing problems are very common after a stroke. The basic problem is that both food and air have to use the mouth. Normally, the body makes sure that the air goes to the lungs and the food goes down to the stomach. This complex process is often disturbed in the early stages of a stroke, and can lead to problems if food goes down the wrong tube and damages the lungs or causes a chest infec­tion. To help prevent early chest infections, the stroke team will usually test the ability of the patient to swallow a test drink of water. If there is doubt about the safety of the swallow mechanism, patients will be given no food or drink (called ‘nil by mouth’) and a further, more detailed, assessment will be needed.

Speech and language therapists have taken a leading role in assessing whether people can swallow or not, although this may be done by other members of the stroke team. If people are unable to swallow food or water safely, there are various alternative methods of maintaining essential fluids and food. Simple fluids can be given into a vein or into the skin (intra­venous or subcutaneous routes). Food and drink can be given by a tube placed into the stomach through the nose or directly into the stomach through the skin.
In the first week of stroke it is possible to feed people with a nasogastric tube and this treatment may prevent some patients from dying as a result of their stroke, but, unfortunately, this feeding method does not improve longer-term independent survival. In the first month after a stroke, if patients do not recovery their swallowing ability, a nasogastric feeding tube is best, but for longer-term use (months or years) a tube placed straight into the stomach (called a PEG tube for short) is the most practical option. These feeding decisions can be very difficult for patients and their families to make and may require repeated discussion with the stroke team.

Urine and bowels

Many people with a stroke are unable to use the toilet independ­ently and this causes understand­able distress. Passing urine and opening the bowels are private activities, and it is a great shock to have to depend on others for the first time for many decades. Although many people with a stroke maintain full control, others become incontinent for a while.
The occasional accident is sometimes unavoidable because people may get too little warning to ask for help in time. Fortunately, the stroke team are aware of these problems, and most people can be helped back to full independence. In the initial stages, patients may have to ask for help each time that they need to use the toilet. Bottles and commodes at the bedside may be required for some people. To cope with the immediate prob­lem, some people need a urinary catheter, which is a tube placed into the bladder to drain the urine.

STROKE REHABILITATION UNITS

Just under half of all strokes are mild and patients have little or minimal disability, little or no difficulty with speech or swallowing and no loss of consciousness. There is then no need to keep people in hospital unless further investigations are needed. Many people with mild strokes can therefore be managed at home, or can be discharged from the hospi­tal within a week or so.
Unfortunately, about a third of people with a stroke have signifi­cant problems with everyday activities and need a great deal of help. Such strokes are thus called mod­erate or severe strokes. Although rehabilitation at home is possible, it can be very expensive and difficult to coordinate and most people disabled after a stroke will be admitted to hospital.
The stroke team will usually be able to predict who is going to need continued rehabilitation dur­ing the first week or two of hospi­tal care. Stroke rehabilitation facilities vary widely. In some hospitals, people with a stroke are transferred to a stroke rehabilita­tion unit, which may or may not be on the same site. In other hospi­tals, people are cared for on ‘gen­eral medical’ or ‘care of the elder­ly’ wards. Despite these different types of wards, the rehabilitation process is similar. The aim of stroke rehabilitation is to get the patient back to normal life as soon as possible, with the minimum dis­ruption to them and their family.
Rehabilitation depends on good team work. With so many health workers involved, it is immediately obvious that good communication is important. Every stroke is different and every reha­bilitation programme needs to be designed to suit the individual. A key part of rehabilitation is good initial assessment of the problems by each member of the team and a plan of how to overcome each problem.
The good news about strokes is that most people improve over time as the swelling resolves and different parts of the brain learn to take over some of the functions carried out by brain cells that have been damaged or destroyed. The natural recovery can be quite dra­matic for some. Most of the improvement occurs in the first three months, but further recovery can occur even later. A common phrase used is: ‘a stroke comes on quickly, most people improve, but improvement can be slow.’ During this period of natural recovery, stroke rehabilitation has been shown to be very effective.

