Paediatric Pain Management Programme (PPMP)

Chronic pain (long-lasting pain that doesn’t go away) adversely impacts the lives of children, young people, and their families. The PPMP is a three-week programme based on the biopsychosocial model of pain. This means we look to address the mix of biological, psychological, and social factors that contribute to a person’s pain, aiming to help them: reduce the impact of pain; improve participation in valued daily activities; enhance emotional well-being; and decrease pain severity. The PPMP builds on pain treatments recommended in the GOSH Pain Clinic and is based on evidence from successful programmes at other centres.

The programme is group based, and each group consists of 4-8 young people aged 11-18, and their parent/carer. The daily timetable includes a mix of group, individual, and family sessions. Parents/carers are actively involved to learn more about pain management and to support lasting changes at home.

The programme is delivered by an interdisciplinary team, with Advanced Nurse Practitioners, Occupational Therapists, Physiotherapists, Psychologists, and Doctors all working together. The day is broken into different sessions that include the following:

• Discover: Learning about pain and helpful ways to manage it.
• Explore: Thinking about and practicing ways to manage pain including learning to recognise the way that the body feels while in pain and strategies for unwinding.
• Move: Gentle exercise-based activities to improve strength and co-ordination.
• Do: Practical sessions putting into action the new strategies that will be learnt.

Our approach is evidence-based, building on best practice, and is tailored to each participant's needs.

Young people with chronic pain may be referred to the GOSH Chronic Pain Clinic by their GP or local specialist. All referrals are triaged, and if our clinic is the right place for you, we will send an initial outpatient Pain Clinic appointment. You and your parent/carer will be asked to complete a number of questionnaires before the appointment to help with the assessment. In clinic, a multidisciplinary team will assess your pain, its impact, discuss an individualised pain management plan with you and your family, and start usual care.

If the team decide the program could be beneficial, they will discuss including the PPMP as part of your management plan. A Hummingbird PPMP information leaflet will also be provided.

If you and your parent/carer are unable to attend for 3 weeks, or you do not want to take part in the research study, it will not affect the ongoing care you receive from the pain clinic.

If you are interested in joining the PPMP, you'll be scheduled for an online video assessment with the Hummingbird team. This session introduces the programme, team members and gives you an opportunity to ask more questions. We will discuss your goals, review your medical history, and decide together with you if the PPMP is right for you and your family.

The Hummingbird Programme is delivered as part of a research study (called PIIPeR) which has been approved by an NHS Ethics Committee and the GOSH Research and Development Office. We will send you and your parent/carer research Information Sheets that explain the study in more detail. A member of the research team will also meet with you and answer any further questions. If you wish to join the research study, you and your family will be asked to sign consent forms.

We are conducting this research project to help us understand:

• How delivering our pain management care within an intensive program compares with our usual outpatient care.
• Who benefits most from PPMP. We will be asking you and your parent/carer to complete a range of questionnaires, and we will measure your walking speed and muscle strength. This will be done on the first and last day of PPMP, and regular follow-up points so we can check your progress.
• Whether it is better to join the PPMP soon after your initial pain clinic appointment or if it is better to have a longer period of usual outpatient care in pain clinic before joining the PPMP. To study this, you will be randomly allocated to one of 2 groups: early (PPMP within 1-3 months) or delayed (within 6-9 months).

Overall, the study aims to build evidence for integrated pain management, potentially improving future NHS services. If you don’t want to take part in the research, you will continue with your usual care.

Once booked, we'll send confirmation letters, accommodation details and advice like what to wear and bring. More details are included on the Hummingbird PPMP information leaflet. You can also contact the team by emailing hummingbird@gosh.nhs.uk

We will also arrange a session 1-2 weeks before the programme to help prepare you further. If needed, we'll liaise with your school about taking this time off and discuss travel options.

The three-week programme runs Monday-Friday, 9:30am-4pm, with an earlier finish on Fridays, and weekends free for returning home. Each day includes a mix of group and individual sessions. You'll work with the interdisciplinary team, including a keyworker for personalised support. Parents/carers attend fully, with dedicated sessions to build support strategies. You will have a manual that outlines each week of the programme and also contains homework for the evenings and weekends.

