“Working as a Clinical Nurse Specialist at St Clare Hospice means that I am a part of the Community Palliative Care Team, visiting people at home, in Residential/Care Homes as well as Community Hospitals to assess to see if they could benefit from the support of St Clare. We work 7 days a week between 08:00 and 16:00. In addition to this there is a 24 hour advice line.”
“A Clinical Nurse Specialist is a nurse who has trained to specialise in a certain Clinical field. At St Clare, our CNS’s specialities are in palliative care; however, we also have other expertise in different fields. My background is respiratory conditions, so I’m able to provide knowledge and advice to people on that. A CNS is highly trained, having undertaken relevant specialist courses. We usually act as a key contact for GPs and district nurses looking for Specialist Clinical advice.”
“I myself have been a CNS for 16 years, the first ten of which I was a MacMillan nurse, but I have been nursing for 38 years in total.”
“My current role is visiting people in their homes in Uttlesford and other localities in West Essex as necessary, to see if they could benefit from the support of St Clare. They might have been referred to St Clare via their GP, the hospital, a district nurse, or perhaps they made a self-referral directly.”
“We will make contact with the patient/relatives to see if they want us to come and visit them, and if they do, we will find a mutually suitable to see them at home. We discuss how we could try to alleviate any physical symptoms they might be experiencing, but also whether or not as a family they could benefit from psychological support, too.”
“We look at the whole picture with people – not just acute symptoms – so that we can support them in every way possible.”
“As part of an assessment, we often discuss details of their family, to really get an in-depth picture of their story and what is going on so that we can help them as best we can.
“Hospice care is about supporting the entire family throughout their journey together, so we also find out if family members or Carers could benefit from support, too.”
“This is an ideal opportunity to discuss accessing support through other Hospice services such as our Inpatient Unit, Family Support Team, Day Therapy services, Physiotherapy and Occupational Therapist, or our Hospice at home Service.”
“I often describe the role of a CNS as putting all the pieces of the jigsaw together. It’s about helping to answer questions.”
“The work that the district nurses, GPs and Hospital Specialists do is invaluable, and all working together for the benefit of the Patient is vitally important. Being able to sit down with someone at home, finding out what is particularly of concern to them is essential. We are then able to unpick everything that is going, and begin to address any symptoms as well as any fears and anxieties.
“We provide dedicated time for people to ask us questions about what is going to happen next in their journeys, empowering them to navigate the different care services they could be benefiting from in the community.”
“If it’s something we don’t necessarily know, we signpost them in the right direction. Having time to focus upon this is a real benefit to people.”
“Spending time with a patient like that helps to bring everything together, and to work towards ensuring that things are as good as they can be. The main thing to find out is what a person really wants, so that we can then deliver that. We can tell them more about their condition, and offer them advice on what may be best for them. For example, if they’re on their own at home and feeling lonely, our Day Therapy service could be a real benefit to them as they can meet like-minded people. We offer the advice to support them to make decisions.”
“However, a lot of the time, people are fearful of the hospice. They don’t want to go anywhere near it because they think it means doom and gloom – ‘if you go in, you don’t come out’. When people feel that way, it’s always worth finding out what their understanding is of a hospice, and where they may have got preconceived ideas from.”
“It might be that they heard a negative story about a hospice 20 years ago – yet, if we compare a hospice 20 years ago to a hospice now, we’ll find that they are two very different things! Perhaps they’ve heard something negative on the news or the television, and that’s what is making them anxious.”
“More often than not, once I reassure people and show them pictures of the hospice, providing them with information and a website link they can visit to read other people’s stories, they gain a greater understanding of what it’s really like at St Clare.”
“We can also offer to take them on a guided tour of the hospice so that they can come in and see what it’s all about. I’d sit down for a cup of tea and a chat with them after, and show them that it really is a nice environment to come to.”
