Tag: patient perspective

“My Dad died” – The story of the pharmacy encounter when no-one listened

 

I’ve just been to the chemist to collect last night’s (many) prescriptions. Whilst I was waiting, a young woman came in, very dishevelled, a little dazed, carrying a giant meds bag. The following piece describes the encounter and highlights what happened next.

 

‘My dad died’, the girl said to the assistant behind the pharmacy counter.

 

‘These are his medications’.

 

‘Are there sharps in there?’ the girl asked.

 

‘No. My dad died.’

 

‘What drugs are there?’

 

‘He had cancer. My dad died,’ the woman said.

 

Each answer began with ‘my dad died’. Not once did the assistant behind the counter acknowledge it, no matter how many times it was said. No matter how many times.

 

How many times would it need to have been said to acknowledge the girl’s distress?

 

It’s easy to see how voices are missed when no one listens when it’s so obvious someone is desperate to be heard. I’ve been that woman with a meds bag, and it’s horrific. Every encounter is remembered. No matter who it’s with.

 

A consultant in a distant office or returning morphine to a pharmacy. You forget nothing. No one.

 

You can’t teach empathy (I truly believe this), but when someone begins each sentence with ‘my dad died’, they are asking for someone to listen.

 

The thing is when you take a history in psychiatry, you are almost an archaeologist of words. You sift through a narrative to find the fragile pieces you need. You try to make sense of the story.

 

This though, THIS, was a barn door. This was someone desperate to be heard. Anyone, ANYONE, who is dealing with patients, in whatever capacity, needs to be a listener. Because you never know when those fragile pieces will surface. And it might be your only chance to collect them.

 

You really need to ask yourself why someone is delivering their answer to you in this way?

 

Why are they choosing these particular words?

 

Listen to the beat of the narrative and ask yourself if something is wrong. If you are in a job where you meet patients you might be the only person who hears those words. What you decide to do with them can change the course of someone’s life.

 

Can you teach someone to listen? I’m not sure, but if you’re on the front line, dealing with patients, it’s the most valuable skill you’ll ever possess.

 

Joanna Cannon is a psychiatrist and a writer. She lives in Derbyshire and has a successful blog. This blog originated from a conversation on Twitter initiated by Joanna. 

 

 

The long hard road through prescription opioid withdrawal

 

I decided I wanted to come off the opioids altogether. No matter how hard that would be, and I firmly believed that if I did not, they would kill me.

 

This was when it was suggested I go into Newton Abbot Community Hospital for rapid step down of my opioids. I had begun to realise that just maybe my life could improve if I came off the medication.

 

I began to understand there was also a chance my pain might lessen. I did not totally believe this initially, but by now I felt I had nothing to lose. It was explained to me that I would be the first patient locally to go into a community hospital for this.

 

The day before I went into the hospital my pedometer read 40 steps, which would have been from my bed to my armchair, armchair to toilet and back to bed. This had become the norm. I went into the hospital full of fear and excitement all at the same time.

 

Fear of how bad my pain would become and excitement about how my life might begin to improve.

 

The pain Consultant told me he would half my dose of opioids overnight and that the next day my pain would not be worse. I didn’t believe this but was shocked to find it was true.

 

The withdrawal was extremely difficult despite taking Clonidine to counteract the worst of it, but I noticed the benefits almost immediately. Most noticeably the fact that my pain did not get worse and instead, slightly improved.  It continued to improve during the step-down process and beyond.

 

The Consultant suggested I pace the ward to help cope with withdrawal as this would help fire the endorphins, my body’s natural painkiller; it of course worked.  So I put my earphones in while the rest of the ward slept and paced and paced and paced; so much so that when he came to see me the next day my pedometer read over 2000 steps and he had to advise me to slow down a little; I had gone from 40 to 2000 overnight.

 

I also began to sleep better almost immediately apart from when restless legs kicked in which for me was a nasty part of the withdrawal.  My sense of taste and smell went a bit haywire whilst in hospital but gradually started to restore to normal, and I mean normal BEFORE opioids. My food tasted better after a while and I could smell things that previously I couldn’t, and the saddest thing is I didn’t know until I came off the opioids just how badly I had been affected by them.

