Patient Support programmes (PSPs) came into their own during the Covid-19 pandemic, providing patients with at-home care and support at a time when hospital attendance was inherently risky. Yet not a lot is written about their benefits to both patient and the wider health system, given the efficiency and enhanced quality of life such programmes provide.
Published in October 2020, the National Cancer Control Programme document “Guidance on the Provision of Parenteral Systemic Anti-Cancer Therapy and Supportive Care in Community Services” highlighted the value of PSPs and sought to provide guidance on their establishment and provision.
“Delivering systemic anti-cancer therapy closer to the patient’s home and away from the acute hospital setting is acknowledged internationally as important for both the patient experience during their cancer treatment as well as for relieving capacity issues in hospital-based day wards,” the guidance notes, mirroring one of Slaintecare’s 1 strategic aims of providing care closer to patient’s homes.
One such PSP has allowed patients with relapsed multiple myeloma the option of being treated in the comfort of their own homes, without the inconvenience and associated risk of hospital visits.
Patients with multiple myeloma are treated with a combination of drugs and those enrolled on the PSP receive one of these as an infusion in the home. Ordinarily, treatment with this combination would involve hospital visits on three consecutive weeks out of every four; the PSP, however, reduces this burden of hospital visits to every second week, or in some cases just one visit every four weeks.
As part of this Home Infusion Service, a nurse collects the patient’s infusion from the hospital pharmacy, then travels to the patient’s home and administers the treatment at a pre-arranged time.
The flexibility this offers means the patient has more time at home and no longer needs to rearrange their day around traveling to and from hospital.
Geraldine, an advanced nurse practitioner in haematology at one of the referring hospitals, is effusive when it comes to outlining the benefits of the PSP. She says it has transformed the patient experience since its introduction in 2018.
“The most important thing, from the patient's perspective, is that they just have to come into hospital much less frequently, with everything else delivered at home. It has vastly improved their quality of life, it's much better for them to be at home. They are more comfortable, and they don’t have to deal with the logistics of travelling to and from hospital. Before they would have to have a family member bring them and collect them so they might have to take a half day or day off work, while there was also the cost of travelling, car parking and all those other things you don’t think of,” Geraldine says. Patients travelling larger distances would often have to pay for B&B or hotel accommodation when being treated on consecutive days, she adds. “Their whole lives were nearly consumed with their treatment.”
Although there are other examples of similar PSPs, they remain quite rare within the Irish health service. Yet Geraldine says it couldn’t work more smoothly, with all stakeholders benefitting from this approach to therapy. Early reservations about the logistics of providing at-home infusions soon dissipated as the programme got up and running. She explains that patients are established on their treatment within hospital, before then signing up to the at-home service. “You have to make sure that they’re ready for it. Sometimes they need a little bit longer in the hospital, just to get confidence. But there have been no hiccups, it’s very streamlined, and it’s run very efficiently. It really ties into the whole idea of patient centred care. There’s a lot more autonomy over their illness and treatment.”
This was evident even before the Covid-19 pandemic struck. Now the provision of at-home care takes on an added impetus, with the Irish Health Service Executive (HSE) committing to caring for as many people in the community as possible. “From the Covid-19 perspective, it’s so important. These patients are so immunocompromised, and they can be terrified going into the hospital. And now they can’t even bring anyone with them into the hospital when they get their treatment and that’s really hard. By reducing these visits, it has made a huge difference and of course the at-home service takes every precaution going in and out of patients’ houses. They wear their PPE and they’re gone within an hour if not less. Patients can have whoever they want with them while they are getting their treatment at home.”
Noel is just one of those patients. Having first been diagnosed with multiple myeloma in 2009, he had an autologous stem cell transplant that year and has been on a range of treatments since then. He is on his current treatment for almost two years and said it is “working great”. Not only that, but the way the care is delivered via the PSP has greatly improved his quality of life.
Previously, Noel had to travel from his home in Easkey in Sligo to Galway University Hospital for his treatment, staying overnight between his two consecutive infusion treatments. “It was awkward, but it had to be done,” he says. Now the at-home nurse comes twice a month. Noel attends Sligo University Hospital just once a month to have blood tests done, his blood pressure taken, and weight checked.
He says that given the risk of any infection for multiple myeloma patients, the at-home service is infinitely better than regular hospital visits. “It’s so much easier this way. It’s better for me and the hospital. The nurses tell me exactly when they will be here, and they are always on time. It’s no problem at all and much better than having to go to hospital.”
Noel has been living with multiple myeloma for almost 12 years. “I am doing great. I couldn’t do a day’s work but then again, I am 74! I go out for a walk every day at a good pace and it is no bother to me. I feel good.”
In the era of shared decision-making, the availability of an at-home service is having a big influence over treatment choice, and Geraldine says a number of patients have transferred their care to Sligo simply to avail of the at-home service. There is no reason why a similar service couldn’t be rolled out for any number of other treatments, she adds. “We would love to have more at-home services up and running.”