Patient Experiences

Dear Dr Gaspar

Thank you so much for your email. Apologies for it taking a while for me to reply.

I’ve found the ACT for pain course hugely helpful. Having been suffering with a different aspect of my neuropathic pain (the allodynia which was breaking through previously successful management techniques) it has been useful to ‘start from scratch’ and the course has supported this. I had an early hot streak progressing through the course content but have admittedly lapsed over the last few weeks. However, I have continued to leverage the tools and the ACT mindset. The course content and production quality is excellent and having access remotely has been invaluable during a difficult time. Replicating the group structure is also beneficial as this is a core element often missed from online pain resources. I have had not technical issues whilst accessing the materials either via wi fi or mobile data and the program website has worked flawlessly via laptop or mobile browser.

One difficulty is the density of the course material and being unable to streamline it easily, particularly during flare ups when mental capacity is impacted. By this I mean that it can be daunting realising that the next session is an hour long video and it not being already separated into more manageable chunks of say 10-15 minutes. I think this would have made it easier for me to maintain momentum. That said, despite having attended a number of pain courses, I have definitely benefited from the entirety of the material so far rather than trying to cut out portions. As you know there can be a desperation from a patient’s perspective to fast track to the most impactful information especially during flare ups! I really like the honesty of the program with respect to pain solutions/silver bullets but doing so without shattering hope of improved quality of life.

A fantastic feature of your program is the access if required to the clinical professionals. It provides a huge level of reassurance, especially as going through pain courses can be a rollercoaster and bring up difficult issues. I also think the value for money is excellent.

Separately I persevered with the capsaicin cream and it has helped take the edge of the allodynia, which when combined with the improving relationship with pain via the course has been impactful in improving my quality of life.

I will keep on chipping through the course and am happy to provide more feedback, perhaps once completed and having had some time to reflect on it. Thank you for all of your help, it makes a big difference.

Hope all is well for you and yours.

Kr
A (England)

Hi Lourdes,

I am doing fine thanks. I hope you are well.

My thoughts:

I thought the program was very good and brought up a lot of important coping tools. It was especially useful at a time when in person group programs were not running. Also if there was no course available to attend locally. It was comforting to see that I wasn’t the only one with these problems. I got stuck on the course as I was having a problem with the meditation. This caused me to pause the course and then I never got back to completing it.

However, I want to go back and revisit the course – in particular some parts of it that were helpful to me. Also now, I am in a slightly better place, I may benefit more from the programme, so it’s good to have it available to revisit. That is the beauty of having it available online still, whenever I want I can go back to it. Also, I feel like I need to go over things a few times to really let the skills sink in, as old habits come easier than the new ones- especially when in pain. I really felt exceedingly well supported during it. I actually couldn’t believe it.

Whenever I contacted the team, Dr Lourdes emailed me back with considered, empathic and helpful suggestions. In my experience, his response was more prompt and sometimes more helpful than my own medical team. This support was important and necessary really, as the course can be emotionally very challenging. It was good value for money and I was impressed by the quality of the course overall.

Best wishes
O (N Ireland)

“I have multiple sclerosis which causes neuropathic pain. I have had this for many years and I’m always eager to try anything which I feel would give dignified relief.

This course was clearly aimed more at living well with the pain rather than trying to lessen the pain. Just before embarking on the course, I had a difficult time having badly broken my leg which necessitated an operation to insert a pin. This led to worsened mobility and increased pain

I was ready for a different approach to life with chronic pain and came across the course at the right time for me.

I found the course interesting and thought provoking. I was a little disappointed when I realised the characters were actors voicing scripts. Nonetheless it covered a lot of the issues you come across with chronic pain.

I did go through the course about two weeks sooner than recommended. This was because we were due to go on our first cruise. My everyday outlook on the cruise was different than what it would have been without the course. Each day my thoughts were on what we were going to do not how my pain was. I did spend a lot of time in my wheelchair but accepted this as a way to experience the day. I have no doubt that I enjoyed the cruise more having completed the course.

The pain in my legs is undoubtedly worse after the exertions in the cruise. I intend to complete the course again to reinforce the message that I should be concentrating on the good things in life rather than the pain which is the possible barrier to this.

It’s hard to put the benefit derived from the course into words. I can only tell you that my husband was aware of a different outlook I had to each day. One day I was struggling. Instead of feeling deprived that I couldn’t visit the port I had an enjoyable afternoon sitting reading on the cabin’s  balcony in the sunshine at the end of December.”

And

“Felt very emotional explaining how much the course had helped so I didn’t read it back before sending.  I have just registered again as my card had been used fraudulently and blocked by the bank  and I needed to re-register with a new card.  I’m going to do some modules again without rushing through them.  There was a feeling of safety once I was re -registered”.

AJ UK