 

When I got home from hospital at the end of the week the withdrawal continued but by now I was totally buoyed by the massive improvements I was already seeing, the fog was lifting and I was beginning to ‘feel’ again for the first time in years and that made the awful withdrawal symptoms bearable, it may sound dramatic but I felt like I was on my way back, to me!!

 

My mood continued to be up and down over the next few weeks, restless legs were the worst thing to deal with because it would always send me on another marathon just as I was dozing off to sleep.

 

I didn’t have the ward to pace now so I would put in my earphones and dance around the living room which would give me the same effect as pacing; this then progressed to going out to walk with my wheeled walking frame along Teignmouth seafront and anywhere long and flat.

 

I had daily then weekly contact with my CNS after leaving the hospital by telephone and in-clinic which was extremely important in those early days. I then began to access the Pain Management Seminars and met some amazing pain physiotherapists who taught me more coping strategies like Tai Chi, pacing, goal setting etc.

 

Karen and I have walked almost every day since I left the hospital and over time, we have both improved our fitness, wellbeing, and mental health. I call walking my pain relief and therapy now, we go out whatever the weather and take snacks and our cameras and I believe mindfulness plays a huge part in our walking.

 

In May 2019 we were invited to my brother’s wedding in Oswestry which was a Glamping weekend with a walk up a mountain, Gyrn Moelfre, planned for the morning of the wedding!

 

My brother gave me several opportunities to bow out of doing the walk (he and his friends were a serious walking group) after all I was his witness and I needed to be back for the wedding at 4 pm sharp.

 

Karen and I were both determined we wanted to do it, the pace was much faster than we were used to but we did it, we had extra support from two wonderful guys that hung back with us and we finished an hour after everyone else with an hour to spare before the wedding and I can’t tell you the enormous sense of achievement we felt and it is something I will never forget.

 

Two years previously I would never have believed it would ever be possible.

 

I have gradually been able to discontinue many of the medications I was taking whilst on opioids, I was taking Duloxetine 120 mg a day and it has been really difficult to reduce until I got fantastic advice from a pharmacist and now I’m down to 70mg a day. I feel confident that I will be drug-free within the next 6 months.

 

Now I am focussing my life around doing anything and everything I can to help other people come out of the opioid fog. I have been working with the CNS and Consultant that helped me, to produce information leaflets and videos for the inpatient and outpatient step down protocol. I have also become an NHS Volunteer for the Pain Service which was a newly created role. I recently became Chairperson of Involve Giving Something Back Committee which is a Patient Consultancy group seeking to improve the experiences and management of people living with chronic pain. Involves vision is to involve patients with experience of the Torbay & South Devon NHS Foundation Trust’s Pain Management Service in developing and delivering the service.

 

I was appointed as a lay member of the British Pain Society’s Patient Liaison Committee and I am also one of two lay members on the NICE Safe Prescribing Guideline for Opioids, Gabapentinoids & Z Drugs.

 

My wife and I decided we wanted to set up a walking group for people like I was when I was on the opioids, inactive, in pain and isolated. We have discovered that going out for a daily walk and connecting with nature can totally change your perspective, reduce your stress and most importantly reduce your pain.

 

We have been walking daily ever since I came out of the hospital three years ago. We trained as walk leaders last year and through Ramblers Walking for Health scheme, we set up a Grade 1 walk in a local country park. Our local pain service refers people to it. Our walking group is specifically for people living with pain, long term health conditions and/or disabilities.

 

I still live with daily pain; I still have fibromyalgia and arthritis, but I control my pain through walking IT doesn’t control me anymore. I have so far lost 8.5 stone in weight and continue to lose weight.

 

I would love to think I could return to work eventually although I couldn’t return to be a care assistant. It would be great to work in the field of pain in some way, making sure I give time for my therapy… walking!

 

Coming off opioid medication has to be the hardest thing I have ever had to do and by far the scariest but it has also been the best thing I have ever done and every day I have lived opioid-free since then has more than been worth going through the withdrawal, I would urge anyone that is concerned that their opioids may not be working for them to seek help from your GP, pain specialist or pharmacist today.

