The importance of self-management in the community for those with chronic pain, especially during Covid-19
Sonia Cottom - Director, the Pain Association Scotland
For NURSING IN PRACTISE 08 Jul 2020
Chronic pain management is a major person, societal and economic burden. For the majority of those suffering from chronic pain, it is not about the length of time they have had the pain, it’s about the loss of function, loss of identity, loss of mental health and indeed for many, a loss of hope. 1,2
The bigger picture of chronic pain is quite often forgotten such as direct costs associated with the disease. Such costs are mostly hospitalisation and outpatient care, medication and equipment to improve activities of daily living. Indirect societal costs are dominated by social benefits, unemployment benefits, sick leave, productivity losses, absenteeism and early disability retirement – quite often for those who are to become carers too.3
There have been many articles written around the evidence of chronic pain treatments and interventions. However, for this article I am going to discuss the need, the importance and the outcomes of the provision of self-management skills and strategies in the treatment of chronic pain in a community setting, particularly during Covid-19.
The Covid-19 pandemic has been a been a great teacher in demonstrating not only the importance of self-management, but also how, when many statutory chronic pain services ceased being able to see patients, the importance of a third sector organisation being able to step up and provide a service in order to help those burdened with chronic pain, at a time when access to many statutory services ceased.
Self-management is a core driver of reform in health and social care in Scotland, including the National Clinical Strategy, the Chief Medical Officer’s report on Realistic Medicine and Making It Easier, the national Health Literacy Action Plan. Self-management can be described as a set of approaches which aim to enable people to feel able to live well on their terms with a long-term condition. It includes a spectrum of support that help someone to learn about their condition, acknowledge the impact it has on their life, make changes and identify areas where they require support.
Our work at Pain Association Scotland is usually delivered through intensive self-management courses and monthly self-management group meetings throughout Scotland. People can either self-refer to our service or they can be referred via primary or secondary care.
When the lockdown was announced due to Covid-19, we not only had to instantly switch our service delivery to on-line via Zoom, but we also had to look at ways in which we could diversify our service to help more vulnerable people. We knew that 150,000 people have had their PMP’s stopped due to Covid-19 4, and in Scotland, 11 out of the 14 health boards had suspended their pain clinic appointments and interventions. 5.
We had received various phone calls from GP’s asking if we would be able to take a referral from them as they had no-where else to refer patients to for support within secondary care. It was also important to take cognisance of those people who were unable to get on-line or use technology. This meant speaking to people via phone and sending them printed material. Several days of this prompted us to approach the Scottish Government’s National Advisory Committee for Chronic Pain to see how we could work with them at a national level in order to ensure that chronic pain support was provided and that support and treatment was not a postcode lottery.
Over the course of a few weeks, we had worked collaboratively with both primary and secondary care colleagues in the field of chronic pain and created the basis of a digital platform, which acts as the equivalent of a ‘first appointment’ at a pain clinic, which those in primary care could refer patients to rather than leaving them without key support. All the various treatments and options are covered during this session, but there is a large focus on self-management, empowering people to take control of their pain and helping them explore what they can do for themselves. As well as this, we also provided additional on-line intensive self-management courses for those who were waiting for an appointment at a pain clinic, waiting on an intervention or who were unable to attend a statutory pain management programme due to suspended services.
Our service delivery is person-centred and based on a bio-psycho-social model. It is not just about pain, rather the focus is on dealing with pain the wider context of life, health and well-being. We provide a combination of learning and education with normalisation and peer support and help people make the transition into a non-clinical setting in which they can realistically engage with ideas, discuss them, hear from those who have made progress, support those who are struggling and thereby integrate self-management into everyday life.
People with chronic pain are in many ways their own primary carers; well controlled chronic pain often results in less productivity losses, hospitalisations and other use of healthcare resources. Self-management education and learning programmes are designed to meet this need.
One of the mechanisms responsible for the improvements in health status, demonstrated by those attending self-management programmes, is self-efficacy. Adherence, or more precisely, concordance with medical treatment is closely linked to the patient’s ability to self-manage their chronic pain and is shown to be an important factor in determining increase in self-efficacy.
As we look beyond Covid-19, we are aware that there could well be chronic disability as an outcome for all those who have suffered with coronavirus. Ultimately, this will create additional pressure on pain management clinics, many of whom are already months (and sometimes years) behind as they begin to look at resource needed to address such waiting lists. Following on from this, there is certainly a growing need to provide a more diverse service for chronic pain patients. Many people are unable to travel either due to the severity of their condition and limited mobility or due to the geography of where they live. We therefore intend to ensure that our future service delivery of providing on-going monthly supported self-management contains an element of both face-to-face and on-line service provision.
It has also highlighted that not everyone suffering with pain needs a referral to a secondary care chronic pain clinic. Healthcare professionals have a duty to ensure that patients are offered self-management at the beginning of their journey rather than at the end when often they are told “there is nothing more that we can do for you”. These last few months have enabled us to highlight more intensely the importance and value of self-management and the difference that this can make to a person’s life.
References
Eccleston, C. (2011). A normal psychology of pain. Pain Management, 1 399-403
Eccleston, C. (2016). Embodied: The Psychology of Physical Sensation, Oxford, UK: Oxford University Press
Nielsen, C.S. (2013), Chronic Pain is strongly associated with work disability. Scand Journal of Pain, 4, 180-1
Digital Behaviour change in pain management – International Pain summit – 18.06.20
Scottish Government – Covid-19 update