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Patient Leaders: What Are They and Why Are They So Vital?

We need a co-operative NHS, one in which patients and professionals can work together on an equal footing to improve our NHS and in which patients are valued for their expertise on the health service, being experts by experience. Patients’ power to change and improve services and to help solve problems needs to be harnessed, and their unique perspective to be integral to the commissioning, provision and delivery of services. Every department, board and service at every level of our NHS, including hospitals generally and the departments/specialist services within them, community services, Clinical Commissioning Groups and all committees, boards and groups right up to policy, strategic and stakeholder level should have patient leaders who can bring the patient voice and experience to every aspect of the inner workings of our NHS and its continual development and improvement. The patient voice is vital.

As a patient leader myself, I know the benefit of the patient perspective in all levels of our NHS and I get very positive feedback about my work from professionals at all levels, because professionals are now starting to realise the benefit of involving patient leaders in the NHS. As such, I cannot understand why it has taken so long for the knowledge and experiences of patients to be recognised for the powerful insight it provides to the NHS and how each strategy, decision and policy effects the experience of patients receiving care from NHS services, revealing its successes as well as the weaknesses and problems within it. Even more incomprehensible is why it’s taking even longer for the NHS to take advantage of the highly valuable information and insight provided by patient leaders and to make the inclusion of patient leaders a requirement in all services, departments, boards and committees, commissioning groups and in policy, strategy and decision-making processes. Patients’ powerful knowledge, insight and unique perspectives need to be harnessed and patient involvement implemented in the health service, from the frontline services right up to the highest levels of NHS management.

The involvement of patients in all levels of the NHS is mutually beneficial; its benefits to the NHS cannot be underestimated, but the benefits to the patients who become patient leaders is two-fold. Their input will result in improvement of the services and continual development of the NHS to become better, more modernised and able to meet the needs of our ever-changing and ever-expanding society, which will benefit them when they access such services. However there is another side to this: that is the empowerment a patient will feel from taking an active role in improving health services and the NHS as a whole. Empowerment is an extremely powerful thing. It will give the patients the feeling of being on an equal footing with health service professionals and stakeholders, as well as the knowledge that their voice is heard, they are valued in the health service, and that they can help in the improvement, planning and implementation of services. For some patient leaders, like myself, this gives their life a purpose and their struggles and suffering some meaning. Patient involvement also allows patients to use negative experiences in a positive way; rather than simply writing a complaint listing what went wrong, the patient leaders can actively help in finding solutions that would rectify what went wrong in their care and with other problems within the NHS and help with their planning and implementation. I think this would drastically improve patient satisfaction, to know that a bad experience can be turned into a positive, with tangible results. When you listen to patients who have lodged complaints, two common themes crop up:
  1. patients complain because they don’t want their negative experience or medical mishap to affect someone else, so they complain in the hope something will change and no one will experience what happened to them.
  2. there’s rarely feedback about how a person’s complaint has helped or lead to changes, nor patient involvement in solutions to problems, thus patients feel like their complaint won’t change anything as “nothing ever changes” – and even when something does change, they never hear about it – and as a result, patient satisfaction is poor.

Patients wanting bad experiences to bring about change is an invaluable tool that needs to be tapped into; how many of those people could become effective patient leaders? Sadly we’re missing out on their views and their opinion on how their bad experience could’ve been rectified, and how it can be prevented from happening again. With the latter, if they were part of developing the solution, I am certain their satisfaction would dramatically increase.
Involving patient leaders is an invaluable tool and should be integral to our NHS, now and as we move into the future.

