Patient Safety Spotlight Interview with Rachel Power, Chief Executive of the Patients Association

Summary

This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Rachel speaks to us about how patient partnership is key to tackling major issues facing the healthcare system and describes the central role of communication in improving patient safety.

About the Author

Rachel became Chief Executive of the Patients Association in 2017, bringing with her over 20 years’ experience of health and social care in the not-for-profit sector. She has overseen a significant period of change at the Association. Rachel is a member of the NHS Assembly and also a member of several national health bodies. 

Questions & Answers

Hi Rachel! Please can you tell us who you are and what you do?

I’m Rachel Power, Chief Executive of the Patients Association, a non disease-, non condition-specific charity. We are unique in the way we work directly with patients—our members are patients and they attend our focus groups, take part in our surveys and access our advice and information services.

How did you first become interested in patient safety?

Before I joined the Patients Association six years ago, I worked in hospice care and my passion has always been around partnership and working with people to understand what really matters to them. 

Patient safety is very much in the DNA of the Patients Association—when the organisation was formed more than 60 years ago, it was in direct response to the thalidomide scandal. We were set up by a part-time teacher who felt that parents weren’t getting the right information. Throughout our history we’ve been involved in getting the patient voice into lots of different areas, including being involved in the of the Mid Staffs inquiry led by Sir Robert Francis.

We believe that patient partnership—both in the design and delivery of services and in individual conversations—will result in better outcomes for patients. It makes services safer and is more motivational for staff. It’s also more cost effective because we’re designing services that patients want and need.

How does the Patients Association contribute to making healthcare safer for patients?

The key way that we contribute to patient safety is by advocating for improved communication. Time and time again, we have conducted surveys with our members and issued reports that emphasise the importance of genuine two-way communication between patients and healthcare professionals. It’s one of the ways of addressing the safety issues within the system.

Our helpline, which received more than 3,000 calls last year, helps patients advocate for their own care. People call us because they need help raising concerns, making complaints, finding the next steps or finding out who else they can go to for support, and helping people advocate for themselves undoubtedly improves their safety.

Working directly with the NHS and Department for Health & Social Care (DHSC) is another way we are helping make healthcare safer. We take the things we are hearing from patients, make recommendations and try to work with both organisations to bring these recommendations into play. For example, last year our report Time to Choose looked at patients being given the right information about choice so that they can access services more quickly. That was taken on board by DHSC and it set up a taskforce looking at patient choice.

Which part of your role do you find the most fulfilling?

It’s so fulfilling to hear the stories and feedback coming from the helpline about how patients have felt empowered by being given the next steps in their journey. At the point people ring us, they are often so unsure about what they can do next. It’s great when we can give them the information they need to make an action plan to get the service and the treatment they need.

When we do our surveys, a lot of what we hear from patients is quite harrowing, but we’re hearing their voices—it’s really fulfilling to take what they have to say into all my interactions with the NHS and DHSC. One of the things that we brought up recently was about patient access to GP appointments, right down to the basics of ensuring practices have digital telephony so that patients can get through. When we saw that the issue featured in the primary care transformation plan, we were pleased that NHS England had listened.

How do you include a wide range of patients from different backgrounds in your work?

We use lots of different ways to get patients to engage with us and although we are a membership organisation, nothing is limited to just our members. We often work with smaller patient groups and local PPGs and we recently did a piece of work with the British Red Cross trying to understand what patients were experiencing in ‘left behind neighbourhoods’. 

We’ve done some work in partnership with the Royal College of Physicians (RCP) and NHS England to develop an outpatients strategy and we really tried to work with patients who don’t usually have a voice. The patients we involved in this work came from really diverse backgrounds and some were at risk of health inequalities, so to see them at the top table talking about how outpatients should work for them was really rewarding.

We’re not perfect by any means and still have a lot to do—the minute we think we’re engaging with patients from diverse backgrounds well enough, we’ve got a problem. We’ve just started a piece of work on social determinants of health and it’s going to be a challenge getting to the right voices, but I think it is about continually looking out the window and thinking about who we’re missing.

What are the biggest patient safety challenges you see at the moment?

Last year the Care Quality Commission's (CQC’s) State of Care report described the UK health and social care system as being in decline, with the most vulnerable among us at the greatest risk of poor outcomes. That’s pretty scary language. 

This is a patient safety issue, but it’s much wider than that. You may have seen recent reports about the number of people in the UK who are not working at the moment because of illness or disability. Alongside this, we have nearly eight million people on our waiting lists. In our surveys, patients are reporting the impact that waiting for care has on their mental health, their ability to live their lives and their interactions with their family and friends. It’s a challenge to the whole of society. We did have a commitment from the Prime Minister at the beginning of 2023 to cut the elective waiting list, but towards the end of last year it appeared to be dropped. We wrote to the Prime Minister and implored him to honour that promise. 

Another challenge is the exhausted workforce. We have inadequate staffing levels and hear many issues reported through the NHS staff survey. I strongly believe that organisations need to have a philosophy of care for staff so that staff can provide high quality care to patients. Although NHS England has published its long term workforce plan, like so many other things, it’s just a plan at the moment and we need to see the action coming out of that. We also don’t have any social care plan or strategy, which is a major issue. On top of all of this, we have ongoing strikes within the system. The Patients Association has called on both sides to get to the table and stay there until they find a solution.

What do you think the next few years hold for patient safety?

There is a solution to all of these issues and that’s partnership. The Patients Association continues to focus on ways to increase partnership in the health and care system—in early 2022 we developed our six principles of patient partnership which promote treating patients as equals and seeking their input. We’ve also just launched our general election manifesto which is about putting health at the heart of government. As part of this, we call for reports to parliament on workforce numbers every two years so that politicians can see where the gaps are much earlier. 

Although the picture of healthcare can seem bleak, there has been ongoing work to improve patient safety that we need to recognise. For example, the Pharmacy First service is a great opportunity to enhance the valuable contribution of pharmacy and improve access for patients to care.

The expanding team within primary care, with roles such as care navigators and social prescribers, will also allow for better access for patients and look more at what really matters for each patient. What we need now is really good communication about these new roles so patients and staff understand them, and we’ve been running some webinars to help patients understand changes happening in primary care in England.

Over the next few years, I’d like to see a bigger emphasis on how shared decision making and patient partnership can together be the framework for patient safety outcomes. Again, I’m going to say that we just need to listen to patients! Healthcare professionals need the confidence to have conversations that allow them to really understand the patient’s perspective. 

I think the workforce plan will help us start to address cultural issues such as barriers that prevent healthcare staff and patients from speaking up. Martha’s Rule being put in place is really good news and it shows the power of Martha’s fabulous parents in getting it implemented. Although Martha’s Rule is very specific in what it's asking for, I believe it will influence the wider culture of whole trusts.

If you could change just one thing in the healthcare system right now to improve patient safety, what would it be?

I would make patient partnership and shared decision making a day-to-day practice in all areas of healthcare. We need to understand that without genuine patient engagement, we’re going to regularly see communication breakdowns that will result in misunderstandings and lack of awareness among patients about how to manage their own conditions. With a society that’s getting older, we need to equip patients with the right information to do this well.

Are there things that you do outside of your role which make you think differently about patient safety?

I quite often see the same issues play out in wider society. We don’t work in partnership together, and if we did we would manage to do things so much better. 

Tell us something about yourself that might surprise us!

I have to admit to being a big Dolly Parton fan!