Managing Pain - Q3 2020

MANAGING

Q3/2020

PAIN

Full campaign on healthawareness.co.uk

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Antony Chuter Chair, Pain UK

Isolation is daily reality for those with chronic pain.

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Joop Van Griensven Pain Alliance Europe

Why chronic pain patients’ voices are important!

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Dr S .Sooriakumaran FRCP FRCS Consultant in Rehabilitation Medicine

Up to 98% of amputees experience phantom limb in the form of a sensation or pain at some stage in their lifetime.

© P E TE R S C H R E I B E R . M E D I A

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IN THIS ISSUE

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MEDIAPLANET

Isolation is daily reality for those with chronic pain

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Mr Adam Williams

Consultant Neurosurgeon, North Bristol NHS Trust

Spinal cord stimulation for patients with chronic arm, leg or spine pain.

Antony Chuter Chair, Pain UK

06 Dr Bernhard Frank Consultant in Pain Medicine, The Walton Centre NHS Foundation Trust, Liverpool

Incidence of chronic pain is rising, yet not enough treatments are available.

08 Judy Birch BEd A recognised issue for patients nationally is difficulty in being referred for help in managing their pain, despite this being their priority.

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Written by: Kate Sharma

ver the past few months, we’ve all experienced restrictions on our lives and the subsequent feelings of isolation, disconnect and anxiety.

But these experiences were a daily reality for many with chronic pain long before the word ‘lockdown’ entered common vocabulary.

Some may argue that those who are used to living with such restrictions are better placed to cope. However, as Antony Chuter, Chair of Pain UK, explains, the reality is very different.

“For people who are barely surviving – things have been ten times worse. They have been plunged into further isolation,” he explains.

Those living with chronic pain are far more likely to be shielding from COVID-19 and are denied opportunities for interaction – even their regular GP checks are now devoid of human connection.

Mental strain Chuter himself has lived with chronic pain for years and knows all too well the link between mental and physical wellbeing.

“Stress and anxiety make pain worse. In the first few weeks of lockdown I really struggled,” he confesses. A supportive partner, regular video calls with the family, time in the garden and a weekly fish and chip takeaway all helped him to stay positive.

But others are much more vulnerable. “Mental health problems are really building up for some people,” he continues.

“Whatever the GP can give to them, they’re still at home on their own and haven’t seen a living soul for days on end.”

Business is going to change drastically.

A lot of things that make work hard for people – like commuting – have gone away,” he explains. “I’m hopeful that businesses will be more open minded in the future.”

Invisible victims Some, however, are marginalised to the point of invisibility. More than 50% of those who are homeless live with chronic pain, according to research by the charity, Groundswell. Furthermore, 39% felt that physical pain had contributed to them becoming homeless.

While thousands of rough sleepers have been housed in hotels during the COVID-19 crisis, Chuter is concerned that their underlying issues of pain are not being addressed.

“They have complex issues and addictions, often developed through attempts to self-medicate their pain,” he explains. “It’s a big problem.”

Rethinking the future In the midst of these fresh challenges, there is a glimmer of hope. The world of work has changed beyond recognition and that has opened up new opportunities for those who live with chronic pain.

But when that future will start is anyone’s guess; in the autumn; next summer; when there’s a vaccine?

One thing is certain, while lockdown may be easing for some of us, there is no end in sight for others.

Chronic pain remains a terminal, isolating condition for too many people. If our own taste of lockdown makes us more compassionate, that can only be a good thing.

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This article has been initiated and funded by Pfizer UK

Transforming pain services in the post-COVID era

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productivity of operating theatres – but are necessary to ensure patients with increased vulnerability to COVID-19 through age or other underlying conditions can access surgery and pain management services safely.

Unmet medical need in managing pain The long-awaited draft NICE guideline on the management of primary chronic pain was extensively covered in the media only last month, with a proposed recommendation to avoid common pain medicines including paracetamol, NSAIDs and opioids.7,8,9 Although primary chronic pain is classified differently to the pain associated with defined MSK problems such as osteoarthritis, the draft guideline has started a public conversation about what role medication should play in the long-term management of persistent pain and whether patients have sufficient access to the holistic treatment solutions they need.

Times of great disruption often offer opportunities to capture beneficial changes, including insights from patients on which innovations to retain.

The size of the problem Persistent pain is a defining feature of some musculoskeletal (MSK) conditions. 75% of people living with osteoarthritis report some form of constant, daily pain, with one in eight describing it as “often unbearable”.4 But even prior to the pandemic, the British Pain Society documented a high variation across the country in accessing the multidisciplinary care that people living with persistent pain need.5 As the frontline NHS leadership rightly focus on accelerating the return to near-normal health services in the ‘window of opportunity’ between now and winter,2 professional bodies have set out clear prioritisation criteria and guidance for tackling the surgery backlog, such as a shift towards shared regional waiting lists in order to reduce variation across the country.6 Increased infection control measures are inevitably having an impact – for instance impacting the

Sustaining real change At Pfizer, good health is seen as fundamental to the social and economic potential of the UK. As a pharmaceutical company, we understand our role in the national effort to combat COVID-19 is to deliver the medical breakthroughs that change patients’ lives.

