"Pain Service let down by distressing conduct of..."

About: St Lukes Hospital (Bradford)

I suffer from severe chronic neuropathic pain which destroys any quality of life. I was referred to Bradford Pain centre because it offers more treatments than are available in my own authority.

My consultant adjusted my medication, and tried other procedures.

They did not relieve the pain but I hugely appreciate their persistence in trying all possible options.

The consultant did everything they could. Spinal Cord Stimulation was the last resort. To prepare for SCS I had 35 sessions of individual and group therapy, through the psychology service at Bradford.

I thought everything about the psychology service brilliant.

At the start of the trial of SCS, my nurse told me not to worry if the initial setting didn’t work. There were lots of settings that could be tried.

I felt a small reduction in my pain from the initial setting, and the sensation was pleasant.

With tweaking of the settings I thought I might get significant pain relief.

I had the settings adjusted back at the clinic. Unfortunately the new setting caused more discomfort.

I phoned the mobile contact number I had been given for the duration of the trial.

From then on I found the conduct of the trial quite distressing.

There was no appreciation that SCS is the last chance for a patient with life destroying pain.

55 hours after my call a senior nurse phoned me back.

It was a brief cold phone call.

I explained that the second setting was not as effective as the first, and asked to try another setting as the first setting had given me some hope.

But I was just instructed to take the kit off and end the trial. This 5 minute phone call effectively ended my treatment at the clinic and any hope of pain relief.

When I returned to the clinic I expected to discuss with a doctor how the trial had gone. Absolutely not.

I repeatedly asked the doctor who was about to remove the electrodes why the trial had ended when I could have tried more settings but they ignored my questions and carried on chatting to the nurse.

As I was leaving they said that I should discuss plan B with my consultant. That was really insensitive when there was no plan B.

5 weeks later I did see my own consultant, but this was just to refer me back to my GP as there were no other options.

1. If there is a limit to the number of settings that can be tried that should be clear at the start, and the reason.

2. I was prepared for the trial to fail, but it was wrong for the trial to be terminated on the basis of a brief phone call with someone who didn’t know my case.

3. Surely before deciding that the trial has failed there should be a face to face review of the trial between the patient and a doctor.

It is of huge significance to the patient. In the event I was distressed by the ignorant conduct of the one doctor I did see at the end of the trial.

4. I do think it important that the trial is conducted in a way that convinces the patient as well as the pain service that SCS won’t give adequate pain relief.

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Responses

Response from St Lukes Hospital

Hello Mark, I have noted that you have made positive comments about the Psychology Service, thank you.

I would like to apologise for the poor experience that you have described. If you would like to discuss this further the patient experience manager would be happy to discuss your comments with you.

The number to contact is 01274 364810. Thank you.

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