Persistent pain - how to engage with service users: Qualitative research
Summary of findings
- Respondents felt that their GP’s were willing to prescribe pain relief, but that there needed to be a broader understanding of referral services for pain management.
Pain Service provision
- Participants were generally positive about the services they had accessed. It was agreed that the definition of pain needs to be improved.
- Provision of services appears different at Hudderfield and Dewsbury.
- Generally, referral times for accessing pain clinics were seen as too lengthy.
- Service users said they would benefit from more patient information about other services available.
- A number said that when programmes end they would prefer to have some follow-up provision offered.
- Very levels of discrimination in relation to pain had been experienced. They felt staff and members of the public made assumptions based on the fact that their pain was not ‘visible.’
- Many found the bureaucracy surrounding benefits and support services overwhelming.
- A number of suggestions were made for improving services, such as:
- Immediate access to treatment services for acute pain,
- Multi-disciplinary assessment with a requirement to treat the person as a whole with a full assessment.
- In terms of information about pain services, an A to Z directory was suggested, and more thorough information to help people with general living, activity and sleep problems.
- In relation to Carers, more help and time out was needed, and a reduction in bureaucracy for accessing benefits / care services.
- A reduction or exemption for prescription charges for people with Long Term Conditions was requested.
Self management of pain
- Service users viewed self care as an integral part of managing their pain condition. Key techniques included:
- Mind over matter / positive thinking
- Complementary therapy
- Relaxation therapy and music
- Participants valued the opportunity to be involved in these consultation sessions.
- A chronic pain reference group was suggested as a way of keeping participants involved, and many were keen on this.
Contact support organisations
- Details of a range of support organisations were included in the report, included those shared by participants.
From the Aims stated in the report the research objectives appear to have been:
- To provide an improved understanding of service users’ experiences of persistent pain conditions (i.e. lasting longer than 3-6 months and not responding to standard treatment).
- To provide service users with an opportunity to share their experiences of their pain condition, the quality of information they have received and the type of services they have accessed.
The results were to inform the Persistent Pain Programme plans that were underway to review and re-design pain services in the Kirklees area.
The findings would also provide the PCT with an indication as to whether a wider social marketing approach is needed to better understand the health needs of people experiencing persistent pain.
Persistent pain has a severe impact on many peoples’ lives - nearly 1 in 7 people experience chronic pain in the UK, with 20% of those having suffered for more than 20 years. In Kirklees, 1 in 3 people are affected by pain problems, including backache. As a result, NHS Kirklees working with key partner organisations, has made persistent pain a key health priority.
The aim of this process was to ensure patient/ service user engagement in reviewing and re-designing pain services across Kirklees and to establish a mechanism for continuous participation in the work.
Research to ensure the inclusion of service user engagement in reviewing and re-designing pain services across Kirklees and to establish a mechanism for continuous participation in the work.
- 2x discussion groups (one in South and one in North Kirklees)
Individuals were recruited to these groups from the PCT Patient & Public Involvement (PPI) database and via identified services (Better Health at Work, Health trainers, Expert Patient Programme support groups) that have contact with individuals suffering from persistent pain.
- The PPI team and Public Health also attended 2 EPP support group meetings in June to ask the same set of questions, as the majority of attendees experience persistent pain.
A set of questions were used to structure the discussion; in effect, a rudimentary discussion guide.
Data collection methodology
Other data collection methodology
The PCT Patient & Public Involvement (PPI) Team and the Health Improvement Practitioner (Public Health) appear to have organised and facilitated the research.
27x participants attended the 2 discussion groups (15x in Huddersfield, 12x in Batley)
43x individuals were consulted who attended 2 EPP support group meetings.
Huddersfield and Batley
Discussion groups were conducted on 3rd June 2009 in Huddersfield, and on 5th June 2009 in Batley.