Care Opinion

My husband's journey with MND

Posted By MND wife

"My husband's journey with MND"

About: General Practices in Grampian

(as a carer),

Up until my husband's diagnosis in 2023, we had numerous doctors appointments, no one could tell what was going wrong, different doctor at every appointment, my husband having to explain his symptoms every time. Try this, try that.

Once we got hospital appointments - 12 weeks' wait to see various consultants - to no avail, cancelled appointments last minute. We even went to an appointment and the receptionist told us our appointment was cancelled. Wasted journey, and frustration on his part.

At one doc appointment I went with my husband and insisted that he needed to be tested for - MS, Parkinson’s, Huntingtons and MND, I’m not medically trained but I felt he was being shoved from pillar to post, something had to be done as I could see that  my husband was wasting away as he had lost so much weight waiting for a diagnosis and that this was not fair on him again another 12 weeks to see another consultant.

When we eventually got to see the MND consultant and was given the diagnosis - as hard as that was - at last we knew what was in front of us, he got all the care and support he needed. Unfortunately only 8 months after getting this diagnosis my husband died.  I feel if we had been given an earlier diagnosis we could have had longer to come to terms with this as a family.

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Responses

Response from Kirsten Dickson, Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team, NHS Grampian 5 months ago
Kirsten Dickson
Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team,
NHS Grampian

Submitted on 29/04/2024 at 16:59
Published on Care Opinion at 16:59

picture of Kirsten Dickson

Dear MND wife,

Thank you for taking time to share your story with us at what must be a really difficult time for you. Please accept my sincere condolences for the sad loss of your husband.

Your story is upsetting to read and I can understand how frustrating the journey to your husbands diagnosis must have been, it’s also easy to see why you’ve been left feeling that the months since then could have been easier if diagnosis had been quicker and the referral processes more joined up.

It’s heartening to hear that once the diagnosis was received, and your husband was under the care of the MND team, the care was good and the right support was put in place. A colleague from the neurology service will likely respond to thank you.

If I’m reading your story correctly it looks like most of the feedback is around the GP practice side of the journey. Most of the GP Practices in Grampian are independently run and have a separate complaints and feedback system. They don’t have responding access to Care Opinion and don’t routinely access the feedback shared. The best way to get your story to them is to contact them directly. If it helps I can forward your feedback to them. To do this you’d need to share the name of the practice with me either by phone/text or by email. Your details are not shared with the practice. This means you wouldn’t get a direct response, but if they do reply I will make sure it’s forwarded to you, and your feedback will be with them for reflection and looking at what they can do to make things better for future patients.

My contact details are: email: kirsten.dickson@nhs.scot or telephone/text: 07885720267.

Help is also available to share your concerns with the GP Practice from the Patient Advice and Support Service (PASS). PASS are an independent service offering free and confidential advice and they can be contacted on 0800 917 2127, or for more information please go to www.patientadvicescotland.org.uk

Kirsten

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Response from Kirsten Dickson, Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team, NHS Grampian 4 months ago
Kirsten Dickson
Quality Improvement and Assurance Facilitator, Quality Improvement and Assurance Team,
NHS Grampian

Submitted on 20/05/2024 at 12:47
Published on Care Opinion at 12:47

picture of Kirsten Dickson

Dear MND wife,

Thank you so much for getting in touch by email to share some more details about you and your late husbands experience. From this I was able to share your story directly with the services mentioned. The Nurse Manager, who oversees the clinical nurse speciliats in this area, and the specialist nurse who provided support for you and your husband after his diagnosis, both got in touch to say how your feedback was greatly apreciacted and would be shared with the whole team.

I also shared the link to your story with the practice manager at the GP practice. Although no other details were shared they think they recognised your story. They mentioned their plans to undertake a Learning Event Analysis, which is a retrospective educational activity where those involved in an event reflect on, and analyse, it during a structured team meeting. This helps identify where things could be done differently to improve care for future patients. Your feedback will have already supported this but they would still be keen to hear directly from you if that's something you felt confortable doing.

Thanks again for sharing your experience.

Take care,

Kirsten

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