"I want to be involved in my husbands care"

About: Glasgow Royal Infirmary

(as a relative),

When my husband became ill with cancer, I wanted to support him.

He wanted me to support him. Both of us felt that I was not included in any medical consultation. He had by this time had the same Consultant for 10 years, and I had attended many hospital visits with him.

he had undergone fairly radical drug therapy during which I supported him for many months.

However, the Consultant simply took the high ground and held it.

There was no attempt to get to know me, as the main carer.

There was no time given for me to ask questions.

The patient was the only person addressed during the interview.

Results were not discussed.

So my husband wrote to his Consultant, asking that I be included in his care.

No difference.

So I wrote, telling the consultant what a difference inclusion would make to me if I could be included.

No difference.

I feel very strongly that I am the next of kin - my husband has requested my inclusion, and yet still I am kept at arm's length.

I have now given up. Ten years is a long time to attempt to be heard.

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Responses

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

Dear Pioneer,

I am really saddened to read this, as you are right that 10 years is far too long a time to feel that you have gone unheard. I am glad that you have found this other avenue to air your feelings and I can assure you that you will be listened to.

As a Health Board we strongly believe that the loved ones of our patients are key partners in their care and should be involved as much as they, and the patient want them to be. From what you have shared here, it is very clear that your husband both wanted and needed your support, and of course you equally wanted to provide him with this.

While as a Board we are very much promoting the importance of carers, including through training with staff, there will be areas where we need to continue to improve. Your feedback will be passed on to the relevant service, but I will also pass on to some of my colleagues who have a responsibility for the work around involving carers to demonstrate the importance of proper involvement of the loved ones of patients. I will ask them to share a bit about this work and how it is progressing, for you and also for anyone else who may be reading this who is experiencing something similar.

For you personally, I would like to be able to help you raise these concerns more specifically, so that perhaps you and your husband will have a more positive experience in this regard going forward. If you would like me to look into this further, please get in touch with me directly with a few more personal details and we will see how we can take this forward. My email address is lorna.gray@ggc.scot.nhs.uk. Whether or not you choose to get in touch with me, please know that your experience has very much been listened to, and I very much appreciate you getting in touch to share this with us.

I wish you both the very best,

Lorna

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

Dear Pioneer,

Following Lorna's post above, I just wanted to echo her comments and add to this to let you know how your feedback has been used, specifically with the staff in our surgical teams.

This will be discussed at our General Surgery Senior Charge Nurse Meeting for us to reflect on how we can better support carers to be involved in their loved one's care. Your comments have also been fed through to other key members of the Senior Management Team to highlight the very important points you raise.

With best wishes,

Susan McFadyen,

General Manager, Surgery & Anaesthetics

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Update posted by Pioneer (a relative)

Thank you so much, Everybody.

As one of the unseen millions who, I am aware, can have a really tough time engaging with Senior Medical Professionals, I am merely grateful to have been heard.

I do not want to raise a huge issue with this, but the degree of unhappiness caused through has been considerable. It was neither necessary nor helpful.

Many thanks for listening. If I can achieve a small change, it will make the world of difference.