We aim to raise awareness about living with MS – and show that positive change is possible.

A Big MS Adventure.

Synopsis:

A courageous journey from West London to the wilds of the Scottish Western Isles lies at the heart of ‘Our Big MS Adventure’. As wheelchair bound Al Fraser fulfils a final dream, the interweaving frank, emotive stories of three women also diagnosed with Multiple Sclerosis reveal breakthroughs in medical science that could bring hope to millions worldwide.

Directed by BAFTA award winner Tony Dow, (‘Only Fools and Horses’, ‘Stella’, ‘Nighty Night’) ‘Our Big MS Adventure’ has great dollops of humour when you least expect it.

The film is premiered on togetherTV on April 19 2021 at 10.30pm/repeated on April 26 at 9pm. togetherTV is available on Freeview 82, Sky 170, Virgin 269, Freesat 164.

Backstory “Don’t be such a Jessie!” (A long read…)

When I was accepted onto a clinical trial for the first ever pill for relapsing remitting MS in Sept. 2007, the seed was planted for Our Big MS Adventure. Realising I was incredibly lucky to get onto the trial and that understanding of MS was limited, not just amongst the general public but within the general medical profession, I wanted to raise awareness about the condition and possible breakthroughs in treatment.

With my friend Sophie Ziegler behind the camera, filming initially centred around the trial and meetings with fellow MS patients, who were all trying different therapies. Al Fraser, Sophie’s neighbour was the first person I met with MS. He’d been diagnosed with Primary Progressive MS in 1993 and when I met him in 2007, he was paralysed from the neck down and reliant on 24 hour care. Soon becoming a firm friend, every time I saw him I was inspired by his courage, humour and equanimity in the face of difficulties that I prayed I’d never to have to deal with. He really strengthened my resolve and anchored my perspective. As he put it “Don’t be such a Jessie!”

At that time the film’s working title was All About Eve as the emphasis was on staying well to care for my daughter, Eve.

Sophie and I met with award-winning documentary producer Vijay Mavjee, and with his generous help and expert guidance created a trailer to try and get the project commissioned/raise funding.

A new take: A miracle cure?

I made a podcast featuring Al for the Guardian exploring difficulties faced by people with long term degenerative conditions due to changes to the benefit system.

Iain Chambers, the producer/director of the podcast mentioned that George Carey, who created both Newsnight and Panorama was working on an idea for a documentary featuring what appeared to be a miracle treatment for MS. Would I like to meet up?

Kindly offering Sophie and I the chance to team up, our project was a documentary called The Choice, featuring George’s friend Michael Glickman who was certain he’d experienced a miracle cure and Sophie’s friend Alex Gibbs. Both had tried so called ‘Liberation Treatment’, proposed by Dr. Zamboni, who’d reported a positive impact on his wife’s MS upon widening the veins in her neck. Should I stay on the trial or try Zamboni’s ‘miracle cure’?

The idea fell on stony ground.

Besides, having gained enormous respect and trust for the medical team on my clinical trial, and now used to the re-assuring hospital visits, I decided not to go for ‘Liberation Treatment’, which sadly in Michael’s case turned out only to have short term benefits.

Another new take: The miracle of Revive MS Support

With Vijay’s continuing encouragement, Sophie and I carried on filming. We both went to Copenhagen when I was asked to speak to the press about the benefits of participating in a drug trial at ECTRIMS (a worldwide medical conference focused on Multiple Sclerosis and its treatment). Here Tessa Lush who was looking after us, introduced me to the CEO of Novartis UK Frederic Guerard. He explained how financing worked and how our film might be better for being independently made. The film’s aim in raising awareness about MS, showing not just its impact on people over a number of years but breakthroughs in understanding, treatment and care would usefully highlight the work of MS charities.

By this time during one of our many conversations I’d asked Al: “If you could go anywhere in the world, Al, right now, where would you go?” He said “Iona in the Scottish Western Isles.” I was surprised. “Because” he said “that’s where I had a golden summer, the year I turned 18.” Having spent childhood holidays on the island, Al returned alone that year to work on a croft for family friends Annabel and John MacInnes and every week he went to the dances in the village hall with a local girl, ‘Margaret ‘Mags’ MacDonald.He dreamt of seeing his friends and the island once more.

