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Pre-workshop reading: leading a rare patient group 

22nd January, 2020 – RCPCH, London


Thank you for registering for Findacure’s upcoming workshop on leading a rare patient group – we are all really looking forward to seeing you in London on January 22nd.

To ensure all attendees are able to start the workshop on the same page, we have prepared the following pre-reading materials which you may wish to familiarise yourself with before the day. These materials will help prepare you for the topics and exercises that we will be covering during the workshop.

Additional materials will be available on the day and will be shared on our website, e-learning portal and YouTube channel following the event.

You can find definitions of any terms that appear in purple in our glossary.


Leading a rare patient group








Introduction to leadership

The following overview is designed to give attendees a basic introduction to leadership, some basic theories and styles, the difference between leadership and management and leadership in a patient group context. We encourage you to read through and note down any questions you have for the workshop. You can even submit these questions in our comments section below, so we can try and address these areas directly during the training. 


What is leadership?

Leadership is defined as a process by which a person influences others to accomplish an objective and directs the organisation in a way that makes it more coherent and cohesive.

A leader can operate in a variety of contexts, it could be a politician pursuing a cause through passion, a business executive developing and executing a new strategy or someone creating and coaching a sports group. Leaders can be leading something big or small, yet it is the attitude and skills they have that define them as a good leader.

Leadership theories

Over the past 100 years, interest in the psychology of leadership has increased. As a result, different leadership theories have been introduced to explain why certain people become great leaders. Such theories often focus on the characteristics of leaders, but some try to identify the behaviours that people can adopt to improve their own leadership abilities in different situations. Here are a few examples of some classic leadership theories:

  • ‘The great man’ theory- According to this theory, certain people are ‘born to lead’ and are therefore born with all the necessary characteristics needed to be a successful leader such as charisma, confidence, intelligence and great social skills. This approach sees leadership as inherent and therefore something that cannot be learned easily.
  • ‘Situational’ theories- these theories state that leaders choose the best courses of action based upon situational variables. Different leadership styles may be more appropriate to different types of decision making or problem solving circumstances.
  • ‘Management’ theories- These theories focus on the role of supervision, organisation and group performance. They base leadership on a system of rewards and punishments whereby when employees are successful they are rewarded, and when they fail they are reprimanded.
  • ‘Behavioural’ theories- These are based on the belief that great leaders are made, not born. This focuses on the actions of leaders rather than the mental qualities and traits they are born with. Accordingly, people can learn to be good leaders through teaching and observation.

Nowadays the focus is more on teaching people to be great leaders, as there is more belief in the behavioural model compared to the ‘great man’ theory.

Different styles of leadership

Alongside the theories of how people can become leaders there are also many different styles of leadership, each with different levels of effectiveness:

  • Democratic leadership– Commonly effective

Within this style, the leader makes decisions based on the input of each team member, so that each has an equal say on the direction of a project but the leader makes the final call. This is one of the most effective styles as it allows lower level members to exercise authority and learn skills for later positions they might hold.

  • Autocratic leadership– Rarely effective

This is the opposite of democratic leadership as the leader makes decisions without taking input from any lower level members of the team. They are thus expected to go along with any decision the leader

proposes and their expertise and ideas are not listened to or used effectively.

  • Coach style leadership– Commonly effective

A leader using this style focuses on identifying and nurturing the individual strengths of each member in their team. They focus on strategies that will allow the team to work more effectively together. This is similar to democratic leadership but puts more focus on the growth and success of individual employees.

  • Laissez-Faire Leadership– sometimes effective

The French term ‘Laissez-Faire’ translates to ‘let them do.’ Leaders who utilise this style give nearly all authority to their team members. This can empower employees by affording them trust and freedom, however it can also lack direction, limit development and overlook critical growth opportunities within an organisation.

What are some traits of good leaders?

  • Good leaders motivate team members to be and do their best, empowering them to perform better to achieve goals. Positive motivation builds confidence within the team and members are better able to recognise and build their strengths.
  • A good leader is a great coordinator, they foster mutual understanding and enthusiasm within the team by harmonising organisational goals with the individual interests and skills of the team members.
  • Leaders act as key representatives for their team, cause and goals. A good leader can therefore represent the organisation in the best way possible.
  • Leaders facilitate change and progress, they are able to convince people about the need for change and taking risks to succeed.
  • Leaders are proficient goal setters, they set goals and guide others to achieve them.
  • Good leaders have high emotional intelligence (EI). This means they are able to recognise and control their own emotions, while adapting emotional responses to different situational needs. A leader’s level of EI can have a large impact on their relationships, communication styles, team management, and general interactions within the organisation.

