This diary was written in August 2019

08:30 I arrive at Sobell House. First stop is our Sobell advice line and triage office to check for any calls that may have come in. I then grab a cup of tea and head to the office to prepare for the day’s visits and appointments. I check on our patient records system to make sure I’m completely up to speed on their care.

09:30 My first visit is at 10am in the centre of Oxford. This is a follow up visit to a gentleman named Pete who has had a very recent diagnosis of lung and bone cancer during an admission to hospital. I last visited Pete a week ago and he was unable to get out bed due to his pain levels. During the assessment we suggested for him to start on a different pain relief medication, which his GP prescribed. Today I am keen to see if this has helped. Pete was also feeling very low in mood last week. He was feeling very shocked about his recent diagnosis and so were his family.

10:00 I arrive at Pete’s house and his wife answers the door. She mouths to me that he is ‘much better in himself’. Pete tells me that his pain levels have improved, and it’s clear to see that the medication has helped. He’s been managing to get up out of bed and help his wife peel vegetables in the kitchen. This is really lovely to hear. We aim to help our patients live as normal a life as they can by managing complex symptoms, and this is one of those ‘normal activities of daily living’ that Pete was unable to do a week ago. I ask for Pete’s consent to refer him to our Occupational Therapists at Sobell. Our OTs will help support Pete with his mobility and provide any equipment that may make things easier around the home.

Pete’s mood has lifted and he has regained his appetite a little. I encourage high calorie alternatives to some of his normal choices (e.g. substituting milk for cream) to up his calorie intake and help him regain a little strength. He is also delighted to hear he can enjoy some chocolate cake! Pete and I discuss the things he would like to achieve in the near future. He explains he would love to visit his local pub and have a beer! We talk about how this can be facilitated.

Pete mentions to me today that ‘he doesn’t want to go back in to hospital ever again’. This initiates a discussion about Pete’s preferences with regards to his care. He explains to me that he would like to be cared for and die at home. We also have a conversation about resuscitation. This is never an easy conversation to have. We discuss that if his heart were to stop beating, resuscitation is unlikely to be successful. During this conversation it becomes apparent that it is not his preference to be resuscitated. I reassure Pete that I will inform his GP of his wishes and we will ensure he has relevant documentation in his home should it ever be required.

Pete’s wife expresses her gratitude for our input and thanks me for explaining everything to them as best we could last week. She feels that they are well supported now. She gives me a huge chunk of Irish fruit cake wrapped in tinfoil and a big hug as I leave!

11:00 I sit in the car and document today’s visit on my laptop. I also make the appropriate referrals and call Pete’s GP to update them on the effectiveness of the new medication and today’s conversations.

12:00 My next visit is in a nursing home on the other side of Oxford. I’m visiting a lady called Jane and her son Daniel for the first time to introduce myself.

Jane has had a very recent diagnosis of bowel cancer, and has been suffering with some unpleasant symptoms as a result. My colleague made some adjustments to her medication last week which have really helped, however she is now experiencing other side effects. I suggest a slightly different regime to the one Jane is on currently, to help ease the symptoms. I discuss this with Jane, Daniel and the nurses and explain the changes.

Jane is feeling very low. Her son leaves the room so Jane can talk about how she is feeling. She’s struggling with accepting her diagnosis, she is also afraid and worried about her family. I sit and listen and allow Jane space to express her thoughts and emotions.

Before leaving I arrange a follow up visit for next week. I also encourage Jane, Daniel and the nurses at the nursing home to call our advice line at Sobell should they have any concerns. I also reassure Daniel that we are here to support him as well as his mum at this difficult time.

After leaving Jane and Daniel, I again document the visit on my laptop on the car, update Jane’s GP and make the appropriate referrals.

13:15 Back at the office! I grab a quick sandwich and have a piece of that lovely fruit cake in our garden at Sobell. I see the ward nurses wheeling two of our inpatients out in to the sunshine on their beds and I note their smiling faces. Sometimes the little things can make such a difference.

13:50 I head over to our outpatients’ room and prepare for my 2pm appointment with John. He’s currently visiting day services.

14:00 John’s GP had relayed to me earlier in the week that he is struggling to understand the methods of administering some of his medications. We discuss this in detail. John has also been struggling with dressing a wound he has, however our nurses in day services have already come up with a wonderful solution to that this morning! We discuss how he is managing at home and day to day. John is managing well but tells me his wife Emily is struggling with coming to terms with his disease and she is also worried about the future. We arrange another appointment for the following week for both John and Emily. We’ve never met Emily and we want to make sure she is also well supported at this time.

15:15 I return to our triage office and check for any more calls in our correspondence book. There’s chocolate in the office! Wonderful!

15:20 I sit at my desk to call two patients. My first call is to a patient called James that we have seen many times. He has been having radiotherapy and this has been very effective. Two weeks ago, he stepped down his pain relief and is feeling very comfortable. I approach stepping back from his care until a point in the future that he may need our services again, he can then be re-referred to us by his GP. James is more than happy with this plan.

15:55 My second call is to a lady called Margaret who has left me a message. She has concerns about administering her monthly injections. She feels she is getting weaker and she is worried about continuing to administer them herself. I offer a referral to the district nurses who will be able to assist her with this and she feels this will help. I also discuss this new fatigue with her and explore any potential associated causes for this. I also check her most recent blood results. I e-mail the referral to the district nurses and will follow this up tomorrow with a call. I also document my calls.

16:55 I go back through my day’s visits and calls and make sure that I have actioned everything I need to.

17:00 I pack up my desk ready for the journey home. It’s been another busy day, but another day that I feel I’ve helped in some way. I’ve worked alongside our multidisciplinary team to manage patients’ complex symptoms, with the goal being to improve their quality of life. If we can enable a patient and their family to live a life close to the life they lived prior to a life limiting diagnosis, then we have achieved our goal.

Please note that names have been changed for anonymity.