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Care Opinion

My dad and his cancer journey.

Posted By Maisie81

"My dad and his cancer journey."

About: Beatson West of Scotland Cancer Centre Forth Valley Royal Hospital / Oncology unit

(as a relative),

My dad found out he had tcc cancer 18 months ago. I originally put in a complaint to Forth valley hospital, Larbert as it took him so long to be diagnosed due to staff being on holidays etc, it took months and as you know with cancer there isn't a great deal of time. By the time he was scanned again it had spread to his liver and lungs. He then got chemotherapy for a few months and for the following 6 months he was doing great.

It's the next part of this complaint that really mattered to me. He got offered a trial with Beatsons cancer care, Glasgow, so he went on it but did not work as 3 months later the cancer had come back. 

At his last appointment he was offered the immunotherapy trial and he had heard such great things about this he wanted to go on it. He had a biopsy 1 month later, when he was already starting to deteriorate and then didn't hear for another month from them and they phoned to say to come in and talk about it. My dad can't even get out of bed now due to his pain and is not eating and is suffering so much. When beatsons phoned they said they didn't know anything about it. I just feel if he had got some more chemo when he started to feel ill again then he may have got quality of life, instead he was in the care of no one, as beatsons weren't helping him and only cared about trial, the hospital thought Beatsons were caring for him and his doctor also thought beatsons were looking after him. He was lost in the system! I now feel he is just being left to rot away in his bed. I feel like the consultant should have told my dad how long it would take to get on this trial and that someone should have been monitoring him. I feel like they only care about there trials and not how the persons well being is. My poor dad I just feel devastated for him. 

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Responses

Response from Nicole McInally, Patient Experience and Public Involvement Project Manager, PEPI, NHS Greater Glasgow and Clyde 6 years ago
Nicole McInally
Patient Experience and Public Involvement Project Manager, PEPI,
NHS Greater Glasgow and Clyde

Submitted on 27/10/2017 at 10:20
Published on Care Opinion at 12:11

picture of Nicole McInally

Dear Maisie81

I am so sorry to read about your Dad’s cancer diagnosis.

You have raised a number of concerns relating to your Dad’s clinical care and the lack of communication. I have shared your story with the Chief of Medicine and we would like to look into this further. It would be very helpful to have some more detail so that we can investigate this more fully, and respond to your concerns. I would be most grateful if you could contact me, my telephone number is 0141 232 1876.

Kind Regards

Elaine Burt

Chief Nurse – Regional Services

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Response from Sandra Campbell, Nurse Consultant for Cancer & Palliative Care, Cancer Care Team,NHS Forth Valley, NHS Forth Valley 6 years ago
Sandra Campbell
Nurse Consultant for Cancer & Palliative Care, Cancer Care Team,NHS Forth Valley,
NHS Forth Valley

Submitted on 27/10/2017 at 12:49
Published on Care Opinion at 13:32

Dear Maisie81

Thank you for sharing your dads experience with us, at what I can only imagine to be a very difficult time for you, your dad and the family.

I am disappointed to hear the difficulties that your dad has experienced throughout his journey, I offer my most sincere apology for the impact this has had on your Dad.

I would like to offer you an invite to meet with us to allow us to explore the concerns you have raised, in the meantime I would encourage you to contact Pauline Marland, on 01324 566523 to allow the opportunity to discuss any immediate actions required.

Kindest regards

Sandra Campbell

Nurse Consultant for Cancer and Palliative Care

NHS Forth Valley

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Update posted by Maisie81 (a relative)

Thanks for the quick responses. I will contact the above numbers on Monday as he is now getting another scan at Forth valley hospital in ten days, I'm just hoping he will make it to the appointment.

Response from Nicole McInally, Patient Experience and Public Involvement Project Manager, PEPI, NHS Greater Glasgow and Clyde 6 years ago
Nicole McInally
Patient Experience and Public Involvement Project Manager, PEPI,
NHS Greater Glasgow and Clyde

Submitted on 08/11/2017 at 10:22
Published on Care Opinion at 16:01

picture of Nicole McInally

Dear Maisie81

Thank you for contacting me and giving me the opportunity to review your dad’s care. Our clinical trials team discussed with your dad on enrolling in the trial that it can take some time before results and treatment are made available.This is because samples are sent to the USA for analysis and the immunotherapy drugs are not routinely made available to patients in Scotland outside of clinical trials.

The clinical trials team have been in touch with your dad as planned now that his results are back. However, given his inability to make the journey, we assisted with arrangements to admit your dad to a local hospital. Please be reassured that the clinical trials nursing team have been in regular contact with the hospital nursing team since then. As I offered, I am happy for you to contact me at any time if you require any further assistance.

Kind Regards

Elaine Burt

Chief Nurse – Regional Services

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Update posted by Maisie81 (a relative)

I'd like to thank Elaine, Sandra and Pauline for their help in this matter. Since putting this message on my dad has been taken into hospital and been looked after. Unfortunately the scan shows the cancer has progressed significantly but is hopefully going to a hospice to get his pain under control and get mobile again before coming home.

I believe if I hadn't reached out on here for help, my mum and myself would have seen him die in front of us with no help and alone. I now understand it wasn't the fault of Beatsons or Forth valley hospital as they didn't know how much he had deteriorated and his local GP said he had been referred. My dad had given up just like I felt everyone had given up on him. I'm just so grateful he has been taken care of now.

Response from Sandra Campbell, Nurse Consultant for Cancer & Palliative Care, Cancer Care Team,NHS Forth Valley, NHS Forth Valley 6 years ago
Sandra Campbell
Nurse Consultant for Cancer & Palliative Care, Cancer Care Team,NHS Forth Valley,
NHS Forth Valley

Submitted on 13/11/2017 at 17:57
Published on Care Opinion at 21:14

Dear Maisie

Thank you for taking the time, at such a sad time for you and your family, to let us know the current situation and for your honesty. I am really sorry it all was so difficult for all of you and your dad but glad he is being cared for now.

Please do not hesitate to contact us again.

Kindest regards

Sandra Campbell

Nurse Consultant Cancer and Palliative Care NHS Forth Valley

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