"Kilbryde Hospice (CLAN)"

My husband was diagnosed with a Grade 4 Glioblastoma Brain Tumour in October 2020. He had a very tough 15 months enduring the initial surgery, 4 chemotherapy cycles, the radiotherapy, the side effects and the loss of his independence. It wasn’t easy for the rest of the family (myself and my daughters) to see him change from the strong, capable, supportive and loving husband, Dad and Grandpa to become confined to a hospital bed at home. His personality also changed due to the tumour and his eyesight was also affected.

In May 2021 our GP told us to contact CLAN (Cancer Lanarkshire) who were linked to our local Kilbryde Hospice and an assessment was carried out in early June. They were a lifeline to us as we felt so alone and abandoned especially during Covid and all the difficulties with accessing GP services.

The hospital consultant discharged my husband in August 2021 as the chemo was not having any effect on the tumour and we felt very alone and afraid of the future. We were told to contact the community led teams for help and advice.

We had a videocall from Clinical Admin at Kilbryde Hospice and were advised to think about what my husband wanted to do re care at home etc. We would then put this into the Anticipatory Care Plan booklet for him to complete. This made my husband think about his funeral and he wrote a great deal of memories about his friends, family, growing up and what he wanted to be read out at his funeral. I think it helped him writing it all down.

The team at CLAN proved to be so supportive for us and the clinical admin staff set up regular videocalls, complementary therapist sessions (online), relaxation CD’s and arranged for an assessment from an Occupational Therapist re mobility aids along with a referral to District Nurses who helped with daily personal care later on in his illness. I was so grateful for their assistance as my husband never received any care package at home from Social Work, despite having had an assessment done, due we were told to the issue with staff shortages.

As well as the Anticipatory Care Plan, we were given leaflets on stress, coping with anxiety, sleep problems, coping with dying etc. We were also advised to think about a DNACPR form to keep at home. My husband signed it as he decided that it wouldn’t be in his best interest to be resuscitated if his heart stopped. He also started to go to the Hospice Day Services Unit which he enjoyed but only managed 2 visits as it became too much for him and it was difficult for me to get him there.

Kilbryde Hospice offered me a place on a 6-week Carers online programme (once a week) which I found very helpful, one of the topics being end of life care. The Community Palliative Care nurse we had also worked closely with Kilbryde Hospice.

A hospital bed was delivered in November 2021 for my husband to be cared for at home with an option for him to be offered a bed in the hospice it if became too much for me to cope with.

We were given lots of information from the Hospice and a booklet for my husband to complete called “All about Me” if he was ever admitted to the Hospice. Unfortunately, the offer of a bed came too late, and he passed away at home in December 2021.

I can’t thank CLAN enough for the support they gave us both which was especially difficult during the Covid pandemic. They had all the information we needed to hand, and it made things so much less stressful for me in the midst of coping with everything else. They also helped us have some very difficult conversations on important decisions we needed to make.

The support we got from CLAN and the District Nursing Team was immeasurable. I’ll be forever in their debt at such a difficult time in our lives.