Sophie and I wanted to help Al make his dream come true and make the journey from West London to the Scottish Western Isles despite the odds stacked against him. Al liked the idea of his adventure being the spine of our film and so we began work on Take Me To Iona.Realising that Al would need treatment in Glasgow that would enable him to continue on to Iona, and mindful of Fred Guerard’s advice, I contacted Scottish Charity Revive MS Support.Discussing our project with his team, the CEO Iain Morrison agreed to come on board and help make Al’s dream come true as it meant raising awareness about MS and their extraordinary work.

So near and yet so far?

And so thanks to Revive MS Support and Novartis we set about getting a team in place to film Al’s journey. Sophie and I were quite un-prepared for what it would take to move a wheelchair bound, paralysed man, who should not travel for longer than 2 hour stretches,from one end of the country to the other. On top of that, we would have just two specific days to film on Iona. But the crossings to the islands though short are over an expanse of water notoriously beset by sudden bad weather and subsequent ferry cancellations. The chances were we’d get to Mull, but not to Iona. We’d be so near and yet so far.

Getting the team together. A race against time.

Time was of the essence as Al’s ability to speak was fading fast. Discussing various logistical problems with my friend Tony Dow, an experienced BAFTA Award winning director – he said, “I’ll help you mate, if I’m free.” It turned he was, except for the first day of the shoot and he suggested our mutual friend Marc Ortmans as co-director. Marc stepped on board, not just with directing, but providing invaluable production advice and assistance. Sophie insisted we hire a cinematographer and I got in touch with the brilliant Olly Driscoll whom I’d met on a different project.

Olly, (who worked on major Hollywood films) agreed! On top of that he came up on the recce to Iona with Marc and I to grab footage of locations. As well as scouting for these, we needed to check that accommodation really had the required accessibility for Al – and to test how the journey would work for him before he actually undertook it. It was great to meet Al’s wonderful friends, who still farm on the island. In Glasgow we met too with Iain Morrison and the remarkable team at Revive MS Support.

The Crowne Plaza in Glasgow met Al’s very specific and necessary requirements, having a room with a hoist and an accessible shower as well as an adjoining room for his carer Edek. There was nowhere free with full en-suite fully accessible shower access on Iona, (access to the shower needs to be wide and flat!) although John Maclean at the Youth Hostel there was incredibly helpful as were the team at the St. Columba Hotel. We decided we would all stay at the Mull Hotel and Spa, where although there was no hoist, (we’d bring one) there was an en-suite fully accessible bathroom for Al, again with an adjoining room for Edek. Though this meant travelling across Mull for two days running (and relying on the ferry from Mull to Iona running too) Al would be well rested, clean and comfortable!

Whilst in Scotland on the recce, Marc and I met with Grahame Watson, Fran Mullin and the team at the Glasgow Marketing Bureau, (now part of Glasgow Life) (Stills from film) who were incredibly helpful, offering help with dedicated transport and with accommodation. We also met Liz Buchanan at Visit Scotland who offered help and assistance with all travel, not least in the shape of her assistant Alison Feakes who would join the crew to ensure everything went smoothly. Andrea White at the Crowne Plaza offered five-star service and help with food, accommodation and logistics, (including organising the delivery of a special mattress for Al to relieve pressure sores) and Frank Tiffany, the head concierge offered expert assistance. Rachael Crawley at Allied Mobility in Glasgow promised help with the perfect means of transport for Al.

We returned from the recce in Scotland blown away by everyone’s the support, kindness and forethought. Eight years on from the seed of an idea and filming on the hoof – the principal filming was finally going ahead.

In between the recce and the shoot, Olly was booked for a Jason Bourne film with Paul Greengrass, but having secured a donation of the most desirable camera for the duration of the shoot – an Arri Alexa from Panavision, he recommended Sara Deane with whom he’d worked on Captain Philips. Sara proved to be completely brilliant, and in turn she spoke with Panalux who kindly donated lighting equipment.