But times of great disruption often offer opportunities to capture beneficial changes that healthcare professionals have implemented through necessity, including insights from patients on which innovations to retain. For example, digital health solutions to support self-management of pain or access to specialist pre-surgery exercises via video consultation, while awaiting surgery.

So, while our scientists are advancing novel treatment options, we are also working to highlight the current issues with accessing holistic care for MSK conditions and share innovative practice as part of our effort to help reduce the burden of chronic pain across the country.

This is why we are exploring the benefits of a National Pain Plan, spanning not only health, but business and education, to see how it may improve the lives of millions of individuals and communities across the country.10 References 1. Faculty of Pain Medicine of the Royal College of Anaesthetists 2020. FPM guidance on resumption of pain services following disruption by the COVID-19 pandemic [Accessed 18.08.20. Available at: https://fpm.ac.uk/sites/ fpm/files/documents/2020-05/COVID-Reset-Guidance-on-Resumption-of-Pain-Services-May-2020.pdf] 2. Stevens, S. & Pritchard, A., 2020. Third phase of NHS response to COVID-19 [Accessed 14.08.20. Available at: https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/07/20200731-Phase-3-letter-final-1. pdf] 3. Royal College of Surgeons of England 2018. Almost one in three NHS-funded knee replacements were undertaken in the independent sector last year [Accessed 18.08.20. Available at: https://www.rcseng.ac.uk/newsand-events/media-centre/press-releases/hip-knee-private-sector/] 4. Versus Arthritis 2019. The state of musculoskeletal health 2019. [Accessed 18.08.20. Available at: https://www. versusarthritis.org/media/14594/state-of-musculoskeletal-health-2019.pdf] 5. British Pain Society 2012. National Pain Audit Final Report [Accessed 18.08.20. Available at: https://www. britishpainsociety.org/static/uploads/resources/files/members_articles_npa_2012_1.pdf] 6. Health Service Journal 2020. Revealed: the region where 1 in 4 of the population could be waiting for hospital care by April. [Accessed 18.08.20. Available at: https://www.hsj.co.uk/quality-and-performance/revealed-the-region-where-1-in-4-of-the-population-could-be-waiting-for-hospital-care-by-april/7028211.article?adredir=1] 7. The Times 2020. Don’t give paracetamol to chronic pain patients, doctors told [Accessed: 18.08.20. Available at: https://www.thetimes.co.uk/article/dont-give-paracetamol-to-chronic-painpatients-doctors-told-np86cx7wn] 8. Pulse Today 2020. GPs should not prescribe opioids for chronic pain, says NICE [Accessed 18.08.20. Available at: http://www.pulsetoday.co.uk/news/gps-should-not-prescribe-opioids-for-chronic-pain-says-nice/20041262. article] 9. NICE draft for consultation guideline on Chronic pain in over 16s: assessment and management. August 2020.

[Accessed 18.08.20. Available at: https://www.nice.org.uk/guidance/GID-NG10069/documents/draft-guideline] 10. Department of Health and Social Care 2019. Musculoskeletal Health: a 5-year strategic framework for prevention across the lifecourse [Accessed 18.08.20. Available at: https://assets.publishing.service.gov.uk/government/ uploads/system/uploads/attachment_data/file/810348/Musculoskeletal_Health_5_year_strategy.pdf] ©RIDOFRANZ

Hannah Stevenson Medical Team Lead, Chronic Pain, Pfizer UK

ack in May, the Faculty of Pain Medicine of the Royal College of Anaesthetists highlighted specific impacts of the COVID-19 pandemic on pain management; up to 1 in 4 specialist pain clinicians reported that services had been fully suspended and 78% of those who maintained services were relying on remote consultations.1 Three months later, NHS England set the priority for recovery – accelerating the return to near-normal levels of nonCOVID-19 health services.2 Thinking about the many people whose non-urgent elective surgeries have been postponed during the emergency pandemic response – such as the 250,000 people having hip or knee replacements annually3 – their ability to access local pain management services during an extended wait for surgery is crucial.

As the NHS implements its return to service ambitions for patients needing both urgent and elective care, today’s challenge is to capture learnings from the initial pandemic response while managing the threat of a second wave.

August 2020 PP-PPF-GBR-0026

For more information about Pfizer in the UK, visit www.pfizer.co.uk or follow us on our social channels @Pfizer_UK @PfizerUK

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MEDIAPLANET

Why chronic pain patients’ voices are important!

Spinal cord stimulation

for patients with chronic arm, leg or spine pain

Chronic pain patients’ needs to live better with chronic pain must always be considered in developing research, therapy and social/psychological/economic support.

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hronic pain has a profound effect on patients; beyond the physical pain, it results in disability and impacts on their occupation, mood, sleep and relationships. Treatments are challenging and require approaches to address both the physical and psychological aspects.

