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Patients Association - 'Listening to patients, speaking up for change'

As an independent organisation that seeks to represent and speak up for patients, we pride ourselves on hearing what you have to say. While the summer is a quieter time for most organisations, we’re enjoying one of our busiest periods at the Patients Association, with preparation well underway for several events and focus groups in September, and an initial analysis due to begin from the results of our membership survey.

The survey is open until the end of August and we’ve had a fantastic response so far – take part and share your views if you’ve not already done so here.

None of this work is possible without you, our members and supporters, so please do consider joining us at one of the events outlined below. All of them are free to attend and we’re offering to pay travel expenses for those in attendance. For the events where we’re working in collaboration with partners and other organisations, we’re also offering free high street vouchers for attendees, so do check your diaries and sign up to join us if you can.

If you’re not able to join us but think you know someone who would be interested, let them know, or email membership@patients-association.com so we can follow up.

Your insight, experiences and views on the health and care system strengthen our work to improve patient care, so we hope to see you at one of the events below. All our latest events and focus groups can be found on here.

Leeds, 6 September: being switched to new medicines

Have you been switched from a ‘biological’ medication to a new ‘biosimilar’ drug? The Patients Association is hosting a workshop in Leeds on Friday 6 September to learn more about how people who are taking these new medicines can be better supported and to understand how their experiences could be improved. This is an exciting and unique opportunity to shape and co-produce new guidance directly with healthcare professionals, and this work will help patients to be better equipped to make decisions and will allow them greater control over their own health and wellbeing.

Biologic medications are usually liquids given via a drip or injection pen. They are often used to treat long-term conditions including Crohn’s disease, ulcerative colitis, psoriasis and rheumatoid arthritis, but patients with diabetes and people with some forms of cancer may also be taking biologics. Biosimilar drugs work in the same way and are newer versions of the original biological medications. If you’ve recently been switched onto a new biosimilar medicine and live in or near Leeds, we’d love for you to join our workshop on 6 September. The session will run from 10am to 2pm, and your feedback will help to shape our work. Places are limited so please contact anna.shears@patients-association.com to reserve your place. Lunch and light refreshments will be provided, and we’re also offering high street vouchers to participants for giving their time.

London, Thursday 5 September: private healthcare patients

Have you opted for private treatment over NHS care in the past?  Has your treatment been as an inpatient in a private hospital - funded by yourself, medical insurance, or an employment benefits package? We’re looking for people to join a focus group with in London on Thursday 5 September from 5.30 to 8.30pm to help develop a new resource for patients receiving private treatment.

If you have recently had private inpatient care or know someone who has, please get in touch by emailing Celia Turnbull at celia.turnbull@patients-association.com. Whether your experience was very good or one that could have been improved, we would like to hear from you. Light refreshments will be available on the day and reasonable travel expenses will be reimbursed. We’re also offering a high street voucher to participants for giving their time. For more information, email Celia or call 020 8423 9111.

Oxford, Friday 6 September: patients with knee problems sought to help create new guidance

We’ve partnered with Oxford University to produce new patient information about the recommended treatment options for meniscal problems of the knee, and we’d like to hear from you if you currently have knee problems and are considering surgery, are waiting for a procedure or have recently had an operation. We want to recruit a diverse group of patients to pilot a new approach to creating guidance that will inform and empower patients. Structured clinical guidance is central to the delivery of care in the NHS, and it is crucial that this guidance is developed with meaningful involvement from patients and the latest, best quality evidence.

As well as working with Oxford University, the project is also supported by the NHS Getting It Right First Time programme and the British Association for Surgery of the Knee. Participants will need to be able to attend a meeting in Oxford on Friday 6 September from 10.30am to 3pm. Travel expenses will be reimbursed. If you are interested in taking part please contact Heather Eardley on heather.eardley@patients-association.com.

Manchester, 3 or 6 September: patient experience and our future policy work

If you recently completed our survey about your (or someone close to you) experience in hospital as a patient, many thanks. We’ll soon be opening a more in-depth survey which will go into more detail, but we’d also like to hear from people in person and would like to invite you to attend one of our focus groups in Manchester next month. This event will also help us define the scope of our future policy work, so it’s a great opportunity to shape what we’ll be working on in future.

If you’re free on either Tuesday 3 September or Friday 6 September, join us to play a part in shaping our future campaigning work, and to help us improve things for patients. We’ll pay reasonable travel expenses and send more details about the focus groups closer to the time. Complete the survey here to register your interest. If you have any questions about this piece of work or would like more information, email policy@patients-association.com.

Original article link: https://www.patients-association.org.uk/news/listening-to-patients-speaking-up-for-change

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