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Care Opinion

Life ruined by migraine

Posted By chronicmigraine

"Life ruined by migraine"

About: Crosshouse Hospital / Neurology

(as the patient),

My life has been ruined for the last 6 years by migraine which has gotten worse over time, I attend Neurology at Crosshouse Hospital in Ayrshire, I have tried oral medications but to no avail and most of them I have had to withdraw usage due to severe side effects. I attended an appointment some weeks ago at Crosshouse Hospital and my Neurologist explained that I am now onto the point that I require injectable treatments, the main one being Botulinum injections, the Neurologist explained that Crosshouse does not currently have a service for this and that they would have to write to the management of Neurology service at Crosshouse, I'm assuming to let them know there are patients that require this treatment. 

It has been 4/5 weeks and he has not had a response to this, this is incredibly distressing to me because I have chronic facial pain and severe migraines, I can have 15+ migraines per month, the fact that this amount of time has passed and no one from Neurology management at Crosshouse seems bothered that a patient/patients are living with a severely debilitating condition is really disappointing, I don't expect everyone to understand what this condition is like or the amount of pain and suffering that is endured.

I am really in despair that just because of where I live and the apparent uninterest from Neurology management at Crosshouse, that I am now left in a period of limbo, not knowing where to go or what to do. I have stated that I do not mind travelling to Glasgow for this treatment or any other alternative hospital, I just want an appointment anywhere to have an opportunity to try and have any sort of life back that has been taken from me due to Chronic Migraine.

I was told over the telephone that Glasgow hospitals were refusing Ayrshire patients, I don't know if this is the case but I desperately need some sort of resolution to this.

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Responses

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran 5 years ago
We are preparing to make a change
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 17/10/2018 at 11:31
Published on Care Opinion at 13:57

picture of Eunice Goodwin

Dear chronicmigraine,

I have been asked to post this on behalf of David McCrone, Assistant General Manager, Medical Specialties, University Hospital Crosshouse.

"I am sorry that your migraines have progressed and I can only imagine how debilitating this must be and the impact this is having on your life.

I am also extremely sorry that you are unhappy with the management of this and you perceive that we have not taken any action to provide Botulinum (Botox) treatment for migraine in Ayrshire and Arran. I would like to take this opportunity to reassure you that this is not the case. I am delighted to say we are in the process of endeavouring to establish a service in Ayrshire and Arran.

Where we are at the moment

Before any new service is introduced, we need to ensure this service is the best course of action as a treatment; this has been done. A proposal to implement this has been discussed at our Governance groups both here and at UHA (Ayr hospital).

The next step is that we need agreement from our Pharmacy and the 'drugs and therapeutics committee'. Once agreement is reached, to ensure this is done safely, we then need to train the appropriate staff to carry out the procedure. Unfortunately as you can appreciate, this can all take some time.

I absolutely appreciate that this doesn’t help you at this time, however, we have also been exploring ways that we can access this service in other health boards, as you suggested, in Glasgow.

I would like to reassure you that we are committed to implement this service. I am sorry that the length of time it takes to introduce a new service can be very frustrating, particularly when you are suffering so frequently with migraine. If you would like to contact me directly I would be happy to discuss the matter further.

My email address is David.McCrone@aapct.scot.nhs.uk and my phone number is 01563 826732.

Best wishes

David

Assistant General Manager, Medical Specialties

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Update posted by chronicmigraine (the patient)

Unfortunately this does not help me at present as I am currently living in hell with frequent severe life altering migraines. Patients living with such severe pain and suffering should be sent to a hospital where it is available as a special rule, I do not find it humane at all that this treatment is 40 minutes away from where I live yet it feels like I live in a third world country, unable to access healthcare. My migraines have been severely life impacting, I do not have a life currently, my life revolves around chronic pain and sheer hell, I had to stop working due to this so I don’t live a normal life during all these waiting times, I merely go round in circles in what seems like a constant battle to access the same health care others are receiving 40 minutes away from me., it simply is not fair.

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran 5 years ago
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 17/10/2018 at 14:36
Published on Care Opinion at 15:47

picture of Eunice Goodwin

Dear chronicmigraine,

I can only imagine how awful this must be for you and I am so sorry that we are not able to give you this service in Ayrshire and Arran right now. Can I encourage you to contact David McCrone by any chance? I am sure he will do anything that he can to help.

David's email address is David.McCrone@aapct.scot.nhs.uk and his phone number is 01563 826732.

I hope you get the treatment you need as soon as possible and you can start living again,

best wishes,

Eunice

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