Joop Van Griensven President, Pain Alliance Europe (PAE)

What is it used for?

Spinal cord stimulation (SCS) is an advanced treatment for chronic pain that is helpful for certain patients with a type of pain called ‘neuropathic pain.’ This is normally pain in the limbs that has not responded to standard spinal surgery. However, SCS is used for other conditions such as complex regional pain syndrome (CRPS) or diabetic peripheral neuropathy.

How does it work?

A device similar to a heart pacemaker is placed under the skin with minimally invasive surgery, electrodes are passed through the spine and placed the surface of the spinal cord. The stimulator transmits electrical waves that can help mask the excess pain signals the body is producing. With newer waveforms, SCS may also reduce the negative emotional response to the pain within the brain itself.

Transforming data into patient care Once the surveys are complete and the analyses published, we publicise these results to the main stakeholders: healthcare professionals (HCPs), policymakers, politicians and researchers. We do this by participating in events in the European Parliament and organising our own events. We present the outcome of these surveys and we ask for replies from the stakeholders. We are invited to attend HCPs’ symposia where we can provide abstracts on the results and, where possible, get involved in discussions.

Using the outcome of these events, together with the survey results and the wishes of our members, we help develop recommendations to give to politicians and policymakers. We publish these recommendations in our newsletter and on our website and also on the EU Health Policy Platform.

Who is it helpful for?

Diagnosing which patients are likely to benefit from SCS is a highly specialised process and requires a team of clinicians including pain doctors, neurosurgeons, neuropsychologists and specialist nurses. Even then, the patient requires a trial of the stimulation to assess whether it is helpful before the final device is implanted.

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What might the future hold?

This is an exciting field with emerging technologies that might provide further benefits to patients.

These include more advanced ‘multi-waveform’ systems, devices with batteries that do not need to be implanted and others that can ‘read’ signals in the spinal cord and adapt the stimulation to them. We hope this will enable us to improve outcomes and indeed to treat patients with other causes for their pain.

Mr Adam Williams Consultant Neurosurgeon, North Bristol NHS Trust

Surveys into chronic pain patients’ needs Getting to know the chronic pain patients is the first step in finding out their needs. The complexity of the patients’ needs extends beyond health issues into wider aspects of their lives. For that reason, Pain Alliance Europe (PAE) does annual surveys, which started in 2017.

Over the last four years, the topics have been: ‘Diagnosis and Treatment’, ‘Work and Income’, ‘Stigma’, and, this year, ‘eHealth and mHealth’.* There is a logical line in these surveys as they explore areas that are important for patients. The medical part, the social/psychological part, and the economic part. This, combined with new technologies that patients may be using, gives a good indication of their needs.

Patient input to research is very incredibly beneficial for all When analysing the survey results, it is easy to identify several topics that need further research. The answers given by the patients are an excellent source for young and also established researchers to work on.

However, they need to do this with patients or patient representatives because the patients have provided information about what is needed.

It is therefore logical they should be involved in formulating the research questions. This ensures the research will be on aspects of the needs identified by the patients.

When patients are involved in the process of creating a research project and included on ethical and advisory boards, it guarantees researchers don’t forget for whom they are doing this. Patients participating in the dissemination of the results will help ensure the right people are seeing them and that the results are not only for the happy few who read scientific papers.

*The 2020 survey will close in June and the results will become public in August. The other surveys are published on the PAE website www.pae-eu.eu/ surveys where all the reports are available.

Our end goal is to improve people’s lives PAE has a very clear reason for developing these surveys, making sure the analysis is done by experts and publicising the results, ensuring the outcome reaches a broad audience, transforming the results into recommendations for policymakers and politicians, and encouraging researchers to investigate the omissions identified by the patients. The reason is the mission of PAE: “Improve the quality of life of people living with chronic pain in Europe.” These efforts should help PAE to reach the stage where we have completed our mission.

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How to find long-term gain for long-term pain

Dr Simon Thomson MBBS FFPMRCA Consultant and lead clinician in pain medicine and neuromodulation, Mid & South Essex University Hospital NHSFT

Dr Jan Willem Kallewaard Anaesthesiologist, Amsterdam University Medical Centre

Less risky options could help with pain management Too often, people suffering longterm pain remain stuck, taking potentially addictive medicines

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ain specialists believe that better information and more open attitudes to treatment can work wonders for the health of people in long-term pain.

Specialists in pain management say that one of the most common problems with health systems is that patients are not referred to the correct treatment for their specific pain at the right time.

This can be due to financial restrictions within health systems, but it can also be due to clinicians’ lack of awareness of the benefits of available therapies and the health outcomes that may be achieved.

According to Dr Simon Thomson, consultant in pain medicine and neuromodulation, there are many different types of pain, and a wide range of physical components to consider for each.

In addition, each patient will have psychosocial factors that may impact the outcome of treatment, including the patient’s attitude to their pain and to the available treatments – of which there are now many different types.

