"My experiences with the Transitional Oncology Care Team"

Transitional Oncology Care Team.

Following a diagnosis of Stage 4 colorectal cancer in early 2022 (untreatable, palliative chemotherapy the only option) my initial feeling was of isolation. One is given a huge amount of printed information about all the services available, but because one is suffering from shock about the diagnosis this is hard to assimilate. ULHT seemed to assume an in-depth knowledge of the workings and interactions of the various departments by the patients but we don't have this; we feel scared and isolated by the diagnosis. Over the course of the last 2+ years I have accumulated 3 pages of an A5 notebook of names, telephone numbers, and departments, but when something happens which do you contact? With my treatment being spread over Lincoln, Grantham and Boston hospitals, each with their own separate departments, knowing who to contact was a major problem and I invariably picked the wrong one.

Things changed when contact was made with Annette and the Transitional Oncology Team. Now I had one person I could contact who would direct me to the correct unit, and who did a lot behind the scenes sorting things out so that treatment could be rapid and effective. As an outsider, trying to get coordination between departments was impossible, but the the Transitional Oncology Care Team were able to achieve this and so got things done. One example was when my next course of chemo was being delayed because the doctor who had released me from a stay in hospital had forgotten to sign the authorisation. I was getting nowhere trying to get the chemo approved so contacted Annette. Within a short period of time Annette had found another doctor, obtained authorisation and the delayed chemo could re-start.

One was treated as a patient, not a number, and the feeling of relief knowing that someone was there who knew your problems and what to do cannot be underestimated. Unlike most departments who promise Someone will get back to you, Annette and her team always did. I know the NHS is overstretched, but lack of communication is a major issue for patients as it engenders feelings of helplessness and isolation. Annette and the team ensured this didn't happen and it is doubtful if I could have survived the last 2 years without their activities.

OAU

Another department that worked well, OAU was effective at sorting things out when something happened. Along with the Oncology Care Team team they could coordinate the activities of other departments to get rapid treatment when there was a problem. For example, one day I was suffering stomal bleeding and severe pain in my back. Annette arranged for me to come to OAU and had arranged for a stomal nurse and a surgical doctor to examine me, and take bloods. The stoma did not look good (black areas) so a specialist was brought in. The upshot was that the stomal problem was deemed not serious (it cleared up in a few days) and my pain relief treatment needed revision- new medication was prescribed which significantly reduced the problem. As an outsider it would have been impossible to coordinate the activities of the various departments, the Oncology Care Team and OAU together could and the problems were resolved within 24 hours. Throughout, I was kept fully informed of what was happening which was reassuring.

A&E

Unfortunately the only way into hospital is via A&E, which is badly overstretched. On my first visit (prior to knowing about Annette and the full range of services available) I simply turned up at A&E as instructed on one of the many pieces of paper given to me. It took 28 hours before I was taken to a ward. During this period I was placed in a side room where I was forgotten about, so had little to drink and no food (gluten intolerance). As I was suffering from suspect food poisoning (diarrhoea & vomiting) this adversely affected my electrolyte balance and 2-3 days were spent stabilising these before treatment for D&V could start. It turned out to be a side-effect of the chemotherapy. I now know that much of this could be avoided had I contacted the Oncology Care Team  and OAU first prior to A&E who could have intervened, but this information was buried in the mass of paper handed out at the beginning.

Expanding the remit and size of OAU to include the initial triage for cancer patients could have reduced much of this, and maybe freed up space in A&E. With 1 in 2 people now experiencing cancer at some time in their life, using OAU as the triage for cancer patients could have major benefits for all concerned.

Summary

1. Simplifying and prioritisation of the information given to patients at the outset of cancer treatment would be enormously beneficial, with the role of the Transitional Oncology Care Team as your first point of contact being stressed, instead of just another unit in ULHT. Once I had discovered this my quality of life was transformed- there was someone there. Of course, much of this depends on the calibre of the staff and I have found Annette exemplary.

2. Having one point of contact streamlines the process for both patients and hospitals. Every time you phone the wrong department you are wasting nurse's time.

3. Communication is critical to patient well-being. Lying in a bed for hours on end wondering what is going on, or if you have been forgotten, is stressful.