How you can help us
It is only with the support of people like you that we can continue to care for our patients, their family and carers.
Help shape our services
If you have experienced our services, hearing your views is really important to us. We have a number of groups you can join, which meet at the Hospice and include patients, family members, carers and LOROS staff.
Patient and Carer Participation Group
The Patient and Carer Participation Group (PCPG) meet 4 times a year. The group consists of carers, patients and members of staff representing a range of LOROS services. Our aim is to help make LOROS the best place it can be for patients and their families now and in the future.
Patient Information Group/Readers’ Panel
The Readers’ Panel reviews new and revised LOROS information leaflets. The panel reviews the language used, the layout and presentation and assesses it’s appropriateness for the targeted audience. The group also works to ensure appropriate literature is distributed externally.
Michael Jones, a current member of the group, shares his thoughts:
“When I was given the opportunity to join the readers panel I was very happy to do so as this is my way of giving a little back, join a great team and hopefully improve patients and carers experience on this journey that none of us wanted to start. LOROS aim for never-ending improvement and it's an honour to be part of this.”
Research Patient and Public Involvement (PPI)
Research at LOROS aims to improve care for patients and their families. Research PPI consultees play a key role in developing new projects that will improve the care of patients and families and the skills of staff that support them. Research PPI consultees help to decide on the importance and relevance of the topics that the researchers are planning to study and the research questions that the researchers are seeking answers to. They also guide wording of participant information sheets and other study documentation and help researchers to assess the potential burden and impact of participating in a study. Through their own knowledge and networks they aid participant recruitment and support the way in which research findings are disseminated.
Dipti Patel, a current Research PPI consultee shares her thoughts:
"I've seen firsthand how important it is to consult the public and patients on proposed research projects. It allows the hospice to obtain a balanced view on research and ultimately improve care practices for patients. Such a great way to get involved in the development of services."
If you are interested in being a Research PPI consultee you can contact the research team on firstname.lastname@example.org or Telephone: (0116) 231 8498.
Help shape our training
Every year our Education department helps to train health and care professionals, teaching them about end of life care. It is very important that the trainees have an understanding of what it’s like to live with a terminal illness and the impact that this has on the lives of patients, their families and carers.
If you have been a carer for someone and feel you could talk about your experience in education sessions with trainee doctors and nurses, then our Education department would welcome your input.
Veronica talks about her experiences:
“When I heard that the LOROS education department was looking for bereaved carers to talk about their experience of end of life care to fifth year medical students, I knew instinctively that this was something I was prepared to do. It was my way of giving something back with the hope and aim that this would help to positively influence their practice in the future. It was an informal chat reflecting on my parents’ end-of-life care with a small group of medical students. A LOROS education facilitator was also present.”
Share your experience
One of our biggest challenges is raising awareness of the work we do. When promoting or raising awareness of our services, what we find most beneficial is when patients, family members and carers, share their experiences with others. This can range from providing information to include in LOROS Matters, on our website, to help promote events and contributing to newspaper articles. Accessing hospice care can often be a scary thought, however, sharing these experiences is a fantastic way to dispel some of the myths surrounding hospice care and often help encourage patients and their loved ones to find out more about the services LOROS offers.
We are always looking for patients and families to share their experiences of LOROS to help raise awareness of the care and services LOROS provides. Would you be willing to share your experience?
Here's why Kamini Raja wanted to share her experience:
“I think it’s really important to let people know that there are organisations out there which can help support people with these illnesses and conditions, rather than people sitting and suffering in silence. I always try and shout about the support I have received from LOROS but people are scared about talking about end of life care, so I think it is important to share positive experiences. I always try and read other experiences too and often you can relate to what others are going through.”
Find out how you can share your experience
Read some of the experiences that people have already shared