However, it’s rare that all these factors are taken into account when a clinician considers making a referral, Dr Thomson believes.

He says: There can be a degree of ‘old school thinking’ among pain clinicians. The challenge is to work out what are the most cost-effective ways to achieve better outcomes.”

such as opioids, or are fast-tracked into invasive surgeries, when less-invasive, less risky and more effective treatments are available.

As an example, in the Netherlands, an outpatient therapy called radio frequency (p) RF ablation is commonly used ahead of surgery for patients with chronic pain in the cervical and lumbar regions, and in the knee and hip.

Performed under local anaesthetic, RF ablation involves the use of electricity to create lesions on a target nerve to reduce pain. According to Dr Jan Willem Kallewaard, anaesthesiologist at the Amsterdam University Medical Centre and Rijnstate hospital in Arnhem, the great advantage of this treatment is that it can target very specific nerves reducing the impact on surrounding tissue and can offer significant improvements in a patient’s quality of life.

Dr Kallewaard explains: “Before treatment patients might not even have been able to walk 50 metres, and afterwards they can walk up to two hours. This can make a huge difference to people who otherwise have to live in pain.”

Pain referral e-tool can help clinicians with diagnoses To support clinicians through the maze of pain indications, patient attitudes and treatments, an international panel of experts have devised a pain referral e-tool. This aims to improve the way patients are selected for referral to specialist pain therapies, for example, spinal cord stimulation (SCS).

Dr Thomson believes that giving patients the right treatments quicker and more easily can have cost savings for health systems, which otherwise will fund the longterm costs of drug therapy. For patients, the results of a successful treatment can be life changing.

He says: “People talk about getting their lives back, or finally seeing their partner free of pain.

Often, by the time they receive SCS, people have spent six years in chronic pain. After all they’ve been through, it’s amazing if, right at the end, we can make a difference.

“Part of what we are trying to do is to gently push for earlier recognition of suitable cases, and to create a referral pathway that is quicker and easier for everyone to access.”

Read more at healthawareness.co.uk

EVERY PATIENT IS UNIQUE Chronic pain is unique to each individual patient and our Boston Scientific Pain management portfolio offers a more personalised, targeted and effective therapy.

A leading innovator in Radiofrequency (RF) and Spinal Cord Stimulation (SCS) therapy, we have helped thousands of patients worldwide to find pain relief and live their lives again.

Learn more about how SCS and RF systems can help your patients: www.bostonscientific.eu CAUTION: The law restricts these devices to sale by or on the order of a physician. Indications, contraindications, warnings and instructions for use can be found in the product labelling supplied with each device. Information for use only in countries with applicable health authority registrations. This material not intended for use in France. Products available in the European Economic Area (EEA) only. Please check availability with your local sales representative or customer service. Results from case studies are not necessarily predictive of results in other cases.

Results in other cases may vary.

NM-866703-AA © 2020 Boston Scientific Corporation or its affiliates. All rights reserved.

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“There’s a huge need to raise awareness of chronic pain” Incidence of chronic pain is rising, yet not enough treatments are available.

In this underfunded field, more translational research is urgently needed.

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Recent advances in management of phantom limb pain

Paid for by Pain Relief Foundation

Among the wide-ranging presentations of chronic pain, phantom limb pain is considered to be the most curious and challenging to overcome. In the United States, about 1.7 million individuals were estimated to be living with limb loss and this number is projected to increase to 3.6 million by the year 2050.

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Dr Bernhard Frank Consultant in Pain Medicine, The Walton Centre NHS Foundation Trust, Liverpool

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hen Dr Bernhard Frank started work in the field of pain research two decades ago, the incidence of chronic non-malignant pain affected around five to 10% of the adult population. Now it affects around 20%.

“Unfortunately, there aren’t many medications that are licensed to treat chronic pain conditions,” he says.

“In fact, there hasn’t been a breakthrough treatment for chronic pain in the last 15 to 20 years, and there’s a huge need for one. You only have to look at the overprescribing of opioids to realise that chronic pain is a big problem.”

More translational research is therefore required to improve treatment options, says Dr Frank, Consultant in Pain Medicine at The Walton Centre NHS Foundation Trust in Liverpool. The trouble is, the area of pain research is desperately underfunded, and many drug companies have lost interest in developing pain medication after experiencing negative outcomes in expensive phase 3 trials.

“As an academic field, pain medicine is just not a major topic compared to, say, cardiology,” he admits.

“Also, there aren’t many pain specialists on the committees that decide on funding applications. It’s therefore harder for them to make an informed decision on an obscure area of research such as chronic pain.”

Dr S Sooriakumaran FRCP FRCS Consultant in Rehabilitation Medicine

New ways of funding pain relief research There are, however, two developments that give Dr Frank some cause for optimism. The first is the Advanced Pain Discovery Platform, a potentially game-changing £24 million initiative to deliver pain research. It’s funded through the Government’s Strategic Priorities Fund and delivered in partnership through the Medical Research Council (MRC) and other stakeholders. “It will be interesting to see what this delivers in terms of better translational research,” he says. “Although, really, £24million is just a drop in the ocean.”

