Nicole was first supported by our Wellbeing Team in Michael Sobell House as an outpatient before her symptoms worsened and she came to stay at our Inpatient Unit to receive more specialised pain and wound management. Below she shares her experiences and how her perspective of hospice care has changed since being supported by us.
“Before I was supported by Harlington Hospice, my impression of a hospice was that it was just for the later stages of life, basically you came here to prepare yourself for death. But really it is about helping you manage your pain, or your home care, or your mental health and then you can go home again and if needs be you can come back. It’s basically about helping you manage that precarious time in life where you need that sort of additional help. There are so many different types of support available.
I was aware of this place for years and years but I thought the wrong thing so I just avoided it completely. I remember when my Community Nurse suggested I should be referred to the hospice and I thought absolutely not! In a way maybe it was a good thing that I was in so much pain because I might have refused it again! Before staying in the Inpatient Unit (IPU) I used to come to the art classes here, which was lovely. I also had some complementary therapy which I found very relaxing. I found those helpful because I wasn’t fully at the point then where I needed a lot of help, mentally and physically, but I just needed that little touch here and there so I could go on doing my own thing. I actually went to a breast care seminar in Bristol and quite a few of the ladies there didn’t know what palliative care or hospice care really was. And I said to them, ‘I was in the same position as you ladies and believe me it’s not what you think! You’ve got complementary therapies, mental therapies, talking therapies, pain management. They’re assisting so many different things other than end of life’. And by sharing that proper knowledge with other women I felt like I had contributed somehow to other people and had done my part to help.
After being supported as an outpatient I was referred to the IPU for wound and pain management. I was in horrendous pain and the pain medication as I was given by the Community Nurses just wasn’t working. It was very up and down, sometimes it might work but then by the next day it wouldn’t have any impact. At the time, when I was staying at home, my mother was my carer but the area that my wound covers was just getting too much for her and the Community Nurses to handle. Then my mother had to go back home to Jamaica and the community care that would have been allocated to me would not have been enough. Since coming here I have been trying different combinations of medication to see which one works to alleviate the pain and everyone has just been so helpful.
I have also been receiving support for my mental health. Before I came to stay, I felt like life was quite pointless, I was just very low and confused about what I needed to be doing. But here I’ve had the team of Doctors and Nurses help me to streamline various aspects of my life that needed to be sorted out before anything happened. If there was ever a word I could use that means more than useful I would use it to describe the people who work at the Hospice! They will give examples of what I could do or what I might need to do, so I could follow that. I’ve managed to complete almost all the preparations that I need to make which is a massive, massive relief.
The entire experience has been, I don’t know if you could say a positive one, but I’ve definitely been feeling relief. I’m not scared in the same way that I was before I came. The atmosphere here is like a little friendly community, it’s a home away from home. It feels like you’ve got your own little family here, it’s more than just friends. You’ve got people around you who really care and are very interested in your wellbeing and how you’re feeling and doing. You’re able to have a chat about what you’re thinking, what you’re feeling and things like that.
The people who work here encourage you and look out for you. For instance, if you have to write a letter of wishes. They might remind you by saying, ‘Oh remember that thing you said you wanted to write, now might be a good time to start writing it’. And if they realise that you still haven’t done it then the next day when they come over, they might mention it again by asking how you’re getting on with it. And if you’re like, ‘oh I didn’t do it’, then they will say, ‘Oh today might be a good day!’ So, they do little prompts like that in a subtle and relaxed way. You don’t feel like you’re being pushed. If you’re sitting here and feel like you don’t want to move, they will come around and see that and they will take you on a walk, to ensure that you at least take a few steps up and a few steps down to help with circulation. Just encouraging you to do things better so that you don’t deteriorate too fast.
If anyone ever has hospice care suggested to them and is nervous about it, I would just say don’t second guess it! Everyone working there is there for you, to facilitate this transition that you’re going through, to help you. And they help in a way that a hospital couldn’t walk a mile close to. The feelings that go on in a hospice are so different. You have people checking up on you and having a chat. They know you by name and do small personalised things that make you feel like you’re not just a number on a page but a person. The care that I am getting here is just phenomenal. I feel like I’ve really got people looking out for me and my kids. I think everyone will get something different out of a hospice but there are definitely similarities and it’s that person focused approach that they always take. So just go for it!