Joan's story

Ever since the idea of this blog was first mentioned to me, I knew that one of the things I wanted to do was to talk to a lot of the people involved with Grove House, and record their thoughts.

Joan Follett is the Nursing Services Manager, and also manager of the Day Hospice. She was the person who first showed me round Grove House, and subsequently assessed me as a day patient. Joan is a dedicated professional with a remarkable capacity to empathise with the people she is talking to. She talks sympathetically, but directly, openly and with humour. For me, Joan represents the very heart of Grove House, and I wanted to know what makes her want to be there. So here is ...

Joan's story

I always loved nursing, and as my family grew up I always wanted to nurse because, well, I love my children, but I always wanted something else as well, didn't want to be just a stay at home mum. I was lucky enough to get a job as a night sister. And it worked for us as a family.

Both my parents had died from cancer, and I had helped to nurse both of them. At that time, my children were getting older, and I decided I wanted to specialise in palliative care. So I paid for myself to do a university course. I liked the idea of seeing the person as a whole, for me that was good nursing, not just how to treat a painful arm.

Part of the course involved doing placements, and I did a placement one day at the Hospice of St Francis. That was in 1994. To my surprise, I was told a new hospice had just been built in St Albans, and they were looking for nurses. There I was, living in St Albans, and it was the first I'd heard of it. So I rang, but I didn't have any confidence, because I felt I might not have the right experience. The Sister I spoke to sounded encouraging, so I put in the application.

I'll always remember that day. It was a Friday. No patients about, just an empty building, and I walked in for my interview. I actually had a very well-paid job, so I wasn't really desperate to get a job. I just wanted to see what it was like. But it was the feel of the building, something about it just hit me. I remember in the interview - I was in the private sector, so I wasn't National Health - they said, would you be prepared to be in Grade D, or whatever it was? I didn't know what Grade D was, it could have been anything, but I said "Oh yes". That's how much I wanted the job.

I started off at 2 days a week as a staff nurse and, just as the building grew and the services grew, so I grew alongside them. I don't think anyone could be in the same job for 15 years doing exactly the same thing, but, because my job has changed, I still feel energised and motivated, and I still feel I can offer something. And there have been so many changes here, but all good changes. If you'd said to me 14 or 15 years ago "Joan, what do you do all day in the Day Hospice?" I'd have to say to you "Keith, I'm always really busy but I'm not sure what I do." But ask the nurses now what they do, and they can tell you exactly, about the care plans, the assessments, all of that. So it's become much more professionally based, more clinical, which is much better.

When I started here, there were only 2 nurses and a sister, and it was a very social model at that time. We had 20 patients coming in each day, and we were busy. But people came - they were never discharged - so people were there sometimes for 6 or 7 years. Can you imagine? We used to do outings, and it was all very social. That played a part then, and I would say it was right for those days.

Five years after we opened, Daniele Nicolas took over as Chief Exec. Daniele came in 1999, and she had great vision. Before that we were just like a cottage industry. We'd started off, it was absolutely lovely, and we made our mark. But when Daniele came, one of the first things she did was a service review. And it was quite painful, because in a service review you have to look not only at what you're doing, but also at what you're not doing. And what we identified very clearly was that we were only offering the day hospice. That's all we had; unless you wanted to come for the whole day, you couldn't have anything. So in 1999 we developed our Outpatients Department. We've still got Day Hospice, which is a very central part of Grove House, but we've now got a range of outpatient services. We have a doctor's clinic. I do the nurse clinic. There's complementary therapy. There's counselling. There's physiotherapy. There's Canceri. There are lots of other things where people can just come in and have what they want, possibly just for an hour. So now we are meeting more needs. Cancer can affect any age, and in the Day Hospice we decided to devote a day to younger patients, which is a Friday. As Grove House grew, Daniele passed on the baton to Mark Lister, who has brought his own special skills to the job of Chief Executive.

When I first started in Day Hospice, we had one big circle of chairs in the day room. That was very ... well to be honest, people felt it was like an old people's home, and it always gave me the feeling that people were being "done to". It wasn't right. So when I had the chance, I managed to break it into 2 circles, 2 smaller circles, and I'd love to write an article (but don't write this down, because it will put me under pressure to do it!) calling it "Breaking the Circle". Now, it's more active. People go off and have their relaxation class, go off and have their complementary therapy, they have a nurse assessment, they do this, they do that. It's their day.