Then there’s the crowdfunding phenomenon. “This is something we’re looking at doing, although it’s in its early stages,” he says. “Rather than applying for a five-year project grant, crowdfunding will allow researchers to complete their work step by step. Then they might at least have something to show would-be donors to demonstrate that their science is on the right trajectory. It could be the way to finance pain relief projects in the future.”

Written by: Tony Greenway

© P H OTO BY A N N A S H V E T S / P E X ELS

Many drug companies have lost interest in developing pain medication after experiencing negative outcomes in expensive phase 3 trials.

p to 98% of amputees Phantom pain can vary in severity experience phantom and manifest as paraesthesiae limb in the form of a – pins and needles; dysaesthesiae – sensation or pain at some burning/stabbing; and/or allodynia stage in their lifetime. In addition – stimulus that normally does not to the profound physical and result in pain. psychological aftermath of limb amputation, phantom limb pain Assessment and treatment can be quite debilitating, affecting A thorough assessment, including health-related quality of life. history, physical examination and Hence it is crucial for the treating specific investigations, is crucial to clinicians to be skilled in evidence identify treatable causative factors. based recent management.

Adversities in the residual limb, Over the years, researchers have poorly fitting prostheses, general brought forward different theories physical and mental health can all to explain phantom limb pain. It trigger phantom pain. is now widely accepted as a form A holistic approach targeting of neuropathic peripheral – pain involving desensitisation peripheral, spinal techniques, and supraspinal transcutaneous levels. Functional electric nerve MRI scans have stimulation, Up to 98% of shown cortical sonographicallyamputees experience reorganisation guided steroid phantom limb in the following or botulinum amputation with toxin injection, form of a sensation strong correlation radiofrequency or pain at some stage with phantom limb ablation, surgical in their lifetime. pain severity. excisions and targeted muscle reinnervation; spinal cord stimulation; and central neural mechanisms – pharmacotherapy, mirror reflection-induced feedback, virtual and augmented reality are being practiced with varying efficacy.

Perioperative and intermediate to long-term pharmacological treatment is widely used.

Medications prescribed include NMDA receptor antagonists, opioids, anticonvulsants, antidepressants and local anaesthetics. Functional prosthetic feedback is known to be an effective therapeutic tool to reduce phantom limb pain.

Further studies and a multidisciplinary approach are crucial Considering the projected increase in global prevalence of amputation, effective management of acute and chronic phantom limb pain is of paramount importance. Further studies are needed to elucidate the peripheral and central mechanisms responsible. Effectiveness of pharmacological, surgical and virtual reality methods need robust evaluation. A multidisciplinary approach to enable amputees to cope better with pain and to improve their function and quality of life should be the goal.

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© S H OT P OT F R O M P E X ELS

Research will help ease the misery of phantom limb pain

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ore needs to be done to understand phantom limb pain and the management strategies that help people cope with it, says David Rose, Chair of Trustees at The Limbless Association.

David Rose Chair of Trustees, The Limbless Association

What is phantom limb pain?

It’s a phenomenon where the nervous system refuses to accept the loss of a limb, resulting in a nervous response being sent to a part of the body that no longer exists. Symptoms can include mild pins and needles to feelings of extreme cold. At its most injurious, it causes high levels of severe neuropathic pain which, tragically, has led to suicide in some cases.

Where is the pain felt?

I’ve experienced phantom limb pain every day for 41 years since the loss of my lower right leg in a motorcycle accident. I’ve had to learn to adjust and cope with it — although, thankfully, my pain is relatively low level. Today, I’m experiencing pain in the back of my calf and ankle, and a tingling sensation around my toes. I’m feeling this in my residual right leg, exactly as I would do in my fully functioning left leg.

How many people experience phantom limb pain?

It’s difficult to put a number on it because limb loss affects different people in different ways. I can say that, around the world, there are tens of thousands of amputee veterans of recent conflicts who are living with severe forms of it. Also, most patients with limb loss will experience a period of phantom nerve pain to a greater or lesser

extent. Some of us will have it forever. Others find that after 10, 15 or 20 years, it simply fades away.

Why has there been a lack of information and support for managing phantom limb pain?

It’s a subject that hasn’t received anything like the attention it should have done. I think that’s because medical science has no ‘cure-all’ for it. There are drug treatments, but there’s no intervention that can simply take it away once symptoms present themselves.

There’s been more of a focus on development of treatments for conditions and diseases that will achieve measurable benefits for patients. Unfortunately, I think phantom limb pain falls outside of that medical remit.

Are pain management strategies available to patients?

Yes. These are many and varied and include anti-depressants and high-strength pain medications.

Lower level, non-steroidal antiinflammatories are available too, but generally these don’t provide much relief. There are also numerous practical interventions, such as applying ice packs to the end of a residual limb.

