Who are the Patients Association?

The Patients Association is one of the oldest and most distinctive health and care charities in the UK – 55 years since their creation they remain the only national campaigning charity that covers all of health and social care. Unlike many other charities, the Patients Association does not focus its activities on one specific illness or condition, meaning they work with and empower all patients across health and social care.

The Patients Association’s vision is that health and social care will be delivered in a way that meets every person’s health and social care needs.

The charity has a long history of investigating health and care concerns raised by patients. This includes monitoring trends in patient satisfaction and promoting good practice amongst healthcare professionals, working towards a mission of giving effect to the patient voice, and campaigning to improve patient experience.

A national independent charity, the Association speak to government, NHS arms-length bodies and national media about patients’ priorities and concerns, to ensure the patient voice is heard and acted upon. In order to succeed they consult and give feedback to government, the NHS and the national media about patients’ priorities and concerns, to make sure the voice of the patients is heard, and importantly acted upon, to work towards making sure everyone receives the very best care when they need it most.

More information about the work of the Patients Association can be found here.

What does the Patients Association have to do with EPIC?

“I’ve been really impressed by the way the EPIC team are genuinely committed to listening to patients throughout the project. All the technology innovations are based on ideas from patients and are being tested out with patients to make sure they work and are useful – this means it’s really worth getting involved “ – Heather Eardley, Head of Projects and Partnerships, Patients Association

Like EPIC, the Patients Association passionately believe that joining forces with others is often the best way to get great results!

The Association already work with a number of organisations including NHS trusts, universities, colleges and care homes to deliver projects to improve services by involving patients. Last year the Association supported six trusts to improve their complaints handling, helping them better understand how they interact with their service users as well as how to improve relations.

We believe that creating partnerships helps us to appreciate wider insights and enables us to keep the bigger picture in mind, which to us is improving health and wellbeing for all. We benefit from the experience, knowledge and commitment of both teams to help us achieve change.

As the EPIC programme was exploring similar health and wellbeing themes, it was recognised that the Patients Association could carry out engagement activity that would add insight to both programmes. Public Health Cornwall was keen to hear from people who might not normally take part in consultation and engagement opportunities, sometimes known as ‘seldom-heard’ groups. Based on previous experience it was important to go to people rather than inviting people to specific focus group meetings, and this is reflected in the chosen methodology.

At EPIC events we include members of the Patients Association to discuss a wide range of issues from social isolation, mental health issues or even the potential impact of robotics on level and quality of care.

The Patients Association Head of Projects and Partnerships is linked to the EPIC project team and attends every EPIC team meeting to make sure we are always listening to the voice of patients, and considering this in even the finest details of the project, from planning events to how best to proceed with a stakeholder idea. This ensures consultation with a wide range of people who use health and care services so that their views can influence the innovative developments.

The partnership between the Patients Association and EPIC perfectly complements the blend of partnerships that EPIC maintains – academics, business advisers, funders, GP practices and care homes.

Where can I find out more about the work that the Patients Association have been doing with EPIC?

Some of the work we have been doing together was a consultation exercise to engage with people as equal partners to seek their views in order to ensure that a wide range of public views are heard, including people who are not often heard from. We felt that it was important to reach out and go to people rather than inviting people to specific meetings. We recognised that many people choose not to attend public consultation meetings, focus groups or complete surveys but are more than happy to talk informally, one-to-one or on a group basis in familiar settings to themselves.

From this work we identified some common themes, and some ideas to focus on which will make sure we carry on listening to the collective voices of patients within Cornwall. To read the full report visit [Link to outreach report]

Can I get involved?

The Patients Association exists to represent and empower patients.   The Association welcomes your comments and feedback, and wants to hear from more patients to strengthen the work they do.

Some of the ways you can get involved include:

Calling for a chat on their free and confidential helpline

We know that sometimes it helps just to chat things through with someone.

The Association’s specialist helpline advisers are here to listen to your queries and are always at the other end of the phone. Call the helpline on weekdays between 9.30am and 5pm, or email helpline@patients-association.com.

Take part

Why not have your say? The Patients Association encourage members and supporters to get involved with questionnaires and feedback requests run by government, the NHS, NICE and many others. Why not join them by sharing your opinion? You can take part here.

You can join the Association as a member for free. New members receive:

  • Quarterly members’ newsletter (digitally or by post)
  • A say in our future: attend our AGM
  • Access to our helpline
  • Talks, events and opportunities to get involved
  • A series of events throughout the year and notifications of opportunities to join patient groups, surveys and projects
  • Your voice, added to that of our other members, becomes a strong collective voice for all patients in the UK.

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