Even though services have been disrupted, it’s important to realise that there is still support available for people with brain injuries.
By Hokman Wong
On 23 March 2020, the Government announced lockdown had commenced. Almost overnight, therapy services (such as physiotherapy and occupational therapy) for many of my clients ceased. This meant rehabilitation was interrupted, despite rehabilitation in the first 12-24 months after a brain injury being important to maximise overall recovery. Lack of support workers increased pressure on family and friends to fill this gap.
In July 2020, Headway published the results from a survey involving 933 brain injured people. 65% felt isolated as a result of lockdown and 62% reported an increased fear for their future due to lockdown, which contrasted sharply with a 2017
Headway survey that showed just 28% of people had negative feelings about their future. Most worryingly, 57% reported that they had been denied vital rehabilitation and 60% felt lockdown had a negative effect on their mental health.
In June 2020, another brain injury charity, Silverlining, which provides valuable support by way of group meetings and activities, published results from their survey on the effects of lockdown. 10% and 54% reported their mood had been severely and moderately affected, respectively.
However, there was one positive result from the Headway survey, 27% reported a positive change in relationships with their neighbours. This highlighted how local communities have come together to support each other during lockdown. This is a welcome finding, but the informal support of neighbours does not make up for the lack of rehabilitation and specialist services.
For families and people with a brain injury, additional support and therapy is out there, even in these difficult times.
Rehabilitation in the community (after a patient has been discharged from hospital) is arranged through the hospital community team or through a GP. As already mentioned, NHS services have become strained since the pandemic. Alternative sources of help may be obtained from charities and private therapy providers.
We are fortunate in this country to have number of brain injury charities who provide a wealth of useful information for brain injury survivors and people who support them. Headway is one of the largest and provides information on all types of brain injury. There is practical information, from going back to work, to driving. They also provide a useful helpline if you prefer to speak with someone.
Stroke is a leading cause of brain injury. For stroke survivors the Stroke Association provides a fantastic amount of useful information. There is information on the journey a stroke patient takes through hospital to discharge and beyond.
Headway and the Stroke Association have local support groups where brain injury survivors can meet and share support. With a disability that is often invisible there is great benefit in meeting others and knowing you are not alone.
Charities offer a wealth of information and support; however, they are limited in providing rehabilitation. Brain injury survivors often ask, “How long should community given rehabilitation last?” The ideal answer would be “Only when you’re no longer benefitting from it”. On the NHS six weeks is an often quoted time period, but this is mainly due to NHS resources. Brain injury survivors have a wide range of rehabilitation needs but, in this time, when resources are low, private rehabilitation is often the only option.
Main therapy disciplines and information on how to find a therapist.
These therapists help with mobility, muscle weakness, balance and generally recovering the ability to perform physical tasks. Neurophysiotherapists are specialist physiotherapists that deal with brain injury survivors. The Chartered Society of Physiotherapy is a good place to search for a suitable physiotherapist.
Action for Rehabilitation from Neurological Injury (ARNI) is a charity for stroke survivors who provide specialist rehabilitation and exercise support after hospital and community physiotherapy finishes. The ARNI exercise programme takes a modern approach to physical rehabilitation by focusing only on exercises that produce functional improvement. ARNI is new compared to traditional methods, but their programme is supported by clinical evidence. Television presenter, Andrew Marr, credits his recovery to the ARNI programme.
Speech and language therapy
Brain injury survivors may experience a number of speech and language issues. Aphasia is difficulty in saying what you’re thinking or understanding the spoken word. Dysarthria is where muscles used to speak are affected, making speech difficult. Brain injury speech and language therapists help with these conditions. The Association of Speech and Language Therapists in Independent Practice can help you to find a suitable therapist.
Occupational therapists help people to overcome barriers preventing them from doing activities that matter to them. Activities range from work, to day-to-day tasks, to leisure activities. Brain injury survivors require neurological/neurorehabilitation occupational therapists. Such therapists can be found through the Royal College of Occupational Therapists.
Brain injury survivors may experience emotional (anxiety, depression) and cognitive (poor memory and problem solving) issues arising from their injury. Clinical psychologists help with the former and neuropsychologists help with the latter. The British Psychological Society can help you find appropriate psychologists.
Hokman Wong is senior solicitor in the brain injury team at law firm, Bolt Burdon Kemp.
The ARNI Institute (Action for Rehabilitation from Neurological Injury)
Association of Speech and Language Therapists in Independent Practice
The British Psychological Society
Chartered Society of Physiotherapy
helpline: 0808 800 2244
Royal College of Occupational Therapists
The Silverlining Brain Injury Charity