After leaving hospital, people we interviewed went on to receive various kinds of rehabilitation, including physiotherapy, occupational therapy, speech and language therapy, neuropsychology and counselling. These rehabilitation therapies aimed to enable people to get back to living as independently as possible by encouraging them to become experts in their own injury, helping them to regain mobility (either by walking or using mobility aids), speech, to take care of themselves, come to terms with their injuries and deal with mental impairments, like memory problems.
People sometimes felt they had to ‘relearn everything’ (Interview 23
). They said it was like being reborn or going back to primary school. When people were feeling depressed and sorry for themselves, rehab sometimes gave them hope that they could get their lives back on track.
For the most part, rehabilitation took place in rehab centres, hospitals or units. Sometimes people were admitted as inpatients, but others attended outpatient rehab or were treated in their own homes. Family members were often involved in organising and finding the most appropriate rehabilitation. Other people took control of organising their rehab and incorporated alternative therapies, like electric acupuncture and reflexology, into their therapy.
Rehabilitation was made more difficult by the fatigue and weakness people experienced after injury. But they felt determined to work hard on their recovery outside of their sessions with rehabilitation professionals. They went to the gym, walked and swam. Exercise helped people gain strength after injury and increased their self-confidence. Since Simon A was being financially supported by his employer, he decided to treat his rehab as his job.
Physiotherapists focused on helping people to regain mobility and strength after injury, through exercise and massage. Simon B joked that at his rehabilitation hospital, physiotherapists were nicknamed ‘physioterrorists’ because they always pushed you. People who were able to walk again learned at ‘walking school’ using parallel bars. Those who needed mobility aids (e.g. wheelchairs and prosthetic limbs) were taught how to use these effectively by rehabilitation staff.
Occupational therapists helped people to relearn skills (or sometimes learn new skills) that would help them live independently, such as cooking, cleaning, shopping and using public transport. They also made sure people had the aids and equipment they needed and that their homes were appropriate for their new needs. Going out in public was difficult for some people who feared they could be injured again.
People learned to talk again with the support of speech and language therapists. This could take time and practice. One man (Interview 7) thought the way he spoke made him sound ‘drunk and stupid’. Jamie said after his injury his voice sounded ‘childish’. In speech and language therapy, people were taught physical exercises to help strengthen their facial muscles. To help them pronounce words, they used tongue twisters like’ ‘Wee Willy wept wildly as his wicked uncle whipped him’. They learned to breathe, to speak slowly and clearly, and with volume. Interview 7 had a palatal lift for several months to stop air escaping from his upper palate when he spoke.
After brain injury, people were assessed by neuropsychologists to understand the extent of their impairments. Memory problems were one of the most commonly discussed. Psychologists also helped people to devise strategies to deal with the challenges they now faced, and some helped people to return to work or find a new role.
People we interviewed who experienced mental health issues after injury were referred to psychiatrists or psychologists and/or admitted to mental health units. They had cognitive behavioural therapy (CBT) to help them ‘rewrite the soundtrack’ (Jane) in their head and to manage the thoughts they fixated on. Part of one man’s therapy (Interview 23
) involved gardening, which also gave him skills he could use to find employment. Some, but not all, were offered counselling to deal with the trauma of their injuries. Those who declined it said they preferred practical help. Amy was offered psychological help, but rejected it because she wanted to learn practical skills to help ‘fix’ her brain.
It was important for people that the rehabilitation staff they worked with had specialist knowledge of their type of injury, but staff usually had not experienced a life-changing injury. Through rehabilitation, people got to meet others with similar injuries who sometimes became friends. They often felt ‘lucky’ because they realised there were others with more serious problems than them. Some met ‘expert patients’ who had similar injuries and told them about struggles and pitfalls they may face, and how to avoid them.
Those who were rehabilitated in hospital described both the physical environment and the culture as ‘disabled friendly’ (Nick Z). But going home was quite a difficult experience, especially if people required more support and their homes had not been modified to suit their new needs. Simon B said that rehabilitation really starts when you are discharged.
People said it was important to practice their rehabilitation in their own time in addition to their sessions because staff could only help so much and the rest was up to them. They were determined to do their best in rehabilitation and felt that the difficult time and the effort they put in during the initial stages after their injuries would pay off in the long-term. They often lost their self-confidence after injury and said undergoing rehab helped them to regain it. Rehabilitation is hard work, requires perseverance and can be a frustrating time, but people were encouraged by the progress they made.
At the time of their interviews, some were still in rehab and they hoped they would continue to improve. People still faced challenges, but continued to learn new ways of dealing with them, although they didn’t want to have to do rehab forever. They were grateful they were able to access rehab on the NHS, but worried about the lack of funding for rehabilitation units. People were often supported in their rehabilitation by their family and friends and paid carers sometimes took on a physiotherapy role, helping people with their exercises.
See also ‘Making homes accessible for aquired disability‘, ‘Mobility aids for physical disability‘, ‘Challenges and strategies after injury or aquired disability‘