Personally, I find a warm bath can be beneficial, while others find it helpful to keep water flowing on the end of their residual limb when they’re having a shower.

Some people use aromatherapy, acupuncture and TENS machines (transcutaneous electrical nerve stimulation). What works best will differ from patient to patient, however, because of the unique nature of this condition.

Is it time to review phantom limb pain research and evaluate treatments and coping strategies?

Yes. I often hear of research being undertaken in various areas of phantom limb pain, but I don’t tend to see outcomes of trials and tests, or the reporting of practical results with real patients.

A patient-centred approach is necessary to better understand and cope with this condition.

People with personal experience of limb loss need to engage with scientists at the beginning of the research process. We know this approach works because we have some incredible prosthetic science and technology available to us now – such as the processor in my prosthetic leg that stops me stumbling and falling – which was developed by researchers engaging with amputees at an early stage.

Marvellous, incredible outcomes have been achieved. The same thing should be happening in the area of pain management.

Written by: Tony Greenway

At its most injurious, it causes high levels of severe neuropathic pain which, tragically, has led to suicide in some cases.

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Developments in recognising chronic pelvic pain

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iving with any chronic pain imposes a heavy economic and social burden. The Pelvic Pain Support Network (PPSN) is a patient and volunteer led charity. Established in 2006, the charity supports those with undiagnosed as well as diagnosed, long-term (chronic) pelvic pain, by highlighting this much neglected area and improving access to care for patients.

What is chronic pelvic pain?

Chronic pelvic pain is defined as either intermittent or constant pain in the pelvic region lasting longer than three months. It presents in primary care as frequently as migraine or low back pain.

The World Health Organization (WHO) has recognised the International Classification of Diseases 11 (ICD 11) work on chronic pain, which takes effect in 2022. This means that chronic pain is now noted as requiring special consideration and treatments; chronic pain can be tracked as a diagnosis or co-diagnosis in an underlying disease, and data such as cost information, treatments, and societal impact of pain can be made more readily available. ©JCSMILY

What are the challenges for pelvic pain patients?

Nationally, patients face difficulty in being referred for help in managing their pain, despite this being their priority. Services are designed to cater for those with straightforward pelvic pain issues that can be resolved quickly by a single specialisation.

Chronic pelvic pain encompasses gynecological, urological, gastrointestinal, neurological and musculoskeletal causes and it is not unusual for more than one of these to be involved.1 This can present a clinical challenge with regards to assessing, treating and managing symptoms as, traditionally in the UK, there has not been a multidisciplinary approach to pelvic pain.

In complex cases it may be difficult for any single speciality to decide how to progress the care of the patient necessitating referral to a regional pain management centre.2 NICE recognises the benefit of pain management programmes for chronic pelvic pain.3

What is PPSN doing to improve the situation?

Within the charity, we encourage a multidisciplinary approach and work to change the traditional culture.

Our advocacy role involves campaigning on behalf of pelvic pain patients through representation at conferences, meetings, workshops, policy development and events for clinicians and the public. We invite and encourage patients to participate in all aspects of our work and regard developing their skills as crucial.

We help educate both the medical profession and the public, by raising awareness in all matters relating to pelvic pain and its treatments. Patients deliver sessions on the “patient experience” for undergraduate nurses and doctors. This forms part of the chronic pain curriculum for nurses and for fourth year trainee doctors in the obstetrics and gynaecology rotation in some UK universities.

The charity was awarded first place in the category “Professional Education” for the European Civic Prize on Chronic Pain in recognition of our work “Patients as Teachers in Health Professional Education”. Patients who deliver this have broader experience of treatment within and outside of the UK, elsewhere in Europe.

We have organised several workshops to encourage cooperation between clinicians and researchers from various disciplines and countries to foster a greater exchange of information and collaboration in the field of chronic pelvic pain.

We encourage research by appropriate institutions that aims to improve the quality of life of those with pelvic pain. PPSN continues to represent those with pelvic pain in many research trials and studies. Several of these have been published and some are ongoing.

This involves patient input at all stages of the process from the pre funding application stage through to dissemination of the results. An example of such research is described in the accompanying article.

Information and support for those with pelvic pain and those close to them is available via our website, message board and Facebook page. Patients appreciate information that helps them to understand their pain and what they can do to help manage it. This allows them time to digest information and can facilitate shared decision making.

©YODIYIM

Judy Birch BEd Co Founder and CEO, Pelvic pain support network

References 1. EAU Chronic Pelvic Pain Guideline https://uroweb.org/guideline/chronic-pelvic-pain/ 2. The Royal College of Anaesthetists: Faculty of Pain Medicine (2015). Core Standards for Pain Management Services in the United Kingdom.

3. The National Institute for Clinical Excellence (2017). Endometriosis: diagnosis and management. NICE guideline NG73.

Read more at pelvicpain.org.uk @pelvicpain

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New approach in research on two pelvic pain disorders Dr Paulina Nunez-Badinez Judy Birch BEd

Lydia Coxon BA

E

ndometriosis and interstitial cystitis affect millions worldwide. The causes of both diseases remain unknown, there is no cure and pain frequently persists and can worsen.

