Patients with aphasia — speech and language difficulties following stroke, traumatic brain injury or brain tumours — can benefit from new high dose of 100 hours of therapy, thanks to The National Brain Appeal.
The charity is raising £600,000 to fund the two-year programme, thought to be the first of its kind in the UK, at The National Hospital for Neurology and Neurosurgery in London’s Queen Square, part of University College London Hospitals NHS Foundation Trust (UCLH). The co-founders are University College London Professors Alex Leff and Jenny Crinion from the Faculty of Brain Sciences. It is hoped that after two years, the programme will be funded on the NHS.
Currently in the UK patients receive, on average, four hours of speech and language therapy while in hospital followed up by eight hours once they have been discharged home. The National Brain Appeal Aphasia Programme will provide, to groups of four patients at any one time, personalised therapy for seven hours a day, five days a week for three weeks. They then will continue with independent goal directed work at home to keep up their progress which the team will monitor at three months, six months and one year later. Psychological support will also be provided as well as involving family and friends in some sessions.
Aphasia is an acquired communication disorder most commonly caused by stroke. It is estimated that there are more than 350,000 people living with aphasia in the UK yet many people have never heard of it. It can affect people differently, depending on where in their brain has been damaged but most people report speaking, listening, reading and writing are challenging. This means everyday activities like using the phone, internet, having a conversation are a source of profound frustration and distress not only for the person with aphasia but also their families and friends. For many people it means losing their jobs. The frustration of knowing what you want to say but struggling to say it, can lead to depression, anger, social isolation.
Contrary to popular belief, there is no ‘window of plasticity’ which restricts when aphasic patients can improve. As long as patients have a capacity to learn, they can improve regardless of how long ago they suffered their brain injury.
The National Brain Appeal is providing funding for two full-time speech and language therapists, two full-time speech and language assistants and admin support. They are also part-funding clinical psychology and input from Consultant Speech and Language Therapist Claire Farrington-Douglas, an expert in conversation partner training, to coordinate and implement the programme.
Alex Leff, UCL Professor of Neurology, said: “Imagine the chaos if a major train hub such as Kings Cross is out of action, a similar process is happening in the brain. Patients may know what they want to say but they can’t grab the words, the network is broken and all areas of language — reading, writing, speech and understanding speech — are damaged. The National Brain Appeal Aphasia Programme will help patients re-learn language and join up these blocked routes.”
Professor Leff continued: “The key to repairing this damage is the high dose of therapy. Studies have shown that even a dose of 40 hours does not generally lead to clinically meaningful gains. Currently NHS patients are only receiving 12 hours on average. We will be providing over 100 hours. The therapy itself is neither radical or new, but the dose and intensity is. Thinking about it, learning a foreign language, even a relatively easy one such as Spanish, takes around 300 hours. It makes sense that re-learning language after brain injury will need substantial time input.”
Jenny Crinion, UCL Professor of Cognitive Neuroscience, said: “It is never too late for the appropriate rehabilitation for patients with aphasia. It is simply not true that if more than a year has passed they will never get better. We really want to get that message across. Patients are being left with severe problems and being led to believe that they cannot be helped further, leading, in many cases, to isolation and depression. They are not improving because they have not had the correct dose of therapy. The 12 hours that the NHS currently, on average, provides falls way short of the 100 hours the research evidence has proven is needed to help them recover significant language function.”
Professor Crinion continued: “We are so grateful to The National Brain Appeal for helping us implement new research approaches to transform the quality of treatment and chance of recovery for people with aphasia. It is early days but we are already seeing very encouraging results. Our first group of patients ranged from two to ten years since after their brain injury. At the end of the three-week programme all made significant improvements in their language skills and achieved many of their short-term personal goals. This included things many of us would take for granted, such as being able to read a bedtime story to their kids, being able to phone their relatives and have a chat or ordering a coffee in a cafe. These gains have already made a big impact on their lives. Together with the self-management strategies they learnt in the initial three-week block we look forward to seeing how over the coming year they continue to improve their ability to communicate and achieve their longer term personal goals, engage in life and its opportunities.”
Theresa Dauncey, Chief Executive of The National Brain Appeal, said: “At The National Brain Appeal we work closely with clinicians to fund projects that have the potential to make significant improvements to the lives of patients with neurological disorders. Their ideas often just need a period of time to prove that they work to then, hopefully, be commissioned by the NHS. There is powerful evidence that high dose therapy for aphasic patients works and has the ability to transform their lives. We are delighted to support Professors Alex Leff and Jenny Crinion to establish The National Brain Appeal Aphasia Programme at Queen Square and very encouraged by the impact it is already having on patients.”
A separate programme delivering 100 hours of therapy at a lower level of intensity over many more weeks will be set up for those patients for whom the 100 hours over three weeks is not suitable.
To donate to The National Brain Appeal Aphasia Programme go to: https://www.justgiving.com/campaign/aphasia
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