Aberdeen Royal Infirmary Receives Top Cancer Award
Published: 07/11/2024 14:25Aberdeen Royal Infirmary has scooped a national award for its commitment to patients living with incurable blood cancer.
The hospital was presented today with the Myeloma UK Clinical Service Excellence Programme (CSEP) Award in recognition of its outstanding care and dedication to people with myeloma, an incurable blood cancer which claims the lives of 3,000 people in the UK each year.
Staff were praised for their efforts to improve patients’ quality of life and eagerness to listen to their needs.
The accolade, awarded by blood cancer charity Myeloma UK, recognises hospitals’ commitment to raising the bar for treatment and providing compassionate care.
Dr Stephanie Stone, Consultant Haematologist at Aberdeen Royal Infirmary, said: "We are delighted to be awarded accreditation with the Myeloma UK Clinical Excellence Programme.
“Achieving the award is a real tribute to the hard work and care provided by the whole team within NHS Grampian and we appreciated the opportunity to review our myeloma service and to see where improvements could be made.
“We have recently collaborated to set up a minimally invasive test in Aberdeen for patients with myeloma and suspected amyloidosis and we are piloting ways to better assess and support symptoms of physical and psychological pain within our patients. We look forward to implementing the helpful suggestions provided by the Myeloma UK team and would encourage other myeloma centres to engage with the programme."
Myeloma is especially hard to spot as the symptoms are often vague and dismissed as ageing or other minor conditions.
By the time many patients are diagnosed their cancer has often advanced and they require urgent treatment. This can significantly impact their chances of survival and quality of life.
Rhys Owens, Clinical Practice Services Senior Projects Officer at Myeloma UK, said: “Myeloma is a challenging cancer which keeps coming back and can be really difficult to cope with both physically and mentally, so we were hugely impressed with the hospital’s efforts to ease patients’ burden.
“Staff work closely with departments across the hospital to help patients navigate the many complications caused by their cancer, including heart and kidney issues.
“Nurses Fiona Butler and Laura Simpson, in particular, provide invaluable support during clinics and are always on hand to signpost other services, lend an ear and offer advice to patients and their loved ones.
“To see the team going the extra mile day after day to give those affected by myeloma a fighting chance to live well with cancer is truly inspiring.”
Bob Johnstone, from Rosemount in Aberdeen, was diagnosed with myeloma in April 2017 after experiencing excruciating back pain.
He was 66 years old.
By the time his cancer was caught some of his vertebrae had crumbled. He was initially given between six and seven years to live.
Bob has lost four and a half inches in height as a result.
More than seven years on, the 73-year-old continues to defy the odds and he has now thanked the team at Aberdeen Royal Infirmary for supporting him through the rollercoaster of treatment and allowing him to reach significant milestones, like becoming a grandfather.
“The staff are absolutely wonderful – I’m alive and I’m eternally grateful to them for it,” said Bob, a retired humanist celebrant. “I can’t speak highly enough of all of them. They put you at ease. They take the time to explain everything. I have total confidence in the staff, from the top to the bottom.”
He added: “When I was diagnosed, I had never heard of myeloma. I looked at the GP blankly. Some of the vertebrae had crumbled and had squashed my back. I lost four and half inches and I’m slightly bent now.
“When I was referred to haematology, Dr Preston said, ‘It’s not curable but we can treat it’. And I thought, that’s fine by me as long as you can treat it. He said the average life span at the time was six to seven years which I’m just now past.”
Myeloma occurs in the bone marrow and currently affects over 24,000 people in the UK.
2,000 people are living with myeloma in Scotland.
It is a relapsing-remitting cancer, meaning that although many patients will experience periods of remission following treatment, the disease will inevitably return.
More than half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through A&E.
While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.
It all started in January 2017, when Bob woke up one morning with “extreme pain” in his spine. He saw a chiropractor and, later, an NHS physiotherapist.
