"Informed Consent to Treatment"

About: NHS Greater Glasgow & Clyde

(as a parent/guardian),

My son was diagnosed with cancer in 2010, it’s a long story which has been investigated in some detail by the health board concerned.

He coped with chemotherapy well and we felt that he was making good progress when he was put on a drug to stop the sickness.

Although the details of this remain distressing for the family and we are still unhappy with the results of the investigations into our complaint, our feedback is about the issue of informed consent.

We strongly feel that, when medication is started or changed the patient should be told about the possible side effects. None of this in our opinion was explained to my son or to us.

It is well documented that there is an entitlement to informed consent, it’s a right not a choice.

Throughout the last weeks of his life we wanted to know answers to questions about how the treatment affected him and we remain concerned that we feel we were not told about side effects to medication he was given.

So we would urge patients and carers to make sure they ask the questions and insist on their rights to know about potential side effects and exercise informed consent to treatment.

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Responses

Response from Paul Cannon, Head of Administration, Acute Services Division, Greater Glasgow & Clyde NHS

Thank you for your posting, at the outset I want to express my personal and sincere condolences on your loss.

You make a very important point in your posting about informed consent and it is a principle that is shared throughout NHS Greater Glasgow & Clyde and reinforced at every opportunity. Informed consent is a critical part of the doctor / patient relationship and patients must know the risks and benefits of any procedure before this is undertaken, and your posting serves as a reminder about how important that principle is.

Thank you for taking the time and trouble to provide your views on this very important topic.

Paul

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Update posted by scottishlady729 (a parent/guardian)

So much has happened since my original posting and this response. I am unable to include all that has happened and the struggles myself and my family have been through following my sons death.

I do however feel that such is the current situation that I would now like to make the following points. Its been really difficult to carry on trusting the NHS and the health board due to a number of things that has happened.

The board denied that there had been a video made of my son, taken without my permission, when he was not able to give consent. It caused me and my family great distress when I subsequently found the video embedded on a file which was on a CD sent me, following a freedom of information request for all the information complied following the formal complaint.

Secondly the review made by the ombudsman, made several recommendations following their review of the care of my son. The review stated clearly that the family were asking for an apology from the health board. I have not received such an apology or a reason why that apology could not be made to me and my family. There were a lot of details of his care where I felt that I did not have answers to questions about the causes of death,, I am left with thoughts about what happened to my son, without anywhere to take these questions.

Its hard to explain the effect that this has had on me and my family especially his sister who loved him so much and misses him still. So I am left wondering and have felt that I wanted to come back on the site to update on my situation. What I feel I want for my family is something that will bring closure for us all.

Response from Niall McGrogan, Head of Patient Experience and Public Involvement, I work for Dr Margaret Maguire, the Director of Nursing, here at NHS Greater Glasgow and Clyde, NHS Greater Glasgow & Clyde

Thank you for coming back to Patient Opinion and sharing your thoughts and your feelings, since you last posted a year ago.

I am so sorry to hear about the death of your son, and the terrible loss you, and your family, have experienced. I won’t pretend that I can truly imagine the grief you must be feeling as a mother who has lost her child or of your daughter who has lost her brother.

In your posting, you make specific reference to particulars of your son’s case and the dialogue you have had with the Ombudsman. I have discussed your postings with colleagues and studied the Ombudsman’s review that you mention. The Ombudsman did not uphold the complaints raised and it is difficult to see, following this review, what further information NHS Greater Glasgow and Clyde could provide or steps that we could take that would help you achieve the closure you want and deserve.

From reading the review, I was struck by the complex nature of your son’s case and how his health deteriorated so quickly. This must have been so difficult for you, your husband and your family. I also feel that it is so hard to understand the death of a young person, whose life should be in front of them. However, there are other organisations which can help in these most distressing of circumstances. Exploring the tragic events you have been through with someone trained and qualified to understand fully how you feel may be of assistance to you. If you would like me to discuss with you these options and provide you with contact details, please contact me direct on 0141 201 5586. I would be happy to access and share contact details of such organisations which I believe maybe be able to assist with this process.

This month sees the fourth anniversary of your son’s death. At this time in particular, I want you to know that you and your family have the condolences of all I have spoken with here at NHSGGC. Our thoughts are with you. I know that the memory of your son will never recede and that you, and especially your daughter, will miss him evermore. I can only hope that over time in recalling him, the pain you feel does lessen and that you remember him as he obviously was, a truly loved son and brother.

Yours sincerely,

Niall McGrogan,

Head of Community Engagement

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