Text size

Theme

Language

"My infusion body mysosis journey"

About: Adult Health & Support Services / Occupational Therapy University Hospital Hairmyres / Neurology

(as a service user),

When I first was informed about my illness I didn't take it in, I wasn't informed how this would affect my life as people had different effects from it. I was given a consultant who I met with about twice a year.

The consultant couldn't give me any advice how to deal with the affects of this illness, the meetings I had were only to I inform them of the way I had been and how I was progressing, nothing about how to slow the progressing of my illness.

I have had feed back from the Occupational Therapist and help with my illness along with the physical health care worker. I have had to buy myself certain adaptations as my legs and arms have gotten weaker over the last 3 years so I am now dependent on my Wife to do everything for me as I am unable to attend to myself.

My Consultant finally told me what my future would look like, in a few years time I might be bed bound unable to facilitate anything for myself.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Jennifer Montgomery, Improvement Coordinator, Quality Directorate, NHS Lanarkshire last month
Jennifer Montgomery
Improvement Coordinator, Quality Directorate,
NHS Lanarkshire

Operational Lead for Care Opinion in NHS Lanarkshire

Submitted on 16/05/2025 at 18:12
Published on Care Opinion at 18:12


picture of Jennifer Montgomery

Dear Richardrmx25,

Thank you for sharing your experience of Neurology in Lanarkshire.

I am sorry to hear that when you had your initial diagnosis you were not informed about the long term effects on your life. I am disappointed that the consultant did not use the meetings to provide you with advice on living with your condition.

Please can I ask that you contact our patient affairs team who will be able to investigate this further and provide you with a personal response?

patientaffairs@lanarkshire.scot.nhs.uk

Best Wishes,

Jenni

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Response from Catherine Brown, South Care Group Lead- South Lanarkshire Community and Neurological Services, Outpatient Service - South Community & Neurological OT, South Lanarkshire University Health and Social Care Partnership last month
Catherine Brown
South Care Group Lead- South Lanarkshire Community and Neurological Services, Outpatient Service - South Community & Neurological OT,
South Lanarkshire University Health and Social Care Partnership
Submitted on 20/05/2025 at 13:34
Published on Care Opinion at 13:35


picture of Catherine Brown

Hello Richardrmx25

It sounds like it has been a really challenging time for you and I am truly sorry to hear that.

I am pleased to hear that you found the advice and input from Occupational Therapy helpful though.

If there is any aspect of your experience with Occupational Therapy that you would like to discuss further please get in touch with the patient affairs team on patientaffairs@lanarkshire.scot.nhs.uk and we will do our best to help.

Mean time I would like to take the opportunity to thank you for taking the time to share your experience on Care Opinion and to extend my best wishes to you on your journey moving forward.

Take care

Catherine

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k