A sound recordist I’d worked with on a BBC documentary recommended AJ Butterworth, who remarkably happened to be free on the earmarked dates and my friend Felix Taylor stepped in to help out with logistics and as camera/digital technician.Sophie would be filming on second camera. Our team was in place.

Other organisations also offered help, including: S+O Media, Caledonian MacBrayne Ferries, Sixt Rent-a Car with a van for the crew/ equipment. Nicola McNaughton made it possible for us to film at Glasgow Airport and the ground staff there, particularly Carol, Ivor and his colleague, made Al’s day.

It was an extraordinary logistical enterprise that fell into place thanks to the help and goodwill of a lot of people and organisations. And our trip became as much about issues of accessibility, inclusion and the kindness of strangers as it was about Al’s determination to realise his dream, despite the ravages of MS.

The shoot “It’s an epic journey you’ve made”.

Arriving in Glasgow, on his first night at the Crowne Plaza, Al’s mum came for dinner, courtesy of Al’s great friend Heather (Photo & Still from film) who drove them both through rain, snow and sunshine from Edinburgh. It was a great end to a day that had included Grahame Watson presenting a bottle of single malt to Al, and earlier, Al singing with ground staff at Glasgow airport. (Photos 25) The next morning at Revive MS Support, Al received a therapeutic massage from Katie Blair, who eased the pain in his neck and shoulders caused by the previous days’ travelling. Katie gave us a deeper insight to difficulties faced by people confined to a wheelchair and the essential and extraordinary service that Revive MS Support provides. Here a range of therapies are available that ease the symptoms MS. And all free of charge. It was a humbling and inspiring experience.

Then it was back to the airport to pick up Tony and a race along the shores of Loch Lomond and on through the breathtaking Highlands in the wind and rain to Oban to catch the last ferry for Mull. It was a relief to arrive at the scenic Mull Hotel and Spa, where we knew Al could stretch out in comfort after a journey that had been unavoidably longer than 2 hours. For our two-day stay, we were treated to the marvelous hospitality of Neil and Hilary Goldsmith, who run the hotel. (Photo of dinner 30) And if the stormy weather suddenly worsened, it was a good place to be.

The next day dawned bright and sunny. We would get to Iona. Travelling along single-track roads to the ferry at Fionnphort the scenery was uplifting. The days either side of our time on these islands were wet and stormy. But for those 48 hours, the clouds parted and whilst it was cold, the sun shone from a clear blue sky. As we made the ferry crossing, Iona lay before us outlined in beautiful crystalline light. It was an emotional moment for all of us when Al, delighted at being on the island once more, was overjoyed to see his friends. As John said to Al, unintentionally summing up what we were all feeling, “It’s an epic journey you’ve made!” And when Al met Mags in the village hall, 40 years after he last saw her he made her laugh “You haven’t changed much!”

Travelling back to Glasgow on a narrow road by loch Lomond a driver in a massive motor home smashed the side mirror of the crew van and didn’t stop. It looked unlikely that the crew would be able to travel back to London as planned. But once back at the Crowne Plaza in the early evening, finding nothing could be done at that time, we discovered that we were all going to be treated to dinner at Hutchesons Restaurant by Grahame Watson and his team. We were taken there in ‘our’ signature pink cabs, and had a wonderful, memorable dinner. It was the perfect way to celebrate the end of the shoot. On returning to the hotel, we found the indomitable Frank Tiffany had fixed the mirror. And Andrea White was standing drinks all round to toast our remarkable journey.

Beautiful, but not enough.

Once back in London, the logging, transcribing and editing began. The footage was beautiful.My stepson Max cut a trailer, my friend Russell Weekes tweaked it, and we realised that to tell the story of MS, Al’s journey would need to serve as the spine of a film that was wider in scope. We also wanted to feature more of Revive MS Support which had moved to new larger premises.

My friend Naudene Leisegang an outstanding editor whom I’d met through George Carey, then cut a trailer – which her husband Mike graded – to show how that wider story would be told. Marc and I met with Iain at Revive MS Support who secured further funding, first from Novartis and then from Biogen and leading medical communications company Oxford Pharmageneisis.

