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Help shape our new programme of work
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Later this year we will be commencing a programme of work on patient experience, and we need your views to help us define the topics we will cover. We want to know about your experience of being a patient – this includes your thoughts on the care that you, or someone close to you, has recently experienced, and anything else that has mattered to you while you (or they) have needed care.
As this is a preliminary survey to help us define the scope of the work, we are not looking for as big a sample as normal. So if you’d like to contribute, be sure to respond quickly – once we have 100 responses, the survey will close! If you miss out, don’t worry – there will be a longer, in-depth survey later this summer, which we will develop using these initial answers.
By completing the survey, you’ll inform our future campaigning work and play a role in our work to improve things for patients. The survey asks you to think about a period when you needed health or social care, either currently or in the past, so please only begin the questionnaire if you are happy to think about those experiences.
If you have any questions about this piece of work or would like more information, email policy@patients-association.com
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Last chance to join our workshop in Leeds next Friday
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Have you been switched from a ‘biological’ medication to a new ‘biosimilar’ drug? The Patients Association is hosting a workshop in Leeds next Friday 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, influence and co-produce guidance directly with clinicians which will help different types of 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 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 next Friday, 19 July. 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 for more information and to reserve your place. Lunch and light refreshments will be provided, and we are also offering a high street voucher to participants for giving their time.
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Patients who have received private care: attend our focus group in London on 29 July
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Have you opted for private treatment over NHS care in the past? Has your treatment been funded by an employer through medical insurance as part of a benefits package? Attend our focus group with the Independent Healthcare Providers Network (IHPN) in London on 29 July and help us develop a new resource for patients receiving private treatment.
IHPN is the representative body for private sector healthcare providers and they are working with us to provide relevant and appropriate information for patients receiving private treatment. The new resource will be designed to give patients the information they need to make informed decisions about their treatment – from the decision to proceed with receiving private care through to the end of the patient journey when treatment is no longer required.
We’ll be hosting a focus group in central London on Monday 29 July with patients who have undergone private treatment and would like to invite you to join us. If you have recently had care privately or know someone who has, please get in touch by emailing Abdullah Mahmood at abdullah.mahmood @patients-association.com. Whether your experience was very good or one that could have been improved, we would like to hear from you. Refreshments will be available on the day and reasonable travel expenses will be reimbursed. We are also offering a high street voucher to participants for giving their time.
For more information, email Shivani.Shah@patients-association.com or call 020 8423 9111.
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Knee problems? Join us to create new guidance to inform and empower patients
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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.
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From the helpline: issues with GP practice
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This week we heard from Martha*, who got in touch following a recent conversation with her GP. Martha had recently seen her doctor about a suspected cancer. Without conducting any further examination, the GP diagnosed Martha with an advanced stage of cancer and referred her to specialists at hospital. Martha was understandably upset and distressed after hearing the news, but after extensive tests at hospital, she was told that her cancer wasn’t at an advanced stage after all.
Martha was unhappy with the way her GP communicated the information about the diagnosis and wanted to raise her concerns to ensure other patients did not go through the same experience. Notwithstanding this incident, Martha enjoys a positive relationship with her GP and did not want to make a formal complaint.
Our helpline adviser suggested that Martha should have an informal conversation with the Practice Manager regarding her concerns. Martha asked if an advocate could be present for this conversation, so we provided contact information for her local advocacy service. We also shared general information about getting a second opinion on clinical matters. Although doctors are not legally obliged to offer patients a second opinion, it is considered to be good practice to do so. Our advice to people is to politely request a second opinion on the basis that they want to be assured that they are receiving the best treatment for their condition.
We asked Martha to contact us if we could provide any additional information. If you need advice about any aspect of health and social care, you can contact our helpline on 020 8423 8999, or email helpline@patients-association.com. You can find out more about our helpline and advice service here.
*Name changed
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What our team is reading this week
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