Ray Johannsen-Chapman (RJC) interview with Lorraine Gilbert (LG) about her clinical and personal views on specialist community based palliative care.
LG: My name is Lorraine Gilbert and I'm the team lead for the North Brent specialist community palliative care team. And we are based here at St Luke’s Hospice and serve the patients of North Brent, which is a quite a diverse, densely populated community.
RJC: When you talk about specialist palliative care, what do we mean by that?
LG: This question comes up often and it's really difficult to differentiate between specialist and generalist palliative care or end of life. In a nutshell, we don't look after all end of life patients, they can be managed really well by their GP and by district nurses. When the patients become too complex to manage they are referred to us and that complexity may be around symptoms, pain and symptom control, lots of different various symptoms. It could be psychological issues.
RJC: Succinctly explained, how well do you think the GPs understand this process?
LG: We've done lots of teaching with the GPs. We try to engage with them and we've got a GP, clinical lead Dr Lyndsey Williams. She's a real champion, only problem is we can't have her for long enough. Many referrals come from GP's nursing homes, where we have also carried out a lot of teaching and education.
LG: It has also become more complex now. After 20 years as a specialist, I feel that the patient cohort has changed.
RJC: What do you mean by that?
LG: Patients are having more treatment, living longer and so their symptoms are becoming more complex. The service becomes more in-demand and more complex. We have now got a cohort of post COVID younger patients.
Or patients who would have come into the Hospice because maybe their medications were so complex that you needed the Hospice nurses to administer them. The younger patients want to die at home, so the community district nurses are using drugs that they've never used before as they've only been used in specialised hospices. We're having to put more support in, so these patients needing visiting more often and this is putting more pressure on the team.
RJC: How do you grade the level of patient needs?
LG: It depends. So we group our patients in various levels of intervention. A level one intervention is where we might give advice to the GP, set something up and then pull out and discharge them. Level 2, is where the patient would need a little bit more support and advice and maybe we would need to contact them once every couple of months.
Or maybe we've got a patient, who we feel should go right into Level 4, where they're needing a lot of support.
RJC: How long does a visit last?
LG: It is difficult to say. If you think you're driving there, it's taking half an hour, your visit is an hour and a half, then you're coming back and doing paperwork. You're only seeing two to three patients a day. It's not like district nursing. And if you have a new patient that's really complex, you might spend 8 hours doing all the work around that, so you might only see one.
So it's hard to say how often we see them, but there's been a few lately who've needed daily visits from us. And we've worked really well with the district nursing team to manage this.
LG: There are always new challenges, I mean, 20 years I've been in palliative care and I've never worked with the patient like the one that we are going to talk about, who was in a secure mental health facility.
RJC: Please tell me a bit more about that?
LG: So a patient was referred to us. He was gentleman in his early 50s. When the referral came in, there was already heightened anxiety around it because of the nature of where he was in the mental health system.
We hadn't seen him at that stage. We had a lot of information about him, about his psychiatric history, which wasn't our speciality. He was in a secure mental health unit and the speciality to care for his mental health needs. This was a gentleman who was diagnosed with a potentially curable cancer. He had refused treatment because his stress about being in hospitals was just unbearable for him. He was under a mental health section. So this was all new to us. We never had a referral like this before.
RJC: Why do you think you've never had a referral like this before?
LG: I don't know, but in my 20 years for instance, I've looked after very few patients who are under learning disability category. And yet, I know that many learning disability patients tend to die around their 60s. They're not immune to cancers or other diseases that would put them at end of life. So I'm not sure. We are currently looking after a homeless man and that is also new for us. So we are learning all the time.
LG: Going back to the patient with mental health needs, we were all unsure about it, but the unit he was staying in was so welcoming, and the way that the staff looked after this patient was astounding to us, the care and the love that he received from them.
At the time, he had the capacity to refuse his medicines. That was really new for us and frustrating because we wanted to help him, but due to his psychiatric history, he didn't want to take them.
So we discussed him at our Multi-Disciplinary Team (MDT) meeting and raised our concerns and fears and our worries about him not taking his medicines. We needed some clear planning, to clarify what he wanted for his end of life.
We arranged with his psychiatric consultant to come to the next MDT and there was discussion about him coming to the Hospice. We felt, at that point in his life, that the Hospice wouldn't be able to manage him, especially while he was under the care and staying in a secure mental health unit. It was a difficult situation as they were also very, very fearful of him dying on the unit and what it would mean.