Status of the conditions The recently updated International Classification of Diseases, ICD 11 includes the category “chronic visceral pain from persistent inflammation in the pelvic region”, hence recognizing the pain associated with Endometriosis and Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS)1. The publicprivate partnership Innovative Medicines Initiative, IMI-PainCare, aims to improve the management of chronic pain. Specifically, Chronic Pelvic Pain is the focus of their subproject TRiPP (Translational Research

The causes of both diseases remain unknown, there is no cure and pain frequently persists and can worsen.

in Pelvic Pain) which is committed to improving the translation of laboratory and clinical findings into treatment for Endometriosis Associated Pain (EAP) and IC/BPS. Diagnosis and treatment of endometriosis and IC/BPS Endometriosis and IC/BPS are difficult to diagnose, with laparoscopic surgery and histology required for endometriosis diagnosis and IC/BPS being diagnosed when all other possible diseases causing bladder pain and increased urinary urgency and/ or frequency are excluded. Whilst there are guidelines for treatments to improve pain symptoms, any symptom improvement is generally short-term and treatments have associated sideeffects. Preclinical research in animal models for EAP and IC/ BPS are at different developmental stages with a lack of consensus, which hinders the development of new medicines.

Disease understanding is essential Currently, improving patient management is challenging because of the complexity of the disorders

and our limited understanding of them. The TRiPP strategy is based on obtaining information, including biomarkers, directly from patients in order to identify the relevant biological pathways affected in these disorders. This information will be used to refine the existing preclinical models, with a particular focus on translational aspects so that they better reflect the symptoms seen in EAP and IC/BPS. One of TRiPP’s hypotheses is that the pain symptoms in EAP and IC/ BPS are generated and maintained by mechanisms which are similar to those seen in other chronic pain conditions and that they occur alongside specific pathological lesions and symptoms. The project also aims to establish whether women with EAP and BPS can be stratified into subgroups and to explore whether these subgroups relate to treatment response.

References 1. Aziz, Q., et al., The IASP classification of chronic pain for ICD-11: chronic secondary visceral pain. Pain, 2019. 160(1): p. 69-76.

IMI-PainCare TRiPP aims to provide the scientific community with better tools to both manage pain and to discover new treatments and cures for endometriosis and IC/BPS, ultimately improving the quality of life for patients.

Detailed information on this consortium can be found at www.imi-paincare.eu/

Paid for by IMI - Paincare

This work has received support from the EU/EFPIA/ Innovative Medicines Initiative [2] Joint Undertaking (IMI-PAINCARE) grant No 777500 www.imi.europa.eu

Any symptom improvement is generally short-term and treatments have associated side-effects. ~ Dr Paulina Nunez-Badinez Judy Birch BEd Lydia Coxon BA ©HAYDAR DOGRAMACI

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COVID-19 and the impact on the pain patient Chronic pain is a prevalent condition that causes significant functional disability and reduced quality of life. In Europe alone, almost one in five individuals report having moderate or severe chronic pain.

T

he response to the COVID-19 pandemic means that the care of individuals with pain has been significantly impacted. Many services for patients have been cancelled or suspended including out-patient appointments, elective surgeries, and multi-professional pain management services.

While some settings have transitioned care options involving treating individuals online or over the phone (telehealth), many patients with pain have been left without care and find themselves waiting in uncertainty.

Survey evidence from Austria has reported that patients with hip and knee osteoarthritis who had their surgery deferred due to COVID-19 experienced higher pain and anxiety. Similarly, in the UK, a survey undertaken during the most restrictive part of the COVID-19 lockdown reported that individuals with chronic pain reported increased pain intensity as well as higher levels of anxiety, depression, loneliness and reduced levels of physical activity compared to individuals with no pain.

Reduced opportunities for social support have also strong potential to contribute to poor psychological health and impact disability levels.

What needs to be done?

Efforts are urgently required to support individuals with chronic pain with their pain management. At the European Pain Federation EFIC we have created a COVID-19 Task Force to distribute new research to doctors, physiotherapists, psychologists and nurses looking for evidencebased information regarding pain treatment of their patients.

Further details can be found here:

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Migraine – how much control do you actually have?

Some migraine sufferers consider they can trigger a migraine. Some have symptoms before headache, which can be mistaken for triggers. How much control over whether you have an attack or not do you really hold?

Migraine triggers Many people with migraine identify factors, such as foods and bright lights, that they consider as triggers for their migraine attacks.

Some feel a change in pattern of regular behaviour, such as altered sleep and food and drink intake, can be triggers.

We know that the brain of someone with migraine likes balance; such as regular sleep and meal patterns, and we also know that migraine can be triggered by alcohol and the menstrual cycle.

The evidence for other triggers is less impressive. When researchers have tried to trigger migraine in experiments using measures such as exercise, chocolate ingestion and bright light, they have largely been unsuccessful.

