FPM10 - Patient Stories
We have collated some patient testimonials to highlight the positive work that Pain Clinicians undertake. If you have any testimonals or stories you would like to share, then please let us know.
"Our daughter (then 8 years old) was diagnosed with ‘RSD’ by our local hospital in 2012. We now know this is an ‘old’ diagnosis and the accurate label is CRPS. However, this inaccurate use of terminology was a good example of the lack of specialist expertise available to her. Lack of knowledge and inexperience (even if well meaning!) by our local services in managing our daughters condition destroyed her trust entirely in healthcare professions, left her fearful and we believe significantly extended her overall recovery time. It also left us as mum and dad feeling like we had betrayed her and let her down, allowing well-meaning professionals to traumatise her.
By the time we were referred to Sheffield Children’s Hospital, it is not an exaggeration to say we were desperate. Given our experiences over the first few months of our daughters condition, I genuinely don't think it's too strong a point to say the Children's Pain Team were a life line and saved both our daughter and our family! From our very first meeting, the overwhelming compassion towards her and never ending positivity with regards her condition gave us reassurance and mostly importantly belief that things could improve. The whole team were and continue to be a source of expertise and advice to myself and my husband. As well as providing intensive treatments (including medication, nerve blocks, physiotherapy and psychology input), they liaised with our local physio and OT services and her school (both primary and secondary - including the transition between these), supporting her to return after extended absences. They have been there for us through the best and worst of times, celebrating every tiny achievement and helping us all to recognise them as that. I believe the team were instrumental in helping our daughter to walk again (which for 18 months we did not think would be possible). Most importantly, the calm and gentle (but persistent!) approach they took with our daughter has over time repaired the trust she had lost in health professionals. Her views were listened to and respected, and where she felt certain treatment options were working better for her this was supported.
I would want other parents with children experiencing chronic pain conditions to be aware of the services available from the pain team at Sheffield Children’s so they can have the opportunity to access a specialist unit sooner for better outcomes and to reduce the impact of inappropriate care. For us as a family this has empowered us to support our daughter’s needs better ourselves, which as a parent is what you really want to be able to do."
"One year on I am forced to reflect on the life I had pre intervention by you guys and post or as I and lots around me call it……. My miracle.
For many years and crucially the two previous to the operation I endured pain that ran my life. The hardest part…..not being able to walk along the road holding my 8yr olds hand.
When I met with ‘Barney’ and his team this was my only goal. I didn’t expect that following the operation I would be running, playing football (occasionally) lifting the cases on holiday instead of my wife having to do it. And most importantly holding my sons hand to the point that he would rather I didn’t.
In short, you changed my life …..the care, compassion, expertise and support you have provided has been second to none. In fact I will never forget that call to tell me you had pulled out all the stops to get me under the knife for the full implant sooner than planned.
The only thing is you ruined Christmas because nobody can give me the gift that you lot did.
Thank you doesn’t cut it but THANK YOU ALL for everything you have and continue to do for me."
"I have pain in my lower back and left leg, since I had knee replacements about 5-6 years ago. I have tried several different medications and injections, but nothing takes the pain away.
Before my pain problem, I had a very active lifestyle. I was a physical training instructor in the Forces for 4 years and also worked as a dinner lady for 19 years. Until the age of 65, I taught keep-fit classes. Swimming used to be one of my regular activities.
Prior to the Pain Management Programme, I wasn’t pacing and my legs became very stiff and painful. As a result of the programme, I learnt the importance of pacing so that I could walk longer distances and do more household tasks. I now often sit down between tasks and use my perching stool for rests. This helps me to manage my activities.
I feel a lot happier that I’m now able to do more. I often use the bus to go on day trips and go out for dinner. I can do more around the house. My husband and I help each other. I found it very helpful to meet other people, with similar problems, on the Pain Management Programme. It’s important for me to stay positive and think about the things which I can still do.
Three top tips:
1. Keep working at pacing – it does work if you do it properly. Don’t push yourself too far, or else you are no good for the rest of the day.