Another benefit to having patient leaders is that they can bridge the gap between patients, the general public and NHS professionals, services and management. Patients and people on the whole tend feel much more comfortable giving feedback to or talking about issues with someone who understands their perspective on a personal level and who is on an equal footing to them. As such, patient leaders can be a valuable tool in obtaining patient opinion and patient concerns and compliments, as they aren’t facing what can be daunting prospect of sharing concerns and complaints with an NHS professional, instead they’re talking to a fellow patient, one who happens to work alongside the professionals within the NHS, but is still, crucially, a patient just like them. Patient leaders should also be utilised for their ability to more easily form patient networks and head up patient involvement projects and patient focus/steering groups, which should lead to more patient involvement. I myself am very well connected with other patients and do a lot of networking, making use of all the tools available to me: mostly social networks, forums and via my blog. I could name a number of people who would make brilliant patient leaders, and easily get the opinions and get qualitative information from a good sample of patients as part of my work. An example of the better response to patient leaders than to professionals is this:
The charity for whom I am a trustee organised our first patient information day last year. At the end of the event, our research nurse asked that attendees gave us feedback on the day in order that we can learn what was good and bad, if they found it beneficial, what they found most interesting or useful and if we were to do it again, what people would want included and so on. Sadly, very few people sent the research nurse any feedback, which was disappointing. Conversely, on my Facebook page that day I asked what people thought and whether it was a success and, though the information wasn’t qualitative and descriptive in the same structured way the feedback forms would’ve have been, I received a lot of feedback from patients who had attended. Hence why I think that patient leaders are the key to better patient and public involvement. Patient leaders are able to bridge the gap between patients, the public and NHS professionals, services and agencies, benefitting the NHS in many ways, and I think using experienced patient leaders to head up the implementation of patient and public involvement (PPI) projects and patient steering/focus groups will vastly improve the amount of patients willing to participate, take an active role and possibly go on to become patient leaders themselves.
There is another side to patient leaders that, as yet, I have not seen considered, one which might greatly help the acceptance and utilisation of patient leaders throughout the health service in the future. I believe that patient leaders should be involved with medical, nursing and midwifery schools, due to patient leaders’ intimate knowledge of the NHS and the delivery of care as we, the patients, experience it. Patient leaders could play a valuable role in the education of the healthcare professionals of the future. Patient leaders will able to show medical, nursing and midwifery students the impact of good and bad care, different ways of handling things such as giving news in a way that is more sympathetic and sensitive to patients’ needs and feelings, and how to deliver complex medical information in a way that is manageable and easy to understand. 
Involving patient leaders in medical education will also help to move towards an NHS in which patient involvement is normal, as the students will be used to working with patient leaders on an equal footing. It would prevent the separation between professionals and patients that is prevalent within the NHS, which can hamper the use of patient leaders, with doctors and nurses holding the authority rather than patients and professionals working hand in hand to improve our NHS. Having worked with patient leaders in their training, it should prevent this situation or attitude arising as the students will have been collaborating right through their medical education with patients, bridging the gap and meaning healthcare in the future will become a collaboration between healthcare professionals and patients. This will be achieved through the use of patient leaders as well as patient and public involvement on a bigger scale such as through steering or focus groups and even patient networks, and even lead to healthcare generally being collaborative, patients, doctors and nurses working together to get the patient well rather than it being purely down to the doctors and nurses; I consider my own medical care with many of my professionals as collaborative, we work together to improve things and I am an integral part of my care, decision-making and thus, the short- and long-term management of my conditions. 

