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Treatment for MS - our amazing NHS

Posted By Beddoes

"Treatment for MS - our amazing NHS"

About: Royal Cornwall Hospital (Treliske) / Neurology

(as the patient),

I remember the day of my first infusion only 8 months after my multiple sclerosis diagnosis. It was scary, was this the right treatment for me, is it worth the risk due to the potential side effects and high risks that goes with taking very potent, immune suppressing drugs. Well a decade later the answer is definitely yes. I have no regrets and at the time 10 years ago I had already reduced my hours at work and was struggling to deal with the symptoms and daily battle with this long term condition and had 2 young children so I wanted to give myself the best chance to be as active and mobile for them and to enjoy time with them growing up.

We are so fortunate to have our amazing NHS. I will have had 130 infusions on my 10 year anniversary; 1 every 4 weeks. The infusions alone have cost the NHS a lot of money not counting the cost of annual MRI, 3 monthly blood tests and reviews with my neurologist and MS nurse. I count my blessings that we have our amazing NHS may it continue and want to thank all the amazing staff at the Medical day unit at Royal Cornwall Hospital and the team that care for us.

A decade on I have been working full time for many years, have been as active as I could be enjoying every moment with my children growing up and I hope that this amazing treatment will continue to halt the progression of this depilating disease so I can enjoy many years being active and Independent and will be supported/funded by the NHS.

Thank you to our amazing NHS

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Responses

Response from Jess Saunders, Patient Engagement and Feedback Coordinator, Patient + Family Experience Team, Royal Cornwall Hospitals NHS Trust 5 years ago
Jess Saunders
Patient Engagement and Feedback Coordinator, Patient + Family Experience Team,
Royal Cornwall Hospitals NHS Trust

Submitted on 25/09/2018 at 14:38
Published on Care Opinion at 16:09

picture of Jess Saunders

Dear Beddoes,

Thank you so much for sharing your heart-warming story with us, it is lovely to see how the NHS has helped you following your diagnosis of Multiple Sclerosis and indeed, the Medical Day Unit at Royal Cornwall Hospital. I am pleased to see that you found the staff to be amazing. It is great that you have been able to enjoy every moment of your children growing up and that you now have a full time job all thanks to the treatment you have received over the last 10 years.

I am replying to you as a member of the Patient and Family Experience Team, but I will ensure that the team on the Medical Day Unit get a chance to see your story, I know they will be delighted to read it.

Kindest regards,

Jess

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Update posted by Beddoes (the patient)

Thank you Jess I was informed by the team on the medical day unit that my story was printed in the West Briton about a month ago I sent it to them and did not hear back so was unaware they had published it. I am so pleased that some of the team had chance to read this.

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