“They were considered the most challenging people in the country”

Gillian Morbey was 21 and had just begun her nursing career in her home city of Glasgow when she had her first child. It was soon apparent to the Morbeys that their son wasn’t developing in the same way as other babies his age and for the first few years of his life, he was bounced from paediatrician to sensory expert to cardiologist, trying to determine why. Eventually, he was diagnosed with congenital rubella syndrome, a condition that robbed him of his eyesight and hearing, caused heart defects and for which there is no cure.

Over the next few years, the Morbeys devoted themselves to searching for ways to support their severely disabled son. This was well before the internet, so simply searching online for “local services for deafblind children” was not an option. They soon learned that the systems that existed to help families like theirs were either non-existent or far below par: professionals were pressuring parents to send their children to large, anonymous schools that were designed for children with learning disabilities, not deafblindness. By the time her son was five, Gillian decided to take matters into her own hands.

“Just getting grumpy all the time was not getting me anywhere,” she recalls, “so I decided to go to university and get a degree in psychology. I decided I needed to better understand the people that I’m working around, and also I felt I needed more credibility. Even though I was a trained nurse, I needed a degree if I was to get people to listen to me.” For the next four years, as well as raising, by then, two small children, Gillian attended lectures and wrote essays in the early hours of the morning. At the end of her degree, she teamed up with a researcher from Edinburgh University to carry out the first research study into the numbers of deafblind people in Scotland, many of whom were confined to long-stay institutions. Look, I’m here was published in 1985.

That same year, with their son now aged 10, the Morbeys clubbed together with some other families and formed a parents’ support group. This was essentially the start of Sense Scotland, the national deafblind and rubella association which took its name from the affiliated charity in England, Sense. Gillian’s dedication to the cause meant that she soon became its first paid employee – development officer – and as the organisation grew, its first chief executive. She would lead the charity for 25 years, overseeing its growth from a kitchen-table project with zero funding to a £20m-turnover enterprise with £5m in reserves.

“By the time I left in 2010, we offered 24-hour supported housing, day services, community services, children and family services, and an arts and wellbeing department. We got very friendly with politicians, with directors of social services – that’s where being a parents’ group helped, I think because we were quite compelling. We refused to take no for an answer.

“As young families, we were always kind of patted on our heads by the professionals – they’d say we were partners with them but actually they just patronised us. But in the end, we managed to establish this really significant, innovative charity which is now one of the biggest in Scotland.”

The charity’s first local authority contract was in the Strathclyde region, and over the years it expanded to Aberdeen, Dundee, Lanarkshire, Inverness, Fort William and Skye.

Gillian also reached out to the few experts around the world that specialised in rubella and deafblindness, and combined this new-found knowledge with her own parental empathy to develop and spread awareness of new ways of dealing with people with these disabilities.

“People often ask, how do you communicate with a deafblind baby? What you don’t do is just leave them in the middle of the floor and walk away. You put them on a mat, so the baby can feel the perimeter, and next to a wall, so they’re not flailing. Leave a favourite toy. And when you come back, don’t just suddenly pick the child up – bang the floor as you approach, wear the same perfume, give them a signal so they know it’s you. And then if you want to take them for a bath, give them a sponge so they start to anticipate. And then they can start to tell you what they want, by giving you their cup if they want a drink, and eventually just by bending their arm – they don’t even need to use the cup.

“A lot of it is about building up trust – letting them know they’re not going to be harmed, and helping them to have control over their lives.”

Care in the community

The rise of Sense Scotland in the 1990s and 2000s coincided with Holyrood’s drive to close down long-stay hospitals and resettle disabled people in the community, and Gillian found herself on a huge learning curve as she encountered scores of deafblind children and adults hidden away in such institutions. She tells story after heartbreaking story of youngsters chained to radiators, trussed up in harnesses to prevent them from self-harming, or terrified of rain because they’d never been outside. “They were considered the most challenging people in the country,” Gillian recalls.