 

Louise Trewern is a patient advocate who has devoted much of her spare time to explaining her lived experience being on and coming off high dose opioids. She is also a passionate walker for pain relief.

 

A film was made of my experience by the team at Live Well With Pain Website. You can access it by clicking here.

 

 

I think my prescription opioids could have killed me

 

I have lived with persistent pain almost all of my life starting with ‘growing pains’ as a child, which sadly, did not leave me as I got older. This series of blogs describes my journey from dependence on opioids to control my pain to an opioid-free life.

 

My name is Louise Trewern and I am 52 years old. I have 4 grown-up children and am married to a wonderful woman called Karen who for many years was my full-time carer.

 

I have fibromyalgia which wasn’t diagnosed until my mid-thirties and arthritis in my knees and feet. I was sickly as a child and suffered from repeated chest infections that would have me missing school. Whilst there, I was unable to participate in sports. A the time I was told I had bronchitis, a diagnosis later disputed when as an adult I had chest x-rays which threw doubt on this.

 

The pain was my constant unwelcome companion as I entered my working life.

 

It was extremely difficult to cope with, especially as I always felt that my colleagues doubted the legitimacy of my pain experience; this meant I got quite depressed over time. I lived with the myriad of symptoms associated with fibromyalgia, chronic fatigue, widespread pain, various infections, stiffness, poor sleep, depression, irritable bowel etc.

 

Gradually my pain worsened. I developed a bad back that would “lock-up” overnight and this would mean that I could not get out of bed quickly enough to look after my children.

 

I was eventually referred to the pain service and given opioid medication which initially was marvellous. Suddenly, I was able to continue looking after my family and working part-time.

 

Over the following years, the dose of opioids needed increasing to retain efficacy and although I did not realise it, I was beginning to experience the awful side effects of long term opioid use, skin infections, noise sensitivity, gut problems, more frequent colds, which for me would last longer than my friends and family and completely knock me off my feet. I believed the side effects were my fibromyalgia worsening.

 

Many of the side effects required treating with yet another prescription medication.

 

I was hospitalised several times with unexplained severe pain, often in my chest, which was quite scary. Eventually, I had to give up work, I was unable to cope at all due to the awful fatigue coupled with debilitating pain.

 

Gradually my hospital file got thicker and thicker with all the specialities I was visiting for ‘this test and that’ which almost always were returned with inconclusive or negative results. This also had a detrimental effect on my mental health. The anxiety when the doctor says ‘you might have ‘X’ condition we will send you for a test’, then weeks or often months later, receiving the negative results.

 

I became so bad that I would hardly leave the house and hated taking telephone calls even from my family. I could not tolerate any noise in the house, and it would even hurt when the cat walked across my lap. I was unable to make any plans because I never knew how I would be from one day to the next.

 

Babysitting my grandchildren became out of the question unless Karen was with me. I didn’t trust myself not to fall asleep and my self-confidence was at zero. I didn’t feel capable of looking after them.

 

My weight had increased to 25 stone despite my best efforts to lose weight which I now realise was never going to happen because I was not active, I wasn’t sleeping, and I was on a cocktail of medications.

 

The point came when my opioids needed increasing again.

 

I was referred to the Pain Service where I met a wonderful CNS. She began to talk to me about the possibility of reducing my opioids and over several appointments taught me some strategies to cope with my flare-ups of pain. During this time, I suffered my first emergency admission to hospital for opioid-induced impaction.

 

I ended up in theatre for surgical intervention. A few months later I suffered a second and this was the final straw. The theatre staff told me this was a common occurrence for them with people on opioids. This horrified me, especially as I was taking Macrogol sachets twice a day to prevent this.

 

I decided I wanted to come off the opioids altogether, no matter how hard that would be, and I firmly believed that if I did not, they would kill me.

 

Louise Trewern is a patient advocate who has devoted much of her spare time to explaining her lived experience being on and coming off high dose opioids. She is also a passionate walker for pain relief.

 

A film was made of my experience by the team at Live Well With Pain Website. You can access it by clicking here.

 

 

 

Why is it still illegal for me to have an abortion in Northern Ireland?

 

I am in my 40’s, live in Belfast and am married with one child.

