"A small piece of information would have made a big difference to me"

About: Beatson West of Scotland Cancer Centre Forth Valley NHS Board

(as a relative),

My husband received chemotherapy and radiotherapy treatment for Head and Neck cancer at the Beatson Oncology Unit in Glasgow in May/June 2014. The care and attention he received as a patient was nothing short of amazing and nothing was too much trouble.

Due to the nature of his cancer he could no longer eat and became extremely ill eventually requiring a nasogastric tube and in patient care towards the end of his treatment.

He was discharged a few days before the end of the radiotherapy sessions with a huge amount of medication and needed round the clock help. At each of the following radiotherapy session we had the comfort of him being checked over by the staff and if he needed any additional help it was arranged.

On the final day of treatment we said our goodbyes and that was that.

At home as expected my husband became increasingly worse with his skin on his neck breaking down and becoming very sore and requiring dressed.

Given that I was a) new to being a carer and 2) worried sick about my husband it was at this point I felt totally lost. We no longer were under the care of Beatson and I really didn't know where to turn. On looking at all the handouts I had received I was not really any further forward.

It wasn't until I was very upset at work that things changed when a friend of a friend who was a district nurse came to our aid. Apparently I should have been referred back to our GP to arrange for nursing directly from them. No-one told me of this at any time. Once the GP were informed, things settled and I was re-assured on a daily basis by the wonderful nurses there.

The small gap in communication was thankfully filled. Thankfully this didn't affect my husband, which was important but it did leave me feeling quite isolated and panicked.

A small piece of information would have made a big difference to me.

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Responses

Response from Lorna Gray, Patient Experience, Public Involvement Project Manager, NHS Greater Glasgow and Clyde

Dear Claak58,

First of all, I would like to thank you for writing to us to give us such valuable feedback about you and your husband's experience. Secondly, I sincerely apologise that your post has not been answered until now - this was a complete oversight and only on reviewing our stories on here for the last few months did I notice you didn't have a response. I'm really sorry for that.

It is great to hear that you both received such a high standard of care throughout the time your husband was being looked after by the team at the Beatson, and I'm only sorry that this wasn't completely mirrored once you got home. I completely understand why you would have felt panicked and isolated without knowing exactly what to do to help your husband, that's totally natural. I've checked with the service what information they provide to patients and their carers during their admission and when they are discharged, and there is a lot of information! This can be really helpful, but also can be quite overwhelming! I've raised with them your point about ensuring people know who to follow up with once discharged from hospital, as that is definitely a key part of what would have helped you at the time. If this could be made clearer within the information provided, it would be a real help, so thank you for highlighting it.

I'm glad to hear that your husband is well on the way to recovery, and I wish you both all the best for the future.

Lorna

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