Our Access to Communication and Technology (ACT) service is celebrating its 40th anniversary.
Since its launch in 1983, the service has pioneered the use of technology to help people with over 1,300 different medical conditions, exploring how electronic communication aids, low-tech communication methods and computers can enhance communication, control domestic appliances and maximise capacity for independent living.
Based at West Midlands Rehabilitation Centre in Selly Oak, the 35-strong team is made up of speech and language therapists, occupational therapists, clinical scientists, technicians, stock team staff, administrators and assistant practitioners. ACT currently has 751 people ‘on the books’ – around a third part-way through their assessment and provision journey; the rest on a rota for home visits by technicians to check and maintain their equipment.
A short history of Access to Communication and Technology
In 1980, the Freemasons convinced the NHS to co-fund a pilot project in Bristol to look at assessment for and provision of aids for people with a range of communication needs. This was successful and a further project was set up to widen the coverage.
The wider project £1 million funding was to last for five years, after which it was hoped that the NHS would continue the funding. Bids were sought in 1983 for five centres in England and Wales; and in Sandwell, Clive Thursfield from the Midland Centre for Neurosurgery and Neurology medical physics department (pictured, below) and Sandwell Area Health Authority head of speech and language therapy Marjorie Ingamells bid successfully to become one of the centres.
Clive became head of the service, together with speech and language therapist (SLT) Kath Robinson; technician Mike Ryan and secretary Linda Foster and the Sandwell Communication Aid Centre (SCAC) was launched in November 1983.
The original bid was for a ’shop window’ service - patients would visit with their SLT and receive support to choose a device to try out, usually for four weeks, but longer if necessary. Further trials could be arranged and SLTs would seek Health Authority funding if a device proved successful.
Clive and Marjorie wanted to provide devices that better met individual needs - to personalise the solutions. To this end, the role of the technician was to provide technical support, maintenance and repair of commercially available devices and to work on novel solutions, including mounting devices to patient’s wheelchairs.
In the end, six centres were established – in Bristol, Birmingham, Cardiff, Newcastle and two in London. When funding ended in 1988, local Health Authorities picked up the tab, or not (the Newcastle centre closed completely). Funding continued for the SCAC but referrals were restricted to Birmingham.
In 1990, Sandwell Area Health Authority stopped funding what was a regional service and the decision was made to move to the West Midlands Rehabilitation Centre in Selly Oak, then being established to provide specialist region-wide services. No longer in Sandwell and with “Aids” by then adopted as the name of a global disease, the service changed its name to the Centre for Human Communication (CHC).
The WMRC management agreed that the “shop window” model was ineffective, so set a recurrent budget for provision of Augmentative and Alternative Communication (AAC) devices and strategies. In 1993, the service absorbed the Regional Environmental Control Service and expanded its remit to include access to computers and other technology. The name “Access to Communication and Technology” (ACT) was adopted to reflect the new integrated service.
The commitment and drive of the team earned the service a reputation for driving change and innovation in an emerging field. Clive ensured that the biannual International Society of Augmentative and Alternative Communication conference would alternate between America and Europe to this day, after agreeing to organise a follow-up to the inaugural event in Michigan in 1984. Two years later, Clive co-chaired a successful follow-up symposium in Cardiff.
There have been periods of huge challenge on the ACT journey – budget pressures have meant the loss of colleagues and restrictions on the number of devices funded, resulting in significant delays before equipment could be supplied to patients.
Thankfully, a 2008 review led by John Bercow heralded a renewed focus on support for children and young people with speech, language and communication needs; Clive Thursfield sat on the committee charged with meeting a drive to establish services around the country based on our ACT model.
In 2013, ACT won two NHS England contracts - one for EC and another for AAC, for the assessment and provision of service to Greater Birmingham, Warwickshire, Staffordshire, Shropshire, Worcestershire and Herefordshire. The new service started work in 2014 and ACT has grown to 35 staff, with admin and stock control supporting technical and clinical expertise.
The service has continued to manage budgetary pressures and the Covid-19 pandemic had a significant impact, with many staff redeployed and assessments restricted to a few priority clients, resulting in a significant waiting list. But throughout all the challenges, the team remains as focussed as ever on harnessing the potential of technology to make transformative impacts on people’s lives.
Four decades of innovation
Clinical Scientist Mike Ryan (left) was part of the team when the service that would become ACT was launched in 1983.