But she also relates story after heartwarming story of how Sense Scotland helped to improve the quality of life for those young people: the girl who after two years of therapy was ready to throw off her harness and celebrate its incineration on a bonfire; the boy who learned to love swimming after being introduced to a hydrotherapy pool; the toddler laughing in wonder after operating the bubble tube in the sensory room. Determined to prove wrong those that said it couldn’t be done, in 1990 Sense Scotland partnered with housing charity Quarriers to open the first registered care home for people who were rescued from the long-stay institutions. Many of the people who were discharged from those institutions are still in the care of Sense Scotland today.

Both Sense and Sense Scotland also worked internationally as they sought to harness wider knowledge and learning, and in 1987 the first international rubella conference was held in Scotland. The mid-1990s also saw the establishment of Sense International, another affiliated charity, in India, where rubella is still rife today.  Now also operating in East Africa, Bangladesh, Romania, Peru and Nepal, Sense International facilitates the training of local people to fundraise and provide services. “It’s a two-way relationship,” explains Gillian. “As sophisticated UK charities we have a responsibility to support struggling new organisations, but also we are constantly blown away by what those organisations are able to do with very little resource, so we learn so much from them too.”

Another landmark development for Sense Scotland was the opening of Glasgow TouchBase in 2007.  Touchbase is a purpose-built space delivering a range of services and support for children with special communication needs, but it is also a community hub and an income stream for Sense Scotland, in that it rents out event space and operates a bustling public café. Gillian recalls: “Even in 2006 we could see that social care budgets were going to struggle going forward. I was looking at all our income streams and thinking, uh-oh, this is really risky, we need to think of something else. It’s always been one of my mantras through life that there’s no point whingeing on about something all the time and not getting anywhere, you have to be part of the solution. And that’s how TouchBase Glasgow came to be set up as a social enterprise.”

As well as helping the charity to diversify its income streams, TouchBase helped to solve a problem that had arisen as a result of the new drive to discharge disabled people from long-stay institutions and rehouse them in the community. By providing business services and a café in the same building as services for disabled people, Sense beneficiaries are able to mix with non-disabled people in an inclusive and supportive environment, providing a positive experience for all.

“It’s not that people in the community are wicked and don’t want to engage with our disabled kids – they’re just frightened,” says Gillian. “They don’t want to say the wrong thing or put a foot wrong. But we took all that stuff down and let people learn from each other gradually. For instance, the taxi drivers used to come and drop off these bundles of humanity, but they didn’t know them. Then one day we did free bacon butties in the café and the taxi drivers all came in and were served by the people they’d been dropping off and picking up.

“So the secret to inclusion,” she explains with a twinkle in her eye, “is bacon butties.”

On top of that, TouchBase is also a central point where support workers can come and unload after a tough day out in the field. “If you’re working with challenging people in the community, and you’re a lone worker – the most skilled and least rewarded in society – some days you just need to touch base and come back and have a cuddle and relax. So it’s not just an enterprise, it’s a base.”

Move to Sense in England

By 2010 Gillian was winding down to retirement and had just bought a croft in Argyle when she got a phone call from the chair of Sense, the Birmingham-based charity. “Sense was struggling a little bit, lots of charities go through the occasional blip, so he asked me if I could come down for six months and give them a hand. Of course, I said yes, little knowing I would stay for eight years.”

Taking the helm at Sense was an altogether different scale of challenge: it had a turnover of about £60m compared with Sense Scotland’s £20m, and Gillian was also accountable for Sense International, which contributed another £3m of income. She soon saw that the funding challenges squeezing the social care sector were not unique to Scotland. Her English colleagues were full of admiration for the concept of TouchBase Glasgow, and before long the charity was drawing up plans for its own TouchBase, in Birmingham. Again, the scale of the challenge was much greater: a £14m capital build compared with Glasgow’s £4m project.

Getting the money in place was “no walk in the park”, recalls Gillian. “It was a mixed financial model, we fundraised for £5m, got £2m from the government’s Regional Growth Fund and then a finance package from the bank.” But that belies the true story, which is as good an illustration as any of her gutsy determination and refusal to take no for an answer.