 

At the end of 2014 I was ecstatic to find out I was pregnant. We had been trying for a while for a brother or sister for my daughter and I had already been through a devastating and painful miscarriage.

 

At the 20-week scan, which took place a week late due to scheduling problems, I was told that there appeared to be fluid on the brain. It took a week to get a cancellation with a foetal medicine consultant and she carried out an amniocentesis which showed a severe chromosomal disorder.

 

As you can imagine, this was utterly devastating for us. She gave us some information on the condition and suggested Googling it to learn more about the prognosis, which is that 80-90% of babies with the condition do not survive the birth and the rest die within days or weeks.

 

We said we wanted to consider termination but the only thing they were able to offer us was a cardiac scan later in the pregnancy as many of the babies have heart conditions.

 

I have since learned that previously families in Northern Ireland diagnosed with a fatal foetal abnormality (FFA) diagnosis were offered induction however in 2013 the Democratic Unionist Party (DUP) health minister Edwin Poots published revised abortion guidelines which threatened 10 years’ imprisonment for medical staff who carried out abortions that were not in line with the very strict laws in Northern Ireland.

 

My consultant has since told me that following legal advice on those guidelines, medical staff were not allowed to provide any information that would help anyone to get an abortion, including recommending organisations that could help or advising on the most appropriate procedure.

 

We felt utterly cut adrift from any medical support and left to fend for ourselves at the worst moment of our lives. At this stage, we only had a week and a half before the 24-week cut-off point. I have since been told that that cut-off may not apply in FFA cases in England, but due to the rule about providing information, I wasn’t made aware of this. So as far as I knew I only had a week and a half from diagnosis to arrange flights and a surgical abortion somewhere in England.

 

I didn’t know who to go to.

 

A surgical abortion at that stage of pregnancy is carried out in very few clinics. The clinic told me I would need to book a hotel room for the night after the procedure as it would not be safe to travel.

 

My husband and I left our daughter with her granny and stayed in a tiny hotel room in England the night before. I cried myself to sleep. We had to pay £1,100 ahead of the procedure, not including the costs of flights and accommodation.

 

There were complications during the procedure which left me with a punctured uterus and small intestine and I had to be rushed to hospital from the clinic. I had to undergo an emergency bowel section and a hysterectomy, before being moved to the high dependency unit and given 3 units of blood. It was more than a week before I was able to fly home. It was months before I was able to return to work and the experience has taken a toll on my long term physical and mental health. The impact was made immeasurably worse by having to travel so far from home and away from our own healthcare practitioners.

 

My consultant apologised to us afterwards and explained why we had been given so little information. She said we had received a second-class service because of the law here.

 

I am devastated that we were abandoned by our own healthcare system at one of the hardest moments of my life. My healthcare decisions should be between me, my husband and my doctor.

 

I have spoken to a number of elected representatives who have been privately very supportive of my wish that women should not be forced to travel and are trying to work within their parties to move the issue forward.

 

I see there have been a lot of calls for a referendum but this is the last thing we need. It only happened in the Republic of Ireland because it was the only way to change the measure in the constitution.

 

And it was a hugely damaging and traumatising experience for many women who had to put their private stories out in public and experience horrific abuse.

 

The UN CEDAW report has already said that the UK is in breach of human rights by allowing the near-total abortion ban in Northern Ireland. Human rights are not a devolved matter and it is the responsibility of Westminster to legislate on this.

 

I was in tears of relief when the first 8th referendum exit poll came through last year and I wish with all my heart that a similar change could happen here. But it seems there just isn’t the political will and compassion for the thousands of women who have been left to fend for themselves when they most need help.

 

We were cut adrift from our health system when we needed it more than ever. But my experience barely even registers on the health records in NI as it happened in another jurisdiction. I have never felt so utterly faceless and abandoned by the government that is supposed to look after me.

 

I shouldn’t have been kept in the dark by my own medical staff and left to Google abortion clinics. I wanted my baby more than anything, but once we were told the diagnosis, we wanted to get past it and move on. Instead, I was expected to go through months of anguish carrying a dying baby and it seems as though a large number of people in my own Assembly are devoid of any kind of empathy for what I was going through.

 

The author of this article wished to remain anonymous.