After the programme, you'll have a personalised plan for home depending on your individual needs. You will have follow-up appointments at 1, 3, 6, and 12 months- some of these will be virtual, others in-person. These continue to build on the content and monitor progress via questionnaires and assessments.

You'll remain under the PPMP team's care, with access via telephone or MyGOSH app. Our goal is successful pain management, leading to discharge from the service at 12 months, with ongoing research data collection at 2, 3 and 5 years helping us to evaluate long-term outcomes.

We want to make sure the PPMP is a safe and fun environment for all the young people, their parents/caregivers and staff. To help ensure this we have a few expectations:

• Active engagement from young people and parents/caregivers to facilitate a safe and respectful environment.
• We ask young people to accept others, participate fully, treat property carefully, and cause no harm to others.
• For parents/carers to encourage fairness, monitor punctuality and support independence for young people.
• Everyone to contribute positively, listen, and avoid disruption.
• The same parent/carer should attend throughout. Please discuss any potential changes in advance.
• Wear appropriate clothing for example stretchy clothes to allow movement. Please make sure your body is covered, and you don’t wear anything with inappropriate language/images.
• Please respect confidentiality- don’t share any images or other people’s details without their permission.
• Full attendance is mandatory, arriving 15 minutes early. Please notify us of any absences by 9am phoning us on 02078138265.
• Young people must not be left unattended. Please inform staff if parent/carer and/or young person is leaving the ward.
• Persistent issues may lead to discussion or discontinuation, per GOSH's Safe and Respectful Behaviour Policy.

Young people aged 11-18 with chronic pain, referred via the GOSH Pain Clinic, and willing to participate in the PIIPeR-f research study.

No. The programme is delivered as a research project. Therefore, you and your parent/carer need to read the information about the PIIPeR research study and agree to take part. If you are unable to attend a 3-week programme, or do not want to join the study, this will not affect your usual ongoing care at the chronic pain clinic.

You and your parent/carer will need to tell us that you understand the project and sign a consent form. You will also need to agree to be randomly allocated to one of 2 different time groups. The PPMP and the research team will explain this in more detail.

Before, during and after the programme we want to follow your progress by asking for feedback and getting you and your parent/carer to fill in questionnaires. We use the same questionnaires that you will have completed in Pain Clinic, plus some extras to help us understand which parts of the programme work the best for different young people. We will label your information with an anonymous Study Number rather than your name, and this will be stored in a secure GOSH research database. Apart from this, there is nothing extra you will need you to do in terms of the research project.

Yes. We will arrange accommodation for you in a hotel near GOSH. This can be for the week or include weekends as well if needed. We will discuss your accommodation needs in the assessment and prepare sessions.

We are able to provide breakfast (cereal and toast) on Hummingbird Ward but you will need to arrive early for this so we can have a prompt start at 9.30. We do not provide lunch or dinner but will give you suggestions of how to purchase meals both within the hospital and locally. We will also discuss if there are kitchen facilities available to use if you want to make your own food.

If that suits your individual circumstances it is feasible to stay at home and travel into the programme each day. Please discuss this with us at the initial assessment and prepare sessions. We do encourage the hotel stay, however, as a lot of travel on top of a busy day can be very tiring and it also promotes good bonding and supportive interactions with the other young people and their parent/carer.

The programme and accommodation are fully funded. Apart from needing to pay for food there are no extra costs.

If you are ill, you will need to tell us and we will discuss the impact of this for you. If you miss the first day, we might need to postpone your sessions. If you are persistently absent, we may not be able to let you continue the PPMP.

No, only the young person and one parent/carer can attend the programme. We do not have the facility for other childcare.

You're assigned to early (within one to three months) or delayed (after a six to nine months of usual care) entry via a fair, random process.

Timetables limit schoolwork, we can contact your school if needed to explain about the programme.