"pain management team are supposed to be the last port of call - no help"

I had an appointment for the Breast clinic last week, I thought it was a one stop service as this is how it has operated in the past. On Wednesday I had a mammogram and on Thursday I had a physical examination by the doctor. This went very well in that she was very understanding, kind and considerate. The doctor found a lump on the right side and said I would need an ultrasound to check the lump. I asked if this would be straight away but was told that an appointment would be sent to me for the ultrasound. I was quite upset by this as it was a shock that they found a lump and now I would need to wait for further tests and then even longer for the results. I was in tears as I got to the car park. I have needed to go through mammograms and ultrasounds previously, it’s all be completed over a couple of days which was nowhere near as stressful. The doctor said it was because there weren’t enough radiographers – I just think that given it is a breast clinic where you can anticipate a number ultrasound tests being needed plans should be made for enough to be available on clinic days.

I have also been experiencing jaw pain for some months and have gone round in circles to get treatment and referrals. It started when I developed sore bumps on the side of my tongue, which then moved to a pain in my jaw. I was referred to the maxillofacial unit, by the time of my appointment I was also coughing up blood. The lady in the maxillofacial unit said she could only examine my mouth and that I would need an ENT referral to find out what was causing the blood when I coughed. When this appointment came through, . I could not open my jaw wide enough for a proper examination and as the clinician wanted to see what was happening at the back of my mouth / throat and would put a camera up my nose to have a look. I was not given any pain relief and had to stop the procedure when the pain became unbearable. I was told that they would have to assume everything was OK as he had not been able to complete the examination. I would need to see my dentist if the problems persisted for a further referral to ENT. I went back to my dentist’s surgery only to hind that he was on leave for 4 weeks, I turned to the emergency dental treatment to see if they could do a referral for me, they said it would need to come from my dentist. I eventually got a further referral only to be told there was a 20 week wait for an appointment – I cannot chew due to the pain in my jaw so am on soft food, I cannot brush my teeth without pain as my jaws lock. I was advised to go back to my dentist to see if he could upgrade my referral to ‘urgent’ rather than ‘routine’. I am still waiting to be seen.

On top of all this I have severe degeneration of my spine which leaves me in chronic pain. I was referred to the pain management team early last year and was given a folder full of information. However, I find this difficult to read as I cannot see black on white very clearly. Nevertheless, I have been seen by various people in the pain management team but was told more recently that I was no longer eligible to be seen by them. My condition / pain does not fit into a neat category, it fluctuates and changes and because of this they are not interested in seeing me. I was told they would tweak the medication I am on but no changes have been made.

I have taken this up with the ombudsman but my complaint was not upheld. When the decision was made I asked the ombudsman’s office to read the letter to me, as I have reading difficulties, but I was told that I would need to read it myself. I spoke to another person in the office and when I explained my reading difficulties she said I should have received support in putting my complaint together.

The pain management team are supposed to be the last port of call, but even with them if you do not fit the right box there is no help from them.