Órla Stewart, Lead Nurse, Haematology, at King’s College Hospital in London, has spent 18 years working with people affected by blood cancer. To mark Blood Cancer Awareness Month, Órla tells us about the impact of the newly opened Leukaemia UK Ambulatory Care Unit which has brought another advance in blood cancer care.

 

Órla, you were involved from an early stage in developing the Leukaemia UK Ambulatory Care Unit at King’s which allows people to have bone marrow transplants as outpatients. How does the unit work ?

Ambulatory Care provides an opportunity for a selected group of patients to receive treatment or part of their care without having to stay in hospital overnight. If the patient lives within 30 minute of King’s they can stay in their own home. Beyond that, the hospital provides a hotel nearby and the patient and sometimes their carer stays there for the duration of their ambulatory treatment. It delivers a range of treatments including bone marrow transplants and chemotherapy that historically would have required overnight admission to our inpatient wards.

How has the Leukaemia UK Ambulatory Care Unit transformed patient care?

The feedback that we’ve had from patients is that they find it psychologically much more beneficial not to have to be in hospital for 24 hours a day and all of them said they would use ambulatory care again. The difference is, that even though they have a model where they are coming up to see us sometimes daily, sometimes alternate days, it is planned. They have an appointment time, they’re seen at that appointment time and they have a schedule of events. For the patient to know exactly what’s happening and when it’s happening has had a massive impact on their wellbeing .


The unit is filled with natural light (pictured, right) even on the dullest of days, and has a lovely view over the park next door. This provides a calmer and more natural environment to deliver care to our patients.

 

Is having a bone marrow transplant as an outpatient ‘easier’ than being an inpatient?

Whether you have a bone marrow transplant as an inpatient or through the ambulatory care pathway, patients can experience a wide range of mostly predictable side effects. However, what ambulatory care offers is the ability to ‘get away’ from the hospital setting. It enables both patients and carers to spend more time either at home or in the ambulatory hotel. They can  enjoy a more comfortable environment and the freedom of being an inpatient.

As the treatment is the same, the side effects are the same and that’s really where ambulatory care has focussed on managing the side effects of the treatments, which are monitored in daily assessments. Patients currently get admitted on selective days, depending on the regimen, and the theory behind that is that it is before most of the side effects will have kicked in. Patients can still get sore mouths, stomach upsets including nausea and vomiting but our nurses are specialists in managing those toxicities and preventing early admission.

Although a bone marrow transplant is an intense procedure, we believe that by having it as an outpatient there are real advantages , such as the psychological benefit of being able to maintain some normality outside hospital during treatment. Patients tend to feel more positive and it is possible that this may translate into faster recovery rates, which will be monitored as the unit evolves.

Are there any other benefits of the Leukaemia UK Ambulatory Care Unit?

In the first year of opening, over 500 bed days were saved. There is still some work to be done in this area, but moving towards ambulatory care means we should be able to free up capacity, which means freeing up more hospital beds.

Do you think ambulatory care is the future for blood cancer care?

I have no doubt that it is. I know that if I needed chemotherapy and I had the opportunity to be at home with my family and my children enjoying our time, as opposed to being in a single room on a ward surrounded by people I’ve never met, I know which one I’d chose. If we can safely and effectively deliver this, and other models around the country have already proven that this is the way we will go, this is a really big step towards delivering that. In 20 years’ time we’ll be thinking, did we really make all those patients come into hospital for all that treatment?

What impact has Leukaemia UK’s support had on the work that you do at King’s?

Historically, the links between Leukaemia UK or the Elimination of Leukaemia Fund, as it was previously known, and the haematology department at King’s are very well known. Leukaemia UK funded the first post bone marrow Clinical Nurse Specialist and she has now gone on to be our post bone marrow Nurse Consultant. Without the support of Leukaemia UK that post would have struggled to get in place at all and now look what it’s grown into. Leukaemia UK has had a massive impact in supporting not only the establishment of the Ambulatory Care Unit, (pictured left) but also the posts involved and the nursing support that it has provided us with. In the current climate I don’t think we would have been able to establish our unit without Leukaemia UK.

As a Lead Nurse in the haematology department, what does your job involve?

My role provides strategic and operational leadership as well as clinical expertise to Haematology Day Unit, Apheresis, Clinical Nurse Specialists, Advanced Nurse Practitioners and ambulatory care in haematology at King’s College NHS Trust. My vision is to make them the best in the hospital if not the best in haematology across the country by pioneering new therapies and offering excellent service provision. This takes time and commitment but I have an amazing team of nurses – hard working, diligent, motivated and highly experienced. It feels like a family. That’s what’s kept me at King’s for six years and what enabled me to take this role, because without the support of everyone around me, I’d fail miserably.  But at the centre of all of that is the patients and that’s what we always come back to. How will it affect the patient? That’s always what we think about.

Being diagnosed with blood cancer is something that no one expects to have to deal with. How do you help people come to terms with their diagnosis?

For me, it’s a privilege to try to have some positive influence on what is a terrible time in a patient’s life. People come from what is ‘normal life’ and suddenly they are faced with this life changing diagnosis. You have to listen to them and try to impart your knowledge to them in a way they will understand, because people get bamboozled at the beginning and they stop listening after the word ‘cancer’. It’s about taking it step by step and dealing with the individual. If they come away from the end of the first consultation knowing that they can call me when they have a question, that I am there for them and their loved ones  then I’ve done my job. I’ve been privileged to be part of so many patients’ journeys and that’s what makes the job worthwhile.

Leukaemia UK is pioneering a Mind and Body team at King’s which puts excellent emotional support on an equal footing alongside clinical treatment. Why is it important to treat the mind as well as the body when dealing with blood cancer?

Emotional support for these patients and their families enables them to be able to cope better with the treatment that can have many toxicities. It makes them resilient, it gives them the coping skills to be able to deal with it. Psychological support is not going to take away the side effects, it’s not going to take away the heartbreak, the sense of loss, the sense of person, but what it will do is enable people to cope better with that.

Supporting the carer as well as the patient is very important from a Mind and Body point of view. I would often have consultations with the carers – always with the permission of the patient – because often they might want to ask a question which they are perhaps afraid to ask in front of their loved one . Carers have a different set of needs and their needs directly relate to the needs of the patient, but they are looking at it from a different point of view. The loss of control is often the main issue for both patients and carers and something many people find difficult to deal with.

People who have a friend or family member with blood cancer sometimes struggle with how best to help them. What would your advice be?

Carers often ask me what they can do to be useful. For the patient, they are the centre of the storm so they’re being told what to do and what’s going to happen, but the carers are running around on the outside, trying to figure out what they can do to be helpful.

There are lots of practical and emotional things you can do. Listening to and being there for the person is really important. You could also get the shopping in, clean the house, pick the kids up from school, visit them on the ward - even if they are asleep, it can be nice to wake up and find someone there. It is about just being there. You could be part of consultations – having another pair of ears is very useful. Individuals remember very little, so having another person present means they will remember more and be more informed about their treatment.

 What are you most proud of in your job?

Being part of a patient’s journey. Being there from the very beginning when a patient is given a life changing diagnosis and knowing that I’ve made a difference. I know I’ve made a difference to patients – not only because they’ve told me, but because I can see them evolve during their treatment with my help and I don’t think anything in my career can ever top that.

We thank Órla and her team for enabling us to share an insight into this transformational unit.

To find out more about the Ambulatory Care Unit follow this link.

To read about a day in the life of an ambulatory care unit nurse follow this link 

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