Premonitory symptoms Many sufferers, when prompted, can identify painless symptoms of a migraine attack starting hours to days before headache, that act as a warning of its onset. These are called premonitory symptoms.

A range of symptoms have been reported including mood and cognitive change, light and sound sensitivity and food cravings.

The brain is already behaving abnormally before headache, which we know from studies of electrical activity and imaging.

Given the brain areas involved during this time include those

that can generate food cravings, then, for example, sweet cravings could occur before you know the attack has started. If you then eat some chocolate, and soon after develop a migraine headache, you may think that the chocolate has triggered the migraine. However, the attack had already started. In this situation, it is conceivable that the chocolate was correctly associated with the attack, but incorrectly attributed as a trigger.

The same could be true for other triggers like bright light perceived as a trigger and light sensitivity in the premonitory phase, and strong smells as a perceived trigger and smell sensitivity in the premonitory phase, among others.

What causes premonitory symptoms?

While we have some understanding of the pain-generating pathways in the brain, we do not really know how the migraine attack starts in the brain and causes premonitory symptoms. We know that the brain behaves abnormally during this time, in areas that could feasibly be causing the symptoms, like mood and memory areas and the part of the brain responsible for regulation of food and water intake and sleep cycles (the hypothalamus).

The similarlity in premonitory symptoms with some reported trigger factors, the involvement of corresponding brain areas during

premonitory symptoms and the general difficulty in triggering migraine experimentally, have made us think that perhaps many triggers are misperceived as early migraine attack symptoms and that avoidance of lifestyle and environmental factors may be unnecessary and unhelpful.

How much control do you have?

This leads to the question: how much control do you have over your migraine? The associated question being, is ‘trigger avoidance’ a useful treatment strategy? We would suggest detailed diary documentation of attacks, with symptoms and perceived triggers before pain, and pain onset relative to these, so that a sufferer can evaluate the reliability of a particular trigger factor, or indeed assess if it is actually associated with the corresponding premonitory symptom.

Systematic symptom capture in this way could help shape migraine therapeutics going forwards, enabling assessment of early treatment, trigger modification and attack prediction.

No doubt many migraineurs can identify triggers; however, if you cannot, perhaps reflecting on early premonitory symptoms will provide understanding and new answers.

Dr Nazia Karsan Headache Clinical Research Fellow, King’s College London

europeanpainfederation.eu/news/ efic-covid-19-task-force/

Brona Fullen President Elect, European Pain Federation

Dr Goadsby NIHR-Wellcome Trust King’s Clinical Research Facility, King’s College London

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Endometriosis affects 1.5 million of those assigned female at birth – have you heard of it?

Have you heard of endometriosis? Symptoms include chronic pelvic pain, painful bowel movements and painful sex. It’s suffered by 10% of women and those assigned female at birth, and the chances are you know someone with the disease.

Yet, 74% of men don’t know what endometriosis is, nor do 62% of young women, despite the fact it can be active from puberty to menopause.

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What is endometriosis?

Endometriosis is a condition where cells similar to the ones in the lining of the womb grow elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way as those lining the womb, building up and then breaking down and bleeding.

However, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions).

Symptoms experienced vary from person to person, depending on where the endometriosis grows. If you have one or more of the following, you could have endometriosis:

• Chronic, severe pelvic pain • Painful periods • Painful sex • Bowel and/or bladder problems • Fatigue • Difficulty getting pregnant

For more information including guidance on getting a diagnosis, visit www.endometriosis-uk.org

© S M O L AW 1 1

or too long, menstrual health conditions like endometriosis have been swept under the carpet, labeled “women’s problems” and not talked about. The chronic, sometimes debilitating pain that many with endometriosis experience cannot be ignored any longer. Those in severe pain, vomiting or passing out due to pain, should not be told it’s ‘normal’ period pain, they’ve got a low pain threshold, or they’ll grow out of it.

By being prepared to talk about menstrual wellbeing we can help break the taboo and support those suffering with endometriosis.

What to do during COVID-19 Many experience period pain, but if you have pelvic pain that is interfering with your everyday life, it’s best to see a doctor. Although services have been disrupted due to the outbreak of COVID-19, GP surgeries are still open for business and you can call your surgery to find how you can access their support. In preparation for your GP appointment, keep a pain and symptoms diary so you can easily explain what you’re experiencing.

Endometriosis symptoms overlap with those of other conditions and having a diary of what you’re experiencing, and when, can help doctors recognise what’s going on.

Difficult diagnosis due to the taboo surrounding endometriosis Diagnosis takes an average of 7.5 years in the UK. This is due to a combination of people with endometriosis thinking the level of pain they are enduring is normal, menstrual issues considered taboo or embarrassing, and symptoms not always being picked up even when help is sought. During this time, pain management is rarely offered.

We all have a role in turning this around. By being prepared to talk about menstrual wellbeing we can help break the taboo and support those suffering with endometriosis.

Emma Cox CEO, Endometriosis UK

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