RETURNING HOME

It is quite common for patients to need several months of rehabilita­tion in hospital, especially when the stroke has caused more severe disability. The thought of getting home can therefore be a major source of worry to both the patient and their family. Will they cope? Will there be problems? Stroke teams help solve these worries by a variety of different approaches.

Home visit assessment

The home visit assessment is very useful for people recovering from a stroke. Before a planned discharge from hospital, the therapists (usually the occupational and physiotherapist) take the patient home for the day, together with the key family members, and check that they are going to man­age. Very simple problems may be found. For example, the steps into the house may need to be altered. Rails at doorways and in halls may be useful. Bathroom equipment is often required, for example, a raised toilet seat or a shower chair.
The therapists ask the patient to do everyday tasks, such as get out of bed, go to the toilet or make a meal in their own kitchen. They can then report back to the stroke team with their recommendations. Things may have gone so well that an immediate discharge can be planned. At other times, more time may be needed to allow further preparation.
Occasionally, the home visit assessment confirms major problems that are not so easily overcome. In this situation, alternatives to going home will need to be explored.

WHEN A RETURN HOME IS NOT POSSIBLE

In many areas, particularly the more urban areas of the United Kingdom, it is possible to get back home even if the stroke has left moderate-to­severe disabilities (e.g. unable to walk). This is made possible by reg­ular carers who come into the home and help. The stroke team may plan quite complicated pack­ages of care for some patients. These community care packages can help avoid nursing home care but are dependent on local facilities and funding. Not all areas can pro­vide such comprehensive care, especially for more rural parts.
For some patients it is simply not possible to look after them in their own home and alternatives have to be considered. Residential and nursing homes are particularly useful for people who have become confused or require 24­hour care.

Residential homes

These homes are staffed 24 hours a day by care assistants. Each res­ident has his or her own room (or shared room). All the meals are provided, together with a laundry service and room cleaning, and staff are available to guide resi­dents. Residents must be mobile and continent (or able to manage their own catheters or pads). This type of home is useful for very frail people and those who may have some degree of dementia and therefore need guidance and prompting. Although some of these homes are council run, many have been privatised. In the UK, the fees for these homes will depend on where you live (the rules in Scotland are slightly differ­ent to those in the rest of the UK) and your personal circumstances. Your social worker will advise you on these complex matters. You may have to contribute to the cost of your care. If you are funding the residential home yourself, the costs can be considerable (often starting at £200–300 per week) and can vary depending on the facilities available. Generally, the patient’s family would choose the residential home, with advice from the social worker. If the patient has no immediate family or friends available, the social worker can help the patient choose the best home. Visits to view such homes, before a definitive decision, can be very useful and many patients often meet old friends, especially if a local home is identified.

Nursing homes

Nursing homes differ from residen­tial homes because they always have state-registered nurses on duty on a 24-hour basis. These homes are therefore useful if you need help with personal care (for example, going to the toilet, wash­ing, dressing, etc.) or have more complicated nursing needs, such as tube feeding, regular turning in bed (to avoid pressure sores) or dressings to skin wounds. Some people are required to contribute to the nursing home fees. In gener­al, these contributions are to cover the costs of providing the room, laundry, catering and cleaning, the so-called ‘hotel’ costs. These addi­tional contributions are means tested, and will therefore depend on the financial assessments com­pleted by your social worker. The nursing homes are usually chosen by the family. The social worker can provide a list of locally approved homes. These homes are more expensive than residential homes, typically starting at about £300–600 per week.
The social workers can provide extremely useful financial advice for patients who are moving into residential or nursing home care because most patients should receive extra government support even if they have money of their own (e.g. attendance allowance).

NHS continuing care

There are still some NHS-run hos­pital nursing homes (long-term care) available in parts of the country. These units usually have a doctor visiting regularly and a con­sultant geriatrician visiting each week. These facilities are useful for people with very complicated nursing or medical needs. For example, if patients need intra­venous fluids from time to time, or have other medical problems that require frequent attention. These units are currently considered as part of the NHS and are therefore free of charge.