At the NHS Takeover Day, December 2015, held at the Department of Health; an event I co-chaired.
Being a patient leader is a huge responsibility and is not always easy. To speak up in a room full of eminent professionals, officials, charity CEOs and top experts in their respective fields and be the patient voice, to put across our point of view, to demonstrate the impact of the decisions or points being made on patients, and to stand up (figuratively, in my case) and be a part of the discussion takes courage; so easy it would be to feel intimidated and lose your confidence in the presence of these highly-qualified individuals. You have to be polite and respectful, to acquaint yourself with the people you are working with, to be receptive to various different viewpoints and to debate points and ideas in a civilised manner, but also be assertive, be confident in your role and eloquently get your point across. As a patient leader you have to vocalise based on your own experiences but also represent the experiences of patients as a whole, or on behalf of subgroups of the population about whom the topic concerns or the decision will effect. You have to stay abreast of the discussion at all times, process facts, figures and information which can be very in-depth and even confusing at times, and you must do your research if you are to back-up your points with facts, as inaccurate evidence or figures never makes a good impression.  
So far, my work as a patient leader has been positively received and appreciated by the professionals I have worked with, and has been thoroughly enjoyable for me. Through my own experiences I know the power that patients possess and very much feel patient leaders are a key player in the future of our National Health Service, and it is imperative that patient leaders become an integral part of every team, service, board or agency within the NHS. However I’d like things to go one step further than that. I think the role of Patient Leader should be one that is respected and valued. It should be recognised as an occupation: the patient leader being a patient perspective and experience consultant, a patient advocate, a patient liaison officer and a director of patient involvement all rolled into one. That’s what I envision as the future of patient leaders, or different types of patient leaders that could develop. I see Patient Leader, along with my other charity work, as my job; I don’t get paid for it (much as I would love to) but it is my life’s work, it’s my purpose in life and I put my all into it. It gives me a positive focus and puts a positive spin on my struggles; I can now use my experiences, good and bad, constructively to benefit others and make a difference. I’m sure other patient leaders must feel the same.
In order for the successful involvement of patient leaders, and the success of patient and public involvement schemes, steering and focus groups, the venues, meetings and materials must be inclusive for all. Access and communication needs must be provided for, as must support for visually impaired and hearing impaired people, so that participation is equal for all. The method of participation is also crucial; not all patients will be well enough or able to attend an event or meeting, so the use of Skype/video-calls or basic phone calls would be one way of resolving this issue. Other examples of reaching people is through the use of social media, through telephone conversations, video-conferences and tele-conferences, visits to their home, a representative attending social or support groups and talking to members, contacting people via email, online and paper-based surveys etc. All methods available should be utilised so that patients from different backgrounds, ages, abilities, technology use/understanding and with different needs can still be included. Patient leaders will likely be ones attending official events and meetings with professionals, stakeholders, board members, CEOs etc. and taking active roles, therefore access and communication needs must be provided for, choosing venues with wheelchair access and disabled toilets for example, as well as providing materials in formats that accommodate the hearing and vision impaired, and being prepared to accommodate support workers who may be a attending with the patient and to accommodate equipment patients may need to bring with them. Reimbursement for expenses for patient leaders attending events and meetings should also be considered. Many patient leaders, some of whom may be unable to work and reliant on benefits, could struggle to meet the costs of public or private transport or need some reimbursement for support workers if it exceeds that which is funded by their personal budget/care package. This should be considered in order for participation to be possible and inclusive of all needs, abilities and backgrounds. There’s a lot to consider when including patient leaders, but the benefits outweigh potential costs in a big way; the benefits and positive impact of patient leaders is immeasurable. 
Patient leaders are an invaluable tool in healthcare, and should be utilised throughout the NHS on every level. Patient leaders bring a unique perspective to the table, one which is underrepresented, and its impact and the power of the insight it provides vastly underestimated. Patient leaders should be an integral part of the planning, decision-making, commissioning, developing, improving and functioning of the NHS and patient leaders given the recognition they deserve for how vital a role they play. Patient leaders will not only improve the NHS itself, but bridge the gap between patients, the public and the NHS and hopefully Patient and Public Involvement will continue to grow, especially with the recent release of the NICE guideline on community engagement ( Most of all, I hope that patient leaders will become an intrinsic member of the NHS workforce and that Patient Leader is a role that gets the all important recognition it deserves. 
Patient-centred care is the way forward in patient health and social care; likewise, patient leaders are the way forward and a necessity for a truly 21st century NHS. 
Lucy Watts MBE
Announced as one of the top 50 Patient Leaders by the Health Service Journal Awards (July 2015).

If you would like to request my services as a patient leader please don’t hesitate to contact me. I can give speeches, attend meetings and events, write pieces and appear in videos as a patient leader myself, or about the use of patient leaders and public/community involvement.
To see an example of my work, you can read about when I co-chaired an event at the Department of Health in December 2015, the Young People’s Health Partnership NHS Takeover Day, alongside Jon Rouse – click here
Want to learn more about patient leaders? See the below links to the Health Service Journal articles on the subject to find out about what patient leaders are and what they do. 

Patients offer so much more than just feedback:

The Quiet Revolutionaries – Patient Leaders:
Patient Leaders are the powerful voice that drives change:

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