“I’d had back pain before but I just thought I had a twinge in my back which was quite normal for me because I was 6ft 2in and, when you’re tall, you do get a bit of back pain,” said the grandfather-of-two. “But then I woke up at the beginning of January with extreme pain. I couldn’t move.”
After six weeks of physio, it became clear something was seriously wrong and Bob was told to book a GP appointment.
His doctor ordered blood tests. Within days, the father-of-two was told he had incurable blood cancer.
Bob started chemotherapy straight away. He received a stem cell transplant in February 2018 and went into remission.
Sadly though, his cancer returned after just 18 months, in the summer of 2019.
“I was disappointed when it came back after the stem cell transplant,” he said. “I was expecting it to last a lot longer than 18 months.”
Bob was quickly put on another treatment, which has kept his cancer at bay for more than four years now.
While he is still doing well, his cancer has been steadily creeping back for the last few months and Bob will likely have to start a new treatment soon.
For now though, he is focusing on spending time doing the things he loves most, and perhaps even picking back up old hobbies.
“I know it’s coming back, it’s just a question of when,” he said. “Although it’s slowly creeping back, they’re keeping an eye on it and I’m still in remission.
“I take each day as it comes. I have a dog and I like nothing better than going into the woods and having a walk for an hour – just being in nature. I find it very comforting and relaxing.
“I used to play a bit of saxophone but when I was diagnosed I stopped, I don’t know why. I stopped doing lots of things thinking back. But now it’s all set up in the spare room and it keeps tempting me, and I’m thinking I’d like to get back to that.
“I’m slightly apprehensive thinking about it coming back but I’ve always been a positive person. There are new treatments now and knowing there are options is reassuring. I’m confident the staff will keep me going. I’m confident I’m going to be here for a wee while.”
Fellow patient Marlene Arthur, from Aberdeen, was diagnosed with myeloma in November 2012, after experiencing excruciating back pain for six months.
By the time her cancer was caught, the disease had started weakening her bones and her vertebrae had begun to collapse. She had to have four stents inserted into her spine.
She has lost nearly four inches in height.
The 70-year-old said: “It was a huge shock for me to find out. I had not even heard of myeloma. We all thought I had a cardiac problem because there are cardiac problems in my family. When the GP told me, I said, ‘You’d better write that down because I don’t even know what it is’.
“As soon as I started going into the unit and seeing all the doctors and nurses in there, I knew I was in the right place. They’ve all been absolutely wonderful. [My nurses] Fiona and Laura are simply the best. I can’t praise them enough. The treatment I’ve had has been second to none.”
Marlene knew something was amiss when, out of blue, she started feeling breathless and experiencing agonising pain in her back.
“I had always been very fit and active but I was getting breathless,” she recalled. “I couldn’t lift things, I had this pain in my back. At first, I thought it was cardiac problems, like my mum. I knew there was something going on, and I knew it was something sinister.”
Eventually she was booked in for an angiogram, which came back clear. But a blood test flagged some abnormalities.
She was quickly diagnosed with incurable blood cancer.
“They discovered that my bones were starting to collapse,” said Marlene, a retired Aberdeen University technician. “I had four stents put in to prevent further compression of my vertebrae. I lost three and a half to four inches.”
Although Marlene’s cancer has returned twice over the last 12 years she is thankfully in remission at the moment.
However, the repeated rounds of intensive treatment and debilitating side effects have taken a toll on her health. She has been hospitalised with sepsis and a listeria infection, and, two years ago, she had to have emergency surgery to insert a rod in her femur.
“It took me a long time to get to grips with the fact that I couldn’t ride my horses anymore,” she explained. “Although I’ve got painkillers and my back support, there’s still a lot of things that I can’t do. I can’t lift anything heavy. Walking is a no-no but I sometimes go out on my bike.
“But you have to learn to live with your limitations and realise what you can no longer do comfortably – it’s tough but you get there eventually.”
While she is living with a huge amount of pain, Marlene continues to make the most of the time she’s been given.
“Although I’ve been through the ringer many times, I feel well in myself and I’m able to do the things I like to do,” she added. “I consider myself extremely lucky.”