Long term pain management: people's experiences in Suffolk

Healthwatch Suffolk, which is run by Knowing Works CIC, was commissioned by the local ICB to assist them in their review of current long term pain management services.  This report is based on feedback to Healthwatch, plus results of previous surveys.  In total it represents the views of 1,338 people.

Pain can affect all aspects of people’s lives 

People in pain need holistic treatment that can support them in all aspects of their lives. Systems and services need to recognise that pain is not something that exists on the peripheral of people’s lives – instead, it can be a constant depriver of factors that enrich lives and contribute to positive wellbeing. This includes that it isolates people from friends, family and vital community support, reduces mobility and therefore access to green spaces and exercise, and can force people into financial uncertainty. 

It can deprive people of sleep, influence eating habits, and have severe consequences for people’s mental health (generating anxiety and, in some cases, suicidal ideation where pain may be particularly extreme and relentless). 

Addressing the impacts of long-term pain requires systems to consider holistic approaches that support people in their lives. Those in pain need to be guided to support for all aspects of their lives that may be deeply impacted by their wait for treatment or longterm pain.

Pain can make caring for others unbearably difficult 

Family carers are a population group that show vulnerability to the impacts of pain on all aspects of their lives. Healthwatch elective care research has shown that elective care backlogs are both creating new family carers supporting those living in daily pain, and simultaneously disabling those who already have caring responsibilities at home.

Pain affects everyone differently and requires personalised support using a variety of different approaches 

People need access to a range of different solutions to manage pain. A recurring theme in Healthwatch back, neck, and spinal care research was that people were moved through a standard pathway without feeling that their individual pain experience was fully explored. While many people did improve with physiotherapy, a few felt the exercises were generic, repetitive or ineffective, especially for severe or complex pain. 

Some people reported that exercises worsened their symptoms or did not address the underlying problem. A few felt they needed to access private treatment for more ‘hands on’ therapies. In our research about elective care backlogs, people wanted improved access to pain management support. This was particularly important for those who had experienced multiple cancellations or prolonged delays during their wait. 

Findings highlighted that people wanted access to alternative pain management techniques alongside traditional medication. Many respondents were concerned about the long-term health implications of pro-longed reliance on pain medication, while others reported experiencing side effects that limited its effectiveness or suitability.

Pain should be acknowledged and taken seriously 

Pain can be a leading cause of disability, but the invisibility of pain may also lead professionals in services to doubt people’s concerns. People want to feel that their long-term pain has been acknowledged and should expect to receive compassionate advice and guidance instead of dismissal. 

There is evidence that people feel their pain is sometimes dismissed by professionals working in services. In several cases, people had needed to actively pursue action by services to open pathways to further treatment, or they experienced variation in the responsiveness of clinicians. In our research exploring the experiences of people who had used back, neck, or spinal services, several respondents felt the root cause of their pain had not been properly investigated, especially where access to MRI scans had been delayed. In some cases, patients believed earlier imaging or specialist input might have prevented deterioration if their concerns had been acknowledged or acted on.

A number of comments related to maternity and gynaecological services, reflecting informal feedback from our staff in communities that women can often feel dismissed about symptoms, such as pain, in primary care and other services.