"Chronic Pain Service Castle Hill Hull"

About: Castle Hill Hospital / Pain Management

(as the patient),

I attended a Consultants appointment today. After attending the Center Of Pain Management for over 10 years, I was told that the clinic was having to discharge all patients who have infusion treatments (as there was no clinical evidence that they worked).

To say I was shocked and extremely upset is an understatement. At my previous consultation, there had been a hint that there was a possibility that these treatments may move into the community. However when I had asked staff at my infusion treatment two weeks ago, I had been told that this wouldn't happen.

At this point, it is worth stating that I have been living with Chronic Pain for 17 Years. Since being put on a lignocaine infusion, my pain management has been good to excellent.

I was then required to make a decision there and then on two options for my future treatment. 1. I could be referred back to my GP who would then have to go through some sort of re-referral process in order to get me back onto my infusions or 2. opt to have a nerve block instead.

I have to state that I do not feel that I fully understand either option. All I know is that either way my treatment schedule is now out of the window and all I have to look forward to is weeks of intolerable pain. I felt pressured to make a decision as the consultant was at this point running over an hour late. I opted to try and get re-referred for the infusion as I know this works and I did not feel I had enough information on the other treatment to try it.

I feel that this situation has been handled extremely badly. If this had to happen, then I should have been informed in writing prior to the consultation. Knowing what was happening and what my options were would then have given me the opportunity to make an informed decision about my pain management.

The current situation worries me greatly. In my opinion, it is a prime example of a badly manged bureaucratic exercise that has nothing to do with patient care and everything to do with political meddling with the Health Service. To me, it feels solely a cost cutting exercise that takes no account of the individual patient.

The last time this happened to me (when my old Consultant retired), I was kicked out of the system for seven months. It took me two suicide attempts and a private consultation I could barely afford to get back into the system.

Obviously I am extremely worried that history could repeat itself.

In the interim, I have been prescribed Morphine to help with the pain. If I take this, I will feel like a zombie with no life worth speaking of. I know I have been there. Hence depression hence more visits to the Dr and Psychological services etc. If I do get referred back to the Chronic Pain Service, I will then require more drugs to help me get over the withdrawal effects of the morphine addiction (dependency in NHS terms). Therefore additional costs to the health service. Can some one tell me where the sense is in disrupting what was a very effective pain management treatment plan because I cant see it?

I am more than happy to look at other ways to help me manage my pain and have in the past tried alternative therapies, pain management programs etc etc. All the things that the new community service is saying I must look at. I am happy to revisit some of these if required. But why stop the only effective treatment I have had in 17 years before I have had chance to do this?

I feel severely let down and only hope these issues are resolved swiftly.

Finally let me state that I in no way blame the hospital staff for this situation. The staff at the Chronic Pain Service at Castle Hill have always given excellent care and treatment. It is the systems they are been forced to work within that are the problem

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Response from PALS and Complaints Manager, NHS Hull

Patients receiving pain management treatment in Hull and the East Riding of Yorkshire are currently going through a review process with the Hull and East Yorkshire Hospitals clinical team. Following this review patients who receive infusion therapy are being discharged from the service back to their GP for re-assessment.

We have written to each patient’s GP outlining the next steps in the Exceptional Treatment process, if the recommended ongoing treatment following re-assessment is infusion therapy. Please be assured that these patients will be treated as a priority.

We would be happy to discuss this process with patients in more detail if they wish via the Patient Advice and Liaison Service (PALS) on 01482 344616.

NHS Hull Clinical Commissioning Group

East Riding of Yorkshire Clinical Commissioning Group

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