A day in the life....
How a home visit helps assess individual needs
Home visits are an essential part of what a Brain Tumour Support Worker does and can be an enormous help to brain tumour patients and their families.
by David Haq
Brain Tumour Support Worker
I first met John and Eileen at one of my Support Groups. John had been diagnosed with a grade 4 brain tumour and had been told about my Support Group by his Clinical Nurse Specialist.
They arrived at the meeting looking nervous but my group are a friendly bunch and John and Eileen soon relaxed and joined in the conversations. While support groups are not for everyone, they do provide a place for people to meet with others who are on a similar journey to themselves and this has shown to be a great means of support to those who attend.
Unfortunately John was too ill to stay for the full duration of the meeting. I suggested that I come to meet them both at their home to discuss John’s individual support needs. Every brain tumour is different and every patient’s family situation is different, so it is important for me to gain a good understanding of what they need.
My home visits focus upon exploring the patient’s emotional and practical need. I am then able to identify the most appropriate person to provide more specialist support. I also encourage and support patients to speak with their GP about depression and other issues rather than accept that there is nothing that they can do about it.
During my home visits I often see a person who is not only affected by the physical condition of a brain tumour, but they are often highly emotional, confused, in a state of disbelief and extremely anxious. It is almost as if I act as their ‘anchor’ outside the medical side of things. The patient’s diagnosis of a brain tumour creates a shock wave that hits both the patient and their family, often with the patient feeling guilty for ’being a burden’ and family members feeling helpless, or even useless.
When I arrived at John and Eileen’s house, I was greeted by the full family who had a list of questions for me. This was quite daunting. After over an hour with the family answering questions and discussing how they were going to cope, I recommended referring John and Eileen for counselling. I also assured them I’d keep in contact and they said they would come to the Support Group if John felt up to it.
While travelling home I questioned if I had been of much help to John as he was in quite an emotional state and it was clear to see that Eileen was also in a difficult place which made it difficult for her to support her husband.
A few days later I received the following email from Eileen:
I received very upsetting news yesterday, John’s tumour is back with a vengeance, and worse than before surgery. I am awaiting a decision on the next steps.
But an enormous THANK YOU to you as John started engaging with Kate, the counsellor which will be an enormous help through this hard time.
I would like to thank you whole-heartedly for your wonderful and professional support when we were completely at sea.
It is rewarding to know that that initial contact has resulted in John and his family getting the help they needed.
David's post is part-funded by Macmillan Cancer Support