Addenbrooke’s Hospital has scooped a national award for its commitment to patients living with incurable blood cancer.
The haematology team was today presented with the Myeloma UK Clinical Service Excellence Programme (CSEP) Award in recognition of its outstanding care and dedication to patients 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 adapt and 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.
Helen Goad, Haematology Clinical Nurse Specialist at Addenbrooke’s Hospital, said:
We are both proud and delighted. Thank you to all members of the multi-disciplinary team, without whom we would not be able to deliver the excellent care that has been recognised.
We are very grateful to our patients for the support shown through this process in the form of feedback and encouragement. Achieving this award will help further reassure patients and their families that they are cared for safely and to a recognised high standard endorsed by Myeloma UK.
Helen Goad
Rhys Owens, Clinical Practice Services Senior Projects Officer at Myeloma UK, said:
Myeloma is a challenging cancer that can change on a dime, so we were hugely impressed by Addenbrooke’s efforts to support patients and make their lives that little bit easier. For example, the hospital’s MyChart portal helps patients keep track of their test results, letters and appointments and allows them to send messages and questions directly to their doctors and nurses.
Because staff know all too well the physical toll that long stretches of intensive treatment can take, especially for people living further afield, they’ve rolled out an outreach chemotherapy service at two GP practices on the outskirts of Cambridge staffed by Addenbrooke’s nurses. Patients can also use a drive-through service for blood tests to help reduce hospital visits.
Rhys Owens
Patient Jane Finbow discovered she had myeloma by chance, back in May 2018, after trying to donate blood.
She was told at the donor centre she was severely anaemic. Tests soon revealed her symptoms were caused by incurable blood cancer.
By the time her myeloma was caught, the mother-of-two had suffered some kidney damage.
Five years on from her diagnosis and after four and half years in remission, her cancer has now sadly returned, and she had to start chemotherapy at Addenbrooke’s earlier this month.
Knowing everyone, from her nurses to her consultant, will do everything they can to get her through treatment once again has been a comfort, she said.
I was not worried about starting treatment again – I had absolute confidence in Addenbrooke’s,” said the 65-year-old. “I’ve had the same consultant all the way through. There is such a continuity of care. And the staff are all exceptionally kind. These are people who are trying to make your experience as pleasant as it can be. The other day, the receptionist recognised my voice and greeted me by name before I even said who I was. Nothing is too much trouble.
Initially I thought my experience was the same as others treated in other hospitals, but I know now from speaking to other patients in other parts of the country that it’s not the case. Just last week, the Addenbrooke’s specialist nurse made sure I had a red card which will get me immediately through A&E if I ever need to go, because A&E is a more risky place for people with myeloma. It’s very reassuring, especially now. I know this doesn’t happen in many other hospitals.
Jane Finbow
The hospital’s patient portal has helped Jane regain some sense of control amid the uncertainty of living with incurable cancer. Not only does it allow her to contact her team at the touch of a button but to access her latest test results and prepare questions before each consultation.
“Everybody with myeloma lives with uncertainty – from one test to the next,” she said. “We know the cancer will come back but no one can tell you when. Things might change at any time. Having all the test results in one place and learning what signs to look for, what things to worry about or not worry about, helps. It gives patients a bit more control and certainty. Now, when I have an appointment, I can go in knowing what the results are already and it enables me to formulate some questions. It completely changes the consultation.”
Myeloma occurs in the bone marrow and currently affects over 24,000 people in the UK.
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.
In hindsight Jane had been feeling unusually tired for months prior to her diagnosis. She found gardening especially draining and had started to neglect her beloved garden. But she just chalked it up to feeling “a bit lazy”.
Things came to a head when she went to donate blood and was told she was anaemic.
She visited her GP who said her symptoms were so severe she “could be dead within two or three months”.
“The GP I went to see led me to believe I could be dead within two-three months, it was extremely shocking,” she recalled. “But if I’d not gone to donate blood, I’m not sure at what point I would have gone to the GP. I didn’t think so at the time, but I’m lucky I went to donate blood.”
She added: “Being told it was ‘incurable but treatable’ was a shock. I was under the misapprehension that I was on a downward spiral, that it would get worse and worse. But of course, I know now that’s not what it means. It’s not a slow and painful death. You can be treated back to a better quality of life.”
While Jane, now 65, was unable to go back to work as a social worker post-treatment, she has put her experience supporting the most vulnerable to good use by volunteering as a Peer Buddy with blood cancer charity Myeloma UK, and offering a listening ear to fellow patients struggling with their diagnosis.
She also runs the Cambridge Myeloma Support Group, which is open to anyone affected by myeloma.
“I try to offer hope and reassurance to other people with myeloma,” she explained. “I find it mutually beneficial. Other patients get the psychological and physical impact of myeloma without having to be told. I know how reassuring that can be.”
Although her cancer has come back, she hopes to be in remission again soon. She said:
I’m still here. Relapsing hasn’t fundamentally changed my approach. There are more treatments than ever before so there has never been a better time to have myeloma. I’m hoping that this treatment will keep the myeloma at bay and that I’ll be able to get back to a place where it doesn’t dominate my life. Having such a kind and sensitive team on my side is very reassuring.
Jane Finbow