1. Patient Involvement in Pain Guidelines Judy Birch Pain Alliance Europe NHS Evidence Accreditation Advisory Committee

2. Disclosure Statement of Financial Interest I, Judy Birch, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.

3. Background to patient involvement in policy Active Citizenship Network (ACN): “Charter of Patients Rights”: Right to participate in policy-making in the area of health International Alliance of Patients Organizations (IAPO) policy statement and guidelines on patient involvement Health and Social Care Act 2008, 2012

4. IAPO Policy statement: Patient involvement should occur whenever decisions are being discussed which will affect patients’ healthcare or lives including, but not restricted to, the following areas: Education and training programmes design ( for health professionals ) Research priorities and development Care and treatment guidelines

5. Guideline case study Guidelines case study: PPSN/WFIP Guideline development bodies Referred to the AGREE Instrument and IAPO policy statement and guidelines on patient involvement ( add link/wording) Ongoing involvement, patients are EQUAL participants,record results and act upon them to implement changes.

6. Pain Policy Paul Burstow MP, Minister of State for Care Services announced the following statement: “ The Department recognizes chronic pain as a long term condition, either in its own right or as a component of other long-term conditions. Everyone who suffers persistent pain should have a timely assessment in order to determine the cause of pain- if a cause can be determined- and to advise on options for treatment, including self-help. Patients with refractory chronic pain will benefit from the care-planning approach, but decisions should be taken on an individual basis depending on the severity of symptoms and any co-morbidities”

7. NICE, Patient Involvement and Pain NICE Quality Standard ( a number of statements about the care a patient can expect ) and a guideline for pain management Patients and patient organization representatives are invited to participate at the outset and throughout the guideline development process. ( Scoping, development, consultation, publication and implementation ) Comment on draft guidance by registered stakeholders ( eg patient experience guidance: pain ) All comments are responded to in writing Application process for patient/lay membership of the Guidance Development Group (GDG)

8. Patient/carer/public concerns with NICE’s processes: Lack of research evidence on patient/carer views, experiences and preferences Quality of life measures often determined by professionals and don’t reflect issues of most importance to patients Process doesn’t take account of wider societal costs

9. NHS Evidence Accreditation AGREE Domain 2: Stakeholder involvement: 2.1 Individuals from all relevant stakeholder groups including patients groups in developing guidance 2.2 Patient and service user representatives and seeks patients views and preferences in developing guidance

11. NHS Evidence Accreditation Who ? patient representative/patient/carer ( application process, attendance fee/honorarium ) What ? what are you asking to be done, what support When ? from the outset How ? focus groups, surveys, personal experience, on guideline group ( attendance fee/honorarium ) Monitor Why ? is it to tick a box ??

12. The European context Inclusive : Countries, age, gender, disease area/all aspects of pain/parts of the body should be taken into account. We hope that this work will lead to pain being covered more thoroughly in better quality guidelines for specific conditions where pain is a symptom of a condition and also to guidelines for chronic pain in its own right. Similarly, patient input into health professional education, curriculum, continuing medical education on chronic pain Patient input into research and research priorities on chronic pain