“When we went to the government about the RGF, they said, “oh no, sorry, this fund isn’t open to charities, it’s for businesses”. I said I’d been reading the criteria, which was to increase employment, regenerate communities, and to be a sustainable enterprise, and I ticked all of those – but they still said I couldn’t apply.  So I said, with a big smile, “ok, that’s fine, if you could just put that in writing for me, I’ll take it forward from there, because as far as I can see, we meet all the criteria”. About a week later a more senior person phoned me up and said they would consider us. And we got £2.1m from them. And we delivered on time and within budget.”

As well as hosting the Sense HQ and providing various contracted disability and social care services, TouchBase Pears in Birmingham houses the local children’s public library, rents out long-term office space to RNIB and others, provides conference facilities and arts and performance spaces, and runs the Hive café. It was opened by HRH the Princess Royal in 2018 and during the 2018/19 year, it hosted over 4,000 events, providing income to Sense of £264,000.

In Scotland, TouchBase Lanarkshire also opened in 2016 and TouchBase Ayrshire in 2017. Gillian is proud of the TouchBase model but, with typical modesty, still feels it could be improved. “It’s a step in the right direction, but I think if I was doing one again I’d maybe make it smaller and tailor it more to the community’s needs. And possibly put respite facilities in as well.”

But her greater regret is that the TouchBase model didn’t gain the traction she felt it should have across government as a solution to the funding pressures in the sector. “We had loads of people, including ministers, making all the right noises when they were at TouchBase, saying that this is something that can really respond to the challenges facing social care, but then – nothing.

“I’m not professing that the model is perfect but there are a lot of positives in it, and we have to do something to try and get out of this terrible situation we’re in with social care funding.”

She doesn’t want to lay the blame for this entirely at the door of government – “government for whatever reason is always bound by so much process, and it’s fair to say the voluntary sector isn’t very good at publicising itself” – but she is clearly frustrated that the social enterprise model encapsulated by TouchBase hasn’t been replicated more widely across social care.

“I mean, the voluntary sector is amazing,” she says. “The number of people we employ, the number of volunteers we harness – there is so much that business could learn from us. No business could cope with the changes in income streams and budgets and all the rest of it that we have to deal with. We are creative, we think out of the box.”

Nowadays Gillian has finally retired to her croft in Argyle, although she continued advising the trustees and team at Sense Scotland during the pandemic, and she remains a member of the Wolfson Foundation Health & Disability Committee, which awards grants to worthy projects. She also remains involves with Sense International and hopes to return to India to catch up with the many deafblind people there she has known since they were children.

What does she consider her proudest achievement? “You know, from the young man we got out of the hospital who was chained to the radiator, to establishing TouchBases – it’s all been amazing. That’s the privilege of working in the sector – you meet heroes every day. It’s humbling.  That’s why I get so annoyed when all we hear is the bad side of charities. I’ve been so lucky – I’ve no idea how I managed to win this award because nothing I’ve done is special or out of the ordinary – every day was just another day in the life.”

The Gillian Morbey years

• 1970-1980 Registered nurse, Western Infirmary
• 1980-1984 University of Strathclyde (psychology BA Hons)
• 1985-2010 Development officer then chief executive, Sense Scotland
• 1989-1995 Vice-chair then chair, Glasgow Council for the Voluntary Sector
• 1994 Member, the All Party Disability Group
• 1995 Awarded the OBE
• 1995-2001 Ministerial appointment to and latterly vice-chair of the Family Fund Trust for families with severely disabled children
• 2005 Awarded Scottish Social Entrepreneur of the Year
• 2008 Awarded Glasgow City Council’s Lord Provost Award for services to the community
• 2010-2018 Chief executive, Sense and Sense International
• 2011-2019 President, Deafblind International
• 2017-2019 Co-chair, West Midlands Combined Authority Social Economic Taskforce
• 2018-now Member of the Wolfson Foundation Health and Disability Committee