"Getting a diagnosis for my husband"

About: Musgrave Park Hospital / Neurological unit Musgrave Park Hospital Neurological unit Belfast BT9 7JB

Posted by Gullible65 (as a carer), 2 years ago

Having waited 2 years for a Neurologist appointment, we finally got one at Musgrave Park Hospital in December 2022. We have been to our own GP, referred to Psychiatrist in Newtownards along with Psychologist, these appointments are ongoing. My husband has had several scans of his brain to try to find out what is causing him to have difficulty with speech, swallow, memory, behaviour, movement etc. When we arrived at the hospital, no-one was able to tell us where the Neurology Department was, they apparently had moved two weeks previous.
As we were half an hour late, maybe that was why I felt they were not interested and came across detached. I felt the issues were not addressed. I was told there's nothing wrong - he's not doing that now and maybe because he's retired - you're observing him more.
I felt the doctor was dismissive when I showed videos they just said, not Parkinson's... but didn't suggest any other reason. They told me that it couldn't be Dementia 'because it's been 6 years - he'd be dead by now, and if it was Parkinson's 'he wouldn't kick in his sleep, he'd punch the pillow.
I asked if he agreed with the diagnosis of MCI, the reply was that they didn't give that diagnosis. We were informed they hadn't gotten my husbands records, yet at the end whilst holding open the door to let us out, told us my husband is not allowed to drive - it's in his records.
When I asked why, if there is nothing wrong with my husband, he repeated and informed us 'it's in his records, & suggested maybe it's Psychiatric. As my husband rose to leave, he stumbled. I noticed Neurologist saw this, but made no comment. We came away baffled, and I felt it was all in my head, I'm exaggerating or seeing things in my husband, which weren't there. I felt belittled, as if I knew nothing. It's all my fault.
The doctor told my husband there's nothing wrong, so that's now what he believes, yet he's abiding by the rules of not driving. Having discussed this with friends and family, and after giving some thought about what was said, I realise, it's not me who has the problem. There's something wrong with my husband, and the neurologist had possibly the key to finding out what that might be, yet they didn't explore any options.
Instead they made me feel stupid and small. I felt their attitude was not caring nor empathetic. I'm now left waiting for yet another Psychiatrist appointment, where I can hopefully get closer to a diagnosis and get my husband the correct treatment. I can only hope it's not too late and whatever is wrong, might never be corrected. I certainly would not be happy to have a further appointment with this Neurologist, nor could I recommend to anyone else, my impression was that they just really couldn't be bothered.

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Responses

Rocio Muina Lopez

Service Improvement facilitator, Palliative Care Services,

Belfast Health and Social Care Trust

Submitted on 23/02/2023 at 12:21

Published on Care Opinion at 16:13

Dear Gullible65,
My name is Rocio MuinaLopez and I am a Patient Experience facilitator at the Belfast Trust.
I am so sorry to hear about your husband not receiving the care that he needed and that you felt that your concerns where not taken seriously. This is certainly not the care we strive to give to our service users and families and I apologise for this.
I would like to further look into this, to give you and your husband some peace of mind.
You can contact me in the following email Rocio.MuinaLopez@belfasttrust.hscni.net to arrange for a phone conversation at a time of your convenience. I want to reassure you that I will treat your story with the upmost confidentiality.
Looking forward to hearing from you,
Rocio MuinaLopez, Patient and Client Experience Facilitator.

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Rocio Muina Lopez

Service Improvement facilitator, Palliative Care Services,

Belfast Health and Social Care Trust

Submitted on 22/03/2023 at 10:13

Published on Care Opinion at 11:56

Dear Guilible65,
Thank you for getting in contact with us to discuss your experience attending the neurologist’s clinic. We greatly appreciate your input and are glad to hear that the information we provided you with, was helpful to you and your husband.
I wish you the best moving forward and thank you again.
Rocio Muina Lopez

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Update posted by Gullible65 (a carer) 2 years ago

Basically it was a waste of time. Nothing was done. No resolution.

Rocio Muina Lopez

Service Improvement facilitator, Palliative Care Services,

Belfast Health and Social Care Trust

Submitted on 28/03/2023 at 10:39

Published on Care Opinion at 10:50

Dear Gulible65,
I am really sorry to read you feel that communicating with our team was a waste of your time. The service manager and I offered to meet you to discuss your experience, and we understand that you do not wish to meet in person or to talk over the phone. We offered to send you the clinic letter, which you agreed on and then confirmed that it was helpful. We asked you if there was any other resolution you would be happy with, but you did not suggest anything. Communicating these sensitive matters via email can lead to a breakdown of communication, for this reason we advocate talking with the people involved. If you do change your mind at any point and wish to meet with us in person or to arrange a phone call, we would be more than happy to arrange this with you.
The Patient & Client Council offer an independent, confidential and free advice and advocacy service. They support people to communicate their views to health and social care services. Their Freephone is 0800 917 0222. You may wish to contact them if you feel more comfortable talking to someone independent from the Belfast health and Social care trust.
Alternatively, you can contact the Belfast HSC Trust’s complaints department to make a complaint about your experience if you wish. You can contact the complaints department in a number of ways:
By letter:
Complaints Department
Belfast Health and Social Care Trust
7th Floor, McKinney House
Musgrave Park Hospital
Stockman’s Lane
Belfast
BT9 7JB
By email: complaints@belfasttrust.hscni.net
or by completing the online form https://belfasttrust.hscni.net/contact-us/compliments-and-complaints/feedback-form/
Again, I am sorry that this hasn’t been helpful for you, but please do know that you can contact the service manager or me if you feel able to discuss this in the future.
With best wishes,
Rocio Muina Lopez, Patient & Client Experience Facilitator

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Update posted by Gullible65 (a carer) 2 years ago

To clarify, I never said I didn't wish to speak face to face or on the phone. I pointed out that having read the clinic letter, I saw no point in arguing with this doctor.
I put that to you and said the only helpful thing was that my husband was actually allowed to drive, after being told he wasn't allowed. I thought I'd be given some direction as to how to go about taking the next step. As far as I can see, a resolution to this problem has not been offered.
Getting the clinic letter only confirmed that what was said face to face with me, and what was written differed immensely. If I sat down with the neurologist, they would argue, having the letter in front of them, that what they have written is true. Therefore, what is the point in speaking with them? Do you understand my position?
My husband's diagnosis isn't going to change.
The reason I'm dealing with e-mails at present, is because I work, and don't have access to a phone. Heading up to Belfast means I have to wait for a holiday break. If I thought there was something that could be said or done to make this whole experience go away - I'd do it

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