2. Keep positive and don’t give up. It’s important to have a good attitude and to look forward.
3. Don’t be too proud, if there is help, accept it!"
"My problem with pain started with a pain in my neck, which wouldn’t go away. I eventually had a scan and they found that I had a displaced disc. The specialist told me I could have an operation to put a cage around the disc, but this was very scary as there was a very slight chance of paralysis. I felt very upset about the diagnosis.
Things did not change much, until something occurred to bring back some bad memories from the past.
The pain came on with a vengeance and I just lay in bed, crying and not knowing what to do. It was very hard and depressing, as nobody else can see pain.
I was given paracetamol and codeine by my GP, but it wasn’t touching the pain. I’d heard of the Pain Management Programme and decided to give it a try. I asked my GP to refer me. It took 6 months to get referred, but once this occurred, I never looked back.
I learned all sorts of things and attended many different classes. I went to a relaxation class and attendedsome physiotherapy sessions. During this class, I learnt about the 3 S’s – Strength, Suppleness and Stamina. I also had three sessions with the Team Psychologist, as, by that time, I was convinced there was an emotional aspect to my pain. During these sessions, I was taught about ‘magical thinking’ and how beliefs about my past had held me back in my life. So looking back now perhaps the ‘flooding’ of pain was an important lesson to learn.
One of the things I learnt early on was the difference between acute pain and chronic pain. I had the latter. In a strange way, once I knew I was not going to get ‘better ‘, this released me to take on board the lessons from the Pain Management Programme.
Another lesson learnt is about ‘positive thinking’, the thought that people with chronic pain can help themselves get better. This gradually lightened my mood and I was able to control my pain better.
Eventually, I went to the final Pain Management Programme, which was a small group dealing with things in detail. Gradually and gradually, I started to feel better and to do more. I learnt that, by not doing too much each day, I was able to take on a voluntary position helping at a local charity. In helping others, I am also able to help myself.
Before the pain, I used to go to Pilates. I hadn’t done this for ages, but the Pain Management Programme even helped me to start going to Pilates again. The physiotherapist recommended an NHS referral to a Pilates class that I went to. This helped to rebuild my confidence. I then started to attend a Pilates class, which I still do every Saturday. I have progressed from Level 1 to Level 3, which isn’t bad!
Recently, I went through a period of time when the pain came back as I had got myself into a stressful situation. I was able to rerefer myself to the physiotherapist at the pain clinic, who retaught me the need to pace, to exercise regularly and not to be too hard on myself. This condition is not my fault!
I think of the Pain Management Programme as being a family, which you can be supported by even if you don’t see people very often. I go to the annual follow-up sessions and occasionally phone about something. It’s good to know that they are there.
One final thing, I’ve been able to sit for over an hour writing this, which I couldn’t do in those bad years. So thank you Pain Management Programme and I’d recommend you to those in pain out there."
"It has been over six years since my final appointment with the pain service. Acute abdominal pain began on a school trip to Belgium, and suspected appendicitis meant an appendectomy. A few weeks of what was originally believed to be post-operative pain turned into an 18-month battle with chronic abdominal pain. The pain service was formed by the only health professionals I encountered who had an appreciation of the effects of pain on sleep, exercise, friends and family, and mood. I learnt how not to be afraid of the continuous pain I endured, which was potentially the biggest triumph. The pain team tailored management towards the lifestyle I hoped to regain, and presented information in a level of detail perfect for my age. The journey to recovery was a long one but the techniques and understanding I learnt have stayed with me. Six years on, I am pain free and on the cusp of entering the medical profession myself. The pain service helped me through a difficult period where every day was a challenge. Children and their families who are referred to the Sheffield Children’s Hospital pain service are cared for by an incredibly effective team who provide a seamless continuity of care. Empathy shown by staff surpassed my expectations and gave me faith in their practice right from the start. I cannot thank the team enough for their support, guidance and knowledge. This service is essential, providing people in need of somebody who understands, with a way forward, away from pain. My experience of chronic pain has been a constructive one, and not at all as I had envisaged before my referral to the pain service. I aspire to join this invaluable service, supporting children in years to come, as an anaesthetist who specialises in pain medicine."
For further information for patients and relatives please click here.