SOS cancer hotline making ‘a real, tangible difference in the lives of people going through chemotherapy'

Irish Times

3 days ago

An SOS hotline has saved Pauline Doyle, who is being treated for breast
cancer
, from many trips to a hospital emergency department over the past two years.
In this case, SOS stands for Sort Out my Symptoms and it was an initiative that was kick-started by the
Covid-19
pandemic. Five years on, this early intervention service has more than proved its worth in keeping vulnerable cancer patients in active treatment away from extra visits to hospital if at all possible, or at least bypassing the ED.
'It is the nearest thing we have to scheduling non-scheduled care,' says Maria Gillespie, assistant director of nursing for what is formally known as the Acute Haematology Oncology nursing Service (AHOS). It started in 2020, when the National Cancer Control Programme received funding for a designated nurse specialist in each of the 26 hospital cancer centres around the
State
. They were to be available at the end of a phone line for patients in treatment who felt unwell at home.
It has grown as a national network since, standardising the approach to ensure there is no so-called 'postcode lottery' at play in this aspect of care. Identical information leaflets and alert cards are handed out at each centre and are available in 10 languages. An additional 18 nurse specialists are now being recruited to bolster the service in the busiest hospitals.
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'In 2020, we received 1,137 calls,' says Gilliespie. 'Last year, in 2024, we received 21,873 calls. We know it works.'
Pauline Doyle.
Doyle, who lives in Drumsna, Co Leitrim, and attends St James's Hospital in Dublin for her cancer treatment, says the SOS hotline is something that makes 'a real, tangible difference in the lives of people going through chemotherapy'. She was diagnosed at the end of 2023, after finding a lump in a breast and going to her GP.
A mother of two children, aged 10 and 12, she had six months of pre-surgery chemotherapy, followed by radiotherapy after her surgery. She is currently undergoing one year of post-surgery chemotherapy, for which she visits St James's once every three weeks.
'From very early on, and I think this is probably a lot of people's experience, I've had issues with my chemo, and difficulty managing side effects. I've required [hospital] admission a few times. So to have this service has been absolutely invaluable. It has kept me away from the emergency department on lots of occasions.
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I was completely numb and couldn't take it in - I didn't think I would hear the words, 'sorry, you have breast cancer'
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]
'It's amazing to have somebody at the end of the line that knows you, that knows your case, that knows your history. Sometimes it's something small. All you need is a piece of advice – take this medication, take that medication. Other times it's, 'Come in and we'll see you.''
If a patient does need to go in after being triaged over the phone, they can go straight to the cancer ward to be seen by that nurse, who will then get a doctor to review them. Blood tests can be done immediately.
At the outset of treatment, Doyle, who is currently on leave from work as a mental health nurse, was allergic to her first chemotherapy drugs.
'I came out in very bad skin rashes.'
She was ringing the hotline for management of that and the dermatology service was organised to see her as soon as she went in. She has experienced various health issues since, the most recent proving to be a chest infection. Again, the call to the nurse specialist ensured they were all ready for her after she was advised to come in.
'I attended with persistent coughing and they got me a chest X-ray and bloods organised straight away. They could give me the all clear that day, start me on the course of medication and get me turned around and home within an hour or two.'
Doyle does not like to think how long all that might have taken if she had gone through the ED, which she has had to do on occasion if in trouble over the weekend when the nurse specialist was off. While she stresses that the ED staff are fantastic, the difference between going through ED and using the SOS hotline is 'night and day'.
Gillespie is full of enthusiasm for how well the service is working. 'Really strong foundations have been laid and we're well positioned to grow.'
Maria Gillespie, AHOS assistant director of nursing
However, she is also mindful that 'the current model is really vulnerable' because many of the cancer centres still have just one nurse providing the service. There is no cover at weekends or during their six weeks of annual holidays.
'When that nurse goes on leave, the impact is instant,' she says. There are plans to build it up into a 24/7 service, but, in the meantime, they have decided to use the allocation of €700,000 ring-fenced annual funding for the 18 additional posts to strengthen it Monday to Friday.
'We've done a really detailed health needs assessment for where we allocate those,' says Gillespie, who explains how the AHOS works. It was adopted from a system that has been operating in the UK for 20 years.
Anybody receiving cancer treatment, be that chemotherapy, immunotherapy or radiotherapy, is informed by a nurse specialist about the possible side effects. They are also given a dedicated SOS hotline number to ring if they have any worries and issues such as high or low temperature, nausea, diarrhoea, vomiting, fatigue, anorexia, constipation, urinary symptoms. During the phone call they will be triaged through a standardised system.
The next steps are planned according to that assessment. If it's a 'red' symptom, such as a fever, that patient requires an urgent, in-hospital check. 'It can signal an infection and/or sepsis and both of them can be life-threatening for cancer patients.'
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Breakthrough by DCU researcher promises improved 'chemo' with fewer side effects
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If it's an 'amber' assessment, that means the patient has to be seen within 24 hours. However, if the patient has two ambers, then the nurse specialist will escalate them straight away to a red. A 'green' symptom is a side effect that can be managed at home with self-care and follow-up advice.
There are no 'wrong' reasons for using the hotline, she stresses, and over time a trusting relationship builds up between the patient and their nurse specialist.
Video-enabled care is also being rolled out as part of this service, after a successful pilot project that was started in Naas hospital last year. In nearly 20 of the cancer centres the nurse specialist now has a widescreen monitor on which they review symptoms that can be shown by a patient using their smartphone or other device. The ability to view common problems, such as a sore mouth or infected Hickman line (tube into vein), makes a significant difference in the accuracy of assessment gradings.
'That early intervention is key; being able to actually see patients, that prevents the symptom from becoming worse,' says Gillespie. 'It prevents the patient having to call an ambulance the following day and somebody being in a totally different situation.'
Previously, patients may have delayed seeking care because they could not face going through ED.
'There will always be times when patients have to go to the emergency department, if someone has chest pain, for example,' says Gillespie, 'but it's really to avoid as many visits as possible. Cancer patients don't belong in the ED.'
The AHOS staff love their jobs, she says, because they can see the very positive benefits for patients. Every time she visits one of the hospitals involved, she always drives away reflecting on the 'phenomenal' impact that one nurse specialist can make.
'The service shows what's possible,' she adds, 'when you put patient-centred design, national leadership and expert nursing together.'
From her personal experience, Doyle wholeheartedly supports further resourcing of the SOS hotline network, towards a 24/7 operation.
'When you're really struggling with side effects, it means an awful lot to be able to access a service like this that can look after you and that know you, and that you're not waiting in a big system to get through.'