PAIN PATIENT PARTICIPANT INFORMATION SHEET

Social Prescribing for Chronic Pain in Moray

Organisers: Dr Joseph Parsons of Affa Sair (third sector chronic pain group) and NHS Grampian Quality, Improvement and Assurance Team

The Maryhill Practice are inviting you to take part in a service evaluation of social prescribing for people with chronic pain. This means you will be able to access free social activities such as gardening, guided exercise, guided meditations, hydrotherapy and more to help support you in the management of your persistent pain.

Persistent pain is a biopsychosocial condition which means that it needs a combined approach to manage it well. This includes biological approaches, such as physiotherapy or medication, psychological approaches, such as relaxation and cognitive behavioural therapy, and social approaches. Socialising is often challenging with chronic pain as social activities are not accessible nor affordable. This scheme aims to remove the financial barrier by providing free, accessible social activities for people living with pain in Moray.

Before you decide if you want to please read the following information and discuss it with others if you wish.  Please contact myself, Dr Robert Lockhart, at Maryhill e-mail gram.maryhillhcelgin@nhs.scot, or Affa Sair representative Dr Joseph Parsons, at joe@affasair.org, if you have any questions.

 

What is the purpose of the study?

Socialising is often one of the first things to disappear in the life of people with persistent pain. Managing the pain, travelling to events and affording them on tight budgets are just some of the many barriers to socialising for people with persistent pain. However, it is widely recognised that a healthy and fulfilling social life is a key part of long-term self-management of persistent pain.

This scheme, funded by Section 10 funding and the Self-Management Fund from the Scottish government, has been developed by chronic pain charity Affa Sair in order to remove financial and accessibility barriers to social activities for people living with persistent pain.

Despite the widespread belief that social prescribing can support people to manage their pain, no official study has yet confirmed this in the UK. Therefore, this evaluation aims to assess whether social prescribing can improve patient-reported outcomes like quality of life and pain interference, whilst also reducing the need for those patients to use healthcare services, possibly reducing NHS costs.

 

Why am I being invited to take part?

Patients with chronic pain are invited to take part in the project, there will be approximately 50 places.

To be able to take part though you must be:

•       over 18 years of age
•       able to speak and read English and communicate effectively in English
•       able to provide informed consent

 

      You are unable to take part if you:

•    Have a current cancer diagnosis
•    Have a severe mental illness – Specifically if you have been sectioned under the Mental Health Act 1983; or if you have been diagnosed with psychosis or schizophrenia; or if you currently have thoughts of suicide or self-harm and have plans to carry it out.
•    Have a terminal illness
•    Are pregnant
•    Have severe cognitive impairments limiting participation and informed consent

 

Do I have to take part?

No, it’s up to you if you want to, or not.                                

                                                                       

What would I be asked to do if I chose to take part?

You would be asked to attend any of the social prescribing events on offer of your choosing. You would be asked to fill in a 1-minute questionnaire of the activities that you took part in in the previous week.

Every month you would be sent a questionnaire online to measure your health-related quality of life, pain interference and pain intensity which helps us to see whether your condition and wellbeing are improving over time.

Surveys would be sent to you each month by Dr Joseph Parsons from Affa Sair who is not an NHS staff member and so you would need to explicitly consent to him having your email and sending you weekly emails regarding the social prescribing calendar and monthly emails containing your surveys to track your progress.

You would also be asked to consent to providing access your primary care record in order to calculate how much your NHS healthcare costs were in the 6 months prior to joining the evaluation and during the 6 months of the evaluation itself.

 

What are the possible disadvantages, or risks, of taking part?

The possible disadvantages or risks of taking part are minimal. Some of the activities provided in the scheme involve physical activity such as hydrotherapy, gardening and guided exercises classes and therefore there is a risk of over-exertion or a fall with these activities. However, clear recommendations of who the activity may or may not be appropriate for will be made in advance and health and safety trained individuals will be available at all sites in case of accident.

 

What are the possible benefits to taking part?

Taking part in this study may help you to re-engage or increase your engagement socially. Many people find that this improves their quality of life and reduces the impact that persistent pain has on their lives. Additionally, meeting other people who have a deep understanding of persistent pain like yours may help you to create important support networks.

Also, you would be helping to provide evidence to assess the effectiveness of social prescribing for chronic pain. If social prescribing proves to be effective in improving quality of life, reducing pain interference and reducing NHS costs then this may encourage further adoption of similar schemes across larger geographical areas.

 

What would happen to the information collected about me?

The information that you fill in as part of your monthly questionnaire will not include your name. When you are enrolled in the study Dr Robert Lockhart will allocate you a unique participant number. This number will only be used by Doctor Robert Lockhart to identify you within NHS computer systems. This is to ensure that there is very minimal risk of any data leaks from this scheme. The data generated from these surveys will be sent to Dr Joseph Parsons and Ms Rebecca Hunter (a pain specialist physiotherapist) for analysis but he will not be informed as to the identity of the individuals represented by each patient number.

This data will be analysed to see if patients who engaged more in social prescribing had better outcomes than those who engaged less. Healthcare utilisation data would be simplified to list appointment type and prescription dose by practice staff here at Maryhill and would be sent in anonymised format to Dr Joseph Parsons for analysis. This analysis will assess whether social prescribing helped to reduce the amount of NHS services that patients had to use compared to the 6 months prior to the evaluation.

All data will be stored in anonymised format in password-protected files or in password-protected files on NHS encrypted servers indefinitely. This means that if the data are published as an academic publication, other researchers can request the anonymised data for peer review.

Personal data including special category data obtained for the purposes of this evaluation project is processed lawfully in the necessary performance of scientific and clinical evaluation or for statistical purposes carried out in the public interest. Processing of personal data including special category data is proportionate to the aims pursued, respects the essence of data protection and provides suitable and specific measures to safeguard the rights and interests of the data subject in full compliance with the General Data Protection Regulation and the Data Protection Act 2018.

We will write our reports in a way that no-one can work out that you took part in the study.

 

What would happen if I started, but, changed my mind?

If you decide to take part, you can withdraw at any point during the 12 months. However, any questionnaires that you have already submitted will be used in the analysis of the data.

You can withdraw by contacting myself, or the Maryhill Practice on gram.maryhillhcelgin@nhs.scot.

 

What happens if there are any problems?

If you wish to discuss the study with someone other than myself, Maryhill Practice staff or Dr Joseph Parsons, you can contact the NHS Grampian Quality Improvement and Assurance team on gram.qiat@nhs.scot  

 

Who has approved this study?

This study has been approved by the Quality Improvement and Assurance Team at NHS Grampian.

This study is being funded by grants awarded to Affa Sair by the Scottish Government (Section 10 funding and Self-Management Fund).

Thank you for reading this information sheet and considering whether or not to take part in this study. If you would like to take part then please contact us at gram.maryhillhcelgin@nhs.scot

 

 If you woud like to take part, please complete the following Form and email it to gram.maryhillhcelgin@nhs.scot, or hand it into Maryhill Practice (please include your email on this).