He has seen the team grow from four to 35 employees, starting in building previously used as a baby clinic in Sandwell and ending in the West Midlands rehabilitation Centre in Selly Oak.
In 40 years technology has changed greatly and is in nearly every home and has transformed our way of life.
“We used to invent stuff more or less from scratch,” he says. “It was a case of assessing an individual’s need and seeing what we could come up with to improve their quality of life.
“Back then, there were only a handful companies that made Augmentative and Alternative Communication equipment. Then there was a proliferation of suppliers. But now, that’s shrunk right back down to about half a dozen providing very specialist gear.
“A lot of the common domestic ‘smart’ devices such as Alexa or Hive - unimaginable bits of kit 40 years ago – have been game-changers for people with reduced physical ability.”
Mike says that budget pressures have always been a fact of life for a team dedicated to supplying life-changing but often relatively expensive equipment – but the funding landscape changed for the better a decade ago.
“We are very fortunate that when our new contracts were put together in 2013/14, we successfully bid for the money to be able to provide the service that we thought was needed,” he said.
“Sometimes a simple aid makes a huge difference to people’s lives. One lady we know has just gained a certificate in mentoring with the help of a communication aid. We know several people who have got degrees, achievements that would have been much harder without the equipment we provided.
“It’s a very wide spectrum of patients - the youngest we have seen was three years old and the oldest 98 - and a very wide range of needs. So, our job is to assess the needs of people in conjunction with their support network (parents, teachers, carers, spouses, partners and family), working right across the teams at the rehabilitation centre, to develop bespoke solutions that will enable them to communicate and control their environment.
“We use technology from all areas, specialist sensors for detecting tiny movements of body parts, eyegaze controlled mice to move the cursor on a screen and commonly available household items like Alexa and Google translate.”
“Enabling people to communicate is so crucial to fulfilling potential – for example, children with behaviour that challenges in school. So often, it comes down to communication – giving them the means to tell people what is wrong and what they need can make a big difference.”
“My modus operandi has always been to try and help people – whether that’s colleagues, service users or partners – and that sums up the whole service, really. We’re just here to use our know-how to come up with technical solutions to help people lead fulfilling lives.”
The ACT team describes Bal Deol as “a great success story for our team and the transformative effect of communication aids”.
Diagnosed with neurological disorder dystonia after starting to suffer painful muscle spasms at the age of eight, Bal went on to gain a first class honours degree and had begun a Masters when, very quickly, she lost both the ability to walk and her vision.
Diagnosed with mitochondrial disease and Leber hereditary optic neuropathy at the age of 24, Bal has remained in higher education, currently completing a PhD at Staffordshire University.
“I woke up one morning with blurry vision,” said the 30-year-old, of Wolverhampton, whose doctorate compares disabled and non-disabled students’ motivations for going into higher education.
“It was really scary - I didn’t want to admit what I had and I didn’t want to ask for help.
“When I realised it was genetic, I was more concerned that my sisters could get it and I would never wish this on another human being – the pain is indescribable.”
Determined not to let her disabilities stand in her way, Bal’s academic career has also included a year as students’ union president and successful campaigning for a law change after realising taxi drivers were hiking fares for passengers with wheelchairs.
Referred to ACT by her local speech therapist, the process of “banking” Bal’s voice began – recording a set of spoken phrases while her voice was still strong enough.
ACT occupational therapist Jenny Butcher explains: “The recordings are converted into a synthetic voice to be used on communication devices, the idea being that a person can continue to use their own individual voice once their speech has become difficult to understand.”
Bal was delighted when the ACT team supplied a device with a voice that “sounds like me”, having used a smaller version funded by the Lily Foundation charity.
“The device we supplied is much larger, therefore more visually accessible - Bal has a significant sight impairment,” says Jenny.
“We also changed the way it was mounted to her wheelchair so it’s more appropriately positioned and provided a joystick so that she can access the device with more accuracy than with the touch screen. This also means she can zoom in on the screen, further supporting her visual needs.
“Having a device from ACT also means we are able to provide ongoing support - if Bal’s needs change, we can ensure her equipment continues to meet those needs.”
And, for Bal, that ongoing support is more than just maximising her independence – it’s about her sense of self.
“I just want to be like the rest of my family but, over the last two years in particular, I have noticed a severe deterioration in my health,” she says.
“If a genie came out of a bottle, my one wish would be to have a normal voice. I don’t want to end up losing my identity – your speech is ‘you’; it’s how you come across to people.”