To understand how best to help and support patients and carers, Health Care Professionals need to know what patient and carer needs are. The aim of the forum is to help put forward ideas, issues and concerns that really matter to those patients and carers and in fact anyone who users the cancer services.
The commitment needed and the tasks undertaken will vary with how involved you want to be and what is required. Currently we are meeting once a month “virtually” for an hour and then there are e-mails to read. As we gather momentum and opportunities arise, individuals, or the group could be asked to be involved in a variety of different things.
- Putting forward ideas to streamline procedures.
- Explaining what information is the most essential.
- Reading/ reviewing documents.
- Discussion groups.
- Detailing addition help that is needed.
- Work in a small group to implement an idea.
- Providing feedback.
- Answering questionnaires.
It will be very important to understand what is required and the time commitment needed before agreeing to do a task. Then, equally important to be sure you can meet the requirements and give the required time. Different skills will be needed for different tasks, for example, joining in group discussions, working in a cooperative way with others, contributing to meetings, putting forward ideas.
Whatever you do, support will be available. ANDREA PARTRIDGE is the Service User Involvement Coordinator and will be the first contact point. Andrea.email@example.com
Our son. Neil, died as a result of cancer after discharge from Preston Royal Hospital. It was a nurse at the hospital who arranged for him to fulfil his final wish and die in his own flat. She arranged all the necessary support, including co-ordinating his End of Life Care with Social Services, and he had a good death, in the place of his choosing.
I have spent the 12 years since then working with National charities and research organisations as a lay volunteer, but it has always been my hope that I could work with and in the hospital which did so much for Neil.
One thing which strikes me immediately is that the Trust really wants to hear patient opinions and to welcome patient involvement in many aspects of the hospitals’ work. We can provide unique insight into the way that documents and procedures may be perceived by patients and carers. Clearly this is an organisation which welcomes the patient voice. I find it very rewarding, and a suitable tribute to the memory of our son to be able to contribute to the work of the trust in this way.
As a person with lived experience of cancer it is good to get involved with other patients, carers and health care professionals. Working together as one team gets much better results for everyone. I am involved with the LTH Cancer Patient and Carer’s Forum amongst other things and it is fair to say we are a friendly bunch who help and support each other. We work with the health care professionals and opportunities to be involved are very varied. I have recently been involved in the process of appointing a new Associate Director of Patient Quality, Experience and Engagement and I am involved with commenting on information leaflets for patients and carers. There are many other opportunities and all are worthwhile. There is support available and the amount of time you have to give does not matter. Every little helps and all contributions are worthwhile.