Rehabilitation

A clinical neuropsychologist is a psychologist who specialises in the assessment and treatment of behavioural, emotional and cognitive (thinking) problems following brain injury. A neuropsychologist can advise on how to build upon the person’s existing skills and abilities and how to reduce some of their difficulties.

Occupational therapists (OT)s help people to develop independence in carrying out daily tasks such as dressing, washing, cooking and leisure activities. An OT will also help the person to develop the skills that underlie these activities, such as budgeting and planning, and help to find ways around any remaining problems. At a later stage, the OT may help and advise on difficulties that may be encountered in the home environment and advise on any adaptations that may need to be made. They will also be involved in planning for returning to work.

A speech and language therapist (SLT) helps people to improve their communication skills. This may include understanding and expressing both written and spoken language and improving speech clarity. The SLT will work with family members to help the person to communicate as best they can in their daily life and will identify any communication aids that may be helpful. They may also be required to assess swallowing difficulties and provide guidance on how this should be managed safely.

A physiotherapist helps people to regain the use of their muscles and joints after injury and helps with balance and movement problems. A ‘physio’ will, for example, suggest exercises to help the person improve their physical ability and enable them to become as mobile and independent as possible.

Nurses help the therapists to implement many of the rehabilitation strategies. In many in-patient rehabilitation units the care provided by the nursing team is the foundation for the rehabilitation programme provided by the multidisciplinary team. On in-patient units and in the community there may be specialist nurses who take on specific roles, such as the management of epilepsy or behavioural programmes.

Social workers provide practical advice on issues such as benefits, housing, transport and assistance at home. They are also trained to offer emotional support to individuals and their families.

A case manager is responsible for overseeing and managing the overall care of the person with a brain injury. They will prepare an individually-tailored care plan or treatment programme for each client, which is designed to meet the person’s specific health, social and emotional needs. Case managers can come from a variety of professional backgrounds, such as social work, occupational therapy, or nursing. Brain injury case managers are usually only available through private referrals and interim compensation payments.

Family members have a very important role to play in helping the survivor make as full a recovery as possible. A good working relationship between the family and the rehabilitation team is essential in making sure that rehabilitation programmes are followed correctly. Research suggests that the patients who make the best recovery are those whose family is actively involved and can maintain the skills learned in rehabilitation once the patient has gone home.

Sometimes relatives will need to learn new skills so that they can help to provide the best support. However, it is important that the family member does not become a ‘therapist’ and that they are encouraged to focus primarily on their role as somebody who provides love and affection. Family members are usually invited to participate in formal meetings with staff members to keep them informed of their relative’s progress. Sometimes the family will need to act as an advocate for the survivor when the survivor lacks the capacity to make decisions for themselves.

This depends on a number of factors such as the length of the waiting list. A few weeks of waiting should not hinder your loved one's recovery, in fact this can give them time to adjust to being at home and may help them to realise what their strengths and weaknesses are.

You should be vigilant for any effects of your relative’s brain injury that are a cause for concern. If you find that they are getting depressed, anxious or increasingly angry, you should encourage them to see their GP.

People do sometimes talk about there being a limited ‘window’ of recovery after brain injury, for example, that recovery ceases to take place beyond a year. However, this is now known not to be the case and people may actually continue to improve for a number of years after brain injury. Indeed, many people say that they never stop regaining the skills that they lost following their injury. It is also important to remember that 'recovery' looks different for people and may depend on factors such as personal goals.

Nevertheless, the greatest visible progress does occur in the first six months or so after the injury and improvement after this is often less obvious.

If a brain injury survivor has been discharged home without any access to rehabilitation, and they or their family have reason to believe that they would benefit from it, there are still options available.

They are perfectly within their rights to actively seek rehabilitation services, even if they have been told that there are none available or needed.

The first thing the survivor should do is discuss the matter with their GP and/or consultant. They may be able to provide a referral. They can also contact rehabilitation services directly.

It is advisable to contact several units and visit them to assess their suitability before making a decision.

There are many rehabilitation professionals working in private practice. If little or no rehabilitation has been provided by the NHS or social services then one option can be to contact professionals independently. It may still be possible to obtain an NHS or social services referral, or it may be necessary to pay privately.

Unfortunately, rehabilitation services often have long waiting lists and it might be weeks or even months before the brain injury survivor is able to receive rehabilitation. For many survivors and family members, this can be a difficult and confusing time, and family members may wonder what they can do to help the survivor in the meantime.

Below we offer some tips to cope while waiting for rehabilitation services.

• Keep in touch with the survivor’s GP to make sure that the arrangement for rehabilitation is still on track.

• Learn about ways to cope with the effects of brain injury in the meantime by visiting Living with brain injury.

• The survivor should gradually increase their activities in the first few weeks rather than going straight back into the routine they had before their injury. This is because issues like fatigue can be particularly problematic in the early days of brain injury.

• Consider developing a home activity programme. This involves creating a regular schedule that consists of activities around the home that the survivor can enjoy and undertake safely. Progress can be celebrated as they complete the activity, for instance each time they are able to make a cup of tea without needing to remind them where the teabags, milk and sugar are kept. More information about designing a home activity programme and other useful tips are available on Redeveloping skills.

• If the survivor or their family require support in the home or with daily aspects of living, consider contacting the local authority’s adult social care team to arrange for a needs assessment.

• Contact our nurse-led helpline to find out more about how we can help in the meantime.

In the first month or two after a severe brain injury it is only possible to guess at the length of time that recovery will take and the likely outcome. All that is certain is that recovery is a slow process and will take months or years rather than weeks.

Six months after the injury the picture will be clearer, but it is wise to wait until about a year after the accident before making any important decisions regarding the future. After a year or so one can be reasonably certain about the eventual degree of physical recovery. However, psychological recovery can take considerably longer and it is usually these more subtle psychological problems that cause longer-term difficulties, particularly for family members.

People do sometimes talk about there being a limited 'window' for recovery after brain injury, for example, that recovery ceases to take place beyond two years. However, this is now known not to be the case and people may actually continue to improve for a number of years after brain injury. Indeed, many people say that they never stop re-gaining the skills that they lost following the injury.

Nevertheless, the greatest visible progress does occur in the first six months or so post-injury and after this improvement is often less obvious.