Overall, good leaders are team and people orientated, they are good at communicating and should have a positive and inspiring influence. 

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We’ve prepared this section in a handy document for you to download.

What is the difference between leadership and management? 

There is often a lot of overlap between what leaders and managers strive to achieve, they both exist to:

  • Mobilise resources
  • Accomplish a goal or multiple goals
  • Explain vision
  • Be organisational representatives and figureheads
  • Motivate others

But there are also features that make each role distinct:


  • Policy and procedure
  • Counting value
  • Managing work
  • Directs
  • Maintain stability
  • Plans details
  • Tasks orientated
  • Rational
  • Copes with complexity


  • Vision and strategy 
  • Creating value
  • Leading people
  • Asks questions
  • Takes risks
  • Sets direction
  • People orientated
  • Inspirational
  • Copes with change

Leadership in a patient group context   


Why do patient groups need good leadership?

  • Small SizePatient groups are often small organisations or charities that are growing constantly. They need good leadership to define the direction of growth and develop a strategy that they will convince and inspire others to support.
  • Communication and collaboration- As patient groups often operate within the wider rare disease community, a confident communicator makes a good leader as they are equipped to forge relationships and drive collaboration to push forward the work of the community.
  • Challenging circumstancesSmaller charities exist within the context of the social services sector, this means their voice as a small charity can sometimes be drowned out by larger organisations. Smaller organisations therefore need a leader who is prepared to speak up and get their voice heard.
  • Imagea good leader acts as a professional representative for the organisation. This is important for patient groups wanting to establish relationships with corporate partners, clinical services and pharmaceutical companies.

What skills are needed for leading a patient group?

  • Communication and interpersonal skillsIt is important for a patient group leader to be able to communicate with a range of individuals from different backgrounds with diverse experiences and outlooks.
  • Emotional intelligenceA patient group leader must be able to understand emotional differences and responses and empathise with different people’s needs
  • Organisation A patient group leader must be organised in order for progress to be made and goals to be reached.
  • Time managementIt is very important that a patient group leader is good at managing the position alongside a personal life, work and family commitments.
  • DelegationA good patient group leader should recognise that they cannot be good at everything or do everything. Instead they must effectively utilise the skill set within their team.
  • Project managementGood project management allows for the effective completion of plans and keeps initiatives on track along with targets.
  • ResiliencePatient group leaders should be able to cope with the challenge of leading a small organisation and maintain enthusiasm in the face of adversities.
  • PrioritisationA key skill of a good leader is the ability to know where is best to direct the attention of the patient group and what direction is most relevant to the group’s goals.

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What kind of leader are you?

This Strengths test can help you to understand your strengths and weaknesses, which can be a great way to start thinking about your most comfortable leadership style. It will be useful for you to do this test prior to the workshop to get you thinking about what you personally like to improve and focus on.

This can be paired with a reflection activity-

  • What are your key strengths and how can they be useful in a leadership role
  • What are some of the less obvious skills you have and how can they be adapted
  • What do you see as a weakness and how can you realistically strengthen it to improve your leadership skills
  • What are your strongest skills other than leadership specific ones and how can these be used in another role in the patient group context

You can also test your leadership style.


Questions to think about in advance

The purpose of the afternoon training session With Julian Stanley, the director of Clear Thinking is to help you develop your leadership capacity and provide you with ideas and guidance on becoming a more impactful & confident leader.

The session has been designed to help you gain new insights into defining your primary objectives and to assist you in achieving your goals and fulfilling your organisational mission.

We will explore ways to help unlock your potential as well as that of your board and any staff or volunteers working alongside you.

Everything discussed will be confidential. We hope this will help you to participate and share your excitement, knowledge, and concerns openly with your peers, in a spirit of mutual learning and support.

These questions have been designed by Julian to get you thinking about what you would like to get out of the sessions in advance:

  • Q1: Which aspects of leadership do you enjoy most in your current role?
  • Q2: What do you perceive to be your greatest strengths as a leader?
  • Q3: Which aspects of leading and managing your organisation do you find most challenging?
  • Q4: What are the top three leadership and management issues you face in your current role?
  • Q5: Name the areas of leadership you feel you need to develop and learn more about?
  • Q6: Who do you turn to for guidance, advice and support?
  • Q7: What steps do you take you look after your health and wellbeing?
  • Q8: What are you hoping to gain from participating in today’s training session?

If there are specific topics you would like Julian to touch upon during the workshop, please feel free to email him directly at [email protected]

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Discussion forum

If you have any questions or topics you would like us to address during the workshop, please note these below.


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