"I left feeling not listened to"

Hi Eunice, I have emailed you at the address supplied.

Regards

Just a question to the responses I’ve had from some of the NHS doctors, why do I have to have cancer to be considered for a treatment that could change my life for the better.

That’s the definitive answer to Intrathecal pumps, we don’t do them here and it’s only cancer patients that are considered.

If the treatment is right for the individual then what price do you put on the quality of a future life of a young man with a young family. Because it seems to me that it’s down to cost not care.

If I could ever afford it, I would have it done privately but we all know that won’t happen. I can’t go private because my condition has caused me to give up work, I can’t get back to work because I’m not allowed the pump so will never be able to afford it.

A couple of staff from NHS Ayrshire & Arran have been a great help to me with guidance but I’m still looking for that long term solution.

Thanks for the help you both know who you are and it is much appreciated.

I am now a year and a half down the line from my initial story and still no further forward.

‘I did receive a set of trigger point injections that worked well for 6-8 weeks and the last thing the doctor that gave them to me said was you’l receive another appointment in a week or so for another session in 6-8 weeks. I did receive the appointment letter as promised in May 2018 and the appointment was for February 2019!!

I called the doctors secretary on 3 separate occasions that month each time being told it would be sorted out and not to worry. After waiting on the appointment letter every day I gave up in August 2018, I didn’t see any point in calling again as it had made no difference before and by this time I was very unwell and very depressed because of this.

I made a formal complaint about my treatment (Or lack off) and was initially called by a senior doctor. I do not want to name any particular doctor as that doesn’t seem fair.

‘He explained what I already knew, and I told him that and said to me over the phone that I’ll just have to fight through my flare ups. I was speechless as when I have these I can barely walk and am at the toilet at the very least 10-15 times a day. Along with soiling myself with no warning while awake and asleep.

‘My GP who has done her best to support me through thick and thin got me an appointment at a pain clinic in Glasgow but when I went to the consultation the doctor got the impression that my pain was all over 90% of the time and in my lower spine and legs 10%. When it’s actually the other way around, I’m sure it’s my bad explanation that caused this because I was so nervous. So because of that I got a follow up letter saying the device would not be suitable as it is mainly for lower back and leg pain which is me. When it’s bad I feel like I’ve been run over by a bus then someone has taken a hammer to my legs. It’s so painful I cry.

‘I also had my formal complaint meeting and my wife accompanied me. I was asked initially what my complaint was and I explained the circumstances around the injection appointments. I was then asked if they helped. I said yes for 6-8 weeks they gave me relief which I desperately needed but I also said I knew I could only have a certain amount and they weren’t a long term option. I then went on to ask about not being offered Level 4 Treatment as outlined in the NHS Ayrshire & Arran Pain Treatment scale as I had been through all other levels including physio, seeing a psychologist, psychiatrist, medication both tablet and biological to which I had a bad reaction to all. There are also some I can’t have because they would make my Crohn’s Disease worse. The head clinician explained again that this treatment was for cancer patients AND patients that had, had a spinal injury and were suffering severe lower back and leg pain. Just as I do 90% of the time. They said it would not work for me, I asked how he knew it wouldn’t work if I was not tested to see. The tests involve a temporary line being put into the spinal nerve and a pump attached on the outside of the body. Different drugs are trialled in a controlled hospital environment and if one is found to work and give a reasonable amount of pain relief that allows the patient to carry out household tasks and get out and about then it works. Oral painkillers can be used for breakthrough pain if a flare up occurs.

These tests cost a lot of money, so does the pump and the upkeep of it. As I don’t have cancer I expect to live for a considerable 20-30 years. It all adds up over those years I suppose.

As the meeting was coming to a close I asked when I would receive an appointment for another set of injections and was astonished to be told by the senior doctor that they had, had a multidisciplinary meeting and decided that I wasn’t to receive any more injections

without, consulting or even telling me If this decision was already made WHY was I asked at the beginning of the meeting how the injections went and if they worked well?

To cut a long meeting short I left with no offer of a test or further injections but a physiotherapist appointment.

‘Been there a few times already is all I can say. My MSP is also championing my case but she gets the same answers I do.

‘So, am I to spend the next 20-30 years on oral painkillers when there is a test out there to see if an intrathecal pump would work, not being able to go on holiday with my wife and son, (she goes with her mum & my son) not being able to join in the fun things he wants to do with me and not even being able to go out for a simple meal with my wife as I can’t sit on the hard chairs without excessive pain.

‘At the moment I spend 95% of my time at home, around 80% of that is alone as my wife works to keep a roof over our heads and my son is at school.

You get more interaction in prison than I do, Pain is my prison and has been since I was formed to give up work 5 years ago. I don’t fancy another 20 years of it would you?