Thanks to the tireless help of Mei Go and Richard Tew at Novartis, Olly Driscoll, AJ Butterworth, Tony Dow and I, found ourselves in Basel in January 2017 (Still from film) at Novartis HQ filming an interview with the then Global Head of Drug Development and now CEO worldwide, Vas Narasimhan. (Photo Still from film) I wanted to know more about Fingolimod, the trial drug I was taking – as well as upcoming research straight from the horses’ mouth. Events took an extraordinary turn when purely by chance it turned out that Pascale Burtin, the scientist who’s intuition, determination and dedication had instigated my trial – the first human clinical trial of Fingolimod – was in the building.

I had been on that trial through all its different stages for 10 years. The drug had played its part in keeping me healthy and mobile. It was an amazing opportunity for me to meet Pascale and thank her for her work and perseverance, which had had such a positive impact on my life. And for Pascale, it was, she said ‘amazing to see that the results were real’.

And so an extraordinary encounter was added to the scientific information already provided by my brilliant doctors, Richard Nicholas and Omar Malik at Imperial NHS Trust by my wonderful MS Nurse Caroline D’Arcy, (Photo Caroline 38) and members of the clinical trial team. But we needed more information on stem cell research and on non-medical therapeutic solutions. And in order to reflect the incidence of MS (it’s generally diagnosed in three women to one man, we needed two more female contributors.

Back up North

Reading award winning novelist Maria Hyland’s full and frank accounts of her diagnosis with MS, I got in touch with her. Maria, turning out to be just as frank and brilliant in person as she is in her writing, agreed to take part. Co-incidentally, I was introduced (by my friend Jo Rendle) to Sophie Corbett an actor/campaigner and presenter who’d been recently diagnosed. (Photo of Sophie and Maria sent to me by M 39) Sophie, warm, funny and engaging, also agreed to take part. Her father, Ronnie Corbett, had brought a family home on the East coast of Scotland, not too far from Edinburgh, and thanks to the help of her sister Emma and Emma’s husband Pete, she was happy for us to film her there.

Olly was called away to work on another Bourne film and Tony’s old mucker from Only Fools and Horses the brilliant award winning Johnny Rhodes took on the role of cinematographer.

Leading scientist Anna Williams (Still from film) at Edinburgh’s Centre for Regenerative Medicine, is pioneering research into brain stem cell therapy. She agreed to explain what this meant for MS treatment to Sophie and I. And so the team got together again for another trip North of the border (thanks to S&C coach hire!) only this time via Manchester where we met with Maria.

After discovering about breakthroughs in stem cell therapy from Anna, Sophie and I went to Revive MS Support and took part in classes there, learning that simple everyday exercises can seriously help to manage symptoms of MS. (Still from film)

Back in London, I met with brain health expert Tom Potter, from Oxford Pharmagenesis who helped me understand more about my brain. He explained how with simple tweaks to diet and exercise, we can all keep our brains healthy and stave off a raft of diseases, as well as improving symptoms of MS.

And the logging and transcribing began again. 18 months later we took the opportunity of filming again with Sophie Corbett and Maria Hyland, to see how they’d fared on their different treatments. All of us reported significant positive breakthroughs. Our MS was at bay. And and the film, finally was ‘in the can’.

The edit could begin. Naudene was unavailable, but found us Francis Buchanan who with Tony out of seemingly endless hours of footage put together a rough cut, then a finer cut, which Naudene becoming free then tweaked, working in music from Ian A. Anderson, Kathryn Tickell and Rachel Newton, who all kindly gave their permission. Al is dead set on using Maggie May, because he used to dance to it with Mags on the island.

Together TV

A Big MS Adventure, made over so many years is the result of the kindness, commitment and perseverance of everyone who made it happen. An extraordinary collaborative effort.

We are now excited to be working with the brilliant team at Together TV on a cut to be broadcast in April 2021.

Our hope is that this will not just raise awareness about MS but will in itself be a source of hope for all those who are living with this increasingly prevalent disease.