"Best care during my worst time"

About: Neurosciences (DCN) / Outpatients Department - OPD7 Royal Infirmary of Edinburgh at Little France / Clinical haematology Royal Infirmary of Edinburgh at Little France / High Dependency Unit & Intensive Care Unit Royal Infirmary of Edinburgh at Little France / Neurosciences (DCN) Royal Infirmary of Edinburgh at Little France / Speech and Language Therapy

(as the patient),

I suffered from an aggressive form of myasthenia gravis, an autoimmune condition, which left me unable to speak, eat or drink. I had almost four months in Intensive Care at the Royal Infirmary of Edinburgh, followed by almost two months in the adjacent Department of Clinical Neurosciences, with visits to the Apheresis Unit for plasma exchange sessions. 

Key to my recovery were the plasma-exchange sessions and the work of the Speech and Language Therapy (SLT) team. Both teams were very professional, and gave me hope when hope seemed impossible. 

Improvement? The SLT gave me two treatments which involved a small camera being inserted down my nose into my throat. The second session seemed needlessly painful. No pain killer was involved. I was in tears. Next we tried a series of x-rays of my attempts to swallow. This was painless, and achieved much greater outcome than the camera. 

Their work revealed muscle weakness in certain areas, and I was given exercises to strengthen those muscles. Soon I was beginning to swallow custard and other soft foods, and slowly small amounts of water. 

The combination of these exercises and the work of the Apheresis unit transformed my health in a relatively short time. The Physio team helped get me walking, first with a zimmer, then a walking stick, and finally independently. 

The Neuro team meanwhile were giving me a steroid and other drugs to counter its worst effects. The entire team of nurses, doctors and support staff in the Neuro ward were magnificent, and helped get me in a more positive frame of mind. I've now left the hospital after five and a half months of care, but visit once a week for a plasma-exchange session. I also meet my Consultant once a month, likewise my psychiatrist, both of whom really helped me through tough times. 

I have not discussed my four months in Intensive Care, as the experience was too horrendous for me to reflect upon at this stage in my recovery. 

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Responses

Response from Michelle Jack, Associate Nurse Director, Royal Infirmary of Edinburgh, NHS Lothian 3 months ago
Michelle Jack
Associate Nurse Director, Royal Infirmary of Edinburgh,
NHS Lothian
Submitted on 30/11/2024 at 08:05
Published on Care Opinion at 08:05


picture of Michelle Jack

Thank you for sharing your feedback with us. It sounds like this has been a very difficult period for you and you are still recovering. I am pleased we were able to support you through this and hope we continue to do so. I wish you all the best for your ongoing recovery and thank you again for sharing with us and taking time out to do so.

Kind regards

michelle

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Response from Lucie McAnespie, Head of Adult Speech & Language Therapy, NHS Lothian 3 months ago
Lucie McAnespie
Head of Adult Speech & Language Therapy,
NHS Lothian
Submitted on 02/12/2024 at 12:29
Published on Care Opinion at 12:33


Hello! Thank you for taking the time to post your thoughts, we really value feedback.

I am sorry that the second scope was painful for you and am glad that an alternative approach was offered and that input from the SLT team led to positive outcomes for you.

Very best wishes for the future.

Lucie

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Response from David Briody, Senior Charge Nurse, High Dependency Unit and Intensive Care Unit, Royal Infirmary of Edinburgh, NHS Lothian 3 months ago
David Briody
Senior Charge Nurse, High Dependency Unit and Intensive Care Unit,
Royal Infirmary of Edinburgh, NHS Lothian
Submitted on 03/12/2024 at 12:47
Published on Care Opinion at 13:40


Thank you for feeding back to us. All and any feedback is very important to us. We would echo what our colleagues have said above. It is great to hear the extent of your recovery so far and the hard work you have put in.

We are very sorry to hear that you are finding your time in ICU too horrendous to reflect upon. When you are ready, we would be more than happy to meet with you to talk over your time in ICU, this could be with one of the consultants and a senior nurse. Many former patients have found this helpful when the time is right. This can be arranged by contacting the senior charge nurse team on 0131 242 1163 or 1183.

The critical care recovery service should already be involved in supporting your care and support but if not, please let us know and we can arrange this. They also have some useful resources that can be found at https://edinburghroyalinfirmary.criticalcarerecovery.com

Again, you may have already been signposted to this but ICU Steps also provide support for those who have spent time in Intensive Care and have support groups across the East of Scotland. Their details can be found at icusteps.org.

We wish you all the best in your continued recovery,

David

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