RJC: In the secure mental health unit, was he receptive to your visits?
LG: He was very receptive, which is why we wanted him to die where he was being cared for. We saw the care he was receiving there and he was comfortable with the place. So for us and him it was his home. We discussed his prognosis and how long he had and whether it would be easy to predict his future needs. And whether it would be more difficult to do this if there is a deterioration of his mental health. It will be hard to know whether the deterioration from his physical health or his mental health, or both. We also discussed how we could provide some training for the mental health unit.
RJC: Did you provide any training? How did they respond to that?
LG: Yes, we took some post-it notes and got them to write down their worries, fears and questions. So you don't have to openly say what you're scared about and I won't know who they're from. I took them away and we will put together an education plan. They talked a lot about their fears, and they were the same as ours.
Ours were around a lack of understanding of mental health. While they’re fears were around a lack of understanding of specialist palliative care, and obvious sadness around his life ending. We both wanted to do the best for him and our questions were the same. How are we going to best care for him? What do we need to understand about his psychiatric history? And they were saying, well, what do we need to understand about palliative care?
LG: Following this conversation, we had a plan where I was going to come back and deliver a teaching session. And we would do weekly home visits and telephone them twice a week to provide support. They could call us at any time as.
The training was really positive, on visiting him, we did joint visits. We felt completely safe in the unit. Usually you do joint visits and you don't feel safe, but we felt that we would give them a two-pronged approach. So one of us would be assessing his needs and the other one will be assessing the unit’s needs. The support from them was great when he did not want to follow his treatment plan.
We talked about his beliefs and that he kept saying, look, I'm losing weight. Look, I can't do as much. It's because you're trying to kill me. That was his reality. So we had this multifaceted approach, we had education, we had the social and psychological. The mental health staff were fantastic, the way they would speak with him and manage him and listen to his concerns and his fears.
Our advanced care plan for him was almost like a flow chart. If this happens do this. If that happens do that, and we went into every kind of possibility. He died very peacefully. And actually everything we anticipated didn't happen. He said he felt a bit unwell and was going to go to bed early, got into bed and died.
As palliative care nurses, it was very sad but we were also comforted by that. We know we can't change the ending. We can only impact the journey. He was going die anyway and we were pleased that he died in a peaceful way. The mutual respect for the patient and the teams were so important. The collaborative working from the wider MDT really helped. So I think, one of the biggest learning, was that good practice can live outside our speciality. To provide that support at end of life because you only get to do it once.
RJC: It was a brilliant partnership relationship – how do you think this type of working can be progressed?
LG: I remember years ago, one thing that patients and carers always used to say is how you give me so many phone numbers. I wish I had just one number to call. Because it's so stressful when all of this is happening. Who can direct you in the right direction?
Prior to my role now I was the manager on the inpatient unit, and before then I worked at North London Hospice. The reason I went for that job was because they were setting up a new innovation single point of access kind of thing and it was completely new. So I went there as a team lead because they said do what you want with it. That allowed me to scope other services.
And the services I scoped that seemed to work best for the patient were services where they had everybody sitting there. In other words, the nurse specialists would come back from their assessment and instead of having to make a referral to continuing healthcare, which takes an hour, and another referral to a district nurse and another referral to the GP to ask for the medicines.
You would have they had all of those people sitting in the room together, and the nurse specialists will come back and say I need a referral to this or that. Admittedly, they would have to make the referral through their IT system, but because they all use the same IT system, she only had to write her notes once and then tick the box to send the referral. It is so much easier to share information and it has to be better for the people we are caring for.
RJC; Why do you think there are low numbers of people, particularly around some faith groups and other cohorts of people who are referred to community based specialist palliative care?
LG: It's hard to say. I've been to the palliative care learning disability forum and there are learning disability nurse specialists out there. And I think maybe they manage their end of life care really well. But some of those patients must be too complex for them to manage, and I think collaborative working with them would be really good. So maybe they wouldn't need us, maybe we could do some education.
I think COVID helped bring end of life to the forefront of everybody's mind. So I wonder if that's why we've now had a couple of referrals from Saint Mungo’s.
RJC: I would like to thank you Lorraine for all reflections and the brilliant work you did with the mental health unit.