That was a very hard thing to do. The patients didn't like it. The volunteers hated it, because, well, nobody likes change. The staff hated it even more because they got the aggro from everybody. But I stuck to my guns. I thought, give it time. Because I was so sure I was right. And it has worked. People come in, they feel they can go out if they choose to do something. It's their day. It's little things like that. Yes, it can be quite hard. It can be a difficult choice. Which group do you join? But it's not an inflexible rule. Numbers go up and down. We decide at the start of each day, because we plan each day. If the numbers are small we make one circle.

We recognise that coming into Day Hospice is difficult, when you're new. So we don't have more than 2 new people starting on a day. One thing we found early on was that everyone wants to go and make the new person feel welcome. And we actually got feedback that some people find that quite off-putting, so we manage it carefully. We assign a volunteer to each of them, to show them round. This means they have somebody looking after them for the day instead of everybody just homing in on them.

Because we look after people at any stage of their illness, of course, a lot of our patients are discharged. It's about having a care plan, knowing what we're doing for and with the patient. So we do discharge people, when they're ready, but we always leave the door open for them to come back. I think that's the ideal way for our service. People dip in and out of any of the services as and when they need it. And we're very, very successful. Successful in the way that people feel comfortable about coming back. I often liken it to having children. You love and nurture the children. You want them to go, but you also want them to be able to come home at any time, to feel welcome, and that's our aim. To say we're here, if and when you need us, if and how you need us. It doesn't necessarily mean come back for the same service, but once you're in Grove House, there's a wealth of support. It's just about knowing what is appropriate at the time.

So that's where I started off, in the Day Hospice. It's been a great learning process for me, and for all of us. Now, I manage the Day Hospice. I don't actively work in there, but I always know what's going on, because of course I have to. I run the nurse clinic, which is for assessment of new patients and also for outpatients, the people who choose not to come for the whole day, for whatever reason, but still want the support of a nurse. I'm finding more and more of a role for myself in supportive care. Diagnosis of a life-threatening illness can shatter people. It can knock their sense of security. It's about helping people to put it in its rightful place, as a part of life, not the focus. It's about coping strategy.

One patient found it difficult to go back to work. How do I go back to work, how do I face them, how do I answer questions? It was about looking at what was best for him. Of course, I can't tell people what to do. I try to help them explore the possibilities and come to their own conclusions. I was able to encourage him to go to his line manager and say, this is how I would like it to be managed. Rather than going in facing the unknown. He wanted people to say how are you and leave it at that. Not to ignore him. Not to make a big thing of it. So he was able to set the scene, and he found that very helpful.

Another role I have at the moment is that I'm the chair of the National Association of Day Care Leaders. This has given us a very big voice for policy making. One of the problems we have is about proving the value of the services we provide. And it is a problem nationally. Because there's no tick box for a patient to say, this is how much better I feel. There's no scientific evidence, no research to say this service is actually benefitting the community. But we just know it does. The fact that people have a safe place to come to is brilliant in itself. To have to go through something by yourself is sometimes very hard. But knowing that there are other people who are going through the same things that you are is an enormous help.

That's what we provide here. And we get a lot of feedback from patients about the level of care. When the nurses and the volunteers say "how are you today?" they genuinely care. Time is given. It isn't just how are you today and isn't it a lovely day. It's about building confidence. The nurses are competent, they are capable. And that's what the patients want. They want the caring, but they also want someone who knows what they're doing. That balance has to be there.

It's not like other jobs. I remember my son, many years ago now, saying Mum, I hope when I get a job I'm as happy as you are. Because it isn't about money, is it? It's about job satisfaction. It's about feeling you're making a difference. And you know, everybody who works here - admin, fundraising, clinical, they all choose to be here. Lots of people have said to me, without me asking, that they walk through Grove House, and it's just a feeling they can't really describe, but it's a good feeling. I felt that, very much, that it's a good place. People say to me, oh, it must be a very sad job, or, I don't know how you can do it. But actually it is just so rewarding. It is a good place.

I feel I've changed my whole attitude to life. I don't worry about tomorrow. I can honestly say that. And I'm not a fatalist. Well, I am a bit, but I don't get depressed or anything like that. What will be will be, and we'll deal with it as and when it comes. But it's no good worrying, because that energy is wasted. It's not going to change what's going to happen. Of course I get worried. About lots of things. But I'm able to say, no, that's going. I'm not going to let it prey on my mind, because it's not going to change. I'd rather think about today. I know what's happening today. It's the here and now that's important. That's the way we work best.

Postscript to Joan's story

I think it is a tribute to Joan's dedication and commitment to her job that she spends part of her holidays researching how people do the job she does in different countries around the world. When I started talking to Joan, the subject was supposed to be about her trips to study palliative care in China and India. Joan, it wasn't my intention to pull a fast one on you! That part of the story is equally fascinating, and will be coming up next. Watch this space.