The second in our Movers and Shakers series of Parky Profiles is a philanthropist who is twenty years into her Parkinson’s journey. She’s a fan of Liverpool FC, an enthusiastic theatregoer who was on the board of the Royal Shakespeare Company for many years, and she taught her Dutch neurologist the phrase ‘up shit creek without a paddle’. There are many surprising sides to Dame Susie Sainsbury but we were most taken by the decision she made to keep her diagnosis secret from everyone including her husband for three years.
Susie had gone into publishing straight from school and had a career which included launching Jackdaws, collections of historical documents in a folder, designed to make history fun for children. (I remember having the 1066 Jackdaw which included facsimiles of scenes from the Bayeux tapestry to tell the story.
She gave up her career after marrying David Sainsbury and having three children in quick succession. Later, she started a new career as a supporter of the arts, overseeing the rebuilding of the RSC’s Stratford theatres and involved in a similar project for the Royal Academy of Music. It was for this work that she was made a Dame.
Meanwhile her husband David, who at 27 was made extremely wealthy when the family firm Sainsburys floated on the stock market, had launched his charitable trust and was becoming the most significant player in British philanthropy. Later, he joined Tony Blair’s government and in 2005 he was Science Minister when Susie, troubled that she was dragging her left foot, visited a neurologist:
”He said, ‘Parkinson's no question’. And I said, ‘How long can I hide it for?’He said, ‘Probably a year. if you’re lucky.’ “
But she managed to hide it from everybody for three years - including her husband:”David was in government, having a very interesting time and having to work extremely hard,” she says. Jeremy Paxman asks for whose benefit she kept this secret:
”Mine largely, I was able to come to terms with it in my own way. I needed to adjust to something that was going to be life changing for me without adding a strand of worry to the life of my family who were all busy doing exams, or, in David's case, running the DTI (Department of Trade and Industry.”
We are all somewhat taken aback by Susie’s determination to battle Parkinson’s on her own - or to be more accurate treat it as a minor distraction. which must not be allowed to get in the way of family life.
In the end, one of her daughters noticed her tremor and she was forced to tell all. So how did her husband react?
”He was amazingly not resentful that I kept it so secret. He knew that I'd done it as a way of not worrying him when he has an enormous amount on his plate.”
She bats away my suggestion that this amounted to an extraordinary act of self-sacrifice on her part and we move on to how she dealt with her Parkinson’s. Exercise has been the key - she had already been a gym user and now, as she is about to turn 80, she has a trainer who comes to her house three times a week at 7 in the morning.
This is on the advice of her doctor, the Dutch superstar neurologist Bas Bloem. He is the latest in a series of very eminent doctors who have treated her - she freely admits that her wealth gives her opportunities not open to most people with Parkinson’s. Professor Bloem, co-author of the book Ending Parkinson’s Disease, is an evangelist for exercise:.
“He’s encouraged me to keep up a very strict exercise regime. He actually believes if you exercise an enormous amount through your life you won’t get Parkinson’s.”
Susie and Professor Bloem have also collaborated on a scheme called PRIME (Proactive and Integrated Management and Empowerment in Parkinson’s Disease), funded by money from the Sainsburys’ charitable trust and designed to improve Parkinson’s care and make it more holistic. It’s a joint initiative between Bloem’s institute in Holland and an NHS team in Bristol.
“They are looking at integrated treatment- not treatment for but support for Parkinson’s patients within the community. There's a strong belief that a great many patients can be helped by having access to nurses in the community who can advise so they don't have to wait.”
The scheme has been delayed by Covid and there are complexities in running a project spanning two very different healthcare schemes but Susie seems determined to push ahead - and as integrated care is one of the demands in our Parky Charter, the Movers and Shakers are glad to hear it.
As for Susie’s own journey with Parkinson’s, her mobility has been increasingly limited by dyskinesia, a side effect of the drugs she takes. When we recorded this episode she was about to head to the Netherlands for a novel treatment which could improve matters, the installation of an apomorphine pump. By delivering a dopamine agonist direct into the bloodstream, the pump should provide a more reliable way of geting the drug to her brain.
I spoke to Susie via a video call shortly after her return to the UK after having the pump fitted and she was moderately optimistic that it was working:
“When it's working well - and you've got me in a good patch - it's very effective. It reminds me of what I used to be like.”
But it involves attaching a needle to the pump each day, quite a fiddly process and she gets advice on a daily basis from nurses paid for by the pharmaceutical company behind the treatment. Susie admits this is an expensive process which may mean it does not become widely available.
Back in the pub Paul Mayhew-Archer had asked her whether she and her husband might decide to spend all of their money funding Parkinson’s research - Susie indicated quite firmly that their charitable trust had a wide range of causes to which it donates and wouldn’t be diverted by her personal situation.
Then Jeremy Paxman asks whether, given the wide range of research going on, she is optimistic:
“I don't think anything dramatic is going to happen that's going to help any of us, “ she says, ‘but I do feel optimistic about the long term future.”
“So our children may not get it,” says Jeremy and round the table we all nod our heads.
Susie Sainsbury has left us with some cautious optimism about the battle against Parkinson’s, not so much for ourselves but for the next generation.
Very interesting, as ever. Thank you, and many congratulations on your honour, much deserved!
Quite a character.