A former musician and artist manager who appeared on Top of the Pops in 1979, and spent time with bands including The Specials and Madness during his “diverse and interesting” career, is adjusting to a new way of life after his “devastating” terminal lung disease diagnosis.
Bob Black, who appeared on the BBC pop music show as a drummer with The Flying Lizards – known for performing the song Money (That’s What I Want) – and managed bands such as The Passions, the Mo-dettes, and Wayne County and the Electric Chairs, said he has had a “fabulous life”.
The 71-year-old, who has three children and is now retired and lives in Falmouth, Cornwall, was diagnosed with idiopathic pulmonary fibrosis (IPF) in June after contracting pneumonia twice and Covid-19.
There is currently no cure for IPF, but Bob is hoping to be prescribed anti-fibrotic medication next year, which will help to slow the progression of the disease.
“I’ve toured the world with fabulously interesting and diverse groups of people, so I can quite honestly sit back and say, I have absolutely no regrets for any of it at all,” he said.
“It’s great that I’m still in touch with members of the bands that I shared youthful follies with across Europe.
“I suppose it is nice to be able to say that, while you’ve hung up your drumsticks, you have absolutely no regrets about the diverse and interesting life that you led.”
Bob first contracted pneumonia in February this year. He contracted it again in June along with Covid-19 and was hospitalised four times.
He was told he may not survive, and it was during his time at the Royal Cornwall Hospital in Truro that he was diagnosed with IPF – a disease he had never heard of before.
But due to Bob’s lung capacity and the National Institute for Health and Care Excellence (NICE) guidelines in force when he was diagnosed, he could not be prescribed anti-fibrotic medication which could slow the progression of his disease and extend his life.
“They were telling my next of kin to come in because they thought I probably wouldn’t be leaving after the second time (in hospital),” he said.
“They’d prepped me for intensive care and I’d signed all the ‘do not resuscitate orders’ and so on because they thought I would simply die at that point.
“But I made a recovery in response to the fabulous antibiotics and steroids that they pumped into me and came out the last time sort of with a plan.
“They told me that, if I had these steroids and reduced the dosage and took antibiotics the moment I thought I might get an infection, that I could then go on to anti-fibrotic medication and I had a reasonably positive outcome.”
Bob was referred to the Royal Devon and Exeter Hospital, in Exeter, for the anti-fibrotic therapy but he was told he could not be given the life-extending medication due to his lung capacity readings.
Until a recent policy change which could prove to extend Bob’s life, the National Institute of Clinical Excellence (Nice) recommended the anti-fibrotic drug nintedanib for people with a forced vital capacity (FVC) value of 50% to 80% of expected normal capacity, but at the time Bob’s FVC was 81% – just 1% above the threshold.
Bob said this was “cruel”, adding: “You know you’ve got a fatal disease; you know you’re going to die of it, you know it’s only a matter of time, and you can adjust life.
“You just have to say, ‘well, you know, let’s live with what we’ve got, for as long as we can, and make plans knowing that it’s not going to improve’.
“But then to be told that this life-extending drug wasn’t going to be offered, was the next point at which we really hit a low point.”
IPF is a condition in which the lungs become scarred and breathing becomes increasingly difficult. It usually affects people over 65 years of age.
Bob explained he and his partner, Tamsin – who is a fitness instructor, had “every intention of being active in (their 80s)”, as they were healthy and had “everything going for (them)”.
But receiving the diagnosis “isn’t what (they) had planned” and they are now having to adjust to a new way of life with the support from family and friends.
“My partner and I, we have to be honest, we go through periods of being very practical and getting on with life, to days of, well, I think you could only describe as sad despair, really,” Bob said.
“We’ve had our weepy days, but generally speaking, we’re well-supported, well-networked, good friends and family, and (we’re) making those adjustments.”
Bob, who is a disability activist and previously worked as a National Education Officer for the Down’s Syndrome Association, is currently taking steroids and other medications, which are keeping him “fairly stable”.
He said he is currently “living a fairly reclusive life” due to the increased likelihood of contracting illnesses over the winter period, but he explained that he can do “virtually anything at the moment” because he has reasonably good lung capacity and no swelling in his lungs.
He can still drive, go to the supermarket, and go for short walks, but he has to do tasks “very slowly” and use an oxygen concentrator, which delivers oxygen through tubes, when he is not stationary.
Bob, who managed a soul band called Falmouth Soul Sensation up until his diagnosis, explained: “You live with this stuff and you know that this is good for you.
“It’s better to have a machine in the hallway that makes a horrible noise and sounds a bit like Darth Vader with a cold… for six out of eight hours of the day and be able to move about, than to not have it and be probably stuck in one room.”
Following a six-year campaign by the charity Action for Pulmonary Fibrosis (APF), the restrictions on doctors prescribing the anti-fibrotic drug called nintedanib were lifted in December.
Nice now recommends that nintedanib should be extended to more people, including those with a FVC of over 80% of expected normal lung capacity.
Anti-fibrotic medications like nintedanib can slow down the build-up of scar tissue or fibrosis in the lungs and can be used to treat pulmonary fibrosis, according to APF.
The treatment may reduce the rate that the disease progresses, but it does not stop the lung scarring completely or get rid of any scar tissue that has already formed.
Following this new recommendation from Nice, Bob, who has two grandchildren, is hoping to be prescribed anti-fibrotic medication in March or April next year, which will help slow progression of the disease and allow him to enjoy more quality time with his partner, family, and friends.
“These delaying drugs will enable me to do those simple things, the 50-minute walk on the seafront, the one trip to the supermarket for milk and bread and eggs – the things that will allow me to maintain some degree of independence for however much longer it gives me,” he said.
“If it gives me an extra six months or an extra year or an extra five years, that’s what we want.
“We don’t expect it to cure us; we would simply want to be able to do day-to-day tasks that you would generally take completely for granted.”
Bob said IPF is a “very individual journey” for each person diagnosed, but he praised the “fabulous” work of APF and said their campaign to end restrictions is a “huge step forward in treatment”.
He said: “The year of decline since diagnosis to the first possibility of getting anti-fibrotics remains very depressing, but the six-year campaign by Action for Pulmonary Fibrosis has been a joy to find.
“There’s (around 32,000) of us who have this condition, which is terminal, who really ought to have access to these things.”
Helen Knight, interim director of medicines evaluation at Nice, said: “Idiopathic pulmonary fibrosis is a devastating condition which impacts the length and quality of people’s lives. Our independent appraisal committee’s recommendation means more people will be able to access this treatment sooner.
“The proportionate approach is designed to develop a flexible and pragmatic approach to appraisals, learning from our experience and responding to the increased need of guidance for the healthcare system.”
To find out more about the work that APF does and the support it offers, visit: www.actionpf.org
