Art adds colour to end-of-life hospice care

Alison Couston, who has a rare neurological disease.

For Alison Couston, hope is as simple as a brush stroke.

“I got a diagnosis that was quite depressing in many ways,” said the 69-year-old mum of two. “But the artists here have made me think more positively. I was a positive person to start with but this has really encouraged me to be more active. So it’s good.”

Alison might have been forgiven for abandoning her creative energies following a devastating diagnosis of progressive supranuclear palsy (PSP) last year.

The neurodegenerative disease is the result of damage to the brain caused by the build-up of protein cells called tau. Normally the body breaks these down, but in people with Alison’s condition the protein forms harmful clumps.

People with the illness can develop a range of difficulties including problems with balance, movement, vision, speech and swallowing. NHS figures show 4,000 people live with the condition in the UK, although the real figure may be higher due to misdiagnosis.

Alison’s speech, mobility, balance and co-ordination have been affected in the period since her diagnosis. But rather than giving up, the Glasgow theatre producer is still pushing creative boundaries.

The power of art

As director of Baldy Bane Theatre in Education company, Alison’s creative influence has benefited tens of thousands of schoolkids around Scotland for 30 years until 2021.

The company toured all corners of Scotland, bringing the positive power of the arts into lives that might otherwise not have had access to theatre trips.

Now Alison is herself receiving the benefit of artistic practice at a challenging time as a weekly visitor to the art room at the Prince and Princess of Wales Hospice in Glasgow’s Bellahouston Park.

“There are no average days,” said artist Jenny Pearson, one of three who work at the art room with patients of all ages as part of the hospice’s creative arts service.

“It’s quite a frightening time for anyone who is referred to a hospice, and people can feel they are losing control of aspects of their life. The art room offers a wee bit of autonomy; they have opportunities to create work that has meaning for them and I think that is really a good thing in palliative care, that people have opportunities to learn and grow and achieve as a person.

“It’s really about them and their interests and abilities. It’s important they have authorship over their work. They still have choices, choices that are meaningful for them, and we support them to help that happen.”

Passers-by at Alison’s house in Shawlands on the southside of Glasgow see her sitting at the window painting on a regular basis.

She said: “I’m really excited to go into my sitting room and sit and paint on my own now. People wave to me at the window as they go by, and that gives me encouragement to carry on. It makes the day brighter.”

Hospice work

This is the sort of positive outcome that motivated Jenny in her work at the hospice.

She said: “Art connects to the wider world. The sessions might take place here but what we often find is the spaces in between those sessions are really important, too. People start looking at the world differently, they start looking at their garden or the sky in different ways, they think about how to paint colour, mix colours.

“Often when we meet people in the art room they haven’t made art since school or not at all. Alison does have an art practice, and we have discovered new ways of working, which has been challenging but really amazing as well.

“I first met Alison a few months ago, and she was quite low in confidence. She had an art practice, and said she was into making precise, detailed, illustrative work, which was really beautiful.

“Because of her diagnosis, she has certain limitations now and we had to work together to overcome those. She has been painting with her non-dominant hand and has embraced a more abstract expressive approach. She’s really enjoying making pieces of work.”

Alison’s paintings are now being gathered together for a book which she’ll sell at a special fundraising celebration today organised by friend Clare Harker.

Alison said: “The book was my idea first of all as a way to raise money for the hospice. I thought if I sold my paintings in book form it would encourage more donations. And it’s exciting for me because I’m getting to do something that isn’t beyond me, something that maybe I thought was.”

Clare added: “All Alison wanted to do when she retired was art, and the impact PSP has on her hands she thought she wouldn’t be able to. The hospice has helped her do that. The art room and hospice have given Alison and the family hope.

“People think of palliative care as death, but this is very much about life. Alison wanted to raise funds for the art room because it is seriously under-funded. And we wanted to help her.”

The bond Jenny and Alison made is key to the holistic approach seen in other areas of the hospice practice.

Luan Johnston, of the hospice, said: “Some think of a hospice as a place people go to die – dark and gloomy and sad. Of course there is sadness here but there is so much hope still and joy to be had too. One of our catchphrases is we can’t add days to life but we can add life to days. You can see with Alison how she is hopeful when she comes here. That’s what we’re doing.”

‘Baldy Bane was like a family we all felt a part of’

Still Game star Jane McCarry first got to know Alison Coulson when she began her acting career with Baldy Bane.

Like many, she has rallied round to help Alison while the impact of her illness has gradually curtailed her life. Jane is delighted that Alison is finding hope in art once again, and paid tribute to the legacy of her friend’s artistic drive on the lives of so many.

She said: “Baldy Bane really was like a family. We all felt part of it. You would go to Alison’s house, knock the door and just go in. They really cared about the people who worked for them. And the costumes and sets were incredible.

“We went around the whole country. I saw Orkney, Shetland, down into the Borders, everywhere. I used to joke I was a ‘star of stage and scheme’ because there wasn’t a housing scheme in Scotland I hadn’t seen.

“And there was no sat nav in those days. We asked lollipop ladies how to get to the schools. The fun that we had and the friendships we made are fantastic.

“A lot of schools couldn’t afford to go and see a show, so a show was brought to them. And what we made was good quality. I was an overweight 28-year-old playing a nine-year-old and they all believed it.

“A lot of kids from Scottish schools will remember Baldy Bane. I think it was really important the work that they did and the standard that they kept.

“If you told me I had to lose Still Game or Baldy Bane from my life, I’d probably say Still Game, because of the feeling of lifelong joy that I had from Baldy Bane. It was really special.”

For more information on the Prince and Princess of Wales Hospice art room visit here.

Alison Couston’s fundraiser for the hospice is held today at Shawlands Bowling Club at 2pm