“Some people are worried about visiting the hospice because they’re not sure what it really is, or what services we offer. They don’t realise that you can come for a stay on the Inpatient Unit for a week to get your symptoms under control, have access to a physiotherapist, occupational therapist, and our family support team.”
“Once people know the truth about hospice care, they feel much more open to it because they know it could make a real difference to their lives.”
“We also educate healthcare professionals on the service that we offer here at St Clare, so that they can tell their patients if they might benefit from our services. We invite them to come and see the hospice so that they can advise their patients well, having seen the hospice for themselves first. We also meet with GPs and district nurses once a month to discuss how we can help people who we are mutually supporting. Working alongside all Health care Professionals is vital to ensure we all work together to make the best of available Community services.”
“After we do an assessment for a person, it doesn’t necessarily mean that they would come in to St Clare – no one is obliged to come to the Hospice at all. We look at what may be the best thing for somebody.”
“This can include referring them back to their GP for something or liaising with the hospital involved with that person’s care. Any decisions made will have been discussed and agreed.”
“Sometimes, we make multiple visits to people and their families/carers, developing an ongoing relationship, which is why they find us such a positive source of support. We also encourage them to take advantage of St Clare’s 24 hour advice line, so if a CNS isn’t around that they can still talk to someone, and get advice. We’d then follow it up as soon as we could, so the support network is there all the time, every single day.”
“Personally, I’ve got so many stand-out moments that have touched me from when we’ve made a big difference to people, that it would be impossible to pick out a favourite.”
“The fact that we can make such a tangible difference to people so easily, just by being there to talk to and having the knowledge to answer questions, is hugely rewarding and satisfying.”
“There are occasions when you go into someone’s home and it’s very tense and people are frightened. Sometimes, being discharged from another care setting can feel like ‘being pushed out to sea on a rowing boat with no oars’. Yet, when they open up to us and we can find out what services would be best for them personally, it provides a huge relief and helps them to know what is going to happen and be in control.”
“A person might also be finding it difficult to talk to their loved ones about how they’re feeling, but we can help them to do that by offering emotional advice. We also offer practical advice on how they can help themselves – for example, in alleviating symptoms of breathlessness. Sometimes it’s just recommending things like breathing techniques, the use of a mini-fan for their face, or different medications they could try. We can refer on to other hospice services such as the Breathlessness Management group run by our Day Therapy Team.”
“People sometimes get so low that they can’t contemplate carrying on with life; they don’t do the hobbies they used to do, and they don’t feel the same way anymore. They are afraid because they don’t know how things will change or what things will be like in the future. Sometimes people feel that they are sitting and waiting for something to happen. Having the support of the Hospice, can often promote a sense of security.”
“We encourage people to recognise what they can do, even if they do it in a slightly different way. After our reassurance, they often feel empowered to go out and to maintain some sense of normality.”
This can change the whole dynamic of the family, too, as their relationships begin to improve with their increased confidence.”
“The key message that hospice care stands for is that our support is entirely based on what a person wants. We listen, and offer choices, and plan with people the type of care that they wish to receive – whether it’s at home or at the hospice.”
“If we talk about end of life care, we encourage people to record it officially in documents such as Advanced Care Planning and Preferred Priorities for Care. This then ensures that other healthcare professionals know what that person wants.”
“I think that although many people in the community have a fear of hospices, when they access our service their perception changes.”
“Whether they encounter paid staff or our excellent volunteers, they will soon realise what a positive place it can be. Hospice Care Week is one of the ways in which we can address those misconceptions and dispel them for good, so that we can help more people whose lives could be seriously improved with our help.”
“In my 38 years of being a nurse, working at St Clare is the best job I’ve ever had – without a doubt. It’s satisfying, it’s rewarding, and you make a difference.”
“At a hospice, we don’t see people as an illness. We look at people as individuals. We look at people as a part of their family network. We look at the whole package. And that is what palliative care is all about.”
– Erica